a little bit of heaven

Welcome 2012!

2011-12-28T11:15:00.000-08:00

I pray that your year ends with peace and grace! That the new year holds whimsical and magical moments with all the reality that it always brings. I pray that we all follow the path that we have chosen with the wisdom of years and the knowledge that we are going in the direction our heart and souls needs to find some fulfillment!

Happy New Year!

Jeff Johnson - I call to you

2011-12-24T11:08:00.000-08:00

An Ode To My Nieces - More like a Homage!!

2011-12-17T08:32:00.000-08:00

There is a special moment when you hear the words “It’s a GIRL!” and you know that you are an Aunt and you have the opportunity to spend some furiously wonderful time with a human being who is related to you by blood and will adore you as much as you adore her!

The first time I became an aunt I was still a kid myself and ran up and down the block announcing the good news – the birth of my new niece. She was beautiful from the first day with big saucer brown eyes that shown with laughter when you looked at her. She was smart – aren’t they all – precocious and had her dad wrapped tightly around her little finger. She in turn gave me a model great-niece (no really, a really gorgeous model) and an adventurous great-niece who flies, travels and soars through the air and swims with underwater creatures. They are both amazing young women who will make a real mark on the world as their mom has done.

Then there is the first niece of a sister – and she was another charmer – who adored being photographed in any assortment of clothing/costumes. She loved eggs made by her mom and visiting. I loved taking her places and taking her picture. She was fun to test and discover quantitatively how brilliant she was/is and even went to school with me to the delight of my students. She was a marvelous child who rubbed my feet when I had an operation on them. She like her siblings always made me feel like a special aunt. She gave me a great-niece who is beautiful like her mom and exhibits a lot of the talents and abilities that I watched in her mother while she was growing up.

Then there is the traveling niece from another sister. She began her travels as a baby and continues to be on the move to this day. She is the consummate traveler. Her eclectic tastes fall within my purview and then skyrocket out into new and better places that scream today’s world and pop. She enjoys a lot of the same things that have occupied my life and filled my memories – like travel, video/film, music, concerts, crushes on musicians and being a female Hamlet with education as a continuous hobby. I love this lady and it thrills me to see her with a cosmo or posting her fav singer as a FB movie. Her love of variety and diversity in her life is something I cherish about her – but then I would cherish her anyway – she is my beautiful niece!

Then we have the doctor in the family – she was a picture niece – since she lived so far away and we only had one occasion to meet and spend time – maybe we will again in the future. She is the musician/pharmacist/scrap booker/animal lover (wait – they all love animals) actress/niece! I have been able to keep track of her many high points thanks to her mom and pictures and email. She is another beauty and someone with whom I would love to spend more time.

The last two nieces I knew as little girls before they began school and I couldn’t begin to tell you what joy they brought to my life. They are bright and beautiful like the others and yet they are part of another generation – and yet still nieces. I enjoy following them on FB and seeing what interests them and their hearts! I look forward to seeing them again as well.

Then there are the nieces through marriage – the beauties who married my nephews and brought such joy and love into our family and more babies to love! I am so grateful for each of you and the special things you add to this group. We have some wonderful mixture of females who bring such amazing gifts and are unbelievably creative, talented women. And the amazing young women whom I call nieces who I know through the marriage of my brother to their mom and grandmother. Thanks for bringing even more to my life!

I am lucky to have other great-nieces who are not within visiting distance. Once again FB has allowed me the chance to see them grow up and become gorgeous young women in Florida, Wisconsin, Virginia and Michigan. They tickle my soul with their adventures and updates – and I so look forward to seeing whom they become as they continue on to college and life beyond.

I have nothing but FUN nieces – they all have different directions in their lives yet they all exhibit the same loving, caring side that makes them a part of my family. They are adventurous, ambitious and eager to make a difference in the world, through music, art, film, video, social work, medicine, theater, education, police work and the myriad of other activities they enjoy and maintain in their daily lives.

I may not be the fun Aunt I once was – but you are all still the fun children I love and with whom I love to spend time and learn about your newest adventures and loves and dreams! Thank you for sharing!

“Just because somebody doesn't love you the way you want them to doesn't mean they don't love you with everything they got”

I do love each of you with everything I got! Though this is far from an Ode it was fun to remember each of you, and think of how you make me smile, and my heart flutter with love because you are my family and my nieces.

HAPPY HOLIDAYS to all you beauties!

Today

2011-09-23T11:07:00.000-07:00

“Life's real failure is when you do not realize how close you were to success when you gave up.”

Did I tell you how hard it is to have feet of clay – when it rains they melt a little! And it has been raining a lot lately! Makes it difficult to walk through the day without sticking to areas that I might like to rush past and through!
There was a moment when I believed that my love would get me through the hardest day – there was a time when I knew that I was loved and able to do anything I set my mind to do – there was a split second when doubt entered – and I allowed it stay!
I gave the doubt as much credence as the love and loving feelings and secure knowledge that I was and am capable of doing and being a great many things. I let that little black cloud into my thoughts and then I pondered it, indulged in it and let it become the focus of my thoughts and actions. Poor choice! My emotional immune system was down, and instead of taking a booster to get it back in shape, I let myself become weaker and weaker – thinking it was only a moment, then a day then a week, then a month and now whoa – well too long!

Too long …

The daily routine is the same and yet always different! We are trying a new supplement to see if it can help him to sleep at night – it seems to work only when the daylight comes up!

He is my heart --- and even though lately I have been a nightmare for him and myself – I still love and need him. I was asked if I had considered a nursing home! Have and can’t! Does that even make sense? Do I want to allow myself some time off or not? I do- but not like that! I hate being so unbelievably nasty- but at 1:00am then 3:00am and then 5:00am I have lost all ability to be kind and loving! And that bothers me! That breaks me a little the next day – he is after all – all I really have to do! The house can and is falling apart – the car won’t go on rainy days and we (maybe me) miss seeing and being with people and enjoying life!

There has been unbelievable change for the good in his behavior and abilities as well as the normal decline due to the illness. He is more alert – and really can contribute- when he can hear and know what is going on. I asked about the ability to hear when he is at the pool – he can’t – the same lousy acoustics that we usually encounter in a restaurant where the words get lost in the air and never make it to his hearing.

But - but, but!

I was feeling pretty alone – pretending everything was OK when I was falling fast and hard – even the physical fall didn’t stop me from the continual motion downward and down and down to the blackness of that doubt – to the edge of sanity!
There is a spot where you can actually take a look at yourself and see the real you and the pretend you and the possible you and where you have the ability to choose … to decide to make a movement that will get you to the next step in whichever direction you choose.

I am there!

I know there are people who care about me. I am somehow caught in that morass of wanting to have my husband back: the man who laughs so hard that we snort and tears run down our face; the guy who made me feel special and saw to all the little things to make my life easier and happier; the man whose smile lit my life with joy! And knowing that what I have it what I should appreciate and accept!

Acceptance of long term is hard. That is the problem – I am used to being able to make it through the time of discomfort – make it to the next level – but here – the next level is wheelchairs, bedridden, death!

I don’t want to go there – not now, not tomorrow, not ever! There is the disconnect, there is the problem.

So I look at the rain outside and see my feet are a little more solid today! Not that I am … but I am at least looking at the directions in which I can go – and seeing who I am in a mirror that reflects back with light and shadows a possibility of still having the opportunity of sharing some of that joy! I look up and hope that I can escape …

"I haven't failed, I've found 10,000 ways that don't work." - Thomas Alva Edison

Playing For Change

2011-03-04T10:54:00.000-08:00

2011-02-20T08:15:00.001-08:00

http://www.orlowskimurals.com
to see a compilation of Dennis' work

2011-02-12T09:17:00.000-08:00

It is easy to be lulled into a state of contentment- it really doesn’t take much! We were happy and getting through each day – not like before he was ill– but like now! Sleep, pills, shower, dress, some activity and then eating three meals and possibly a trip to the store, doctor or somewhere to get out of the house.

We were content with exercise two days a week and I had a chance to not have to worry about him or how he was – because I knew I would be the first to hear if anything went wrong – that was a given. Then circumstances changed and that no longer was a viable alternative and we went through more changes. We found other activities and distractions to keep us both going. And once again we were happy – or at least content.

Then little problems happen and his anxiety goes through the roof and we are in a new chapter, which looks and feels a little like yesterdays nightmares, but comes with new drama and emotions. A trip to the doctor to allay his fears becomes one that creates new and more horrendous fears. We are locked into some strange land where hallucinations rule and we are not able to communicate because he sees me as the enemy, threatening and making him feel insecure. If I speak to him as if he was two or three he responds with almost a whimper, but if I try to be adult and ask him what I feel is a credible question, I am accusatory and mean. This is such a hard place to be and accept. The man whom I love is reduced to a small boy, afraid of bugs, sounds of cars and trucks and things that go bump in the night. He frets through the night grabbing the sheets and twisting and turning them until I am forced awake due to the lack of bedding and the bouncing from the other side of the bed.

I’ve discussed getting another bedroom ready for him and he is adamant that it is not an option. I almost believe he would roam the night looking for me- until he found me.

We have tried diet and drink to help with his rest, but when he is determined to do what he wants, he just goes and hides in the kitchen and eats in the dark – so he won’t be found -so childlike.

And then – out of nowhere – the man I know is back! And it’s as if all the things I was thinking are thrown out and we are talking and having a good time together.

And then, he is gone again!

I work to keep him around with positive things and people – but we are on a schedule that is never the same. To meet the needs of being around others I need to coerce him to rise when he is still in half state of slumber. I, on the other hand, am awakened too often and feeling the strain and lack of continuity of sleep for myself.

I could let him sleep, and just make sure he takes pills, eats, showers, and sleeps, but that is not really living, is it? Have a gotten so far away from people and the world that I am becoming a caregiver and no longer a wife, lover, friend?

He is my Valentine! No matter what happens, what I have to suck up, I will be there, next to him. I will wipe, wash, make meals, clean up, help move and lose sleep - I will be here because I am his friend, lover, wife and partner for life! I will not allow him to sleep away his life- there is still too much that is vital inside of him that needs to be shared with so many others!

Happy Valentine's Day to all people whether you feel loved or not - you most likely are by someone, somewhere!

We made it through again!

2011-02-11T15:55:00.000-08:00

"To a brave man, good and bad luck are like his left and right hand. He uses both.” - St Catherine of Siennasal

It's been a different kind of week - and all because he is still suffering from unusual fears! I wish I could make the fear go away

I thank you, my dear friends, for your prayerful support.

On Wednesday, John was scheduled for a simple procedure. Somehow, it turned into a slow-motion nightmare from which I prayed I would awake quickly.

While still in the waiting room, he seemed to have drifted off to another place, and was not as responsive as usual. I attributed this to his fear of the procedure and his remembering the last time we were at the same surgical suite where he was very unhappy with another procedure, and showed it by nearly breaking my hand squeezing it until there was no circulation. So when they called him after he had been waiting nearly forty minutes – he was gone! I just didn’t know how gone!

I told the girl he would need assistance disrobing and they immediately asked if I wanted to go with him – not really – but yes, I went.

We got him into a gown and slipper socks and into the bed to start the bp cuff and give him an IV. His bp was 189/169. SHOCKED! He is normally 90/62… I was close to panicking myself. They put in the IV and it went up! 199/176. What the hell was going on?

He was saying, “yes” to me but staring at the ceiling and not really acting like he was there! He had gone to some horrible place where he was scared out of his mind and his bp was rising. I talked to him, rubbed his head, feet, chest, and tried everything I knew had ever worked with him. No contact.

The anesthesiologist came and was an absolute jerk. He made the situation worse – not better, and as we had just seen his bp come down- it soared as this man talked about possibly needing to intubate John and needing to have him go to the hospital – All I knew was that either this was going to happen now – or it was never going to happen under these circumstances, ever. My greatest fear was that he would stroke out on me. He had two strokes that threw me several years ago – and I could see him going off – face full and red – and his eyes glazed over! I sent a text for prayers and then went back to arguing with the doctor. "Either figure out how to do this, or release us and we will go elsewhere!"

They figured it out! After almost three hours – he was taken into the surgical suite – for the ten-minute procedure. Then I was called back in – and sat until he was awake enough to get up and go home!

It should have been thirty minutes – it was another hour. We were given the good news that everything looked good but a sample was being sent out to the lab and they would call if they needed to see him again. They gave us a script (which should not be used with his Parkinson’s meds (but they didn’t know or care).
When I asked him about the time – he said he was by himself and I wasn't there! OK! So, that was pretty scary.

We went to his neurologist yesterday and his bp was 148/85 – High but not as bad- and he was conversing and rational – but very tired! We also learned how to administer the drug so there would be the least amount of problem with his other meds – and he even passed a test to become a possible participant in the study for Parkinson’s – that he has always wanted.

Today he slept until noon – and seems to be better – some sweating and shaking – more than normal – and we were called back – he needs to go and have another sample taken on Monday – to double check the results – Good Lord!

His bp is down to 120/85 … and he spent two hours drawing a picture, before getting a little shaky, sweating and needing to lie down – he is napping and watching Oprah.
I don’t know if I would have been able to make it through all this without knowing that all those goods prayers and thoughts were being sent up! Thank you for being “the wind beneath my wings!”

I am ready for weekend – and I will let him know Monday a.m. that we are going out to the doctor’s so we can enjoy this time. Thank you, thank you, and thank you!

“The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing... not healing, not curing... that is a friend who cares.” Henri Nouwen

MIRACLES - I'm always looking for a miracle

2011-01-14T11:05:00.000-08:00

Friday January 14, 2011

There is a light snow falling outside – it looks like a movie – not real! Too much media for these eyes! Cold and continued cold – it’s January in Michigan – get use to it! OMG- it’s been over 60 years and it really does vary – “seasonably cold” is what the weatherman is saying on TV! 20s and then the teens! OK – it is January!

Foster puppies and animals from the Humane Society for six weeks to acclimate them to being with family! WOW – always a new scheme – new way of dealing! This is pretty cool for people who can only have animals for a short time – but any real lover - well – how can they give the dog or cat back?

Auto Show is Detroit – it’s the yearly event that I remember attending with my grandfather so many years ago. He took my brother and I and we walked around and saw the vehicles on display. It was nothing like it is today! No screens – no technology – revolving turntable and talking model versed on the car. That was the magic! We – or I have not attended in many years! I have no desire to go! The last time I went to the Auto Show I was roughly attacked by my date on the way home – so I got out of the car and walked; and then stalked by him for several months! Guess – it changed my attitude toward the event. Forgot that --- let it slip into the background and didn’t realize how it really had effected my life.

John Paul II will receive beatification in May because of the complete remission for a nun who suffered from Parkinson’s. I told John we need to be the miracle that makes John Paul II a saint- or Solanus Casey – we weren’t sure if he has received sainthood – but that I can check on the Internet. No it seems they are still working on his beatification – he was such a powerful man of prayer in Detroit- even my husband’s family went to him and believed in the power of him - helping to save his mom from TB.

For one moment this morning I believed that we could still fulfill our dreams and create an educational center. I believed that we could live our lives as we did and not as we have been during the past few years! A miracle- I believed in a miracle and that it was possible and we could make money and movies have vacations and travel and all the dreams once again were real!

For a moment this morning I believed that he didn’t have to sleep for 16-18 hours daily – need help with everything – that he could be independent and happy – and whole! For a moment I saw my partner as my partner and not someone who just needs me to console him when he is afraid from unknown sounds, clean when needed or making him food and cleaning up after. For a moment I saw us doing more than eating, bathing, dressing and sleeping – and then going to doctor’s appointments and returning home tired. We need more in our life- but when I try to introduce it – he goes along for a moment and then reverts to the original script. This makes it difficult some days and horrendous others because of wishes that go unfulfilled. So, if I accept rather than try to change- if I let it be another thing that flows off rather than ruffles- I can get through the moment and then the day!

I still want so much for him and us! I used to fight for it – and I’ve lost some of the energy- I have no way to re-energize! I need to find that again!
Miracles – Marianne Williamson talks about them like they are everyday occurrences- I want to believe the same!

MIRACLE -noun
A surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency : the miracle of rising from the grave.
• a highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences : it was a miracle that more people hadn't been killed or injured [as adj. ] : a miracle drug.
• an amazing product or achievement, or an outstanding example of something : a machine which was a miracle of design.
ORIGIN Middle English : via Old French from Latin miraculum ‘object of wonder,’ from mirari ‘to wonder,’ from mirus ‘wonderful.’

WONDERFUL! That is how I will look at the snow, sun and cold! Wonderful, is how I will see my husband, whom I love despite the challenges and setbacks we encounter. So – another day and another opportunity to try and get it right!

"Being relaxed, at peace with yourself, confident, emotionally neutral, loose, and free-floating- these are the keys to successful performance in almost everything you do." - Dr. Wayne Dyer

A happy New Year!

2010-12-30T16:34:00.000-08:00

December 30, 2010

“A happy New Year! Grant that I
May bring no tear to any eye
When this New Year in time shall end
Let it be said I've played the friend,
Have lived and loved and labored here,
And made of it a happy year.”
Edgar Guest

2011

There was a time when I quaked at the thought of 1984, due to my extensive reading. Now I am amazed that all of the projected futuristic buildings and clothing are not here! Silently glad – because I am now too old to enjoy the fashion and minimalistic housing described in a lot of the fiction.

Another year – and the first year of really being retired – not just on a sabbatical from teaching – but done!

I’ve been avoiding really dealing with it until recently – and find it is not as painful an admission as I would have thought. I can admit to being a people-pleaser – and an overachiever – and all the other things that made me busy for 20 out of every 24 hours. Now, I am beginning to realize that I do not have to be busy- I can do nothing and I am still doing something- because I am back to thinking and listening and trying to make sense of things around me. I am not back to a contemplative state – and probably won’t get there for a long time – but I am far from the madding crowd. I cannot believe that I inwardly thought I would once again dive into all the same activity. The daily tasks are pretty tiring as it is.

So, for 2011 – I look forward to becoming more like I am- rather than who I could be – living for the moment and experiencing it with an open heart – not worried about yesterday or tomorrow.

I wish all I love, much peace, love and happiness for their new year! May the blessings come to you, who you are ready to receive them!

Peace, Love and Happiness

2010-12-25T14:04:00.001-08:00

Christmas – December 25, 2010
Another day of celebration and another day when I sit here while my dear one rests in bed. He is not one to complain- but his unhappiness does make him more tired and complacent than usual. I feel sad for him. It’s not as if this is unusual. Rather this is the norm. He has called his cousin and brother and lost all of his energy to make any further attempts at communication. He was not always like this – but in some ways he has been trained to be this way.

I come from a mother who believed in the magic of Christmas and went to the extreme to make it happen for us – whether we were four or forty. She was the one who made the sounds, smells and decorations of Christmas more powerful, more pungent, more filled with love. So, for me holidays – and especially Christmas was a time of family, friends, gifts, trees, lights, food and time spent with people you may only see once a year. It was truly a time that I looked forward to- despite the extra work and chores that accompanied the holiday.

When I married we both loved to start at Thanksgiving to get our Hallmark keepsake for the year – around our anniversary. We put up a tree, sometimes in the presence of the youngest son, who on occasion, even helped with the trimming. We had and attended Christmas parties and drove miles to spend time with family and friends. We went out and checked out the decorations in the neighborhood and even recorded them to use on our TV program.

Even when my family was no longer a part of our lives, we had celebrations with the kids we taught all year- with a party, making ornaments and decorating the floor on which we held classes.

Then that ended.

We put up our own tree, once since that time. We had the neighbors for Christmas dinner one year – that was a real treat – until cousin someone came lit and talky and made us all have to bite the inside of our mouths to prevent us from laughing out loud.

So, this Christmas we have been blessed with the company of those who want to see and be around us. We miss the people we know are miles away and with whom we would enjoy to be around – but we will see them another time. The season holds no magic for being the only time I feel loved or love another. When the snow is gone BFF will drive over – and when the snow is gone- who knows where we will be on this journey … maybe running our educational institute – maybe on the road – maybe published- maybe working with others once again! Maybe just content to write, paint, exercise and enjoy each day!

Holidays are great by me – I can remember the past ones and smile and enjoy the memories. I can know that I am happy regardless of what others think and do. They cannot and do not make me happy- I wish them all the peace and love and happiness I have found being married to this man I love. He has shown me so much and I would do anything for him, to be able to enjoy his days till the very end, and believe in miracles -- that each day we have another chance to be happy.

Peace, Love and Happiness to all this Holiday Season – may all your wishes come true- mine have!

My dream bedroom

2010-10-24T07:18:00.000-07:00

My dream bedroom - space or movement and easy in and out - low bed - easier to get in and out - space - space and more space - Guess I need to manifest more space!
Happy Halloween!

It's a beautiful day in the neighborhood!

2010-10-19T14:46:00.000-07:00

The warm shining sun makes you unaware of the cool air that will hit you when you walk out the door ~ but it is worth the effort to leave the house and enjoy the crispness in the air and the feel of fall.

We are taking it one step at a time - and I am trying to stay in the moment - the moment that I am sitting here and typing and the moment that I am enjoying! I'm off to see the sun before it sets for the day! I need a picture of the tree turning beautiful colors before the wind takes all the leaves & provides the landscape with the bare branches that we get for scenery for the next several months! I hate to see them go - but I look forward to the colder nights and days! I'm ready!

As I sorted through today's mail as I walked into the house I caught sight of the Mother Jones mag - and it looked like Adrienne Barbeau from Swamp Thing on the cover and then as I took a closer look I saw it was Sarah Pallin - and I began to laugh and couldn't stop! There was nothing - but I laughed until I cried and had to sit down! So many thoughts so quickly going through the thought process and all ending with me in total laughter!

It was a good moment for me - you had to be here!

If I Ask You - Will You Help?

2010-10-15T18:35:00.000-07:00

I realized I have been doing the "we can do it ourselves" mentality, so as not to bother anyone else. We are not as independent as we pretend - but it is OK! No one will ever know - no one will be able to tell! We will keep up the charade and continue to do the best we can. Maybe I will learn to ask others for help - before it is too late to ask!

It is OK – a manifestation of …

2010-10-09T15:52:00.000-07:00

I was about to cry – to worry and wonder why? But maybe the trees were glistening that he saw – and maybe there was someone with him in the shower that he was conversing with– and maybe it was only a moment when he was somewhere else! But the moments are getting longer and the places are more remote from reality! It was a hard moment! It came and went and took almost three hours! It was only a moment – compared to the whole day! It was only the loss of a few hours - it was OK! It will be OK! It is OK! I am OK and he is OK!

It has been the most beautiful week - with warm days and sun and cool evenings for sleeping!

It has been a great week! It is despite the momentary lapses and trips - like being on drugs - but legal.

Happy Birthday & Anniversary to all this month! We will go to the Cider Mill and enjoy the fruits of Fall.

Peace, Love and Harmony to all!

And then we weren’t YOUNG anymore! Really – is that how you see it?

2010-09-05T11:58:00.000-07:00

Sunday September 5th 2010

Happy Birthday Tim-Let’s see this makes you 68 – wow – we are getting up there aren’t we! Not so much a question as an exclamation! Where did our youth go? We were just running around and drinking and staying out and partying down and doing all the things that crazy, wild and young people do- and then- BAM! We got here!

The day is sunny and seems to warrant a few hurrahs for it’s sun and cool air – the heat has not returned yet- it’s waiting for kids to have to put on a uniform and attend classes in hot, sticky rooms with no AC and no or little ventilation.

I am not returning and probably will never return to the classroom and it’s a bittersweet affair to which I am saying “good-bye”. I really do like people and I really like kids – they are so full of everything from the best to the worst. They challenge every inch of my core with their no-nonsense and bullish ways.

Now I am in the transitional period of my life – from the active and having every moment filled with something and or doing for someone – I am alone with my thoughts. I look across at the man I married so many years ago and see someone who is struggling to make sense of the day – and to be useful – and not feel discarded and tossed to the side.

When you are busy working you keep thinking – “Oh, if I could just have some time off – some time for myself!” and then when you retire either by choice or necessity – you wonder – “how the hell am I going to fill all the time I have?” So you fill it with inane things which make you feel like you are wasting your time – after all when you were working you were doing important things, things that demanded your attention and kept you from seeing all the things that needed to be done around you with your home, family or immediate friends. But upon reflection, those things to which I devoted so much attention and care are now gone and mean nothing. They were busywork in my life that kept others happy and at bay so they would leave me alone.

But the thing about teaching is that you are constantly around people – and to suddenly have your world become so small- just two – is sometimes the problem. It means a real transition and acceptance of things.

I am only asking of myself what I presumed my husband wanted in his life – and I am now aware of the poor insight I had into any of that.

You think you are being kind by providing people with all that they need to get through a day – someone to make them lunch, take them to water exercises and see that they are safe- you think that – but you have no way of knowing how the mind works –really works, because it has a way of sneaking some pretty amazing information past you without any hint of what it can do to your so-called “plan”. When I though he was OK – and I mean in the sense of physical – I was no taking into consideration his great need to be involved emotionally and spiritually in the world about him. He had become distant – I thought because of the medication and illness – but maybe it was because no one was listening to him. When I tried talking – I was really telling him- telling him how the day would go, who would be here with him and what was expected of him – not asking him, telling him. It was like this was his job and I was his boss and could control him like I felt controlled by my job – the paperwork that needed to be addressed and all the forms and crap that was part of accountability – for what and to whom? Maybe it was a subconscious cry to say, “We all need to have someone to order us around!” And yet, I know in my heart and soul that is WRONG! We don’t need another to tell us what is wrong or right – we know it in our hearts – unless we are part of the 3% of the population who are sociopaths. (no feelings of guilt or remorse -"...a pervasive pattern of disregard for, and violation of, the rights of others that begins in childhood or early adolescence and continues into adulthood."[Wikipedia)

But I meander, as I am wont to do! Bud would be telling me to stay with one voice and tell a story- but I think I have several that are attempting to flee from me before I can capture their essence and have it for a later date when I can mull them over and work on the verbiage and make them sing their own song. When you are a part of the everyday – you don’t have the time to consider what it means or how to make it better except in fleeting moments – but once you have the time – time and memory play an important part in making it all seem like a dream or nightmare- depending on the situation and you can either glorify the moment or demean it and make it the worst and most pitiable since the beginning of time. – Again –

He needs help with things that once were his pride and joy – replacing a battery. OMG! How that just about eats my soul like a drip of acid- burning and knowing how he handled and kept all the electronics for many others and us. Now – well – now he has his trusty Sampson tester and can check batteries from here to the end of time. We have a plethora of batteries that are working as opposed to the box within a box within a bag within a box that holds batteries of all shapes and sizes and we have no determination of whether they are meant to be recycled or can be used. It was a pretty pathetic case – and every time we were in a store he wanted to purchase MORE batteries – because he needed more batteries. It became an obsession – or so I thought! He remembers certain things as needing to be done and then others disappear like the clouds – pretty and taking shape for a moment before donning a new dimension and then disappearing totally from view - to become part of a mountain of indistinguishable forms and sizes. So we now have his 2-meter radio operational and all I hear is static. – But he is attempting to get something more from the small box – voices – emergency people chatter- anything to break the static that now competes with the choir singing and the water rushing from the washer as it goes into a spin cycle. All of these noises assail my ears – but maybe not his. We can get him a hearing aid according to the plan I read for our health care – maybe that will actually enhance his experience and allow us to do more.

Wayne Dyer said that people should think in terms wholeness and not disease. I do that when I am lying in bed and we sometimes are talking and it seems like always and nothing is changed – but then suddenly the bed takes on movement and he is struggling with a sheet to get up and out from under it – and all the fantasy disappears and I am back to the reality of where we are at that moment in time.

I just spoke with the birthday boy! He is in good spirits and sounds good on the phone – though his condition is deteriorating as well. His wife would like to attend a class reunion, but because he is not good at travel, even locally, and the cost for both is high and he cannot be left alone – she will not attend. I feel for her! There were many parties this summer I would have loved to been in attendance and because he was not available mentally and emotionally to go – we stayed home. There is a ton of activities each day and weekend – and he prefers to go to the grocery store and stay at the home. So I understand the change in social activity – and because – here we go- I don’t go to work – the change in my personal interaction with people … sometimes just hanging around them or having them hang around me. No time for pity! No time—we are off to get the net round of pills and food for the day and make our new schedule as exciting as we thought the old one was – in retrospect- as opposed to the curses we threw at it while in the middle of living it!

We are a crazy kind of people. Another day – another time – another thought!

Peace, Love and Harmony and Happy Days to the Birthday and Anniversary people in September.

All those who believe

2010-08-11T12:37:00.001-07:00

"All those who believe in telekinesis, raise my hand." Anonymous

August 11, 2010

It feels like I am floating – and someone else has said the magic words to allow me this sense of freedom. But in reality, I know that this feeling is because I am no longer acting like a slave master and demanding that I keep and maintain some unreasonable schedule as if I am also the slave.

Today, I stood in the shower alone, and was able to shampoo and wash without another person to take up the space in the stall and need my assistance with 90% of his shower. It was liberating – and I was even able to shave my legs without cutting myself. I could take my time and not feel the need to rush everything and actually enjoy the warm water on my head and back.

After I was cleaned – he was ready to get in and I did assist with his shower and then getting him out and dressed, but the mere fact that I had five minutes to myself was enough to make me almost giddy.

I realized when the positive ions were hitting my head and I didn’t have to consider whether or not someone was drowning under the water from the shower or shaking uncontrollably from the lack of warmth. I could luxuriate in the warm water and feel my muscles actually relax. I know that all those days when I dreaded getting into the shower and sharing the space and my energy it was because I was missing all the good that I used to enjoy from a warm shower, and primarily the relaxation that came from it. So for God only knows how long I have given up those moments and instead have worked to get us cleaned and out of the shower.

I have created the schedule because I wanted to make sure he was washed and dressed and ready for the day prior to my leaving for work – primarily because he becomes confused in the shower and exits the stall after getting wet and not washing, and can no longer keep his hands in the air to wash his hair or hold the shower head above him. And then there’s getting dressed and the dressing is not an easy task anymore either. He works very hard on all these tasks but no longer can perform them without assistance.

When I was working I was so focused on getting through the list of things to get done each morning that I barely paid attention to the emotion or feelings that went with the activity. Generally he was so out of it, because he was barely awake, and would just sit there and allow me to move his limbs as necessary. We awoke very early and showering and dressing were always done prior to coming downstairs for breakfast and the rest of the routine.

Now that we no longer have to rise before the dawn – and can sleep in – we still awake early and I get him to take as many pills as he can swallow before choking and giving up. Generally we change the linens and him and then he can lie down again and rest while the pills work their magic for him. Some days it is good and other days it is like he just cannot wake up. He needs to be prodded into getting out – and then he is slow for most of the day.

But there is a remarkable change in both of us! I no longer feel compelled to get everything done and under way before I am even awake. Doing laundry at 4:00 am is no longer done! I’m sure the neighbors are just as glad as I am about that! We still take the pills and try to keep the schedule for eating and pill taking – but other than the days he goes out for water exercises we do not have a set schedule and therefore have been taking advantage of the time to rest and read and do small things that make a difference but don’t necessarily show for the outside world. Cleaning out a drawer, a shelf or sorting and tossing out things – all make a small shift in our world but don’t really make a difference yet in what others see. It will eventually and that is why I prefer the small changes – because we will one day see the difference because we can do the larger, bigger projects.

He is better is some ways – cognitively- he doesn’t seems as self-concerned and obsessed with noises and people outside the windows. We had a few days where we could turn off the AC and enjoy the actual air from outside and I almost dreaded it because I was so afraid I would have to lock up the house because of his fear of the noises from outside. Instead, he was pretty good and slept the whole nightlong. (A small blessing that doesn’t happen anymore as a routine thing.)

We have issues with sleeping – like I want to and he can’t. He still has vivid dreams and bounces the bed – right though the astronauts foam layer – and calls out and smacks his arms around. When I try to hold onto him he squeezes my arms and hands so tightly he leaves bruises and I am definitely not happy with the pain or the coloring. We have discussed separate beds and he takes it as a punishment- a rejection on my part of him! When we try to discuss it rationally he almost gets it and then he says things like he will sleep on the floor – and it will be OK. There’s that piece of his reasoning that is gone. He jumps to the worst conclusion and sometimes I can bring him back – sometimes – but not always!

But we are trying – and we are looking for real answers.

I think the biggest difference since I stopped working is that I can think about things more clearly and act on them. My thinking may not be as clear as possible – but there are so many realizations that just keep slamming me – that it feels like I was asleep and now I am suddenly seeing things in full color and with new meaning. I have always wanted my dear husband to be as independent as possible and we are working on that. I make him do things that the caregivers did for him and I also drag him around and make him interact with more people.

We had company come and visit us in June and July and it is always a huge pleasure for me. I love seeing the kids and playing and going to the movies and it forces him to be more than he is normally is – and yes, it takes more energy for him, but he does enjoy being involved and busy- even if it means sleeping more the next day.

We used to love to travel and now I have to rely on people coming to visit us and I don’t feel like asking people to do that. Unless there is an occasion I guess we have taken care of things and will do so. I want to get him to visit friends locally or even see if they will come by and visit. It is something we will work on.

I understand the depression that takes over and drags you under and makes you unable to see that there really is a light at the end of the tunnel. I know that darkness that permeates your soul and makes you feel like you there is nothing to which you can look forward. All of the good years are behind you and this is the shit you will endure until you die.

Then, one day, you realize what a crock that is and wonder why you ever allowed yourself to accept the invitation to the “pity party” that turned into the “I give up party” that was leading to the “nothing matters”. Like the as says, “Depression hurts” and it is the pain that keeps on giving if you don’t do something to change whatever the hell is causing the depression or seek medical help. And so – it may be gray outside – but I am back to being me inside! The authentic me is still seeking home base but I am getting closer. I know when I lost it – my mom was still alive and I told her I was losing myself and I didn’t know how to hold on. I no longer felt the balance that once allowed me to nonchalantly waltz through life and enjoy about 98% of it with only a little guilt. The tables turned and I no longer was happy inside though the smile remained on the outside. And suddenly the tables were turning to almost a 180º turn around. And that just plain sucks!

So I am back- and on the road – and yes, my husband has a neural degenerative disease that will totally incapacitate him one day – but until then – even though his mobility is not getting better – we will keep trying to keep him at a level where we can enjoy one another and not give up on each other. I am here for him and starting to take care of me!

We have so many dreams yet to fulfill. We didn’t give up on other people – and so we are not going to give up on ourselves.

And now – I have some things to consider in the light of the day, the extreme heat and actual need to make them happen!

Peace, love and harmony to all!

Fighting Fair Is NO FUN!

2010-07-28T14:23:00.000-07:00

I wanted to kill him- to take him and thrash him or at least to make him see how stupid I was thought his actions were and how inconvenient to me. Right - to me! He was busy taking things apart again- and I was furious- because I could NOT put them back together.

I have spent most of the week trying to correct our lack of insurance and money problem - this should not be for a recently retired teacher. There has to be an error somewhere! We received papers for COBRA and I realized that if I paid for the insurance we could not make the house payment and certainly could not buy food or pay the utilities.

WAIT - we've been here before and because of that I went back to the schools and teaching. So where is the error? I called around and finally spoke with another retiree. She has already received her check and has insurance and ... and I'm like what? why? how? So I say thanks and call the state- I am on hold for almost 25 minutes - "this will be a five to ten minute wait" not likely.

Finally a person after more menus than a restaurant to go through and choose - choose now - ... and there is a real person and real name and she takes my info and question and the line goes back to Muzak - programmed to make one crazy and interspersed with various messages of all the programs available for the citizens.

She discovers the problem and if I write a letter - this can be corrected - and things can go on --- not right away- but eventually. OK- can I email the letter - yes - you can- but -- no - can I and will it be faster! Yes, they can handle the matter. OK

This week has been Medicare - waiting and discussing things with them - COBRA people - more waiting to speak with a real person. I have probably devoted about four hours of my time this week to waiting for someone to answer the phone and answer a quick and simple question - which is NOT answered on their websites- not answered in their FAQs and need to be asked of a real person ----

So after all this phoning- which I despise - I know - embrace and love what you do - and realizing that if I had done this two weeks ago- then it might be in place ... I was blown away when he came into the room with several pieces of a lens from either a camera or a telescope - and I mean pieces - disengaged from their rings and rims and I have no idea how to assemble. I try - and I can't and he comes back with more that he takes apart and I want to kill him - STOP - my head is screaming - and instead I say - I find it difficult to try and help this situation when I don't know why you are taking things apart.

He ignores me - OK - now he is upset! So I take off - not doing this - not doing this. He is so far gone from the guy who was my partner and would have relished the idea that I finally put the pieces into place and we don't have to borrow money nor worry about paying out more than we have ... and do something together.

I have to let it go - and move on! It doesn't matter. I check on the mail - Nothing worth worrying about today! And then we need to move on ---- again and again and again. I hate it - no drama - no tears - no swearing and emotion - all of it has to be let go ... deep breaths and loving thoughts! It is OK!

Older Does Not Mean Wiser ...

2010-07-21T10:53:00.001-07:00

If I never learned to to do things differently - how can I expect things to be different?

I am a product of so many people, their emotions and events. I have allowed myself to be molded and now I may be moldy - because who I thought I was, and who I am are really at opposite ends of the pole.

I would hazard a guess that, I am not unique in this matter - maybe it has something to do with: being a female; being part of a religion; being educated as a professional; being a wife; and just being alive in 2010 among 1000 other things!

I am happy to be who I am discovering each day - not just responding or reacting to the world around me. I am feeling a little of that freedom - of being able to just be. What an enormous weight is lifted. My husband remarked how all the news reports which are daily bombarding our brains are no longer scary for him, because they no longer effect our lives as they have for the past five years.

“When I'm trusting and being myself as fully as possible, everything in my life reflects this by falling into place easily, often miraculously.”

I have felt this before and now that I have time to actually feel and not merely have it bounce off me - I can realize and accept it without reservation.

I have much to do today! It is all worth trying at least once!

“Thousands of candles can be lit from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.” Buddha

I am in CONTROL - not the events

2010-07-17T10:17:00.000-07:00

Saturday July 16, 2010

Another new place – of course, it’s another day!

OK – so yesterday was a little bit like my own personal hell – and he shared it with me! Not good!

Morning was very bad! I awake after another night of no real sleep and hours of restlessness next to me. I am convinced it is time to change the sleeping arrangements, even though the thought makes me cringe, but the need for sleep makes me know I need to do something before I become homicidal. Husband is unusually unresponsive and then frightened by me and so he is running away from me and walking around and around and trying to avoid me. Right – that was fun! Telling me how much I hate him and am trying to … what I don’t know and he doesn’t either. Trying to?

Then it’s all over – and he is saying he’s sorry and telling me that he can’t hear and so makes up what he thinks he hears. Telling me he avoided going to visit a good friend because he does not feel good about not being able to participate in conversations – OK – so a hearing aid! He needs amplification of the words and sounds for him – Mr. Audio – who probably lost his hearing due to his work as an audio engineer for the radio and TV stations. Workman’s Comp – don’t think so – they can’t even give him a pension – another story, another time!

He admits that he pretends that he doesn’t remember an event so that he doesn’t have to feel uncomfortable about being around others. Holy sh--! Tears flowing like a waterfall and I’m not feeling all warm and fuzzy inside! We talk and I want to run and I can’t stop crying and he can’t get the words out – and we are back to an ok place. We decide to start again. We let the morning pass and we head for the afternoon and lunch and things to do and people to see.

The heat is a factor that stops us from doing a lot. I need to repair or access an external drive that holds ½ Terabyte of information that I mistakenly thought was a good idea to store in ONE place. Now it is in ONE place and inaccessible. We were invited to visit a friend who has great success in doing this sort of thing – but now the heat is really getting up there and a twenty-five minute ride no longer holds the charm it had in the early morning. So we are not traveling – no farther than the mailbox.

So we are at home – together – and not well enough to really get into major discussions or things! We do lunch and clean up and he naps – and I get on the computer and check email and play a little game and try another program to try and access the drive and then it’s time for a shower.

On to dinner and then we have a visit from a teacher and his son for a few minutes. We eat and enjoy and watch a little TV and he falls asleep again.

Now, this is where I got scared again! I wake him and he is like really nice – but really nice like I am someone else – and when I ask him his name – he can’t tell me who he is – My heart stops! He is trying to remember asks me for a hint, and then he says he can and he spells his name – I ask if he can say it and he shakes his head “no”. OMG! I say his name and ask him to repeat it – It takes three times until he says it. I get him up and we go upstairs and I get him ready for bed – and then come back down and clean up the kitchen and work on cleaning and avoiding thinking about anything else.

When I get into bed I tell him we are going to try a few different things to see if it will help him sleep through the night. I had read that white noise helped people sleep better. I leave a light on and grab a nightshade for my eyes and we go to sleep. And we sleep – for the first time in probably three months we sleep the entire nightlong.

Today I asked him his name and he gave me his initials. That was good. I think! I don’t know! I just don’t know! This morning was a big day of shit – but a plunger, some Clorox, shower and the washing machine helped solved that problem – sorry!

Today – another day of extreme heat across the country – another day of trying to keep my head on straight and not be too bent out of shape by the events.

We are no longer covered by the health insurance but he still has the government coverage--- so if I needed to take him into a hospital I can – but if these are TIAs, and yet his BP, cholesterol and all other levels checked out when we went to the doctor’s office on Tuesday, what is causing this? Here we have yet another mystery, another day and the chance to enjoy his company – whatever I can get from him.

Peace, Love & Harmony

my spirit

2010-02-15T09:27:00.000-08:00

February 15, 2010

It’s Monday and I am not at work – what a nice feeling! I am sitting here next to my dear husband. We have finished a late breakfast- two courses over two hours – slow eating, better digestion.

It has been several months since I have had the time or desire to write.

Much, as always, has happened in my absence from this venue.

Something has taken hold of my spirit. This change has pushed poor-me attitudes aside as well as the negative inner feeling that permeate this Blog. I have a very different sense about all the things that I need to do each day and the direction in which my life has gone. I truly am into the idea of dancing – and accepting what comes my way – with a little more grace and less upset.

The days have not really changed. I still am awakened during the night and he still has problems with mobility and incontinence. The laundry still is a constant, with sheets and bedding, and the floors and furniture still need to be washed and cleaned after accidents that cannot be helped. But my attitude toward all these things has changed. I can accept this as just part of where I am at the moment and that he needs more love than admonition over his inabilities to deal with life, as he once was able to do. We are at a different spot in our lives. We are not going to ever go back – always forward.

This has made me realize that I need to be the one who accepts and changes – and sometimes it comes faster than one would ever expect. I think that I can deal with things and they change to something else- something different – nothing stays the same for very long.
In the past, it seemed easier to accept the changes, because I had a partner who buoyed me up and helped to keep me balanced. Now, that partner needs to be buoyed and allowed to be who he is – with all the foibles and problems that come with his present and ever changing condition.

A big change – yet the love I have for him is stronger than when we first wed. Maybe that was where I needed to place my attention – on my love for him – and not my distaste for his illness. It certainly makes a difference in how I handle the illness and love him.

I am relishing the time we have this week – it may not make a difference to the world, but for us, it is a blessed relief from the organizing of time that we go through each day when I head out to work. No one coming in – no others to worry about, making sure this is done, or that is packed, or something is purchased.
We are going to make despite the economic changes, the global problems or the local craziness – that will still be there tomorrow – should I wish to become involved with any of it!

Peace to all – harmony and love for this day and as always – DANCE!

Or at least listen to the music and tap your toe!

2010-02-15T09:24:00.001-08:00

“Inside every cynical person, there is a disappointed idealist” George Carlin

Happy New Year

2009-12-31T09:09:00.000-08:00

Happy Birthday Amy and Mason!
So it’s the end of another year! And soon it will be another decade as well! How the time flies when you aren’t paying attention.
I have been under the financial fog of gloom that permeates the bones and makes you want to seek your bed and refuse to deal with reality. The fact that there are more bills than money and it is only going to get worse – before it gets better. In order to have a job you need to pay the employer some of your salary in addition to paying for health care at a reduced level of comfort – more money for more services and especially more money for the scripts which are one of the biggest costs of living through chemistry.
But as they say, you have a job! And that in a nutshell is the good. You can pay for things and even though you feel you have cut back- you can once again look at things and cut back even more – wear more sweaters and socks – forget the heat at a reasonable temp – but stay healthy!
And so it is that I have paid all the current bills- eliminated as many expenses as possible – and still is running short each month. Oh well! Somehow we will make it through- can’t figure it all out at once- I just walked out of the fog and took charge of my life once again. One day at a time-
Himself is doing better emotionally and getting worse physically. But that was to be expected – we have not discovered a cure – a remission factor or something that allows him to remain at the same spot without changes. After all life doesn’t allow for that either- we are just surprised when we realize how much we have changed and who we have become.
It’s the time when people make resolutions to do good things - why not do those all year? Why only as a number changes on a calendar and on all legal documents throughout the world? What made the first day so important? We don’t really change… the celebration is often only a drunken time for people. The football games are good for the men who want little to do with their families and another reason to drink and party. We seem to be conscious of only partying at this time of the year – from pre-Christmas parties right through New Year’s Day celebrations. I guess we look at it as a time to be released from our normal duties and engage in different activities that border on fun and good times.
Back to that financial fog that envelops me. Is it only me that gets hit with the sense of not wanting to deal with all this? Am I the only one who has not grown up and taken on all the responsibilities as an adult? Is there anyone else who meets all the other duties each day and then is overwhelmed when you cannot pay the bills and are suddenly getting squeaky noises from creditors and know that you are doing your best and can’t see an answer in sight? Guess it’s only me.
Happy New Year – I’m going to work on my adult time- maybe an hour or two a day! Until then I am off to do the everyday things that call to me and it only gets better each day!

2009-12-31T05:42:00.001-08:00

happy new year

I have a whole piece of cloth

2009-09-05T12:04:00.000-07:00

So the ride never ends! Welcome to Labor Day weekend. This was at one time the celebration of the worker based on reconciliation ~ sound familiar?

“The first Labor Day in the United States was celebrated on September 5, 1882 in New York City.[1] In the aftermath of the deaths of a number of workers at the hands of the US military and US Marshals during the 1894 Pullman Strike, President Grover Cleveland put reconciliation with Labor as a top political priority. Fearing further conflict, legislation making Labor Day a national holiday was rushed through Congress unanimously and signed into law a mere six days after the end of the strike.[2] Cleveland was also concerned that aligning a US labor holiday with existing international May Day celebrations would stir up negative emotions linked to the Haymarket Affair.[3] All 50 U.S. states have made Labor Day a state holiday.

Traditionally, Labor Day is celebrated by most Americans as the symbolic end of the summer. The holiday is often regarded as a day of rest and parades. Speeches or political demonstrations are more low-key than May 1 Labor Day celebrations in most countries, although events held by labor organizations often feature political themes and appearances by candidates for office, especially in election years. Forms of celebration include picnics, barbecues, fireworks displays, water sports, and public art events. Families with school-age children take it as the last chance to travel before the end of summer recess. Similarly, some teenagers and young adults view it as the last weekend for parties before returning to school. However, start dates for schools vary widely, beginning as early as July 24 in urban districts such as Atlanta, Miami, and Los Angeles. In addition, Labor Day marks the beginning of the NFL and college football seasons. The NCAA usually plays their first games the week before Labor Day, with the NFL traditionally playing their first game the Thursday following Labor Day.”
http://en.wikipedia.org/wiki/Labor_Day

And so what does it mean for you?

For us it has been a time to reflect on what has happened and what is anticipated for the school year. It is a time to schedule what my husband will do and with whom he will be while I attend to the task of working to make the money to pay for the person who will be spending time with him.

We interviewed and accepted a service that seems pretty reasonable after all we have heard and seen – the only problem, as always, is that there is no extra money in our budget, and so we must once again delete something in order to pay for part-time help.
I am now willing to do just about anything – since his first response was to put him in a nursing home – and that I cannot do at this time – and I am not sure about the future as of yet. A definite NO right now!

After adding the expenses I realized what a huge blessing his friends were for us last year – it would have taken ¾ of my salary to pay for help like they provided – and then where we would have been?

So we got by with a lit of help from our friends and now we are in a new school year, new place with new demands and new things with which to become familiar. The never-ending story – for as long as I can make sure it keeps going!

His fatigue is overwhelming – he goes for a while and then – he is pooped and has no energy. This is the area I would like some help from the medicos. I need to call the movement specialist this week.

Last week everyone was in the air about placement in the buildings. I found out at 11:00 am on Wednesday –the last official day of school for us for the week. Others were still finding out Thursday a.m. as I found out when I ran into another teacher who was collecting her things from our old school as well on Thursday.

I loaded the car with half of the things I has taken into the building. I will have to return once I have emptied the car and can reload. It places us in a bad spot for the four days – no room in the car for anything- except us!@ Cancels any purchases that need more than the space under his feet. We are loaded and scrape the ground with our tail-heavy load. Every nail is broken on both hands from my not so gentle moving of large heavy objects- a repair job I will work on later.

I had put it out that we needed help- but I hadn’t expected the sacrifices to be quite so big! Oh well! Such is life. As long as I don’t get a 10% decrease in pay and 20% increase in med – then we won’t be able to do it at all! I only need this last year so that I can retire next year.

When I realized we are already at stage 4 of the disease I was a little shaken and unhappy – we really have been trying to keep it at bay – always a day a way! But somehow it snuck up and smacked us in the face. It is not the easiest to accept – especially since I don’t want him to progress any farther, any faster if I can help in anyway. I don’t want him to be bedridden by the time I no longer have to go to work – and then we can no longer do any of the things we can now! Selfish – maybe! But I know that he will work to keep whatever mobility and activity he can!

The support group is interesting – he found it a little elementary at the last meeting – being read to from an overhead- I’ve been back in education too long – I just ignore it- while pretending to look interested and thinking other thoughts. I had to agree with him and realize he is there- the infections are gone and there is more of him back again. And they told me it had no effect on his abilities. Ha!

We had a generous offer from one of the kids to watch dad – but it is too costly in time of loss of sleep and traveling and tiring him out before he even begins – We have to kindly decline the offer. I have to be at work at 7:00 – until they change it in January to 7:30. So it means a lot of movement from 3:00 until 7:00 and then working until 3:00. I am not really sure I can do that anymore- realistically. I am not 40 or even 50 anymore. And retirement age means I get tired a little more than I used to. And I wish I didn’t- but again I have to realistic! I have not trained for marathon work – I have become a sedentary person with the use of technology and computers. As well as there is more sitting than running and more use of the fingers than the thighs with my new found activities. School affords me the chance to walk around and get more exercise if I have to move with the kids.

I guess I have to put it back out there to you, God – whatever your will! I will do it! I can keep dancing – I still hear the music – and if I worry about something- it doesn’t mean I won’t keep moving on!

I am grateful for a job and paycheck for whatever time that may be. I am grateful for finding an agency that I would trust to watch the most important person in my life. I am grateful that I am well and can work.

I don’t know if I can or should ask anyone else for help. I think this is back on me, and proving to ourselves that we can handle our own problems like we always have! No stress on the others for no reason. Keep them happy and living their lives without additional outside crap. They have enough to do without additional worries. We can make it – it will be OK! We will be better than OK!

At least I don’t feel like I’m holding on by a thread! I have a whole piece of cloth to cling to!

I am going to try and enjoy the hours and moments I have with him. He is available for curious and innovative minds to play and banter. He is really quite lovable … we are just a little short in the pocket – but overflowing with love and appreciation. We are off for the weekend – to delight in the beautiful given us with sun, warmth and a slight breeze. Perfect for the Renaissance festival if he was up for it. Maybe next weekend!~

Peace, love and harmony to all – happy birthday, anniversary to all August, September and October friends and family. Sorry we have not been diligent in remembering your great days! We do think of you and pray for each of you daily. Love ~

“Human beings, who are almost unique in having the ability to learn from the experience of others, are also remarkable for their apparent disinclination to do so.” – Douglas Adams

Great legislator, 'giving heart'

2009-08-29T10:52:00.000-07:00

Ted Kennedy's life's work was not to champion the causes of those with wealth or power or special connections," Obama said. "It was to give a voice to those who were not heard, to add a rung to the ladder of opportunity, to make real the dream of our founding."

The president said that "though it is Teddy's historic body of achievements that we will remember, it is his giving heart that we will miss."

It was the 60's - I was part of a group of teens who were on a trip: first to NYC and the theater district for a national Genesian Convention - named for St. Genesius, the comedian, a Roman actor who was martyred for his faith - and was the name we took as young Catholic actors. I had worked three jobs for over a year to earn the money to take this trip and buy some clothes to wear - have money for food and presents for those at home. I planned and watched each penny I earned - some for tuition- some for the trip and made sure I had enough to make it.

This trip was a week away from home with girlfriends and a bus trip to NYC, West Point, Washington D.C. and Arlington Cemetery to visit the Kennedy grave site and see the eternal flame with the faint promise of the brother, Ted Kennedy, meeting us at the grave site.

NYC is a story in itself - the bus rides were another. But the trip to Arlington turned into a memory that became embedded - forever!

We left the bus and walked through a wooded area to get to the grave site. It was so eerie! Here was this flame - just burning - and it brought back the rush of emotions and feeling of loss I had experienced when we were told in school that 'the President of the United States had been shot and was dead!" OMG - He was the Catholic President -and one we had worked to have elected. And so suddenly he was gone ... The emotions were still rushing through my brain and I heard a New England accent thanking us for coming and saying other words - words I could barely discern --It was Edward Kennedy - Teddy as everyone called the younger brother. And there he was talking to the group and now he was leaving and suddenly I knew I wanted to get his autograph before he left. I checked and had nothing - but my bus ticket - borrowed someone's pen and took off after this suited man. I raced to catch him - I only noticed the two big marines who guarded his back as I got closer to him. I called his name - but the wind was blowing my voice backwards - I saw an opening when the marines took their step to the right and they were about to cross a wooden bridge and would not be able to be three abreast so I squeezed between them and grabbed Kennedy's jacket sleeve - He spun around and was as surprised to see me as I was surprised to be face to face with him and had two marines reaching to grab me and exclude me from being so close.

He stopped them with a look and I without hesitation but a little winded asked for his autograph and offered him my bus ticket and a pen. He had a twinkle in his eye - as he said something about being taken away by the marines if I made any funny moves and took the ticket and pen and scrawled his name across it - then I thanked him and they were gone! I stood there staring at the ticket - knowing eah scrawl as a letter of his name - amazed that I had gotten it. When I turned to tell someone I had it - there was no one there they had all gone to the bus and didn't even notice I was missing!

When I got back to the bus the driver demanded the ticket and I refused to give it to him. "Then you won't get on my bus!" I begged - "please- Teddy Kennedy just signed it for me!" He looked at the scrawl and said - "Nah- that's just an ink blot!"

He let me on the bus and let me keep the stub. I told the story to my friends and let them all touch and hold this little piece of cardboard with funny writing. I treasured that piece of paper for years - until I gave it to a friend as a birthday gift. It was my prized possession and I had nothing else to give her - so I parted with that ticket stub.

That was my first encounter with Ted and the only physical contact I had with him - but I did contact later in life for another request. But that's another story.

And that's for another day! Thanks Teddy for turning around and paying attention to a teenager who was willing to get past your bodyguards to get your autograph!

So what will I do?

2009-08-28T15:09:00.000-07:00

So what will I do?

Monday I am scheduled to return to work – at a new school under a new administration – and with the idea that we may only work through October under the old contract. Those are good /bad things. Have a job, will get a few paychecks & with the grace of God will have a new contract that is not as fiscally death gripping as the one formerly proposed last week. (my fingers are crossed!) The new Admin is filled with enthusiasm and interest in a well-run school – I like that a lot! I know I liked the consulting position when I did it previously - working with another teacher – and it should be good – because the people there are chosen good teachers.

So – if my stuff is still at the other school – I will get my things and transfer it all to the new building and have a new place to call home. We only work for four days and then we are four off and finally the students start on the day after Labor Day – state law!

But the bigger problem, and the one I was sure I would have solved this summer when I thought I had so much time to do it and taken care of, is still in limbo! This is not good! This is very bad! And all the feelers and speculations and hopes are only that – no tangible results as of yet! Who will stay with hubby while I am at work? Watching the changes that have taken place this summer has been hard. He is slower and now sleeping a lot! We have been through two doctors this summer – one who set him back about three months by playing with the drugs and the other who is attempting to help- but right now it seems to be making him less independent on a daily basis!

“All human wisdom is summed up in two words - wait and hope” St. Augustine

Sooo – the phone rings at 3:30pm and the HR lady says you are assigned to “the same school I was at last year!” Oh no! Oh no!

I say – I thought I was at “the new school”.

“Who told you?”

“The principal of the school! I signed the form to be there!”

“Oh! Well you need to speak with so and so- but she isn’t at her desk and you can call this number and ask her to forward you to the correct person.”

“OK”

“And call the school and see if you are on the teacher roster for the school that you ar currently assigned to! Do you have the number?”

“OK”

“Now be sure to call and I will call the school you think you should be at! OK?”

“OK”

So I call and get the machine of death! – "please call this #" and so I call that # and get a message – "unavailable at this time – leave a message or wait for the operator" – who never comes but rather a recording telling me – "thank you" and disconnects me!

OK – try this again – and leave a message on the first line! So I try calling each of the schools to see if I can speak to anyone – no machine voice after machine voice as I am transferred until I am once again thanked and disconnected! What the ??

Then call around to see if any other teachers has this happening. Get a suggestion to send an email to the principal at the school I thought I was suppose to go to.

Write the email explaining the situation and asking for clarification --- send it out and then call back a fellow teacher. She has the cell for the principal. So I thank her and then call the principal who has just read the email and is already calling the woman I could not get in the first place – and telling me - "it is taken care of – see you Monday!"

Call back the teacher and let her know it worked and I should see her Monday!

OK.

That is done and I can breathe once again. Then I hear the mail truck and hubby goes out and brings in a letter from HR telling me the same thing – I am assigned to the former building under a new principal – so if the mail had come earlier I would have dealt with this – but that’s not how it went down. It’s OK! Right? It’s over for the moment and gives me one less thing to stress over.

But we are back to before the call from HR. Hubby called the son to see if he was available to help out next week – (We had two friends who gave up great amount of time to help out last year and I knew it wouldn't last) one friend gone (feeling the need to be elsewhere and needed at home) - the other has left for NY because his older brother is not doing well and not expected to last long.

So we are friendless for him- in terms of a caregiver. No swimming yesterday- because of the family emergency that arose Wednesday evening for his buddy.

We are accepting- we are caring and telling them we understand – because we really do! We are just stymied about what to do!

I tell him I will take him to school if I need to- he says he will sit in the car – oh no! He tries to think of what to do and offers several scenarios – six months ago – they might have worked!

We are not there anymore! We are in a new place –I say we are being beaten by the disease- he says we are racing it! I know we are racing it – but we aren’t keeping even yet! We are a little behind and trying like anything to catch up! He tells me not to feel bad – I have done more than anyone would expect – I feel like I should of and could have done more – I just don’t know when or how – realistically.

I budgeted and discovered if we don’t eat I can afford to have someone help – what a crock! After all these years of working and all this education and all these abilities I can’t make enough to take care of us. If it was next year I could retire early and get SS and retirement $$ and stay home and take care of him – we would get by! But I can’t tap those resources until next summer and I can’t get by with no benies and no income – we can’t live in a grand a month! We could never afford all the doctors and meds he takes without some help!

There has to other ways I can make money and stay at home with him!

I can write – all types of writing - especially with an editor and proofer
Create teaching materials
Edit video
Edit newsletters
Edit/layout of tons of periodicals or paperwork –posters, cards and such!
Have some artistic abilities – drawing- painting- designing

These would be things I could do at home and still take care of him and keep him active and not malingering! We could take classes at the senior center together and maybe get him into painting- drawing and guitar lessons.

I just hate to see his physical get so worn down. It wears on his emotional as well!

We need to get to the store and he wants to sleep – he is using sleep to deal with all this – I would enjoy being able to do that too.

There must be someone who needs a multi-talented person like myself and is willing to pay me enough to stay home – too bad there is no help from the insurance company or the plans that have been proposed to the government to help keep people at home and not institutionalized. They want me to give up on him and place him somewhere I wouldn’t want anyone to be. It’s not that nursing homes aren’t needed – it’s just that they really don’t take care of the whole person. Warehousing of the elderly is how I see them too often. They can’t have changed much from when my mom was in one for a minute! And she was in better shape than my husband.

Sooooooo… I wait and hope. Put out the calls and try to rack the brain for a legitimate way of dealing with all this.

Too far for son- he is busy working once again – Yeah! If only he could be dropped off at their house they would help – that means getting up at 3:00 am and dropping him off at 6:30 am and then picking him up at 3:30 pm and getting home at 5:00pm and not being able to do much else. Himself offered that he could spend the night there – and my question – who will help you out of bed? Who will wash the linens and change you once or twice in the night? We can’t ask that of the kids in addition to having you around during the day and feeding and helping during that time.

He has gotten to a point where he needs more help than they would feel comfortable doing. Maybe the frail elderly placement is finally right for him at the senior center. We just need an infusion of money – what did the government offer – a stimulus package to help defray the costs would be wonderful! I’ m here Lord!

Wait and hope! Wait and believe that I can be part of a miracle and it will be better than OK- because we deserve better than merely OK. I anticipate great things and great moments and will settle for nothing less. I am looking for help and open to suggestions!

Always something – there is an answer – I just haven’t found it yet!

Peace Love and Harmony

SUNDAY

2009-08-23T05:54:00.000-07:00

The month skids to a close - bumping the days out of the way as it jams things, events and deadlines out of existence and into oblivion. We have no time for a normal schedule. The world has once again changed.

There was a momentary hope that despite the odds - if we bought lotto tickets we would win - the percentage of win was 12% of the initial investment - not bad if it was a large investment - pretty low if it was our real investment - so we didn't win- this time - but someone not too far away won 1/4 mil. Not a bad deal for them. Congrats and good luck.

My best friend had hand surgery this past week after falling in a parking lot and having gravel embedded in her hand that needed removal. She of course. self-medicated, before actually seeking professional help- which may or may not have led to the infection and deeply painful hand. A lefty, she is complaining about how much she uses her right - which is now bandaged and healing. Thank God!

We got a pole for himself to use to get up - that goes from ceiling to floor. It looks like one used for dancing and I am tempted to try it for that. Oh well! To be a little younger and more agile!

The cool weekend has been a relief from the constant fan noise and AC running. Even himself was able to sleep.

He has tried to do some exercises using the thera-band and ball. Some days it helps= some days it just tires him out. There has not been a pattern yet to why or why not things work! He was using it this morning and now is resting - I have been up since 4:15 when he woke me - needed to change the bedding and him- take pills - got some juice and yogurt for him- and never fell back to sleep. It is now almost five hours later and I am tired now - need to nap- or make breakfast -

FarmTown has been my refuge lately. I have made it to the 31st level and received congrats from my nephew. Love the kids! It wasn't a goal - just a happening. I went to the marketplace and suddenly was being hired every time I was there - sometimes for a small that turned into a big job - always something- and always when he needed help getting up.

This week is the beginning of the State Fair - a parade to get kids into the school system and teachers to accept less under duress --

Last week before the official opening of school. Need to - there are those words that should be used sparingly - need to. What do I need to do? I would like to get my things from the old school and move them to the new school this week- especially if ti's going to remain cool- then I can put the carriers back into the car for groceries- that prevent them from rolling all over the floor.

Silly stuff - nothing big! I see the doc this week to see if my blood levels are good - we got cleaned up on Saturday. Bonnie had a brighter red for me- and himself was shorn short. Looks good- both things.

Have to see where the fear will lead this week. Union sent out a letter with proposed dates - a parade for teachers - and a meeting to vote about going in to work - God help us all!

May this be an enlightened week for all of us!

Thanks for caring!

Keep those prayers flowing- I'm anticiapting only miracles and explosive blessings!

We are back to HAPPY!

2009-08-20T15:40:00.000-07:00

We are back to HAPPY!
The pills may or may not work! I may or may not find a caregiver for him. We may or may not go back to work or on strike!
Things are in the air - and I am unwilling to give into the fear that can be engendered by these events.
I must believe that I am doing what I need to do and where I need to be and things are going to turn out better than I could ever have dreamed.
I am going to hold on to that and not let it slip so far away that I can't retrieve it with a little help.
I am going to be happy!
I am grateful for the sun and the all the blessings that come our way.
I delight in the kids who are part of our lives.
I wonder at the love that is shown from friends when I most need it.
I bless those I love and those I don't love.
May I be better than I was yesterday and working on getting better tomorrow!
I and HAPPY!

But for the grace of God ---

2009-08-16T10:57:00.000-07:00

Sunday – the hot has returned – but so has he humidity – it was pretty warm last night! I had to get up and turn down the air conditioning –to make it cooler – in order to sleep. The inside and outside air were at odds and felt like the outside was winning big time!

This morning we woke to words of encouragement and comfort. It was a good start to a good day so far.

Yesterday was the culmination of waking at 4:30 for four days in a row and not being able to return to sleep -like the usual routine when I am working. We had to shower, dress, eat breakfast and make plans for the days! It was not too bad – but the lack of air conditioning – and the warmness of the building I had to be -were a little much for me – heat and I do not do well! Temperate is more my style.

We were exhausted and went to sleep about 10:00 pm last night and slept in until 4:30 – took pills/changed the bed and clothes and then went back to sleep until 7:30. What a blessed relief that sleep was – in addition to the cool air! We really need to go to the grocery store – have no idea why I have such an aversion for shopping? Oh well!
Friday I was a mess – and part of it was trying to pretend that I didn’t almost bite the dust when I was leaving work. There is a light at the end of the driveway from the school and I was waiting for it to change – while trying to get the car’s air conditioning going and air moving – then when it was green I started out – and as I looked to the left—a minivan comes barreling through the red light in my almost lane – I let up on the pedal as it zoomed past and I slowly regained my senses and moved myself into the road and started home. I thanked God for being alive and put all the shaking that was building up and fear deep down and buried it and the sense of WOW – I was almost a goner – really! And headed home while trying to get the car to cool down!

When I mentioned it to the girl who was behind me in her car yesterday – she exclaimed how she was so glad that I didn’t get into the way of the oncoming car and was just as amazed as I was that it had turned out so well!

The sheer terror that ran through me when we spoke about – and the sense of “how did I manage to make it through that?” filled me with the shakes that I had buried the day before and reminded me if how and what I seemed to be sublimating each and every day of my life. If it’s bad or distasteful and I can’t deal with it – it’s just gone! Not really gone – but no longer part of my conscious being.

OK! So that is over and three days in the hot school are done for now! The school is being cleaned so I am waiting a week to get my things from the other school and take them to the new building. I like the people and look forward to working there this year. I am happy about that decision – that wasn’t a random thing.

I went and picked up hubby from his visit and we returned home – two hours on the road in the heat of the afternoon burned me out –even with the air on in the car. We had an easy dinner and relatively early retiring to bed.

He is slow today and used a lot of his energy to be on his best behavior yesterday – and it tired him out! He is cleaning out his papers – a never-ending job! We are planning to attend the breakfast with the Parkinson’s group tomorrow – I am looking for help with him for the fall- school starts in two weeks and I need something in place. We both do! It is too emotionally draining to not know! To not be able to plan or make plans or even know what’s going to happen tomorrow let alone today!

I am grateful to be alive! Enough said!

What the hell is going on?

2009-08-14T17:14:00.000-07:00

I feel like letting go and crying - I cannot let these emotions take over - I need to remain calm and cool and stay with the program we have agreed to. I can barely hold the tears in!

The heat is not my friend. I was at work where there was no air and very little movement of the hot air- normally this would be vacation time- and I will be there again tomorrow - from 8:00 to 3:00. This created the problem of finding someone to stay with my husband while I am gone. I am feeling very sick to my stomach!

Yesterday we saw the old neurologist and she was optimistic - while giving me a report which recommended guardianship or conservatorship for him because of his lack of cognitive abilities to make executive decisions. The testing in April proved to these people that he is not capable of much! It was a depressing read for me - and him. We talked about it and we tried a new med and stopped one of the meds that might be causing the hallucinations - and we are again - juggling the meds - always with the juggling! He is terribly incontinent - he makes it to the bathroom and then goes all over himself. More laundry and getting him cleaned up.

I also tried to juggle taking him to the doctor- trying to get him to the pool for water aerobics and meeting up with his buddy. The appointment went late- the buddy went home after waiting fifteen minutes - he does not have his cell set up to take messages - and has it turned off most of the time --- so we drive from the doctor's to the pool to home and hubby calls and the guy says - well 've already eaten and I'm home. Yeah! But he was supposed to be here with hubby and taking him to lunch so I could go to work where I was supposed to be at 8:00 a.m. - Finally he agrees to come over and I get ready to head out- after hearing from the pharmacy that the new drug is not covered by the insurance and will cost $65 for a month's supply. OK! Call the Dr. to see if there is an alternative or something she can do- NO and so tell the pharmacist I will be there later to pick it up.

He is in a good mood. He has been treated nicely- listened to about his concerns and acknowledged. He is good! And he is pretty mobile!

I go to leave and his friend drives up and I wave and head out - I'm gone only a couple of hours because of the morning mix-up and all. When I return he is bent over and not looking up at all. The friend is upset about the fact that he is sure hubby has taken the wrong pills -- hubby has not and everything is good. I ask is he has inquired about tomorrow and maybe going swimming to make up for today. Friend is adamant - not available - too many things to do - grass needs to be cut and house cleaned. Thank you and good bye and see you next Tuesday. OK

Hubby and I have not eaten. Get some food for both of us- pick up new med and give it to him as well. Ask him what should we do about tomorrow when I need to go to work? He says he will call his friends and se if they will stay with him. He makes two calls- offering lunch and a movie on him- two unable to help - and then he calls the stalwart friend who spent three days a week last school year with him. He agrees to be here. We are at peace.

We have a very good evening. He has a nightmare (with some yelling) in the middle of the night and remembers it in the am - new - usually doesn't remember.

We get up - and he is helping by doing all he can to eat and get showered and dressed so I can leave and he will wait for two hours until his friend arrives. He is content with this - or at least he tells me he is OK. Probably so we won't have anything to stop me from going to work.

I leave and he spends the day --

I overheat and then come home to be told - not anymore - I'm too old to do this- sorry! His friend is opting out and wants me to know before school officially starts. I thank him for all he has done and he leaves.

The heat and news kind of deplete me. OK! So what do I do now Lord? Hey God, this is me! Are you there?

Then hubby starts talking about being in an assisted living facility and I am floored. I can barely believe I am hearing this - only a few hours ago he had out his journal and eas going to write and do things and fix things and now he is heading to place where they will take care of him and leaving me behind.

What the hell is going on?

Tomorrow he will go to spend the day with son and grandchildren - and daughter-in-law who is entertaining her parents.I feel awful about having him go there and spend the day! It is an intrusion into their lives! He is worried about having clothing and depends - which means packing a bag for him. I am worried about him- if he is treated badly he will take it personally and it will be another bad day for him.

The loss of companionship from his friend made him lose his ability to walk and move his hand. I gave him meds to get him going again. He is giving up and I can't stand it! The smell of urine is like a stark reminder of what is really happening and I can't change it or make it go away.

I just wasn't ready for this today!

When is it ever a time to be ready for this stuff?

I asked about checking out a group called - seniors helping seniors - to see what they offer and how much the service is.

He was willing to spend the day sitting at the library so I could go to work.

What am I willing to do for him?

Everyday is different! I'm always asking "do you need any help?" and he works slowly but as well as he can to do things for himself. There is still some freezing in place - and he tries to get himself going.

All I can do is take it one moment at a time! But I still would really - really like to cry! I just kind of feel overwhelmed and really would love a good cry!

Friday – there will be a rain dance this evening – weather permitting!

2009-08-07T04:46:00.000-07:00

Friday – there will be a rain dance this evening – weather permitting!

We may have a moment of respite- the drugs may finally be helping!
Another week is almost over and I can’t believe that so much had happened and yet so little seems to have happened. We have been up since about 4:30 – again – but this time it has been good! He used the thera-band to stretch his legs and then asked if I would mind if he turned on the Wii. Oh – ah puh-leeze NO! SO it is after 7:00 and I am making breakfast – coffee was a long time ago and he is still at the game – not as frustrated and not giving up as easily as usual.

Yesterday he sat at the keyboard and played it and for almost an hour and a half and then we went for a short walk last evening. We saw the neurologist (whom I was ready to kill last time) who was delighted with the progress of putting him back on the same pills and the adding the anxiety relief one. We upped the dose last night. And he seems happier … thank goodness and he seems better.

The fact that he has been able to spend more than ten minutes on one activity is outstanding- something that hasn’t happened in a long time.

At the doctor’s he got the day wrong- like always :0 – he thought it was Friday- he really loves Friday! But then he answered all the other questions not only correctly but with a lot of info- surprised the doc- then he didn’t allow us to be dismissed- but said he had questions for the doctor. This was another surprise for the learned medical man. SOoooo he felt really good about the visit – and the doctor was happy that he had made a difference in another person’s life- you could tell – and we were on our way home for an afternoon of music and amazing moments. It was all good!
I have a job - in fact I have one that I think will be very beneficial for this year. I start work early which mean an early release – so that should help with the appointments.

I was going to go and get my things from the school I was at last year – and I will next week. Summertime is supposed to return with Hot temps and humidity this weekend. Ugh! I really have enjoyed the cooler summer we have had this year.

I’m crossing my fingers – we didn’t make it to the support group Wednesday because he wasn’t able to get up – bug difference in 48 hours. Maybe I will get some sleep at night and maybe we can make it another couple months with this med.

A few more weeks and back to the routine … or creating a new routine. He didn’t go swimming this week at all. Instead he called his friend and begged off – saying he didn’t feel well – maybe that too will change!

Everything is OK!

Peace, love and harmony to all.

NO sleep

2009-07-26T18:27:00.000-07:00

7/20/09
“Lack of noogies got u!” I have a Bette Midler album that I used to play whenever I cleaned house – it was like “my cathartic music to clean to”. Most of the songs on those two vinyls were happy and silly and real performance pieces – with only a few heart jerking ones – so it made it easy to clean and listen and sing at the top of my lungs to an empty house. I miss that!

Now I am concerned about bothering the neighbors-especially recently since we have had the windows open to enjoy the unusual cool summer days and nights.

7/21/09
The other shoe has dropped! WOW! They are reconstituting 41 schools- that means all the employees are let go and we have to interview for a new job! What a lot of work and BS – and a poor way to start negotiations for a new contract. Sounds like a bell knelling – need to head to school and sign a form and see what’s shaking! NO sleep and little or no feelings of happy- shower and go!@

7/26/09
It’s Sunday and a little rain after a sunny time earlier when we went out for brunch with the neighbor to our favorite local café’. When we arrived home- we played a little of the “game” that we love so much and himself sat and watched and then disappeared. He was on the floor behind the sofa trying to get off his new shoes that are all nylon and elastic and great while on – but getting them on and off is a whole other world. He wanted to go to bed and take a nap. I helped him take off the shoes and up from the floor and then got him his cane and he headed up the stairs to bed. I helped get him into bed and fell asleep quickly. He had nibbled at his food and not really eaten well – he loved my blueberry pancakes but not the omelet that he ordered. He even ate my fruit – and packed up his food to bring home! The neighbor paid for it so – there was no leaving it behind.

The neighbor and I played one game and then drew a tie for the second and called it “until later”. She went home to read and sleep and I tried to get a little shit eye as well. I heard my name being called from upstairs and went up to help him readjust the bedding and asked if he wanted to use the toilet – “Oh no!” and then he went back to sleep after some water and pills.

Not even an hour later I hear my name and this time I have to change him and the bedding and he is wondering how this could happen to him. Let’s see – two glasses of Arnie Palmer tea and asparagus and fruit – maybe a little liquid that needs to be eliminated. Maybe! So he is cleaned up and wearing clean clothes and the washing machine clangs away with a small load of clothes and bedding so we have the protective cover for tonight. I remade the bed and asked him what he wanted to do.

“Brush my teeth”. OK! Now it is thirty minutes later and he is brushing his teeth and blowing his nose … and will be down when he is finished. OK!

Yesterday I had him get dressed after taking it easy in the morning and not pushing him so we could attend a former student’s graduation party. I have been invited to several and made it to zero. Just as we were about to leave he almost fell asleep while awake. So – he went to lie down again for a little nap – this one lasted for five hours.

I am suffering from fidgety. This is due to not knowing if and where I will have a job this fall. The stress of not knowing wears at you like an insidious disease that zaps your energy and makes you careful in your choices and decisions. It is creating a real bummer for me because he is taking it so seriously – not that it isn’t serious to lose the only source of income we have – but I mean – we’ve hit bottom several times and we are still here! So part of me is trusting the divine to get me through and part of him is dragging me down fast and furiously as I have to keep my own head high and keep him from getting down about things he really shouldn’t have to worry about.

So later the neighbor stops by to pick up her mail that consists mostly of 2nd and 3rd class stuff we collect for her while she is gone! We chat for a while and suddenly when she leaves he is up and awake and wants to be busy and fix the Wii and get it working and correct the wiring because he knows it is wrong – and find out where the chip is or it. I am tired and ready for bed and want to smack him… but I don’t. I make him stop taking out the wires and take a look to see it is OK against the diagram. I make him find the information he claims he read in the booklet so I can prove to him he is making it up and is wrong without a confrontation. I help him find the spot where he can operate the Wii with the least movement and attempt to relax next to him in the bed to nap while he is busy. It is going on midnight! Everything takes three times longer – Everything demands three times the energy to do or redo things. He was upstairs emptying the wastebaskets - but then he can’t find the bags to replace the first and half of the trash is still on the floor because he can’t bend over. I applaud his attempt to do these things—remember not too long ago he did them well and without assistance of any kind- so this is a new thing for both of us.

So we finally turn off the lights about 1:30am- this was OK when we used to party and be out- and we sleep in about thirty minute increments with fifteen to twenty minutes of being up --- this is not good sleep. Finally at 4:30 I give him am pills and he goes out like a light and I am still up- I play on FB farming for a couple of hours- it’s mindless and active – At 8:00 I lay my head down to sleep until about 10:00 when he awakens with a start and is caught in a different place and is upset.

The week has been very hard- his new doctor says it is not due to taking away a medication – that idiot said when I asked about why he was getting worse in just a few days – “Ma’am your husband will never be normal!” He was pissed with us for questioning his use of drugs and creating a situation that makes it harder on each of us daily-he just wants his pills to work! Me too! But they don’t. The hallucinations continue and he continues to get physically weaker each day!

Tuesday he couldn’t get out of bed – then when he knew his friend was coming to take him to swim he got up and crawled to get ready. He came home tired and then we had company for the afternoon with Juli visiting. Monday he had gone out with me and gotten around the loop one and half times on his new trike.

Each day I thought we might get to a movie – but the next day I had to go and sign the forms and when I got back he had been lying in one position for over an hour and a half – unable to move. I grabbed him and sat him up – he had collapsed on the bed face down and couldn’t move. So then we only went out to pick up some groceries and were back home again.

Thursday was the doctor’s appointment and he was almost impossible to do. We were five minutes late when I got to the parking lot – and then another five to park and then get upstairs – so we were 13 minutes late – so the people ahead of us got to go first – and we waited – and then when he didn’t hear what he wanted to hear – we were yelled at and demeaned! @#%* Not nice Doc! So then we headed to our local DO to get an EKG and a B12 shot and consult. Ended up with not much different results … and more fatigue.
I guess maybe I’m suffering from some kind of depression from all his shit – lol – right, like there is time for me to be depressed. No time –

Well the new principal has sent out an email saying she is happy to have “conversation” with us this next Wednesday – Friday- but not saying to set up an appointment or anything like that. We will find out more tomorrow – I will call school and ask! I already sent an email inquiry! Oh well – as they say- one day at a time.
You know I have reinvented myself many times – that’s why I can do so many different things – the problem is I can’t change the fact that I am older – and not really meet the needs of a thirty-something if she is looking for younger. I am who I am and have the experience to prove it! SOoooo.

The days quickly turn to weeks – last Saturday was the funeral for a friend who had brain cancer. That was hard on both of us as well! I am looking for the end of the rainbow – the money to pay the bills and make it better – the chance to take care of ourselves and have medical advice that is smart and caring – the chance to visit with others- canceled the trip to Chi-Town … Would love to travel again.

We need to sleep at night and have the energy to awake for the day! I need some sleep.

PS – I’m scared! There I’ve said it!

Monday - July 13 2009

2009-07-22T04:53:00.000-07:00

Monday - July 13 2009

We sit here at the oral surgeon’s we are early and there is no one at the desk. They go off for their lunch and hide away from people so they can enjoy some peace and quiet. Not bad – wish my job would allow for that as well.

We have not been sleeping through the night- we are up and then we are sleeping through the morning. This is not working so well – we are up and down and up and down and then we get very little done. He is complaining of pain in his penis and hands this morning and unable to move. The Abilify may be causing this – the lack of Azilect may be causing him more stiffness and inability to move – we don’t know. He slept the first night – and the second. After I speak to him and assure him that he is OK – he relaxes a little and then finds something else that is bothering him. It is so hard for him. Either he is trying to get up to go to the bathroom or trying to settle down like the Princess and the Pea. Everything is a bother too him – and I think I understand when you can’t move without something needing to be fixed that you can no longer do by yourself. Now I know why I used to tear out those toes separators when I slept. They were uncomfortable and I couldn’t take it either.

Then he has not been sleeping since Friday night. I don’t know what to attribute one or the other to. I know that the doctor will not be happy -and believe me – we are not happy. But we are looking for the compromise and not the final solution- since we are fully aware of this being close to impossible. We don’t go back to see him until another ten days or more and then we will see.

We spoke with Bridget on Saturday- she is ill in CA with a cold and it was nice to speak with her. She was as leery about the drug as I am. The literature on this drug does not make it sound like an easy one – pretty scary in fact. Yet, I need to stay calm about the dose and use. We tried an extra Exelon for memory today – he seems to be so tired. We stopped the Celebrex to see if that would allow him more movement in his arms and legs. He was overly cautious in the shower this a.m. We got him washed up and dried in record time- but he is afraid of falling- sounds so much like his mom was. He was tired to the point where he wanted to rest before we left the house and it was OK – because my appointment was 15 minutes later than I thought and therefore allowed us a few minutes to sit and catch our breath before we headed out.

It is a beautiful day. Warm and sunny- but not too hot and I told him we had to go out and enjoy ourselves. Once we were out he was agreeable to the day and the ride. Now the people are coming into the office- it is 2:00 exactly and no one has come to get me – yet! (A little over anxious!!)

We need to go to the grocery store- we have been avoiding it or the last few days – and now we can no longer go without the staples of our lives.

I cannot believe that I was up at 2:00 am and then 6:15 am working on those silly farms. It means we were on them at that same time a few days ago and we need to become more evening or afternoon people.

This is the beginning of a week of blessings and shower of good things to come.
The price of gas is down. I have a debit card for $25 for gas from one gas company. I have another check for $6.00 at Panera’s – maybe it is still good,
HE is busy going through his bag- tightening the straps and then going through each thing in it. OCD- I think so! And so what is the Abilify suppose to do – is he depressed? I don’t think they know what they are doing and that scares the shit out of me. Then what the heck do we do? I want to trust this man -:0 -but he is pretty odd and not willing to share his thoughts except for getting a shrink to medicate him with heavier drugs. And then being so loud that everyone in the front office can hear him as he dictates his session with John. There’s definitely something wrong with that – isn’t there a HIPPA something or the other to protect patients and their info? I don’t know why our DO chose him- same school, friends, I don’t think so. They both have terrible doctor-patient manners.

I’m going to quit this – I’m losing feeling in my hand!

OK – so it will cost about $20,000. To get my mouth on one side fixed! Or I can go with a partial! And that is what I expect I will be doing-seeing the dentist in Troy and getting a partial that maybe the insurance will help to defray the cost.
With the implant + bone graph it will take three to four months for the mouth to heal and then the caps are added at the local dentist’s office.

Our recent dentist is gone – from the local office and I couldn’t even ask why! Smiley is covering the office at the moment. We are using another office and we probably will continue to do so. So I need to call and make an appointment with the new dentist.
They are taking himmself right now – as a patient. He will have the other tooth extracted and we will be back to taking care of the shit – like a dry socket and stuff like that- he won’t be able to drink hot anything – so the coffee will be cool. Here we go again for the second and hopefully last time. We do not have to return tomorrow for another appointment. They have willing taken our money and I had a 360 x-ray taken of my mouth and yes I have two wisdom teeth that are still there and could cause problems later – but not now!

I am praying that everything will be exceptional for him and this extraction will go easily with no complications – thank you Lord- and I put him and the oral surgeon in your care – and Hands. The belief that someone will take care of what I have no power over is really needed in order to move ahead in life. There are those who will laugh at me and call it sentimental fluff- and that I should merely look at the odds and accept the outcome. I believe that we can alter the outcome by thinking positively and accepting that we have some control over how we feel and what we do.

He is getting numb and soon he will be OK! They found a blanket to put behind his head and the procedure should go quickly- it’s the after that I get to help him through and we can do it. We did it once and we can do it again!

So the glasses are costing about $1100 for two and both eye exams as well… (There's another credit card purchase that we will keep paying on for awhile to come - with the possibility of having one card take on the debt from another because of interest rates and such.) The teeth have been about $600 for dearly beloved and his extractions – but the partial and/or implants are a whole different world that I want to have and see as a possibility. It will happen! We will win and everything will be OK! ~ It will be better than OK! It will be superb!

Something will happen to allow all that is right to take place and be better. I guess the partial is a way to get a better bite.

It is after 3:00 and I need to make a grocery list.
Cold soup- cucumber soup – maybe that is something he would like & enjoy.
Make the smooth move tea for him as well to help with the constipation!

We have Jell-O and watermelon- what did he like last time? You would think I could remember - it was only ten days ago. But my mind is more like a sieve these days – barely remembering from moment to moment let alone several days or a week or two.

I also wanted to get the vanilla scent refills as well as returning a charger that doesn’t work for me at all. Will do that later this week.

Well we saved the agony of waiting through the night before the extraction and we now can get on with the healing! The new bruises and the new pains for him from all these procedures to make him better are something I hate seeing. He washed his face like it was dirty and not bruised. It is not a pretty sight.

So how do I come up with $50,000 or $1,000,000 to take care of things and keep us OK? Now if the time to win – because the school district looks like it is the air controllers of education and the unions are on their way out! It will not be an easy change for many. It will be a hard loss for all.

We are home and he has eaten ice cream and cold things and changed the gauze several times and I even got out to pick up a prescription for an antibiotic and some food from the store.

He is very relaxed and amiable. The sounds from outside are not bothering him unless they are revving their engines.

I checked my emails to find that one telling me that a friend passed away this morning. I taught in a junior high setting with her. She had cancer of the brain – and apparently took a turn for the worse this weekend. She had only gone into an assisted care setting less than a month ago. There will be a funeral this weekend. What a way to see people from your past! One day at a time.

My darling cannot go swimming tomorrow and has called his buddy to let him know- he is busy on the phone with him. That’s good too! They are discussing the arrival of Obama and his presentation to students and the routes he will have to travel and how it will muddy up traffic. They are pretty funny – now the discussion is about global warming, Iceland, and the Atlantic Ocean. The mean temperature has risen one degree! Whatever that means!

We went to the movies last week to see Museum 2 with the three granddaughters. They are quite a lovely group – especially their mom. We played the Scrabble Scramble game and all laughed and had a pretty good time- too much so- we were almost late for lunch and the movie. We made it and all enjoyed each other’s company and had a great afternoon. They headed back for the littlest one to go to her t-ball game and we tried to stay awake so we could sleep – He had been up all night and we had gotten about two hours from 6:30 – 8:45 before getting up and …. Going to bed ---- nite!

It’s Monday July 6th

2009-07-06T16:11:00.000-07:00

It’s Monday July 6th - but it could be any day! I see where the confusion with days happens – because there are no true road markers like when one is fully engaged in a job and having to be at place at a certain time on a certain day. We move from moment to moment and then sometimes we just float over others. The weekend came and went like the other days – filled with moments of happening.

Sunday was a break through day for himself. He allowed himself to be caught up in the beauty of living in the future and not wallowing in the moment. It was pretty cool. He even called and spoke with his siblings – his sister was in a hurry- but his brother and he exchanged medical information and the latest studies regarding Parkinson’s Disease.

Even today we go two emails with more information to look into about the meds and studies – channel blockers and their ability to protect against Parki- and cutting the risk. But all the studies and emails don’t make it easier for him when he awakes and thinks there are people on the deck who are here to hurt him. He is busy reading these papers to me – with his back to the door wall so that he does not have to see anything that is disturbing to him. The various items are keeping him thinking about other things - that is good. But there are no straight-cut conclusions for us to make from it all – and we have classical music playing – trumpet canon right now – and that is keeping him calm as well. So we go back to our daily things – finishing lunch, making it to the bathroom without an accident – especially from all the jiggling to get up and move from the chair. Doing the laundry and running the dishwasher and getting a list ready to shop for groceries. These are the everyday things that take up our time and keep us busy. I have not given up on cleaning out and taking care of those other rooms – tomorrow he goes swimming and I have a couple of hours to sort and toss and clean and make some more headway. We will have lunch for the guys when they return and then we will take a short nap before going to the new neurologist in the afternoon. We will see how well he handles our not following his directions. God be with me!

It is warm and the sun is shining and I insist on keeping the vertical blinds open to allow the sunshine to come in – (daylight therapy) and we did make it through the night with the light on – he only asked four times to turn it off and was only up eight times before falling asleep for three and half hours at 6:15 a.m. I relished the sleep until he woke me with a plaintive cry for help to get up out of bed. He asked me to get him something to drink and I said “No” and he said “why?” I told him he could go and get it since he was already up. I knew he was tentative about going downstairs and I wanted him to NOT BE AFRAID and try to go and meet his demons. It took a few moments for him to agree to go and allow me to sleep. He returned with his drink and cane in hand. But he had done it- and I was glad for him. I thanked him for going and taking care of things. He was happy.

We spent the morning “doing”. Then I got him into the shower where he called for help- and I ended up getting in and washing him down. He just can’t reach all the areas and once he was dried and out and dressed - I go rid of my wet clothes and jumped into the shower. We need a bigger shower – that’s all there is to that. We don’t fit like we once did … he can barely move and needs extra space and help to move up, down or wherever!

We were watching a new show – Royal Pains – and the girl had a stroke while having sex – and the guy said – it was always a greater risk for a stroke when engaged in sexual activity. He asked if I knew that – I said “Yes” and he thought about that.

When he is agitated as he is now – I cannot do anything for more than a minute- he will need help to get up and move and then return and then get up and then return and then get up and then be upset about being bitten by bugs and taking off his slippers and complaining about things sticking his foot and no matter how many times I show him –have him feel the slipper- No- on no! – we do it again. Then if he gets over the slippers and the feet – it is his beard and face and ears and eyes. He has scratched himself on his head so much he has scabs now. He has scabs on his legs and feet as well. He is relentless in attacking these “nonexistent bugs” and things that cause so much consternation for him. He is sorry he needs me – and like this morning – there are times when I have to let him struggle through it on his own. He has taken some pills and is trying to relax with the News on the TV. We will head out to grocery shop after the rush hour is over – so we can head over and back without sitting in traffic and getting him upset. (Black cars following us and menacing our way!)

He has a book of meditations that he got out and was reading to me aloud. He doesn’t get the idea of meditating on the story – he goes on reading another and another to make him feel better. He looks for the words to comfort him and make him feel better – he hasn’t gotten the feeling inside of himself yet. We are working on it – we are doing it one moment at a time.

I still envision the educational center for senior citizens and urban kids for media arts. I still see the building and the rooms and the curriculum and the people running it and the people speaking and the fact that my husband would be around active engaged people again. He could do some of the things he wants to do – that somehow he feels unable to do now. I still believe in it and the chance to have it before the next three years have gone by. It will be a beautiful setting and allow people a positive opportunity to learn and use the electronics of today- A G3 iPhone for all and editing software and ability to upload and broadcast. Art programs as well as educational classes with the best teachers in the area hired and enjoying what they are doing- in a place where we are all there for one reason- to teach and learn!

I like fb because I get to see all the family that we don’t see on a regular basis. The kids are all growing up and becoming incredible little people. I miss not having them around and barbequeing and singing and acting silly and just feeling good. I miss that – but I have strong memories of doing those things and I enjoyed them when we did do them. I have those memories and that is good. Parties and people and even funerals – mom would love fb- she would go crazy seeing all the kids and being able to have such instant access to them at times when they are on. IM would be a thing of beauty for her – she would love the mobile uploads from Casey- I know I do- plus the silliness of Aaron and the fact that Tiff ahs gone back to school. She would love the pixs of her great grandchildren as well as her own kids being a part of the Technology Highway.

I miss her – can you tell? Jan 2001 - seems like yesterday!

I don’t know how my siblings are – I haven’t heard from any of them. There was a lot of concern about one sister- but no one wants to share any info. Prayers go out to all as always – but I really don’t get much time to be overly concerned about whether or not I know what is really happening. I got beautiful shot of the latest grad “Dr. “ in her cap and gown. Proud mom shared those – mucho gracias!

My sisters’ girls have grown into lovely young women and to see them acting like teens on fb is fun. They have been putting up some great pixs lately. I thank them for sharing.

Today wasn’t as stressful as last Monday when his bridge fell out and the dentist wasn’t available and we had to go to another office and meet another dentist – and that turned out better than OK- because he really liked the dentist and the dentist was aware of problems for Parki people and spoke to John like he was an adult and capable of understanding. I think he wants to stay at this new office and not return to the other where we have been feeling a lot of angst anyway.

So even though he was beside himself when we started the day- by 6:00pm when his bridge was glued back in and he had purchased toothpaste that costs $32- he was much happier. He likes him- he really likes him and that is half of the battle with him.
Then it was the anxiety over the extraction – then the actual extraction and the glorious bruising that he has on side of his face – and making his beard look like he has black hair. We have that to look forward to next week on the other side – and all the feeling bad and getting through the numbness back to the OK!

The holiday was a great time off with people gone and the weather great enough to allow us to have the house open at night and not running the air and keeping us locked up – something he prefers. So much fear and so little I feel I can do to change it – I kind of ignore it as much as possible and when he gets real agitated close the blinds or do whatever is necessary to get him to relax.

I need to get some exercise – over then lifting him – real exercise – like I try to het him to use the Gazelle and move his legs and arms – as well as yoga. I still need to fix the TV and set up the DVR player so I can watch the yoga DVD.

His other fixation is his watch- it’s as if he can’t accept it is OK. He wants to have it fixed- we actually had a good moment when he was desperately trying to tear apart an electronic device and allowed me to show him that he was on the verge of breaking it and not finding the right access door to the battery. That was a huge moment. He has denied needing any assistance and we have hundreds of dollars of electronics that no longer work because he thought it was broken and then broke it. We are still trying to locate the Sirius power supply for the car that he has put somewhere we haven’t looked as of yet. When he took all the power supplies for all the electronics that were attached to the original machine and out them all into a box – I almost lost it – I have no idea what goes with what without reading each of them and they have infinitesimally small writing black on black – but now that I have new glass for the first time in four years – maybe I can actually read them. He has new glasses and still treats them like his old ones- wearing them high on the side of his head and low on his nose. They are transition lenses and he isn’t used to having something darken – once again I was wrong – I thought it would be easier for him to have lenses that darkened and kept him from having to change glasses – but maybe the darkening is making it worse for him. It is hard to know. One minute I think we are having a regular conversation and the next we are closing-up the house and being afraid.

He did pretty well when we were out of town – the highway was a hellish experience- but being around other people whom he loves made him happy. He liked the bath with multiple showerheads and I loved the fact the shower was as large as out bathroom done in Italian tiles– with a huge tiled seat in it! God that was great! More I want more like that!

He has fallen asleep. Of course he has – I want to leave in about ten minutes and so I will have to wake him and get him ready to head out the door. Maybe we need to purchase a lotto ticket – yes- it is time to WIN BIG! Right Mom! She was such a gambler – not really spending a lot of money but always checking to see if numbers came in each day. I guess I come by it honestly- even her mother paid the man who came to door to play the numbers. And so it seems that a little gambling to add money to the household kitty is a normal maternal activity. Right, ladies!

All this in my life and the world is mourning so many people who have passed these past two weeks. Robert McNamara was the latest reported on the news. But of course, Michael Jackson is what is really the word. There are, reportedly, people killing themselves because of Michael’s death? That is too much. And the problem that there are not enough seats to satisfy those who want to attend the funeral.
I guess I live in a different world. One where I have to pay the bills and take care of a man who is easy to love not so much of the time – it’s a reminder that I wouldn’t like to be him and would hope someone was kind to me- and would love me- whether I made sense or not.

All the stars will not come to my funeral – maybe the kids who become stars – but not like this – a circus- media coverage that doesn’t stop- and people either in mourning, angry or indifferent! Too much – I can’t process it all. I only know that 1 $5 mil estate is a lot of the problem. Money and greed - and “for the children” are all blatant when that kind of money is present for the taking.

Beatings on the news – mosques under surveillance – heavy police – Beijing- Russia and who is in charge and look back at VietNam.

The world is not an easy place. But I am happy to be here and I see myself being a part of it for a long time to come.

Right now- I need to get my muscles in better shape and to accept while looking to the future.

I am grateful for this time – to be able to spend time with the man I love- even though he is losing abilities- he is still there inside – and whether I can see him in his actions – doesn’t mean a thing – I know he is in there and I know that I love him.

How lucky can I be – we had the chance to get to know his mom, and my parents and our friends and spent time with them before they died? It was never enough time – I would always ask for more – but I am grateful for the hours and days we spent together.

And I have to honestly say – I am happy to be with him- help him out – doing the laundry, fixing food, wiping up stuff or whatever else needs to done. He would do it for me! Of that I am certain! Because he has! So our pact continues – maybe I can’t expect as much from him as I once did- and maybe he can expect more from me than I ever gave – but our marriage and our partnership will continue. We might even make a movie or write a book about these events. Why not? Everyone else does ☺

Peace Love and Harmony

The 4th of July

2009-07-05T14:18:00.001-07:00

The 4th of July – actually the 5th – 2009

Another year has gone by and the time of the fireworks is here! I love fireworks! We used to drive up north each holiday and the most exciting part of the ride was to watch the firework displays as we passed each city along the highway headed in either direction. It was like a week of fireworks – up close and then from a distance – all of them as beautiful and entertaining as the last. Some more spectacular – but nonetheless – all of them dazzling in color and sound.

Last night we watched the fireworks on the TV in our home as they were shot off first in Washington D.C. and then NYC. They were spectacular displays – but the most exciting part was the live music that was played while the pyrotechnics were being shot into the dark night sky. Even though some of the music was the same – it was also the reminder that these are our patriotic songs and to sing along or pretend to be the instruments is always a pleasure. My husband is subjected to my sometimes off-key performance as I really get into the musical portion – especially with the 1810 Overture and the becoming the blasts from the canons.

I have always been this way. I was an embarrassment to my friend when we went to the band shell to hear the local orchestral bands play and I would sit on the top of the seat in the back of the seating area and play each and every instrument (as an air instrument) that had a solo part or even note! But I can’t help myself! I have the same problem with crayons or chalk – I just have to do things with them – make things- draw and design and just use these wonderful instruments of beauty.

Maybe these are my blow-off valves! When things get to be too much for me – I use these to blow-off the steam and don’t really damage myself or anyone else. That’s pretty cool! Art seems to be a way of releasing the built up tension and crap that blocks my thinking and emotional stability.

I have also found that repetitive activity allows me to calm down and let go and forget what was upsetting or making me crazy. I love FarmTown on fb and can’t deny that even when I can’t sleep I sometime turn on the computer to plow or harvest or rearrange the landscape of my farm. That and Mafia Wars – there I am accumulating millions of dollars and practicing handling it so I’ll be ready when it really comes into my real account and not merely a virtual account. I figure practice makes perfect – and in these games I get to handle oodles of money and make decisions about spending and saving and using it and seem to be doing OK at the present. A few setbacks – but they are only a virtual reality.

But when I am busy- all these outlets are left alone and I just GO! I realize that I do that. Last week when my husband was out exercising and the cleaning lady was here I attacked the back rooms with a vengeance and made some wonderful progress. Of course I was ready to keep going but my husband returned home and I had to make lunch for him and his friend and by the time I had done that and cleaned up and then his friend left – the afternoon was half over and I realized I was tired. So instead of going on – I took a nap.

Which brings us to sundowners. I think this is the condition we are experiencing. While we were away and in a hotel room I left the bathroom light on and he actually slept and moved better. Back home I tried it and it seems to be a bother rather than helpful for him. He feels the need to get up and turn off the extra light. Last night was awful- he spent so much time praying aloud- and meditating by humming “ah”. Do you know how long you can actually hear that before you want to stop the “ah”? I tried redirecting his attention to prayer – and then he would ask me to pray with him. He was afraid and could not tell me of what. Later in the morning as I changed the soaking wet sheets after getting him out of his sweaty soaked clothes while he used the bathroom I asked him what it was all about- and he said – was it real? Or a dream? BAD DREAM… not even close to real – except for the hours of sweating, clutching, praying and aaaahhhing!

We took pills and went back to sleep as the birds were starting to chirp and the air was getting sticky – so I closed up the house and turned on the air conditioning and waited for sleep to come as the dawn slowly crept under the shade and spread some light onto the carpeting and over to the bedding that lay in a heap on the bed.
A few hours later awoke and actually felt refreshed! Must have been an inactive time for my bed partner. We turned on the TV to watch the world’s favorite populist preacher –“speaking faith into your future” – a repeat from December – but a good one nonetheless. He – the man of many hats was really caught up in the words he was hearing and professing a belief in the words he was hearing. He actually arose a much happier and lighter man and has spent many hours today in a very good mood. HE is sleeping right now- but it is almost 5:00 p.m. and he has taken his pills for the third time – and is still fighting an infection – and is bruised from the extraction of his wisdom tooth on Wednesday – that went pretty well even though he looks pretty battered. Next week another one! Ouch! He had a beard trim and mani and pedi and felt better from the pampering – as did I.

This week we return to the Neurologist- old and new! I didn’t have him on the meds because of all the other pills he was taking for the tooth – and when he was on them he couldn’t move and I barely could move him- he was dead weight – and I mean dead weight – 220 lbs of nothing helping to move it. So we set them aside and then, last night he was hallucinating a lot and wanted to try the pill again and instead we had nightmares and screaming and then the church marathon of prayer and meditation. Whoa! Guess the pills are not interacting with the rest of the meds he is on. He is so tired right now- he is snoring and out of it. I should take advantage of this time and get a nap in as well. Good thinking – I’m off to do that.

He worried about not seeing the grandkids and the daughter-in-law sent a message on fb that they would like to come by and visit next week. All things come together in the right time. I am off to sleep and looking forward to seeing the girls and praying that he can conquer his demons and seek peace for him – and us. I wish everyone else a good week. I am planning on having more sleep and more money in my life this next week. And definitely -more fireworks to keep the adrenaline going!

PEACE, LOVE AND HARMONY

TRYING

2009-07-05T14:15:00.000-07:00

July 1st 2009 Wednesday

Fireworks tonight – grey and cold outside and we are at Great Expressions in Warren MI where my husband is having the first of two wisdom teeth extracted. We paid extra to have the laughing gas- to see if that will alleviate some of his anxiety – I am praying that it does not cause other problems for him-

We did not sleep last night – he was anxious and rolling around and I finally gave up at 4:20 and went downstairs and played on the computer for a while and then made some coffee and went upstairs about 7:00 and asked if he wanted breakfast. We had not done well- my leaving the bedroom was misinterpreted and not helpful and I cannot help myself- I get so tired of getting up and down and not being able to actually help him while he struggles with every thing from moving to walking and using the toilet and then washing his hands. It is such an ordeal for him and takes so much of his energy and then he has to get back into bed and settle down and use the pillows to support the head and legs and get himself into a spot where he is not the Prince and the PEA and feeling everything as lumpy and bumpy and uncomfortable.

He has gone into the back and I sit here like the mother who has abandoned her child and is waiting for the results. He has two pillows to help him and he “is counting on me” to make sure everything is OK. Another guilt trip for me should anything go wrong- and it won’t and can’t. Cancel - AND HEALING POWERS TO HIM as he goes through this procedure. We had Doug telling how he lost the use of his ace for six months after having his wisdom tooth removed and BELL’S PALSEY! That was not helpful. He frets about the everyday and this is beyond the everyday. He has not been taking the pills from Watson- because of the fight with the infection & penicillin- We go back to Watson next week – and I will have to explain all that as well – but the pills were causing him to lose all control over his muscles and needed constant help with any movement – it was frustrating for both of us. I place him in YOUR HANDS Father, and believe that he will be OK and the cost will be worth it.

It hasn’t been easy- this has been very difficult for both of us. I am not used to not being able to get things done. He is OK for a few hours and then WHAM- it’s as if everything is gone and he is incontinent and woozy and sounding like a drunk. It was as if he became another person and there is no reason that is explainable. He eats breakfast and then he runs around the room and does things.

While he was gone to the OPC yesterday I had some time to tear through the back rooms and at least throw things into boxes and begin the process of cleaning. I can clean the windows and the blinds thanks to making a path to the back of each room.
We will see how he is after all this and then maybe if I can take the vacuum back there I can get some of the cleaning done – if not then maybe tomorrow. We are about to win big money and take care of all these expenses. Glass and teeth and necessities of life seem to be the most important at the moment. WOW!

I am resigned- and not accepting! That is what kept going through my head this morning. It seems as if he is fighting it – and I fight him and then we fight each other and then we are in a no-win situation and need to start all over again.
This morning was a perfect example. He wants to be on me- near me, and as close as possible. I want him to be able to do things independently as possible. I feel like the tough love mother and yet it doesn’t feel right- he is my husband and not my child.
I want him as a partner and each time I lift him up and throw his body around I feel a little bit like a caregiver and not a wife. And that’s what sometimes bothers me. I cannot see these as separate and need to accept them as one part of who I am and must become.

It was hard to hear my sister-in-law and her frustration with my brother. She has insurance and is already shopping around for a place to put him when he is no longer able to get around by himself. He fell three times while in Wisconsin- and refuses a shower chair. I told her to buy it and tell him she needed it to shave her legs and since it’s in there – he can use it if he wants. John likes having it even if he only uses it to steady himself. When I am in the shower with him, he uses it to sit so I can wash him and rinse him more easily. We do that at least once a week.

She feels alone and I sure understand that! I told her that we joined a Support Group & recommended it was a good place to start for both of us. She is as tired as I am. I can see that. She is using work like I do as a chance to get away for a while. I know that’s what I am doing – if I had the money I would probably hire someone to help out and still do some things away from him- we both need the time away sometimes.

Summertime and the Living Is E-Z!

2009-06-17T17:48:00.000-07:00

Summer hasn't actually arrived though everyone seems to be complaining about the lack of summer*. We do that a lot don't we!* It is so easy to be a part of the group complaining- we have all done it - added out two cents and feel a little better - at least for a moment when we were part of the group that was in agreement 0 even if it was a negative agreement. We felt connected. We felt like others understood.

WOW! I guess that is why when illness or some other unpleasant and even tragic events happen (which we are not accustomed to having in our lives) we seek out those who will side with us - be empathetic to our dismay, our loss, our new challenges. We don't always see these events as the blessings and challenges that are needed in our lives. We would prefer they happen to others and we would be glad to be sympathetic. We could say soothing things to them and tell them they are brave and it will get better. But when it is in our life and we are the one who is facing the unknown we sometimes cannot see the forest for the tree.

Marianne Williamson said that a miracle was a matter of perspective - change your perspective and it is almost like a miracle. She wasn't the first to say that in my life - probably not the last either - but it was the first time that I really heard it and really understood it and was flabberghasted that it was that easy. It really is that EZ!

All this crap about others causing my discomfort - bs! - others demanding my time and attention - bs! - others not caring about us - bs! - others not caring about the daily struggle with disease - bs! - and why should they?

When I accepted that this is MY LIFE - and that I chose these things and these people, it changed everything. When I accepted that I was where I needed to be and who I needed to be - it was so much easier! Even the lack of sleep and the search for answers to my husbands complaints and needs - were no longer mind boggling- or enervating! I really was OK and what was happening was more than acceptable.

I should be thankful and grateful - and I am! I love the man I married- how lucky am I! Ifee his pain and wish him greater independence - not his need for me to do for him! How great - not an enabler! I actually enjoyed my job- the part that dealt with the students and seeing them achieve - even the paperwork was necessary to prove that they were accomplishing things for themselves - despite their past history. This is now and can't be compared to other classes or other times or other places. This is now and there is a lot wrng that needs to be fixed - but I can handle this!

I realized this because one of the younger teachers at a retirement party came up and said how she wanted me to know that they thought I would never last in the program I was in all year. They were sure I would run from the room yelling and screaming and wanting out! It's a good thing I never heard that because I would have taken the bet. They were surprised that I cold handle the so-called worst-of the worst kids! I gues I never saw then that way - perspective - I never saw them that way and even though two of them did end up in jail- no one died this year - yes - one was shot twice - but he survived and graduated! Some days I wished I had more resources to use with them- books on tape- and better math worksheets and money to purchase computer programs for reading and writing and food for them - to stop the hunger they brought to class - from lack of nutrition and adults not caring about what they did and who thery were!

Another teacher upon hearing about the rumor circulated about me said she wished they had set up a betting pool - because she knew she would win if she put her money on me. What a great thing to say about anyone - especially since she is as old as our daughter - and she respected me as an educator. That was pretty cool! It also explains why other teachers were coming and congratulating me on having such a good program. I had no idea there was such scuttlebutt about me and the program. I thought I just came to work and did my job and went home and interacted with other adults when I needed. Five hours in the same room with the same students with no breaks - it can be like being locked up and away from all other reality - and yet the noise from the halls always reminded us where we were. It was that inside that room behind those painted doors (done by a very talented student) - we were somehow safe and happy- even if it was only for those hours!

So- the school year is over! The last week of school my personal floor fan and lunch bag were taken from my room one day. Headphones another day and I was lucky- others had their rooms trashed and electronics stolen. So I was told to be happy it wasn't worse!. Something wrong with that!. My room and the others were locked- which means someone with a key entered and took things. And yet no one saw or knew anything about it - someone walking down the hall with a 20" fan or a Dell computer - that wouldn't be suspicious? and we have security cameras - and never mind - that's over for now! And I really have come to the point where things are not the issue.

The issue is I have time off - and we are going to visit with my brother who had progressive stage 4 MS - and is closer by a thousand miles because he is visiting his kids this week - and is only a seven hour ride away in a car. So we are headed to see him - last summer we sat with my older brother as he struggled with pancreatic cancer- but passed three months after his diagnosis and we ended the summer wth his funeral and seeing relatives - like my other brother - for a minute- at a service and luncheon- before going home to grieve the loss of another sibling.

Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!

2009-06-15T16:33:00.000-07:00

Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!And a big breath and again!

If love were a roamer – I would be a nomad!

2009-05-23T11:17:00.000-07:00

There is barely a breeze to move the leaves on the Japanese cherry that overwhelms the back yard with its presence. Somewhere there are birds – but not as close as the tree- for their sound is filtered in the background. The noises from inside are more prominent – the water as it rushes into the laundry tub to fill it and rinse the clothes – the rubber balls hitting the inside of the dryer as they bounce with the clothes and rugs to become dry enough to fold and be put away for another week or day as the time permits. There is the sound soft of the Adagio in E being played on the TV from the music subscription that comes with our technological connection to the rest of the world. The morning has already been filled with high drama and unrest. We are now at a point where we are quiet – as quiet as the lovely violin that creates sound that touches my heart and makes me melancholy.

Next to me there is the sound of the eraser as he works it across the art paper I have given him to draw – draw his nightmares – or his group of friends that haunt him, or anything that gives me a look into what bothers him.

The night was like most nights – we were up several times – he soaking wet- through clothes and sheets and half-asleep as he stumbles into the bathroom to use it before coming back to a dry bed in his new dry clothes that we have changed prior to his leaving the bedroom. It is more of a ritual now – than an annoyance or a mystery. It is something we have come to accept – and that is the frightening part. We do not know why he is like a menopausal woman with hot flashes and soaking nights- I have been over them for many years now – and I disliked the heat and the sweat and the cold clammy clothes – so I make sure when he awakes – he is changed and dry and the bedding is as comfortable as it should be. I know what it is like to have it otherwise and would not wish that on anyone.

The laundry piles up in the laundry room and so this morning I began with the wet sheets and towels and rugs. The night clothing is a huge pile that has accumulated over the week – it doesn’t take up as much room as the sheets and bedding that needs to be washed and replaced. My little laundry room gets overwhelmed with the bedding and so it is a priority to make sure it gets washed and folded and ready for the next night or day.

Last weekend we had to go to the laundromat – we haven’t been there in years. It was an occasion that I hadn’t anticipated. The mattress topper had gotten wet and needed to be laundered as well as the pillows. I had successfully washed these articles in our washer and so I filled the tub with the articles, and soap and started the machine – not expecting anything but the desired results. The day had already been stressful and we were on shaky footing. I was going into a funk – a “poor me- alas , poor me” routine, while he was on a “why can’t you believe me? And “what do you want from a sick person” monologues. We made a sorry pair of characters who were stepping on each others lines and upstaging and demanding the spotlight with no one to watch the performances – too busy in our own small worlds. We kept trying to reconnect and somehow – the connection would break and we were back at each others throats like vultures. Afraid of what we were doing and yet seemingly unable to stop the actions.
Suddenly the machine comes to a halt and the most outrageous smells and noise start emitting from it. It sounds like a piece of metal being rendered into nothingness – total destruction – and the smell is like a motor about to blow up or start on fire!
The washing machine is stuck and unable to move with the large load caught around the post and the motor burning and trying to turn – the sounds and the smells are stopped with the button to shut it down. Now with all the bedding in water and soaked through – I start to try to unwind it and lift it into the washtub next to the machine. The weight is unbelievable. I grab and pull and try to unwind and pull and push and get a little out and try some more and my chest is on fire and my head is spinning and I am thinking, “This is not right!” I call for him to come and help. We struggle with the topper and it’s not budging – I ask him to get a garbage bag from the downstairs so I can throw the soaking wet things into something that will allow me to get it out of the house. While he is gone I start to unload the only laundry basket I have of all the bedding that awaits use –and is stored there rather than the linen closet because it is easier to access in the middle of the night – and finally get it emptied and ready to use to haul the wet things away.

We struggled with the wet, heavy things and finally got them into the plastic garbage bag, into the basket so we could haul it out the door and into the car. He got a box to carry the laundry items and after checking on the times when the nearest laundromat was open we headed out the door with $10 in quarters to feed the machines.

Somehow – in the five minutes it took to get there I was suddenly hit with the thought, that was more like a shaking to the my foundations that “this is your life”. Oh my God! This is my life! This is life! There are no things that will be happening to make it better because I did what I needed to do – there will be no surprises or people jumping out to say ‘ Good job!” This is my life and that is all there is to it! Acceptance would be helpful at this time.

Now the fact that I had about four hours sleep nightly for over two weeks time – and had a partner who was experiencing more crap than anyone should have to handle – not to mention his being upset because he couldn’t lock the house because we had a house guest – or that any job security was lost – or that we had any savings left – and I was back to the “poor me” and realized! “It’s time to suck it up and get on with the living! “ So as I looked at my hands on the steering wheel an saw the bruises that covered them and knew that this would be with me for awhile –I saw my mother’s hands – and realized – not a lot changes- when you keep the same beliefs and live the same way!

It wasn’t the outside that needed changing – and it didn’t matter how much I had already changed- or thought I had changed- the inner child – the inner me was still acting like a spoiled child who was expecting a gold star for doing my job! The media had continued to penetrate my brain barrier and corrupt my blood flow to make me become more of what I had considered eliminated from my life (the twenty minute resolution to the problem)– to becoming the child who needed the comfort and no longer wished to be or act like the adult. God help me I was giving up! I was giving up and letting it all go because of lack of sleep and now lack of good thinking. What was I doing and why?

And I saw the bruises starting to form – and I saw the daylight and sunshine and the man next to me – and I had to stop all the nonsense and live in the moment – really live in the moment – and there was comfort and love and I no longer was afraid or hurt or caught up in anything but the knowledge that I was where I was supposed to be at that moment in time. What a monumental thought that was – to feel it – and truly know that it was true.

We did the laundry – we even played an arcade game or two. We sat and experienced the heat of the building and the noise and watched as people came and went – putting clothes into new machines adding detergent and coins and leaving. It was a story unfolding and I said that I wished I had a computer to write the story- as he went through his notebook filled with ham radio information – to study for his test. I accepted that this was where I was and this was what I needed to do.

We had anticipated news from the neurologist and all she said was try changing the meds and there was no report. He gets very unhappy with that news – as do I. But I try and we try to change things- and sometimes it works and then it doesn’t and no one really knows why or why not.

I was suppose to attend a dinner where all the students who had a 3.5 or better were honored for their achievement – they also chose a teacher who they consider has the most impact on their educational career. For the second time in the four years I have been with the district a student as their mentor chose me. I was keen on attending this one – since I had missed the last one due to miscommunication and this one I was only informed about five days before the event. It seemed like a chance to be there for this young lady whom I had had in school for two years but also in the summer program we had for TV.

I was anxious to be able to bring my husband to this event because he knew her as well – and it would mean not attending it I didn’t. I was told by some secretary that there were no extra seats and it was impossible to have an extra person attend – I told her there would be an extra seat – since I would not be able to attend. I was pretty upset and then decided – the hell with them- we will go and we can sit in the back and I can walk with the kid and then leave.

I came home all ready to take a quick nap and then dress and run down to the event. I was met with a man who was over the top with fear and suspicions and angst and I lost it and cried as I sat and listened to him rant about the people and things that only he could see and the injustices he felt were being done to him. No amount of logic would work. And I cried because I knew I couldn’t go and I wouldn’t be there for this girl who had chosen me – and she should have picked someone who could be there with her. I felt awful. I called and left a message with the counselor to tell her I was unable to be there – and apparently she told her right before she was walked across to get her plaque. It still makes my heart feel heavy to think about it. No one likes to disappoint another – and I certainly hate to do it to a teenager – who already to seeking out people who can be trusted or not.

It took until 8:00 that evening – and the event was at 6:00 – to calm him down and get him back from whatever hell he had gone to.

That was all I could do.

We both had lost too much sleep and he probably was suffering from dehydration from all the sweating. We got ready for bed and like every night – no matter when we start it takes forever to get into bed – he starts out OK and then gets into a cleaning frenzy with his eyebrows and ears and neck and over and over again washing and washing and washing – until he is red and the skins looks like it will fall off. I cannot stop him for his OCD – unless I take him out of the bathroom – and that is no small feat. So at almost 11:00 we went to sleep for a couple of hours –and then he was up four times before the alarm went off and it was time to get up and get ready for another day of work.

Things changed at work this past week. Since we are in such disarray as a district with the feds in investigating mismanagement of funds – we have a whistle blower set up to use to report things. One of the teachers reported the way the halls are – we had a fire outside a room and evacuated the building and students roaming the halls with little or no consequences and a lot of threats over the PA. this person let the new manager of the district know how it is every day at our building – and he sent someone to check it out and then deploy a small army of security people to walk the halls- arrest the kids who refused to go to class – and for the first time since I have been there- clear the halls every hour of a school day! It was like a miracle – you could walk the halls without worrying about running into gambling, dope smoking, nasty kids with foul moths and adults screaming at them while using pepper spray to control the situation. It was as if I was in a school building run by the adults who had created a safe place for everyone there – ad not run by groups of kids. OMG! No swearing and cursing outside my door and people throwing each other at the door and screaming and throwing things. There was none of the nonsense that I came to accept because no one would do anything to make it different. Maybe the loss of her job- maybe a lot of things – but mostly thank God, for the person willing to put it out there that there was a lot wrong with what was going on in the building that needed to addressed and not merely left to fester and go on.

THAT was a blessing – a true blessing! Small army or not – and the kids though complaining are actually relieved as well.

So it has been a hard month – I did enjoy a wonderful birthday dinner thanks to all the efforts of my dear husband – but he also had some terrible moments with the storm troopers from Star Wars on the streets as we drove in the downtown – and the nights of horror that he experiences as he sees people at our bedroom windows even though the shade and curtains are drawn.

He has made some strange remarks about this weekend and the need to make outrageous purchases to enjoy the time off. I have been dreading the summer and told him that I might want to teach summer school- something I dread – rather than be with him 24/7.
Bolero just played on the music channel and he told me the story of playing it at a sock-hop and I asked what the kids did – he said – they left! I told him I remember hearing that story as an urban legend – and it was always credited to some unhappy A/V techies – and he said yes- he and his buddy! Oh WOW! Too much to comprehend- but it made him happy for a moment. He has been drawing for over two hours and mostly has erased everything and there is not much there. I have changed the music to Pop standards – and am still working on the laundry – and still need a shower and still need to decide what to do with the day – if there is a need to decided…

He likes company- but he likes to be alone – He wants to help others but he gets caught up in needing help- this morning his eyes were on fire and he couldn’t open them- as I was in the bathroom trying to use it for a moment alone –he was upset and would not open his eyes and I told him he needed to put some cold water on his face and flush out his eyes - why this happened I have no idea. I had left him at the kitchen table eating his cereal and drinking coffee and thought I could use the toilet in peace – and suddenly he is blinded and has something burning his eyes so badly that he is crying and calling out –you couldn’t write these scenarios – because they are too unbelievable – really it just shifts so quickly from OK to scary hell!

He wants me as the one to make it better for him – and I want him to make it better for himself – I want him to be the man I once knew – I still love him so much- and I would still do anything for him – but some days when he is most argumentative and it’s almost impossible to reach him – I wish I didn’t! It takes so much out of me – and I don’t know how to take care of me – I leave here to take care of more people – and our home was where we came to regenerate and renew ourselves and now – it is another place where I need to be vigilant and the adult and not a place where I can fall apart and embrace the child inside who needs the hug and the quiet to rest before the next storm.

I put myself into the higher powers to lead me along the right path! I need one of those green lines that runs ahead of me – so I know when I missed the track and veered too far right or left!

It is almost June and the end of school and the acceptance of whatever is to happen – that is what I look forward to. I hope to see my brother and his wife and kids & grandkids and that we can travel and get out of town – an infusion of money would be greatly appreciated and I know there is an abundance just waiting for me – so I’m reaching out for it!

Hello Abundance – you beauty you! I am open to greatness and expecting only great things for myself and those I love! We will be better than OK – we will be abundant in peace and harmony, spiritual, emotional, physical and mental wealth and completeness. We will be whole and happy and attract only those who are meant to be part of our lives and not those who add distress or challenges that do not allow us growth and movement toward our holy spot and our moment of fulfillment.

I'm pitching my tent for a moment to rest!

Death leaves a heartache no one can heal, love leaves a memory no one can steal. ~From a headstone in Ireland

2009-05-16T11:22:00.001-07:00

Traditions That Need To Be Left Behind!

I thank you God for this most amazing day

2009-04-26T09:18:00.000-07:00

I thank you God for this most amazing day, for the leaping greenly spirits of trees, and for the blue dream of sky and for everything which is natural, which is infinite, which is yes.
e. e. cummings

I don’t know where the time goes – Our lives move on daily and yet it seems as though the minutes are caught up in their own momentum. Each day this past week offered a little joy. Some of the moments were fleeting – but I tried to stop to enjoy them.

My days feel like I am on a merry-go-round that doesn’t stop with incessant music.

I think that I am in a position to do something to change students – and I often feel that I am only allowing them to continue to remain the same – and not stretch to be better or something greater than themselves.

I and my colleagues were given a customer service approach speech by an administrator last week – citing the use of “the art of war”, among others– as a method for choosing style and behavior – choose your battles – I’ve always believed that to be true – but I never thought that teaching was like providing customer service. I’ve worked in the work world where customer service is necessary to keep a client or even get paid. I guess I missed that Education class where we were told we needed to become what our critics want us to be and not try to take our clients to a higher level. I fear that like TV and it’s lofty goal to show life as it should be – we are somehow caught up in showing life at it’s worst – and thinking this is natural and normal. Yes, the Craig’s List killer is real- but probably more so because of what we have come to accept as entertainment, rather than the way the world really is.

Maybe the neighbor next door is a serial killer and I am too naïve to believe that someone who lives so close is a terrible person. But I wasn’t taught to look at the bad and make it the majority – I believed that bad people were caught and punished and the majority of people were good. Naïve – probably considering all the people I’ve known who work the system and don’t realize how they are caught in a behavior that is based on “taking” and not giving.

I don’t go home to a place where I fear for my life – drive-bys, drugs or shootings in the street. At least I don’t now! At one time I lived in the middle of all that. I would go to school (classes for college) and then return to the two-story income where my father would stand at the door with a baseball bat in one hand and a loaded gun in the other as I drove into the driveway and came up the steps and into the house. Outside – people of all ages and genders were wandering, yelling, offering and demanding – high, carrying and acting the fool. A lot of the neighbors were transient and only using the houses to sell drugs, guns and then move on. The police were daily visitors to the block as they knocked down the doors and then announced “POLICE”. It was a whole different world – but one I did live in and through. So – naïve I may be – but stupid or living in a fantasy, I do not think.

At nineteen years of age I took a 1st grader home, part of a group of kids I was teaching catechism to (he asked if I was married to the Jolly Green Giant because I was so tall, and he would hide under the table and answer from there and I fell in love with him from the first day!) because he had begged me for three weeks to come and meet his mom- and so I did, and when I stood on the porch and waited for him, watching him excitedly run into the house and calling for her – I could hear a male voice yell- “Tell that bitch to get off my porch or I’m going to kill her on the spot with this here gun!”

The little one ran out – with tears running down his face and begged me to please leave before his daddy got any madder – he was sorry – he didn’t know he would be there!

And so I left – a little shaken- but more horrified at what this five year old had to do and know – this was no way for a kid to grow up! And that was the part that hurt. I don’t ever recall my parents behaving that way – though we had neighbors whom the police would visit and who would share with the neighborhood their unhappiness with their spouses, children or whatever bothered them as they went on a drunken yelling spree that sometimes led to violence.

This was the 2nd time in my life I had become the object of someone’s hate for no other than reason than I was there! It was a lesson that wasn’t lost on me. I knew I wasn’t the first or last to have it happen- and I wasn’t afraid to go on despite it. But the youngster didn’t come back the next Saturday or the next. It was almost two months before he showed back up – just to tell me “good-bye” ‘cuz he was moving! That little face looking up with the huge brown eyes that held a world of sadness – and I hugged him and wished him well! The way it 'spoze to be!

Sometimes that how I feel now! All I can do is smile and be kind for a minute before they are gone into worlds where I don’t belong and don’t fit!

I’m older and supposed to be wiser! I’m still waiting for that last part.

We had some good moments this week where my beloved was 98% there with me and we had some wonderful conversations and he wasn’t caught up in another world. I don’t know how or why! He asked if anything was different and I said – NO – the meds were the same – but somehow he was different – more like his old self. It was nice.

We still have some bad moments – but they are getting to be a little easier to handle. I’m losing sleep again – which is the bad part. I used the time off to sleep and now I realize – we slept during the day because the nights are so active and crazy! Five times from 1:30 am until 5:30 am last night we were awake. Then he sleeps after eating or whenever. He just falls asleep, holding a book or seemingly watching TV. I’m not quite tuned into that. I still clean up, do other things and have a mind that won’t shut down as easily when the sun is shining and the clock tells me I have some time to do things!

End of the month and bills to be paid – and checks written and then wait for the wages to be deposited to cover the checks - Like a lot of people living from check to check and not meeting the bills like we once did! Oh well! Doing what I can – and conserving and changing – we’ve been in a recession mode so long – I need to get to that other place -

"All I ask is the chance to prove that money can't make me happy."

Have a great week – and Welcome MAY!

THE LAST DAY

2009-04-17T21:29:00.000-07:00

– It’s the last day of the vacation - it went so quickly- and I did so little!

I guess I should be shouting “HURRAY” for that.

This weekend I will be a back to TC of B and getting ready for the last few months of school. It’s almost over! Graduation for those babies I started with four years ago. We are all in a better place now! They will be heading out to make their mark on the world. At this year’s graduations, there will be many of the kids I know walking across a stage to receive a diploma. That’s a wonderful thing!

The winds of change seem to be blowing through the district – I don’t know if the changes will affect me personally. The union people seem to feel that attrition will take care of the teachers that need to be let go. Wait and see! All the admins have been given their pink slips and have to interview for a job. The feel has changed … I’m not sure I can predict anything from it. I need to just go and do my job- that’s all I can do!

During this time off from work I had the chance to sleep and that was a blessing. I feel a lot different than I did ten days ago. No more murder in my heart and head. Sleep has done its wonders and I am thinking a little more rational. We will see the neurologist in a few weeks and hear what she has to offer – as I ask her about the phobias and other bad days he has had.

There is something about clapping that really makes him move. When he is trying to get up or move – rather than helping him – if I clap my hands together he can get himself up more easily. How and why? I don’t really know! But it works every time.

We need to find his old ham radio license that has disappeared somewhere in this house. He is going to take the test next week and needs to turn in his old license so he doesn’t have to take all the tests- or something! I don’t know! But it means that tomorrow I have to start tearing things apart and searching. I started today in the places I thought it would be and –it wasn’t. Now I have to unearth it – literally from the mounds of paper and stuff that has taken over the back bedrooms. I’m praying for a quick find – and little disturbance of dust – so I really don’t have to end up cleaning – not right now at least.

I’m going to get him to go to sleep … Nite!

VACATION _ Parkinson’s

2009-04-14T09:42:00.000-07:00

“My family really needed a vacation!” WOW! People still speak like that! It’s only when you are in a depressed area where people are barely eking out a living that you lose sight of the ordinary. A vacation – that would be so nice! I wanted to do a Cruse to Alaska this summer – it was one that I thought we would both enjoy and also give us the chance to visit my brother in Seattle. I haven’t given up on the trip- but as they say – fear is easy to hold on to than hope! I am on vacation and what does that even mean? Well – I don’t have to go to work and deal with traffic and people and problems outside of myself.

I still am working with the husband on handling each day. Being home is not the answer either. It makes no difference who is with him or what we have done – he still has moments that take him away and he cannot help but go with the flow and be in a fearful place that keeps him edgy and unhappy.

He promises to work on it and make it better – like he really has control over it. If he does that will be wonderful!

The holiday weekend was one used for sleeping and resting and attempting to catch up with some much needed rest. It doesn’t make any difference about whether I go to work or not – anything he has to do- swim- whatever – weighs on his mind and causes him to be wary of sleep and wanting to ready to go! We were late this morning only because his ride was twenty minutes early. So he felt rushed and I told him it was OK! He did all right then- and go showered and dressed to leave. I gave his friend some coffee and a dunker while I helped him get ready.

We did not have a big meal- I don’t think we had much- I don’t even remember. I know we had plenty of food in the house to eat and be OK. I put off grocery shopping until my check came through – today. We did go yesterday and spend his money and it was more than anticipated. The cost of goods has increased again – what good is a $20.00
stimulus when the groceries go up $45. There is no winning with those numbers.

We didn’t call anyone – put it out on FaceBook that we were wishing everyone we knew a Blessed Day. Funny- not even email anymore – FaceBook. ☺

I heard from a friend who is going through an emotional journey – the kind we all go through where we need to sort out our thoughts and feelings from reality and the real road we need to travel. Sometimes it is too difficult to see where our hopes and our lives run parallel to where they are merely a reflection of what we think we want. I said yesterday, “Be careful what you wish for!” and he asked me “why?” And I said because – “When you get your wishes you have to live with them!” I was wondering if my wishes were like those in the Aladdin story where you had to choose the words carefully or be prepared to live with the choice you’ve made. Is this what I wished for? Then I forgot to define a few of the parameters of the situation. Wishes are never what they are held out to be! Merely thoughts sent out to fill the air with hopes of things that should or should not be part of one’s life.

I do have hope – but it is difficult to argue with someone when they throw things at you that have never said as “fact”. More difficult to hear hurtful words that are being tossed about at 3:00 am – and to escape and get away – means only an uncomfortable sleep for me – as he falls back to sleep in the big bed – whether I am there or not! Silliness in the morning light – but too hurtful in the middle of the night. No chance to make it light- because it gets more intense and more angry and hurtful. Even physical – I can understand how people who love one another can kill or hurt each other. I can understand what I never thought I would – but I can now! And that is a part of me that I fear. To not be able to handle the situation in a calm and rationale manner is a frightening place to be. To think in hurt and not peace is a distressful mindset. To wake and rue the night before is hard – when we tried for over so many years not to go to bed mad – what happens when you are awakened in the middle of the night and accused of things you had no idea he thought or carried in his head and heart that caused him so much pain.

It has been a difficult time – with the bugs still bothering him and then house still having visitors that play on his emotions. We need real visitors – but I fear they won’t come. They are afraid – they dislike seeing him weak – they are busy! And it is OK! It is OK!

He heard from people for his birthday – and that was nice. But he doesn’t remember it all the time. His sense of time is off. He confuses an hour with a day and a minute with an hour. We had the strangest conversation yesterday – Are you hungry and do you want me to make some lunch? No! OK! Then 10 minutes later – rummaging through the refrigerator and saying “I’m hungry” and I say – You said you weren’t hungry! That was an hour ago! No it was ten minutes! No, it was a long time ago!

So I have to assume that the idea of food made him realize he was hungry even though he consciously said “No!” That is another anomaly of his brain – time, space and emotions! There is a whole gamut of things to keep me on my toes. Acceptance of strange behavior is something I am working on – because it changes from day to day.
He is back from exercising – has eaten and fallen asleep holding his napkin and in the middle of a conversation with me. This is not unusual.

Guests would be nice! Nice people to talk about other things and do other activities than the usual housekeeping items that keep us busy.

I want to enjoy today – despite the rain and cold! I will enjoy the day!

I’m in overload! -

Waiting

2009-04-10T15:45:00.001-07:00

Good Friday! There’s a noisy cardinal in the tree outside my window. He won’t stop calling out. The wind is blowing the branches so that he looks like he is on an amusement park ride – bobbing up and down as he calls.

The picture was part of an email sent out - This is the sunset at the North Pole with the moon at its closest point last week. A scene you will probably never get to see in person, so take a moment and enjoy God at work at the North Pole. You also see the sun below the moon. An amazing photo and not one easily duplicated.

The Chinese have a saying that goes something like this:
'When someone shares with you something of value, you have an obligation to share it with others!'

And so it was recommended to share this by passing it on – One friend set it up on FaceBook – I thought that was brilliant - so I’m sharing it on the Blog.

The end of another week and yet it seems like the days are running into one another and there is no real delineation of things.

It’s April and I have spoken with the accountant who is also a best friend. She wants the paperwork yesterday – I wish I had sent it to her yesterday. But it will either be tonight or tomorrow before I can actually get it together and put it in the fax machine and a large envelope and mail it out to her before the deadline that looms closer each day. If we owe money we will have to scramble.

Should I work backwards or forwards? Back –
Today we slept in and then he slept while I played on the computer until it was time too late to do anything but shower, dress and head to the dentist appointment for him. We got there about ten minutes late to find the door locked and people sitting in the waiting area. They called for someone to open the door from behind the counter – no one! They looked at us and nodded in dismay but it took almost ten minutes before one of them came and unlocked the door from the inside and we were able to enter – much to the dismay of the staff –who had no idea how the door could be locked. Finally we were in – signed in and left with a half-filled room of people to wait for a name to be called. It was about twenty minutes – during which I watched as he played with the cane – turning it over, examining it like it was made of some precious metal and not merely a light aluminum, feeling the little strap that has some texture to it and wanting to readjust the handle because it seemed loose to him. So much out of a $10.00 cane.

This was better than this morning when he took an entire box of 280 sheets of Kleenex and wanted to put it in the wastebasket because he saw a bug in it. More bugs and worms and it makes my skin crawl when he talks that way and yet I pretend not to be bothered and try to get him back to a better spot.

After he was chastised by the dentist for not doing a good job of brushing his teeth and setting up appointments for after school is out, we headed home. On the way home, we picked up some fish and chips for lunch. We shared a great meal and then he napped and I played on the computer again – and ended up speaking with a former student who is graduating from college and is looking to work at the local NBC affiliate. I was delighted to hear from him and assure him he could use me as a reference at any time. He was/is a great young man. His mom put him into our summer program to have him busy before he started high school. He stayed and stayed and stayed and won awards for his work and made a difference in the program.

The news flashed a story of a gunman who killed a female and then took his own life. Another tragedy, along with a young man who died after being tasered by the police. The news is not the place to go for hope – unless you area sport’s fan and then there is the news of the home town team winning. This was good news!

Early this week we had the Jay Leno excitement as he entertained the laid-off workers and paid for an entire evening for them. What a great treat. My husband asked why people would want that? I said because it was free and fun! And meant that someone cared about them and what has happened to them. I think he forgot about what is going on in the world. He tunes out the news unless he is bombarded with it and discusses it with his friend. They are a little too much for me – way too pessimistic.

Yesterday I was going to get some sleep and time to myself as husband & friend went swimming and then home. Well – I was in the middle of cleaning out the refrigerator and had just popped one of the light bulbs when I accidently touched it with my wet sponge – (something had spilled all the way down the inside of refrigerator into the bottom) – I had two drawers and three shelves done and three to go and they were coming in the garage door. Oh, oh! So I was scrambling to think of making lunch- when I espied my husband and wondered what he had on his face: A pair of glasses that did not belong to him! His friend was immediately going on about how dear one had lost his glasses and they had found these glasses at the desk and since they worked he wore them home. Oh no, no no! These were huge aviator glasses that were scratched and dirty and did not fit and they were definitely not his. We searched his bag, clothing and jackets. He went through them, I went through them, the friend went through them. I suggested we take the glasses back and maybe someone had taken my husband’s by mistake and would bring them back. We went together – the three of us. Before we entered the building his friend checked the back of his car to make sure they hadn’t fallen out onto the floor or into the seat. The lady at the desk was charming and helpful. We looked everywhere again. I went looking for the cleaning lady to see if she had found them. His friend checked the dressing area they used – I checked the area they used. I went to the Lost and Found to see I they had been turned in by anyone. I returned and said nothing had been turned in. His friend asked me to go with him to check the area one last time. We looked and he told me which locker was used and when through the litany of what they did to get dressed and ready to leave. He then said – “Let me check my pockets.” He was talking and going through his pants and jacket and then he thumped his shirt pocket and went – “what are these – are these mine? No, these are not mine. Are these his?” and handed them to me. Yes, these were the missing glasses and an hour and a half later they were in his pocket where he had placed them – God only knows when!

We walked back to the front and gave the glasses to my husband. The lady at the desk wanted to know where we found them. His friend told the story of them being in his pocket the entire time. OK!

Now we have guilt – and I am hungry and want to eat – and have no cash- but a credit card and know that the Café’ is a favorite of both of the guys so we head there after profusely thanking everyone for their help and wishing them a Happy Holiday!

Now I have to dissuade the friend from wanting to pay for lunch – no – I tell him – My treat for all your help! I am marveling at the fact that I did not once lose my composure – make any nasty cracks or yell - or even raise my voice! I am dumbfounded by my own behavior and so we head to the Café and have a wonderful lunch. My husband eats his entire lunch – and marvels at that – I talk to his friend and keep him busy so that he finishes about the same time as I do and we are all done about the same time. My husband doesn’t have to keep up a conversation and can eat and not worry about being involved in the talking. He lets me handle that while he eats and listens. We arrive home and I am ready for a nap – It took more energy than I anticipated – we nap for awhile. Dinner ends up being a take-out and we are OK for another day – I offer him my pain pill which is about 600mg less than his and he makes it through the night with some sleep and even can get out of bed to use the bathroom during the night. We take our pills early and go back to sleep.

Sleep seems to be the narcotic of choice. The week seemed to go on forever – and I was getting only a few hours a night before Thursday night. I was and am exhausted. I am not planning anything for Easter- hoping to hit up Greek town for dinner on Sunday. A tradition we have not done for a long time.

We heard from a friend whom I need to send an email to – but – I haven’t – I did a recommendation for a former student – 2nd notice – thank god I could do it on-line, and several for the guys on Wednesday for scholarships consideration. I hate writing these things – but I really like it when the kids get the help they need or the job they want.

It was my husband’s birthday on Monday- he got cards and messages from people all weekend. We had a wonderful dinner from the hotel – filet mignon, smashed potatoes, lobster bisque, and a wonderful hydro-bib Michigan salad. We had a pretty great Saturday and then Saturday night was a page from the handbook for a hellish time.

I have to stop this – we are at a crossroads that is making him anxious and me want to kill him! So no more of this – deep breath and …

It's back!

2009-03-29T15:58:00.000-07:00

It's back! The snow - large flakes that melt - and yet are actually accumulating! Oh my!

And is my sign for the best of the best! So - this week must be a week of unexpected happiness and peace! It must be MY week!

We spent the afternoon getting manis and pedis and now we have dinner delivered to the door! IT is a wonderful start ...

MARCH MADNESS – and other manic moments

2009-03-29T08:29:00.001-07:00

"We must have strong minds ready to accept facts as they are; rather than how we would like them to be." Harry S. Truman

Just when I thought we had the week under our belts as I walked into the house and heard the friend tell about the good day and the activities that had brought about a cleaner garage floor and front walk – the floor fell out and he was caught in some horror story that would not allow him to let his friend leave. “It was too dangerous!”

I walked outside to prove there was no threat – I asked him to come out and see – and he refused and you could see his color change to bright red and smell him from five feet away as he gave off a sweet-sour smell that filled the air. His eyes were riveted on objects that no one else cold see as he explained there were hundreds of cars and people all milling about outside. True, we are next to an elementary school and the cars were lined up to pick up kids who were about to be dismissed – but there was no collection of people or scenes that seemed out of the ordinary.

I had stopped one drug totally- to see if it made any difference. He seemed to be doing OK – not great – but OK for the week. I had to stay late one night and his friend stayed with him until I called to say I was on my way – and then his friend left. It always gives me a start to find him alone and needy! I don’t know whether we are on the right path or not! I had put in a call to the neurologist and she s on vacation – his own family doctor was on vacation- it almost felt like one of the conspiracies about which he complains. – No one available when you need them! I tried to put my faith in working order and say - “We are OK!” And believe it for as long as I could.

His M/W/F guy is involved in working the stands for the March Madness being hosted here in town next week – and so we need a substitute for a few days. We were discussing this when my dear one went off the deep edge and into some land we never quite know. When he was inconsolable I reminded him that he told me to not believe everything he said and to remind him it was not reliable information. I gave him something cool to drink because he was running very HOT! Then after our friend left and I had blocked off the windows with the verticals so we could not see anything outside – we sat and he calmed down.

I started laundry and doing other things and would come back and sit with him. I asked about his appetite for dinner and how much money he still had – to get back to everyday conversations – it took awhile – I suggested Mediterranean Food – “Oh, you don’t want to go out – it’s too late –(about 5:50 pm?) I suggested we open the blinds and see that was still daytime –(and his loss of time is getting worse and creating more confusion for him) and that if he got out the menu we could call and get some Hummus and a Fattoush Salad for dinner. He rallied and when we couldn’t find one in our folder of “where to eat when you can only make a call”- I suggested we had one on the glove compartment and put on some shoes and went out to get it and the mail.

He followed me to the kitchen door and watched me go out and return. With menu in hand I was able to call and put in an order- 15 minutes – just time to get him up, shoed and out the door and then a ten minute drive – it took us twenty – but- the food was still warm and would make the ride back as we munched on the warm bread from the oven and sat in Friday traffic as we slowly made our way back home.

He’ up, he’ down! I just keep going! We ate – I finished the laundry- we watched some recorded programs from the week and week prior – catching up with shows from 3/10 – glad they stay there waiting for me – and then off to bed and eventually sleep.

Yesterday I had a meeting to attend regarding HIV/AIDS education. It was supposed to be from 8:30 – 1:30 – find out it was from 8:00 until 2:30. Thank God, I had the hubby with me and not someone with him at home. The morning was going OK and then we had a rough spot as we hit the door to leave – things that were in one place now missing and no memory- and someone else’s fault – and my wanting to leave him home alone! And asking him that in an attempt to get his attention back on task- where were these items and did he really need them for the morning?

OK.

We are in the car and have left the neighborhood and about to enter the flow on traffic on the major artery and – “do you have your pills?” Of course not! Turn the car around in an illegal u-turn and head back – get the pills, search for the missing items – finally find them in the least expected place - of course - and once again signal the garage door down and back out to hit the road again.

We try talking- he is yelling - I am “No way! You need to decide if you can spend some time with a group of people and be OK! “

He then quieted down and spent time bringing himself down – which was excellent! All the talking about his being the only one to control himself must have hit home and he was trying breathing practices and slowing down his breaths and trying to blank-out thoughts to get back to norm. We drove in silence and I concentrated on making my way to the meeting.

We had been up for almost three and a half hours and now I was running late. I just had to shake my head and let it go! Before we arrived at our destination- only seven minutes late – thanks to no cops and little traffic – he said he was OK! I was grateful!

The day was long- the presenters were very interesting- the information good- the results- the law says I cannot teach most of it because I am not certified and there are no classes for certification at my level until next fall. OK! He was great during the entire time. I grabbed one of the lunches to share with him – and the lady in charge of signing in asked me if I wanted to get him one – I said I didn’t want to take anything extra –she said there were extras. So we both had lunch and I introduced him to two of my colleagues from school and he was chatty. When the conference was over and I had to stand in line to sign out – to get my credits and pay – he went off to look at the books.

I saw him from the other side of the ballroom engaged in conversation with one of the presenters – I could see him bob and weave and smile from ear to ear – he was telling her about his wife – oh no dear God – oh no! I signed the paper and thanked the lady for her assistance and went to pick up my husband before hitting the road again.

He was smiling from ear to ear and engaged in conversation as he moved from side to side using his cane as a drumstick to keep a tempo. I gently disengaged him as she tried to speak with other participants.

He was happy – yes he was telling her about all our exploits and dreams of traveling across country on a train ride – and she wanted to do something similar. I told he was blowing my cover – I like to fly low under the radar and not cause anything to draw attention to myself – deliberately! He was talking about me – not the way to stay under cover! He laughed! I ushered him to the car and to determining what to do with the rest of the afternoon as it was now approaching 3:00pm.

I commented on how well he handled the day – sitting all that time at a table and listening to the various speakers. There had not been a lot of interaction – mostly passive listening- but he seemed to be revitalized by it all. I on the other hand was looking forward to a nap after getting some gas – over $2.00 – and rising – and his lotto tickets. We headed home stopping at a medical supply store to see about bathroom devices and bedding – but they had closed five minutes before we got there – and so headed to the gas station – chatted with the attendant and went home. We had a snack and he took pills and then after perusing the TV and watching a few more of the recorded shows – we dozed off and enjoyed some sleep.

Not a very exciting week- it was a busy week. It is always a busy time!

This week is the all day cognition testing – and report cards are due and new term begins.

Next week is his birthday! And only 3 ½ days of working! And then one week off!

Maybe his sister is coming to visit for his birthday!

Maybe I can find a way to cover for the missing caregiver – No - we will be able to make it happen.

Positive – today we have rain and snow! It’s OK! Like I told him- I’m grateful we don’t live by the Red River – but our prayers and thoughts are with those who are going through so much due to natural causes. We need to make a trip out – and I need to get him to shower and dress and be OK. He is between worlds.

April Fool’s Day is coming – a celebration of fun and mischief! I am a twit – since I twitter! It’s another waste of time! Who cares what someone is doing in 144 characters? Apparently those who never read newspapers or woke to relish going through them on Sundays – going from front to back of each sections with the print on your fingers and the smell of ink in the air. The idea of spending time by looking and laughing at the comic strips and reading them to another with expression adding to the joy. Here is another loss to people for some who have never experienced any of these things because they have only the electronic. The tactile people like myself feel the loss. Those of us who grew up in homes where you actually spoke with one another and talked about things and discussed things and worked things out – where are those people and moments now? Now we rely on the TV, Internet or whatever is the most popular or quickest – not the best – but the fastest! Something wrong there! We saw a sign that said “Modern Dentistry” on a building and wondered what that meant. Is there another one that says “Old School Dentistry”? Is everything new for the best? The drugs he takes give him mobility- but take away his ability to think and reason and use the parts of his brain he counted on for as long as I’ve been a part of his life. Mobility vs. rational thought! But with lack of mobility- comes lack of ability for communication and so – who would know what he was thinking? Such a hard thing! Such a bad situation – we would like better choices!

He has taken more pills and maybe can move away from OCDing that he has going for him this morning. Maybe we can get into the shop and he can get a Mani/Pedi. He clams his feet are ugly and no one should touch them. There is nothing wrong with his feet. They are as attractive as always – maybe a little bent with arthritis– but not fungal or filled with bugs or anything bad.

He is quiet and afraid and trying to be brave- I am loud and trying to be positive! I am putting it in somewhere else. I am only a passenger and I have to remember to enjoy the ride. ENJOY!

I accept this is where I am right now!

I look forward to Palm Sunday and Easter and a new beginning! Another year for my husband as he turns a year older – beating the odds that he was given ten years ago.
We are blessed – we are counting out blessings and sending them out to al we love who take them time to read these ramblings of “a woman in search of a switch to turn off the doubts!”

If turning off the lights saved so much energy and $$$ - why did we go to Daylight Saving's Time - where I have to use more energy anyway? Does it all even out in the end? Should we just shut down all unnecessary things for an hour or two each day as a practical practice and energy saver?

Just wondering!

Peace, Harmony and Love to all.

quiet

2009-03-21T14:14:00.000-07:00

no more self pity party - can't stand the company - no wonder no one else can either.

he doesn't choose to be the way he is - in fact all he does is fight it. so i need to accept whatever happens and be grateful for the time with him. i have backed off and down and today has gone better. he and i are not at odds. he has slept over ten hours and that may account for his better mood. i still need sleep.

the weather started with snow - then a little sunshine and now it's cloudy and colder. our luck has changed on the lotto and we are supporters and no longer winners. we are going to change our luck once more.

my bf will be here soon. i haven't seen her since last summer. she will stay for a while before heading back to IL and we will plan another trip and look forward to spending time again. our mutual friend who lives here is taking the train into chicago next week ad going to spend time with my bf. we would like to take the train this summer and visit the grandkids, kids and bf. that is on our agenda. i wanted to do an Alaska cruise this summer; visit my bro in Seattle - maybe it will still happen. believe ... reaching out my hand and trying to enjoy the ride and let someone else do the driving.

2009-03-21T09:12:00.000-07:00

Saturday – March 21st
Today is another day to catch up on things – and try to get back the + attitude that is slipping through my fingers like sand.

I have been playing games on fb to take me to a place where I don’t have to think. The weather has gotten warmed this week and at work it means that the kids are more anxious to roam the halls and socialize than sit and learn. In my classroom I have lost one to prison, one at home recovering from gunshot wounds, one suspended because he doesn’t take his meds, one at home because her meds keep her up all night and asleep during the day, two others with babies and baby-daddys who are not coming to school as the #1 activity of their day, one who is expecting and being put out because she wants to attend school and the baby-daddy doesn’t want to have to be her transport – and then three who are ruled by their emotions and come and act out or stay away and become angrier with the world and everyone in it. There are others as well. The young man who doesn’t like Tuesdays and Thursdays because he works on Mondays and Wednesdays and can’t get up to be at school but wants to graduate. Then there are the two who haven’t passed the driving test because they have no ability to read the test or the book to learn the information. (We try going over questions they remember to give them a look at the words and correct info to become informed drivers. I cringe to think this is why there are multiple crashes daily.) The young man who is into Anime’ and finds it almost impossible to not be on the websites – since he has unlimited access to a computer. The dyslexic kid who calls me “teach” and wants to know why he can’t read – and is one of the two who are deaf and need their music turned up to 10 to hear- and annoy everyone around them.

The math guy came in to work with them as he does three times a week, giving up his lunch. He was late because he had to deal with some business in the office regarding one of his own students. My kids were on him – I was amazed. They can come late, do little yet they expect others to meet expectations that they don’t. Then they were working on Area and Perimeter and one of the guys had to explode using inappropriate language and thinking afterwards he was cool! This is one I have one suspended at home – for the same behavior which led to my sending him out to the counselor’s office where he did not go- but the halls where he got into it with another guy and popped him in the face in front of the security officer. (Ouch! and why is this a dumb move?) I thought that was bad – though it came under control pretty fast with “sorry” and no one else listening to his boasts or encouraging him. I had to explain about the dynamics of my room and it made me realize –we have no normal- there is no normal in my room – not one kid who is considered normal by the educational system, their friends and family or more importantly- themselves. So – how can I teach normal when there are days when there is no normal to show them? After class was over – and I was working in my room there was a great deal of yelling, cursing and screaming outside my door, my supervisor was using my printer and had her walkie-talkie and as I headed to the door, she told me “don’t go out there – it’s under control! You do not want to go out there!” I heard her but I didn’t comprehend what she was saying – until I heard the muffled voices from her walkie-talkie– and realized it was bigger than the usual. I stayed in my room and later when I went to the Office I saw the hair and blood all over the floor – and then the extra security people. Somehow this put me over the edge and when I returned to my room I got my things together and left the building ten minutes earlier than usual. I had enough for this week. I am beginning to accept this as normal and in my heart I know it’s not.

At home – well three mornings I cried on the way to school – because I couldn’t change things, couldn’t accept that I couldn’t change them and couldn’t believe that we were actually going through these things. Lack of sleep is the biggest problem – waking every hour to fifty minutes takes it’s toll on the body and mind and makes me the best bitch possible, complete with foul mouth and foul language and the feeling of wanting to flee – but knowing I have no where to go.

Bugs! It’s about bugs that are entering his lungs while we sleep and attacking his face and eating him alive – yet there are no bug bites. And then there are the bugs crawling out of his skin and between his toes and eating him – and in his food and on the carpet and crawling in the bathroom and on the toilet seat and … And he called Eradico and we talked and I said – “No, we don’t have bugs – we had bugs three years ago before we got new windows and sealed off the area around the deck that had opened because of sagging, shifting building and widening gaps that were there. But we DO NOT have BUGS now! We have lint on the floor, specks of food that is dropped, cracks that look black because they have no light, caulking that has grayed over the twenty years and no longer is white – nail pops that need to be repaired in the ceiling – but we have no bugs. I thought we had resolved this problem and there would be NO ERADICO person coming and I would cancel the appointment. Suddenly yesterday there is a man with a spray can and saying he was there to exterminate the bugs – I was dumbfounded. Here was my husband half-dressed because he was uncomfortable in his clothes – and a man with a clip board and telling me they asked if he could make this stop today because the client was anxious for relief. OMG! I explained about the Parkinson’s and drugs and hallucinations and that I really did not have bugs- but please come in and satisfy my husband. The bug man checked every spot where my husband dragged him – all were negative for bugs. I waited hardly able to breathe. Would this satisfy the man – or would he think it was all a hoax or collusion or worse? He seemed satisfied and the bug man left a report saying he had inspected the areas and it was OK! I signed it and he left.

This was after I had dealt with on arriving home his caretaker telling me he had called the doctor’s office and made an appointment to see the doctor because he can’t sleep at night and his lungs are filled with bugs and he is being bitten all night long. This from a man who can’t call to make an appointment when I need him to do it – but can dial the right number when his fear is operating at a ten. The caregiver suggested after he learned of the new plan set in place by my husband that I should be accompanying him and that he did not feel comfortable taking him to this appointment especially since our doctor was on vacation and it would be someone unfamiliar with the entire care and case. They canceled the appointment before I got home. So we spoke about – why? And there was only the same answer! Bugs! But he agreed with his friend that it should be our doctor and I should be there too! Thank God for that! Now I’m beginning to scratch and feel like I have bugs crawling all over me – and I know it’s dry skin and I know it’s my mind overworking the issue because part of me wants to believe him.

Then this man shows up with his spray can like a gift from God – and I am amazed. Now, even though he looked for bugs, he didn’t go there as often the rest of the evening. However, at 4:00 am he claimed his toe was bleeding and hurt – from going to the bathroom – I asked him to turn on the light and hand me my glasses so I could look and I found his little toe turned under – and I tried to straighten his toes out and assured him there was no blood and what I thought was happening and he went back to sleep as I rubbed his chest to make sure e could breathe and rest. This is why I am tired – I try to alleviate his fears and concerns – but he is not always consolable. Yesterday morning – we had gotten up early – he was showering and I was going through the morning ritual – when I got to the part where I popper some oatmeal in the microwave I was met with Clam Chowder all over the inside of the box. It took me ten minutes to get it all cleaned up. Part of me was thankful that the guy who goes swimming with him on Tuesdays and Thursdays made sure he had lunch and part of me wanted to kill the guy for using the microwave to heat the soup and not the saucepan on the stove. At least cover the bowl when he uses the microwave and I have asked politely – to no avail – so I am torn and now running late and tired because I was up all night every hour with a new complaint and problem. I finish getting it ready – coffee, juice, yogurt and oatmeal and head upstairs to help him dress. I help him dry off- then apply lotion to his body to help with the dry skin and then help with the clothes and he is dressed except for his shoes – and I go downstairs with him to show him the food and tell him to enjoy some breakfast and I go upstairs to shower and dress. I am getting out of the shower and hear noises in the bedroom- that means he is back upstairs and not eating – I lose it – first because it frightened me to hear sounds, second because I can’t get a moment alone, and third because I am so exhausted it is taking every ounce I have to stay calm and I can’t. Now I am running late and we are arguing and he says –“don’t help me” and I know he only wanted to help me - and I wanted some time alone – and we are at odds – like having to grocery shop at 8:30 at night because he isn’t feeling well but we have no milk or essentials and he won’t let me go alone – and I need to get up at 4:00 a.m. to even get out of here close to the time I need to leave.

He starts to stumble down the stairs and I call him back and tell him we have to stop this. This is not productive and he doesn’t even remember the hostility he has shown to me –he claims it didn’t happen – and I am wondering and hurt- and is it true? He doesn’t know – or is he trying to save face? And it is too early to psychoanalyze anything.

I end up crying and can’t stop – and I leave the house crying all the way to work … I think of how I will deal meanly with the kids at school – and once I am there – do the opposite – nothing they do can bother me today! I laugh at their silliness and am warm. It is such a contradiction from the ragged start to the day and loneliness I felt. Sleep – I need sleep!

He keeps saying, “he doesn’t understand why!” I keep saying- it’s the disease and the drugs – he says “No” and I say “look at how much better you are in so many ways!” and he says, “I’m not getting better” and I know that what we both want may never happen – but we hope and pray and I try to be half-full while he is definitely half-empty and he is the one who needs to be more positive – but it’s the drugs and the lack of activity and being needed and able to do things like before and taking care of me – and not needing me to do so much for him. And I understand that! It’s cyclical and ongoing and some days like a series of pins pricking and some days like a knife tearing through the heart and soul. I should be able to share these things – but no one really wants to hear this. No one wants to know he needs more than a little – like before. No one has time – and I won’t bother anyone else with it- because there is no one around who can help! I am already enlisting his two best friends – one is super-vigilant and the other is laissez-faire – so that he takes his meds and eats three times a week with the first and like on Thursday takes all his meds at one time and his friends says- “at least he didn’t take more than he should for the whole day”, and when I get home he is sick and can’t move and we cannot do anything but try to normalize him. And I wonder why I can’t do anything normal – and then I thank God that we have these two guys because God only knows what he would do left o his own devises all day.

When I called in to work to say I was running late- I asked the super to just fire me – then I could stay home and be forced to find some other way to pay the bills – but the economy does not allow for grandiose schemes – and I need to be able to keep our home – no matter how much it seems to be a source of trouble for him with imaginary people and bugs rampant – what’s to say the next place wouldn’t be the same for him?
I would like us to be able to do some normal things – other than grocery shop once a week and buy gasoline or go to doctor’s appointments. We have not eaten out in a year and half. He goes out with the guys- and apparently is having a hard time keeping the food off of him- yesterday it was all over his pants and jacket and the guy felt awful and tried to clean him up. I told him it was OK and he did a great job. He told me my husband said we were having a bad time and he didn’t want to involved with it. The one thing I wished I had yesterday- someone to spill my guts to and he got that one too! Boy was I ever feeling jealous and unhappy and unfulfilled. I hate all the negative feelings and keep trying to find a better way – but sometimes I feel like we are fumbling in the dark and there may not be a light – and I have to remind myself- I am not in charge – and try to step back- and like with the kids yesterday – laugh and enjoy the moment – and take a higher road -the one that lets me feel OK about myself. I can’t change his condition – but I still love him. And he is till my heart. I need to wake him and get him trimmed and some food and more pills in him. And we will have a good afternoon- the morning is gone and a better evening!

May your week be better – God please watch over those I love and keep them safe! Please keep my husband safe from my outbursts and outrageous mouth! Let me find peace, love and harmony and have them find a place within me. Thanks.

Saturday Before St. Pat’s

2009-03-14T12:36:00.000-07:00

Losing the hour is more than a mere switch on the dial of a clock. It means turning my world into a new place. An hour can mean the difference between a good day and a bad day. Daylight hours – we have more sun and this should be good! But when you go to sleep early because you awaken early – and now the sun is not up when you are and not down when you are – there are some other problems created that don’t get resolved – just accepted.

We are lucky that with the exception of the kitchen appliances and a three other OLD clocks the rest are self- setting. I always wondered if calling the radio waves to these instruments creates more traffic of the waves – merely directs them or causes more cancer causing things to be prevalent in a residence. I only really had to reset the car clock and the bathroom for the toothbrush – right – a clock for a toothbrush – what have we become? But the mere fact that I need to do this twice a year is unsettling. What would happen if we left the clocks alone? Who would be hurt? Who would have heart attacks? Who would miss going back to darkness after getting a taste of light when on the road to work?

The week seemed to go on forever. Monday morning I received a text as I drove to work telling me a student would not be in school because he was shot on Friday and in the hospital. It’s like a slam to the chest – my breathing almost stops and I have to redirect my mind to the task at hand – driving the car to get to work. Then at the red light I text back – how is he? Then I call my husband to hear a real live voice for the moment to release the psychic pain stopping me from breathing. I breathe and want to turn around and head home – but I continue. At work I discover another text – saying he is OK but had two bullets removed. I ask the AP to call the family and find out more that she obligingly agrees to do so I can go to class. I am sad and reflect it back to the group who responds to the news with more questions for which I have no answers.

Another student arrives late – and tells the story of the party and his cell going off from people who thought he was at the party checking on him. He gives as much info as he can. They are all quieted by the news and work silently for most of the day.

My supervisor is dealing with crap that is taking away her strength for a healthy recovery from a recent accident and adding to her already fragile health by adding stress to her daily life that no one needs. My other superior is looking forward to her retirement from this district, as are several teachers who attended the pre-retirement meeting to get them ready to be out in June. I am almost, almost jealous that I can’t be one of them. The hallways were swept with diligence this week and picking up kids who wander – yet there remains a group who are outside my door almost every hour. How do they get away with being out there and not being caught by the five other official people who see them?

Testing is a good thing – but with poor timing- why do you test people the week you change the time? The testing is in the mornings and my students come for the afternoons. A lot of teachers don’t get any kids – but I have drummed it into their heads they need to be there every day and for the most part they are. I could have let them stay home – but my conscience tells me that they need to be there every day – as every other student in that building. Three days of testing – in the middle of the marking. We are just getting them into routines and they are changed to deal with the testing and then in two weeks, the professional development days and parent /teacher meetings for the marking. Then it’s Spring break and then we are almost done for the year. My promise to one young man to help him read will not be enough, as it was not enough for another young lady who will graduate but continues to be very limited in her reading, writing and math skills. These things weigh on my mind and soul and I feel so inadequate as to not be able to meet their needs. I search daily for new materials and adaptive devices to help them. I try to have them learn work-arounds because they may not have the skills without the calculators or computers.

I am overwhelmed this week.

My darling is not writing down the license numbers on cars of people who are following him – he is not forcing me to close the blinds and not allow the light in- he is not spraying for imaginary bugs when I am around – and he is not using tons of paper products to wipe away imaginary bugs from any surface he looks at. (Does he have floaters in his eyes that are making him see black specks that look like moving bugs?) He did call for Eradico and he does make decisions to do things without telling anyone else. Then when they return his calls I get to learn of his antics. He couldn’t call the doctors to reschedule a blood test – (they made a mistake on his psa and need to have a redraw and it won’t cost us anything!) or a B12 shot but he called the bug people.

My supervisor and I went to the hospital to visit the student who was shot. He was being released that day. I was glad we had gone – we took one of my other students with us and left him there to deal with issues he had with the young man laying in the bed. The next day the student, his mother, grandmother and cousin show up in my room. They are pushing him in a wheelchair that can barely accommodate his tall frame. He has come to complete a form – I tell them to go home. He can barely speak, move or do anything- he is still on painkillers and unable to walk. They go home after they pick up his Senior Pin – a really big deal for this family. I am glad that are happy he is graduating- he sure is going through his own personal hell to get there. And so I worry and so it does no good. So I have to put it all in God’s hands and feel like a washrag – wet then wrung out – wet again and finally wrung so hard I can’t go back to my original shape without help. I need someone to pull at the edges and make me stand tall again – and breathe air again – and not think – and not think- and care and not care!

We slept five hours in Thursday night – after getting little or no sleep for three nights. Last night we slept for a couple of hours and then for five again. But he awoke and though he was dying because he couldn’t move. I was horrified to hear him tell me that he thought he was dying. He believed he was going to die at any moment. Is that what it is with the Parkinson’s? They fear the death- and they die to the outside because they no longer can move or communicate?

He is sleeping again – with only a little breakfast and pills for the day. He is snoring next to me. He won’t let me be away from him very long. He was not like this before the diagnosis or the strokes.

We stopped for lotto tickets and he has wanted this Golden 7s ticket since it came out. Last night there it was – and for only $10.00 it was his. When we scratched it off – he was a $77.00 winner. Not too bad – but definitely not his usual luck- maybe things are changing for the better.

We wanted lobster dinners – maybe we can get them now! I drool for Danish lobsters, small and tender and smothered in butter and lemon – melting like candy in your mouth with a tangy Cole slaw to accompany it. Yeah, sounds good today too!

I get very little done because at school I am working with students or attempting to keep up with the paperwork. I have been asked to create a brochure for my academy. I’m getting the students involved on that starting next week – they can tell me what the program means to them and what they have learned or how it is different for them. Then I can present it to the Principal. I was working on a flyer for my AP when the Principal saw it and thought it was for her to see – and then let me know I should have one for the place where I work… What if I couldn’t make a brochure? What if I didn’t have any abilities? Oh well! I do and I will!

I should be worried about getting a brisket of corned beef and making a boiled meal for Tuesday for St. Pat’s. I used to be that woman. Now I guess we will call the Irish restaurant and order some food for take-away. Boo – but that’s the way life is now.
A woman whom I met for a moment has asked me to be apart of her creative team for a project she is doing. I’m hesitant for several reasons – I really don’t know her and I have mixed feelings about her project – too little information to get involved. I am also still unhappy about not following through with the book and art project I started last year. I am a little pissed with myself about that one. That might have meant money that we can certainly use.

Right now I’ve become convinced I need to create a smart house for him to be able to live comfortably. I need heated floors, no clutter, no rugs to catch on his shoes, new cabinets and furniture, larger spaces for him to ambulate, and newer baths with larger shower stall and tub with jets as a well as urinal for him- I’m not sure we can do it here with what we have or need a new place – but he needs people around to keep him busy and not merely to watch TV with him. He is getting lost in some world where he wanders without thought until he is dragged back. His physical loss is getting worse – and he needs constant help with getting into and out of bed – and so when he doesn’t sleep and gets up 6-8 times – I need to help him get out and then back into bed. This takes a few minutes and certainly wakes you up do that you can pay attention to the details of what is needed and pulling and pushing his body to get it to cooperate.

I really wanted to get the school thing going – he would be so good with that. We could be teaching both adults and kids and having a great time with it. He could be involved in creative thinking and actions and working with people who could benefit form his years of experience, his great imagination and great brain – what’s left is still more than a lot are given at birth. That is my dream and hope.

This whole FaceBook thing has become so nationally big that it’s almost as if I should not be there anymore. I do like keeping up with people – but it gets a little crazy with more than a few – and I have almost three hundred. In the world of FaceBook I know that’s nothing – but for me it’s sometimes more pressure. I enjoy the games- and then they say I am not allowed to use the game I like – what the hell is that all about? OK – so I really don’t get it all. I signed up for twitter and don’t even know why I did that either. This is way too much socialization via electronics and I am missing the old days of sitting around and chatting and the real hugs and kisses and telling jokes. Old school – I am definitely Old School! – shit! Accept who you are and be happy.

The dishwasher has gone to heated-dry and I have laundry spread across the floor that needs my attention. He is snoring on my hand as I type – weird feeling. His foot rises up with each snore – what does that mean? It’s almost over for this Saturday afternoon and I am still lounging around and acting like a pampered woman – well I can pretend can’t I?

My students will be OK –and they will learn whatever they are capable of learning. My husband will be OK and he will do whatever comes next with all these pills, doctors and scares we go through day and night! I am OK and will be OK. My best friend will be in town next weekend and we will see her and go out to dinner with her. It comes at a real good time – I need a hug!

Happy St. Pat’s to one and all.

May you have Peace, Love and Harmony in your lives and those you love!

Rain

2009-03-07T14:42:00.000-08:00

The rain beats down outside - a little thunder - no lightning! A spring storm while it is still winter -

We lose an hour - that will take me a week or two to get over. So despite the research that proves that we create more damage than good to the human body with the time changes - we continue to practice ways to make life miserable for ourselves with the help of our elected officials.

Not much changes - yet every day is different. We now have the local fire department aware of my husband's condition because he called to report a fire - like our home on fire - when there was none. The caregiver with him was beside himself - he was that quick on the phone and the fire department was that quick to get here. Good to know- better to be grateful that they weren't needed.

He has good moments and then he is lost - somewhere else. We talked - and I said I wished that he could see through my eyes - and he said - he wished I could see through his eyes. I had to tell him that I would not like to see the frightening things he sees and I do not know how I would react to them - maybe not as well as he does. It was a very telling moment.

We have come to a moment of acceptance - not resignation - but acceptance. And for the moment there is a little peace. It may not last long but we will enjoy it while we have it.

The rain is more than gentle - more like a heavy shower taking things down and melting the snow piles and clearing away some of the debris while exposing other things hidden under the winter storms.

He lost power yesterday - and got out the small charger to run his computer. When I called to check on him the power came back on and he was happy - and I was delighted. I was hopeful we wold not have a nigh without lights. It would have been quite a trial for him.

The first week of Lent - I am trying to give up "jumping to conclusions, speaking before thinking, and caring more about him than the situation". I think giving up chocolate might have been easier - especially since I'm not supposed to eat it.

The week back at work was filled with emotion and pain. One student in jail for the next three months at least, one locked in a psych ward to have meds adjusted, and the rest sick, sniffling, sharing illnesses and colds with me and each other. The kids were actually very god this week. I told them they might have some college students come in to observe the room - they wanted to know why. I told them they had been chosen as students who showed a good program to prospective teachers- they said they would behave when the people came in - got to love the way they think they need to protect it and me - as if they are really out of control or bad. They are really very cooperative and have taken on policing each other when I need to speak more than once - so I don't have to lose my control or yell. It's an amazing thing. One new kid who swaggers down the halls - comes up to check with me and make sure he is doing the work correctly and then swaggers only when he has an A on a paper and proclaims how he is taking it home to show everyone how well he is doing. We have been doing Algebra and Geometry with the help of a Math teacher who gives up his lunch to be with us three times a week - and they are really doing well. Getting the concepts and being able to do the work the next day as a I give them a review of the work and then the next step in the process. They have been funny running up to see who can do it first correctly - these are kids who didn't even come to school let allow do any work before. Some of them actually remember doing it once before and now understand what they were learning - that is the best part. (THANKS MIKE!)

Home has been hard - not much sleep and then a lot of dis-ease for him. He spent three days with his childhood friend - sometimes I'm not sure who is helping whom- the friend came over to go swimming and forgot his suit and things - My dearly beloved got him a swim suit and towel to use rather than going au-natural.

We created a facebook page for him and he is fascinated with it. I'm glad he doesn't have an iPhone to check it out all the time.

Never got to play with the neighbor - but she helped to get him to realize he shouldn't make phone calls without checking it out with someone first. March - it feels like a time to be marching! At least the days are getting more daylight and we are nearing Spring. Take care - and be kind to one another. You never know what will happen along the way - so live each moment and enjoy each person and love them as well as you can for as long as you can. Peace, Love and Harmony ...

MARCH

2009-03-01T10:50:00.000-08:00

Another month …

It’s Sunday and I scanned fb to see the people who are in the warm areas who are enjoying the heat (made me smile and be happy for them)– while I put on my fleece to keep warmer – and turned the furnace lower – trying to conserve and be a good user of resources … but sometimes just wanting to be warm without a lot of clothing or lack of – need a moderate climate for this aging bod.

It made me realize how easily I can wish to change things – it’s cold and I would like it to be warm. I’m tired and would like another few days to catch up – with what and why? Are questions I cannot answer – but my “want to get it done” and “it needs my attention” tudes are showing and blossoming rather than lying at rest like they should. But because we are so quick to want to change and so slow to accept we often miss the best that is right before us. Change for what? We have seen what the changes have wrought for the economy and our daily lives – the status quo has been challenged and now we are all part of the tumbling down process – if we are in any way associated with the manufacturing section of our economy. My job is based on the need to educate the students of the people who work in the factories – close the factories – take away the work and we all lose – as people search for new ways to make money and meet their obligations and feel out their possibilities with government pay-outs.

One day at a time – I am only a passenger on this ride. Try to enjoy it girl!

It was a long night (up and down from 11:30 until 5:30)– and then he slept in for four hours after we caught a little of Joel with his upbeat message of ultra good stuff coming your way – get ready!– while I did other things that needed attention. He is not as mobile and it is really making him work much harder. He ended up taking a second dose of meds before he had even eaten today. Now he is busy searching for things for me – and I wish they were easier to come by… but – guess we need to hit the store and make a few purchases – so we can have lunch and dinner and be ready for another week of the usual.

Back to the job and back to his swimming and being with the guys! They are doing such a tremendous job of keeping him out of trouble. That’s all I can ask for – and they even get him interested in other things, a real bonus!

The clocks turn back next weekend – can’t wait – I’m kidding! I hate it! Why can’t we just stay with the clocks one way – nothing is as it was when it was first created and it does not make us happier people to have our biological clocks messed up every six months for some politicians idea of what is right. Haven’t we had enough of that stuff already?

We were pampered to the nth degree yesterday. It was wonderful! I can’t believe how nice it was to get a mani and pedi! Felt like forever since I had one – but know that is not true ! I even got the wax treatment – made my hands and feet feel extra great.

This month is messed up with testing and not just teaching – Oh well!

Then next month we have Spring break – then Memorial Day and then graduation and it’s over for another year! It always seems to move more quickly now – as the days get longer with sunshine and warmer. We seem to look forward to the next thing. There it is again – moving away from the NOW!

We don’t seem to like the now – I am really enjoying my now at the moment – it’s quiet with a little jazz to fill the air and I am warm and happy and healthy and love that silly man in the next room and wish there was something else we could to make him happier and healthier. Back in God’s Hands – can’t do it!

Maybe my neighbor will come over and we can play Colorduko – I really enjoy the game and the company.

I’m done for now!

Happy Birthday to all – may all tour Lenten promises be kept and may you enjoy your NOWS!

Peace, love and harmony

I am MOST BLESSED

2009-02-28T11:32:00.001-08:00

When I feel lost or unbalanced and I put the word out to the world - it answers - and I am reminded that I am MOST BLESSED and that I can regain my balance and walk the path once again!

The reappearance of the sun - is like a reminder that I sometimes need to give myself the time to shine once more. I still face the same challenges - it's just the attitude that has resolved - I don't feel like complaining - only be grateful for what I so have and those who are there for me. I feel warmed by the knowledge that though I withdraw and make myself feel that I am alone - I am never alone - I am always a part of a greater plan and a bigger vision. Though my dream was put on hold - it is back in the forefront and I know that I can and will achieve great things for myself and others starting this year and continuing for as long as I have a breath left in me.

It's a lonely place we create for our self when we stop believing. Without air or light to grow and see what is really all around us we tend to spiral down further than we should - tasting the brackish waters of defeat and the visions of despair. With a lighter heart I stretch myself to reach up and out - seeking the answers not in the limited world I have created from fear and denial - but through the beauty, love and strength that is extended in the smiles, caring touch and voices of those who remind me - I am here - and I am more than OK.

Yesterday is gone - today and now is all the matters. The only hurt that is real - is the hurt I allow to consume me. If I am to allow an emotion to matter - let it be love - let it be the emotion that makes me grow and give and be the best I can - let it be the one that eliminates the darkness and brings light to the situation.

I am a seeker of truth and beauty - and I am back on the road.

faith

2009-02-27T11:49:00.000-08:00

Friday Feb 27, 2009
It’s raining and I am still in my pj’s. This is the only day this week that we have not had an appointment to be somewhere for something. He slept until 11:00 and has been ambling about – half asleep and half somewhere else. I have fed him breakfast and lunch. He slept a little on the couch – and now is on the computer or he is going through the cables that I left on the table and is confused about why they are sitting all over the table and not holed up to something.

I started working on the genealogy again – with the comp program. It was fun to see all the names once again show up – and the years that are accounted for – I’d forgotten that someone had worked long and hard to get a lot of that info. I am tempted to go back to it. I began the paperwork for the kids progress reports and tired of filling in circles with a #2 pencil. I will return to it prior to returning to school next Monday.

This week went so FAST! It had wings and was gone before I even took a long breath. I feel like I haven’t done a thing – and that is probably true when compared with others. Therefore – I will compare myself to others and say – I needed some time off. It was not all fun and no work. I still made meals, cleaned house, did laundry and took care of Himself. He has good and bad days and I got to be a apart of all them this week. He seemed good and more relaxed and then suddenly he was jumpy and hyper alert to sounds and off the wall with this bug phobia. He refused to eat because he was sure the food was filled with bugs – “see them crawling” and then he was being attacked by bugs in the bathroom. If I knew what precipitated these events – meds, lack of food, lack of sleep, over exertion, but I really don’t. It was as if a switch had been flipped and he was gone and in his place was this man who was sure that I was feeding him a plate of creepy bugs hidden in the pasta and broccoli. Ugh!

I was angry – angry that he would even think I would give him something gross – let alone unsavory and disgusting. Bugs- yeah, like that would be the thing I would scare others with … no way Jose’ … not my style or thinking.

But then I have to remember how he no longer gets to be a part of the everyday. He has caring people who try to do things for him because it takes him too long. He is hurried along to meet the needs and demands of others and not given the luxury of moving at his own speed or rate. He was able to sleep in this week and he enjoyed the swimming more and slept less. So that’s a big clue about the fact that he is not getting enough sleep when he wakes with me and runs on my schedule. But he doesn’t complain and he does what he can to make sure I am out the door and on time for work. When he has a bad morning – he feels worse about it than I do because he thinks he causing me extra problems. It’s hard to convince him that he is the most important thing when he knows that I know that I need to work to pay the bills and allow us a modicum of peace in our lives.

Playing with his pills is a tricky thing – one moment he is good and the next he is laid out, sleeping and unable to move, then vigilant and destroying things because he sees them covered with small crawly things.

I am asking for the grace to make it though each of these moments and to be the best I can for him. I am seeking only a little peace for him. This Lent I am trying to give up using an accusatory voice, jumping to conclusions and creating problems before they venture across my pathway. It may not be the usual … but they are very difficult for me. I will try to be open to the moment – and enjoy the ride as I try to be the passenger on this trip and let someone else do the driving – He’s behind the wheel – so there is really nothing I can do but try to let it happen anyway.

Saturday – February 14, 2009 Happy Valentine’s Day
I am sitting here and wondering what I can do to make Himself feel any better. He is not out of bed and it is 11:16 already. He took his morning pills and hasn’t eaten and is feeling cramped and uncomfortable.

So we wait and see if he will start to feel any better – we wait.

Yesterday was another whirlwind day of crazy –

Waking and dressing and making sure the 100 things are done before I head south to work– and then when I’m 15 miles away and have no time to turn around – being told I forgot to do the 101st thing that needed doing before I left the house. So instead of worry and fret I offer it up and believe that God will take care of it.

On the road I continue by answering the phone that rings and no one is there! Or it is a student with “I can’t be there …” All part of the never-ending drama that goes on each day and the easy lies that flow off their lips to excuse them – waking late and making excuses based on others – and lacking the courage to admit their own mistakes and take the consequences – it is always someone else’s fault.

At work and there is a moment of silence before the doors open and the students who enter bring the luster of noise with them- not the good noise – but the mean noise and hurtful and not caring noise. It is not a celebration of love but the beginning of a day of fighting and security dragging kids down the halls in handcuffs while they continue to throw epithets over their shoulder at their adversary and the watching crowds. This is love! Then it’s dissipating the crowds and clearing the halls while the students mock the adult and his words behind his face and saunter slowly to the next area they find available for them to stand around.

Even in the classroom there is an undercurrent of hostility- kids who are normally quiet in the morning are already fired up and threatening violence against some perpetrator in the halls. The angst is felt and reverberates as they act with meanness toward one another in attitude and speech. It is going to be a long day.

2009-02-23T16:00:00.001-08:00

I am pitching my tent in the valley of hope and will not be dissuaded by negativity.

2009-02-14T10:34:00.000-08:00

2009-02-08T07:34:00.001-08:00

Sunday February 8, 2009

Another night of sleeping between the urges – must have been six trips and two more attempts to get up because the brain was telling the man he needed to get up and go – even when he didn’t. The trips to the urologist and all the meds cannot compete with his brain and the mixed signals it send to him to follow.

We put the gaskets on the cross trainer that add the resistance and he can only do a minute or two-so I took them off and he is up there for another ten minutes. That helps him to feel good about what he is doing. We had a little snack during Joel – and his message of laughter. Lighten up – and fly right! All the words that come back to me from 30 years ago that I used to tell him how he needed to take life a little less seriously – it was like being hit in the head with my own words. I can see the posters I made him with my crazy drawings of angels with huge wings and hair pulling him up from the muck and mire – and then the others with color galore from my markers.

No wonder I love watching Ken decorate the classroom door – I once wielded those tools with a little precision of my own. Too bad I destroyed all those relics of my other abilities. Mom was one who kept everything from all of us. Moms do that – and then Grandmas too. I have a book of pictures that they drew over the years while here. I had some for the nieces and nephews at one time as well.

I moved the iPod into the kitchen so I could put on some music for him to listen to as he exercised. I hope it works. He seems to be out there a little longer.

MUSIC and LAUGHTER! Those have always been my remedies – this a.m. when Joel was discussing watching funny movies to make you heal faster I was reminded of the time I sent John to Blockbuster’s to get me some funny movies to watch while I bed-ridden after some hospital procedure that laid me low. He brought back several selections and was so proud of himself – “Here, for you! They guy at the store said you would really like them!” So he popped one in and went off to do his thing and up comes “My Girl” and instead of tons of laughter – I cried and cried and cried! When he came to check on me I was blubbering and out of Kleenex and could barely speak and he said – “Wasn’t it funny?” That was funny and I laughed for the first time that day!

I reminded John of his attempt to make me laugh and we both started laughing- remembering the incident and how wrong the man was. We also tempered any recommendations from the video people after that day.

So we began our out of bed day with some laughter-which led to the exercise and now to the real breakfast – making some eggs and pouring some juice. We are almost coffee-ed out at this point. (Another of those made-up words!) And for a few minutes everything is OK and then we are back to looking out the windows with wide eyes and surveying the area- looking always looking for that stranger, that foreign thing that will send his BP up and his heart racing and make the sweat pour out as the fear takes over. He looks for the things that make him afraid – My response is to ignore the outside and be involved with the insides –with me, the computer, his projects and his life.
It’s hard to make him realize how much time he spends looking – just looking.

When I came home from work on Friday he met me at the door in his plaid flannel shorts again – (Where were his clothes?) He has undressed because the clothes were bothering him and gone to bed because he was tired. (And he doesn’t nap! Right and the Pope isn’t Catholic!) He was a little edgy and I was a little unnerved – but tried to hide it – Chris ran up with a shrug and “I don’t know” on his face and said “Bye” and went out the door! I was left with a man who was in a half awake – half asleep state and not communicating without the use of gibberish! It was a moment before I actually responded to it all.

I like the times like this morning – but it was preceded by his laying on his head – practically- after he returned to bed for the ninth time. At one point he said after struggling to get up – “that’s too much motion – I can’t do anymore!” and quit moving for a few minutes before he started to get up again because the message was he HAD to get up.

When he gets off the cross-trainer he can actually pick up his feet high in the air and move around for a few minutes – his stance is straighter and he looks and talks better for a while. Then we go backwards – little by little!
We’ve eaten breakfast – and he is sleeping –Wake up guy! No sleeping until tonight! You are going to have to stay awake as long as possible. Off to keep him awake so tonight we can sleep. Smile, laugh and enjoy this week – it can’t hurt and they say it actually helps!

SATURDAY

2009-02-07T10:55:00.000-08:00

Now is the time when it becomes clear that I need to be a grown-up. A grown-up responds and does not react to news which may or may not be a concern. I knew before we got to the appointment that there was a chance that our odds had changed and he was no longer a candidate for the evasive procedure that might have taken him off the multitude of pills and eliminated the hallucinations and provided him with a better quality of life. I knew in my heart and wanted to put it aside and pretend it didn’t matter that he has not gained but loss in so many ways. I even tried not to say my fear aloud – but shared it with my best friend only to deny it and cancel the words – as if it would magically change what really was transpiring physically. I do believe in miracles – I just need to believe harder.

The holidays were a time of ups and downs – but mostly monitoring and trying to make it comfortable for both of us. When I was ready to party – he was ready to nap – and when he was ready to move and shake things up – it was 2:00 a.m. or felt like it because of all the hours I had been awake.

The hardest part was being aware that his trip to the emergency room was a big change – and one he had no control over. The neurologist says that there is a possibility – but – and there is always a but – he needs to be tested first (and she assures us this is normal and I believe it) and I should set up the Neuro-psych exam by calling an 800 number. Like ordering a new purse or something everyday. I will call and he will undergo an exam to test his cognitive levels and emotional state and to see if the procedure will help or only take away from what he still has.

That is a big change from six weeks ago when she was hot to recommend this procedure as a way to make the quality of his life better.

And it takes ‘the wind from my sails’ and puts me in a melancholy place. We watched the PBS special on Parkison’s and he looked at the places where they achieved some success – Halifax and other medical institutes and I was looking at the home and rooms of the Parki patients and seeing how things like – no rugs- cleared areas with no clutter were common. I was making more mental notes about all the furniture and things that need to be eliminated from our living area in the hope that it will make it easier for him to access things he needs and not worry about things that don’t’ matter.

I don’t want to be a grown-up. I want to be the child who marvels at the world – but I am saddened when I see my friend and love cannot play- it doesn’t make sense to him. Things need to be explained – and that takes the fun out of it – doesn’t it!

So we make plans to do the normal everyday things- because some routine seems to be what he needs – the man who rarely had a routine – needs to have order in his life.
On the positive side – he is trying to exercise each day – to stimulate the growth cells that help to make the brain create the natural substance needed. He spent 20 minutes this morning on the machine. Now he snores peacefully next to me on the sofa as the Celtic music plays and I tap the keys to the beat of the water dripping from the melting snow on the roof and down onto the deck and grill. It is a melodic beat that gets his toe tapping even though his eyes are closed. It is very unreal. It is not just spasms- he is keeping the beat with his foot to the music while he sleeps.

A sign that make me smile – and gives me a sense of hope – I can be the grown-up and I can deal with new test and the results and whatever has to happen next and continue to try and enjoy each day and love him with all my heart.

The weather has warmed up – we will do what we need to do and take advantage of the sunshine and so I must waken him and get him ready to go out and meet the world – on his terms and at his pace.

2009-01-31T13:31:00.001-08:00

January 31, 2009
It’s difficult to take time to write anything. I seem to be on a merry-go-round of activities that always circle in the same direction but stop at different positions along the way.

This week may be typical but it truly is hard to know because of not keeping a daily log. I have asked John to use his journal and write each day – but that is not happening – he is thinking and mulling over what he wants to say – true historian – revised to meet the needs of the writer.

This week I felt that maybe I have been pretending that everything is OK and it really isn’t. Each day is different because each day he is different – now that is not to say we are all the same each day – we know that isn’t even close to true – but we do put on our public face and act a certain way each day. He doesn’t even have a filter for that! If he doesn’t feel well that is his whole world and he can’t see anything else.

He is hiding items and moving items around – all the volume controls have been set to zero on the iPod player, the DVD player and who knows what else. The handicam bag with the mic and other electronics was left on the shelf in the kitchen and the candy was stacked on top of the refrigerator and the other things in all sorts of places.

Yesterday he was sleeping when I called at 11:15 – Chris said he was out on the couch and he didn’t want to wake him- He was awake and alert when I left at 7:05 and when I spoke with him on the phone from 7:40 – 8:00 am. But then what happened to him? Chris showed up at 9:00 and called to say he was there and then what happens? The blinds are kept closed and the house is kept dark and spooky and plays into his fears and worries. I was up at 4:00 a.m. because I could no longer stay in bed where every five minutes he had to change something – his legs, the blankets, the pillows, his position – it was making me crazy since it had been going on since 3:00 a.m. and was the third time he was up that evening. When I went back to bed at 5:00 I told him it was getting harder and I wasn’t sure what we needed to do. He didn’t say anything then – but on the phone he tried to talk about it and how he doesn’t want to create a problem.

The problem may be me – I know I feel angry about things – Monday I was all set to go out to dinner with Brig and Hal while he was out with Doug at the ham radio group and the phone rings and he is saying he is sick and Doug is driving him back from home – and I know I can’t leave – So when Brig calls I tell her – no, not tonight- and she comes over and we play Coloduko and then Hal comes and then John and he takes off his clothes and puts on his plaid night shorts and comes down and walks around totally oblivious to the fact that he is inappropriately dressed for company. He then says he is hungry when we order pizza after saying he is sick before the food comes and doesn’t want anything – it’s as if the visual triggers a new desire – and he is controlled by what he sees and hears and not from any inner sense.

Tuesday morning after I leave and he is dressed and I call to tell him I am at work he doesn’t want to go swimming with Doug- doesn’t feel well – then at last when I call Doug and tell him to get him- he goes. He couldn’t dial the phone to speak with Doug –he could not dial out of the house! – that night we go and sell out gold bullion coin because our bills need to be paid – and so the one piece of real gold we have, we sell – and pay our loan payments and then go home. We stop take Indian home to eat. The evening is OK – then I go to work again – and while he is with Chris and falls asleep on the couch. He wakes up to fight off people in the room who are taking the bookshelves apart and he wants them gone and Chris is here and … they stay in for lunch and have hot dogs because he doesn’t want to go out. I have to stay at school for a meeting so I am not home until 6:00 and I see Chris at the front of the complex as I enter and my husband is waiting at the door in the garage for me. He is waiting for me in fourteen-degree weather with no coat or boots and staring out into the garage and beyond. I get him dressed and we go to see if there is a place to sell some gold jewelry around here. We find a spot but it is closed and then we head for some groceries to make it through the week. We come home and eat dinner and off to bed after I do some more laundry- which makes it about 11:00 pm when we finally go to sleep.

That brings us to Thursday and another day with swimming and Doug- I leave out food for them – they are making their own lunches – sandwiches and soup and stuff I have bought and is in the house so they don’t have to go out. He doesn’t do well again –

Now I have stopped the calming drug this week because he is taking the sleeping pills and when is on both he sleeps all day – so is it the meds? Is it his thyroid? But the fact that he sleeping during the day explains the reason why he doesn’t sleep at night.

It’s Saturday- and we awoke at 4:00 am and took pills and then I talked him back to sleep until 9:00 a.m. – which was nice considering I am not getting all the sleep I could use daily. So I make breakfast –pancakes for him, coffee and toast and clean up the kitchen, empty and load the dishwasher, sweep and wash the floors (all the salt and mess from the week) and start the laundry, strip the bed and then start to sit down to eat some breakfast and he wants me to be up and doing with him – and I am not pleased and tell him I want to sit for a minute. Then I realize – just like at night when I have to leave my emotions out of it – and wake and help him out and then back into bed and get him settled before getting back into bed and trying to go back to sleep – I have to approach these situations with the same loving care and not the anger that seems to be under the skin and ready to explode – is it because I am overwhelmed? Is it because I feel so out of control? Is it because I understand how he feels? He has no control over his mind, body or destinations each day. That makes him unhappy- dependent on others for rides, where he eats, what he eats, how much he spends, where he can and cannot go.

Anyway on Friday I suggest he go to the movies with Chris and see a WWIII movie that I don’t particularly want to see and he does. He doesn’t make it – He sleeps until 1:20 and then Chris gets him up and takes him the Coney Island to get some food and get back before I get home – they are locked out in the garage when I pull up and I have the keys to let them in- because he can’t get the door open. I say good-bye to Chris and we are home for the night. I stuff myself with junk and then fall asleep and want to run away. But there is nowhere to go. I have no place to run! I watch the recorded programs as he sleeps next to me on the couch afraid to be anywhere else.

It’s 12:37pm – time for more meds and he is upstairs in the bathroom – and I ask him to come down to take his pills.

His voice is getting raspy- he is not talking as much - he is talking in his head and we are not hearing him. He doesn’t realize he isn’t talking – just like he has forgotten how to stand up or move sometimes – no more automatic responses- he actually has to think how to get up and move and he is not having a quality life- He is tired after normal activities and his friend wants him to work harder and try more – and he is- he just can’t do anymore and his friend doesn’t understand that. After all he is the same age and everything should be working – shouldn’t it! Shouldn’t it?

1:23 and the laundry is still going and he has taken his pills but is sleeping upstairs on an unmade bed – because he couldn’t wait for me at put the sheets on it after I stripped off the sheets from the week. I don’t know if we will go to a movie or not- still needs to shower and finish the laundry- there is a huge wet spot on the ceiling in the front hallway- where the water is coming from is an unknown. Our north side neighbor was here last weekend – and we have a new neighbor on the south side with a little one who trips the light fantastic every once and a while. They are pretty quiet next door.

North side will be back at the end of the month- her friend has offered to take me for my colonoscopy- that is another thing I know that my dear husband hates – that he can’t drive me across the street – But it does no good to be angry about what we cannot do. Do you hear that girl – it does no good to be angry with that which you cannot change?

So let the anger go! It will kill you one way or another.

The kids at school, the grandkids, the kids and the husband – they are all OK and you do the best you can for them all. Let it go! You are not Wonder Woman and you never will be – not even in your own mind! Let it go! The dark clouds will roll away and eventually the sun will shine and things will have some normalcy! Really they will! You have to let go of the desire to be in control and be able to handle it all – or have to justify your actions or who you are. It doesn’t matter – other people are busy living their lives! Get over it and get on with your life. So what if you only clean and make meals and see that he is comfortable. It’s a good thing you are doing! You have spent time- partying, playing hostess and getting ready for guests and enjoying it all. Enjoy what you do, regardless of what you are doing. Feel the same joy and excitement about having clean clothes and a clean house and a happy husband.

I – like all “my fellow Americans” – need a way to make money to pay off the bills and be able to enjoy more than the fact that I am alive and able to watch others screw the middle class until we are extinct. Anger there – yeah I can tell! I need more than a compliment from a colleague that I am should be commended for having a quiet classroom. When I asked incredulously- wasn’t that always the case – I get a derisive laugh and a huge “no” from the man. I thanked him and couldn’t believe that someone could not control a group of 10- 15 kids – Most of us have to have 35-40 kids and keep it together. That was a shock. Does it make me angry that other people don’t take care of their own area – sometimes – when it spills into my area and I have to be the bad cop who can be easily ignored because these girls tell one another– “don’t listen” “Is she still talking to me?” they ask one another incredulously- knowing the other teachers are not going to enter the halls and engage them in any conversation. I get tired of that shit real quick! Being asked by a snot nose 14 year old “Who are you? And why are you talking to me?” I yell at my own kids – to be on time, in uniform without outdoor clothing (despite the lack of heat in the room- or ventilation in the spring) and to act like human beings to one another with as little cursing, cussing and swearing as possible. I do this daily – as I always welcome each one when they enter with a “Good Morning” and call them by name! They return the greeting. We are attempting to be civil and courteous as we can! It’s a real battle while in the halls and through the walls we hear the mfs, gds and other words used as if there are punctuation marks and coming from the mouths of kids 14, 15.

That makes me angry. It angers me that each day I go to a place where the people accept this as normal behavior and are surprised when I can get a few kids to act differently. My kids are the ones known by security and everyone in the building as the bad asses- the skippers, the known felons and criminals. And somehow, in my classroom they act and speak as teens and do not give me much lip- knowing that they are going to lose and I will WIN the conversation- so there is no discussion –They are willing to respect my rules and I am willing to respect them as kids who are there to learn and get on with their lives as well. It’s outside those metal doors that people continue to see them as “no good” and where they have to act that way to keep up the image. They somehow can lose it in the room for a while. So I have several who have to report to probation officers, one who is in jail awaiting trial and another who had a warrant out for his arrest. One girl who is pregnant and afraid she will lose her baby because she can’t read and write. There are another two girls who didn’t come back after giving birth to their kids. A new girl who is 15 and has NO CREDITS- even though she should be a Sophomore but she just doesn’t come to school – and now has stopped her meds and moved to her Grandma’s and doesn’t have uniform clothes to wear – and excuse after excuse after excuse … and I wonder why I am tired.

I thought I had three who will graduate and are done with class work as of January – and another four who will finish in June – but each day is a battle – will they show? Will they work? Will they do the assignments? Will they be able to read or write or get a job? Will they think any differently than before? Am I enabling them? They all qualify for free food- but sure stick up their noses when they have a few dollars in their pockets. They are confined in a room with me for five and a half hours with no ability to walk the halls or stop and play with their other friends.

I thought that having the doors painted with graffiti would help to change the look of my room. That by having the student in the room working it would give the kids another view of the world. Some days it works. The graffiti artist is remarkable. I bought him spray paint last weekend and he has just gone crazy redesigning the art and trying other things because he can. It is a pleasure to see him doing a “legal” work and even his mom came by to see it. I love our art teacher (for many reasons) and thank him for letting this kid work on the doors and classroom. Whenever anyone comes in and admires the artwork – one of my students will say “thanks” or “I taught him everything he knows”. I guess they like it too! And it does make our room a little different and more special than any other area. The process has been going on since November and I’ve already told him the walls are crying out for more. He titles them- “Talking Walls”. Really neat kid!

So it’s almost the end of January and I should have some plan for the care giving for my husband – and I don’t and rely on the kindness of friends. That is wrong! Or is it? I don’t even know anymore. I can’t afford to pay anyone- and both of them are willing to help and be with him – even when he is crazy or having virtual visitors and not being himself – or rather fighting to protect people from unknown nemesis and enemies that are unseen to the rest of us. I know he still believes that they are operating at a different frequency that only he can see. We see the movies where people hallucinate and see and talk to things and people and sometimes he is comfortable with them – and other times he insists on changing the channel.

2:30 and we have eaten a light lunch and the cd music that I burned from the computer still plays on the DVD machine – Yanni is playing a raucous tune and he is finished eating and ready to jump up and get rid of his tray. It is so hard for him to get up – he uses all his energy and voice (grunting and groaning) to raise himself for a moment to get the tray onto the table near him. Then he needs to blow his nose and wash his hands and instead he gets caught up in the bookshelf - looking and looking and I have no idea what he looking for or at.

He helped me bring in the Gazelle that has been in the garage – to see if can use it and try and get some other exercise beside the pool. He was OK on it for about five minutes. It helped him to stand taller and straighter – good things. We will leave it in the kitchen and see if we can start to use daily. There is also the rowing machine- that would put him closer to the floor but also maybe harder to get down and up. We have an appointment with the neurologist on Thursday – I should have him go to the doctor’s with Chris for a B-12 shot- and to complain about being tired all the time. I need to take off time on Thursday to take him to the appointment. Maybe I’m already worried because this is the appointment when we can discuss the deep brain stimulation & whether or not it can still be done – Maybe that is my worry - that we hit an expiration date with the meds and now this is the quality of life that is available for him. Let me win the lottery – let an inheritance fall into our laps – so I might spend my days with him and not be caught between these two disparate and time consuming worlds where I teeter each day trying to stay balanced and at peace with the world and myself.

I have this wonderful picture of my nephew’s wife and his daughter in the wilderness with gray clouds – kissing – being the light and color in the center of the picture – I found it on her FaceBook album and took it for my computer desktop. I love the gentle touching of the lips and the sweet smiles on their faces. The gangly trees and gray sky is no match for the two of them. It inspires me and gives me a feeling of warmth.

He has fallen asleep while sitting and wakes to start moving furniture to find things that aren’t there! He won’t go far from me – and I feel awful! Here was a man who was unafraid of so many things- an now he needs me – his silly wife to protect him and keep him safe from these unknown menaces.

I just don’t think of myself as anything but his partner, his lover, his creative wife – not his housekeeping, nursing and “knowing more than the doctors” person. I think it was too much for me for a while and I stopped it all. I used to include him in an anecdotal each day- now I hardly keep up with the class- it has too many dynamics which are being sorted out – and I can’t take the time to write it down when I need to correct and plan and just be with them. In my heart I guess I’m afraid that Chris or Doug will say “No more!” and we will be back to scrambling for companions and the fear factor will rush out from behind the barrier and I won’t be able to do anything but put it back in someone else’s hands. Believing that all will be OK if I just keep my head on straight and take care of business one day at a time.

The cold, snowy weather had created problems in the morning with traffic flow and getting to work on time. But then that is not really a problem at a place where being late is the norm. The kids wait in the halls while their teacher is on the way to school. There is something wrong with that. We have had more snow than usual – and the cold just doesn’t go away and the gas bill was out of sight- with two increases in the same bill for different periods of time. How the hell is that right? The price of gas is below $2.00 so we can pay five times what we paid in November for utilities. What does that mean? Who is in charge? What has gone wrong with the world?

Speed dating – I had speed dating on my FaceBook page – and I didn’t even know it- the old Big Picture- changed to Speed Dating when I wasn’t looking! How fast everything changes and we are supposed to keep up with it! I don’t think so! Catching my students on their phones and taking them away is about as much as I want to keep up with – they are so silly – bending over and talking when the room is quiet – like I really am deaf, blind and dumb! Then they look at me like deer in the headlights and query “Me? Why?” as I take the phone, sometimes shutting it off and sometimes letting it run down in my pocket as it goes off with the expectation that someone will answer it.
So tomorrow is February – the shortest month and still everything is due – with nothing discounted – and always the insurance comes now and the bills increase.

I have no plan and a part of me is crazed because of that – I have things I would like to do and get done- I have assignments for the class to do and I have dreams that I would love to work on … but I have only the chance to keep myself going each day, remain as healthy as possible.

And as long as I am being honest I am angry at not being able to take care of my teeth and my husband’s. I have huge holes in my mouth where the food crams and stays and I need several teeth – once they removed that bridge and took out another tooth they left me with a huge hole and the prospect of a huge bill to get a partial, implants or another bridge with implants. And that is only on the lower right side – I need work on the upper and lower of the other side- not to mention the shitty way he handled my front teeth so that I’m ashamed to laugh or open my mouth. So if that money is coming – it’s going to get the teeth fixed and his mouth finally fixed as well – so he can be as healthy as possible as well. I was so afraid of mouth cancer that I failed to see how they destroyed what chewing ability I had in the search for removal of all things that were once there and usable.

Teachers continue to disappear from the building and I have no idea if I will be kept or how long I will be there at my school and making a salary and having medical and dental insurance. The blade hanging over the head with the threat of closing more schools (18-30) and adding more students (?) to the already dwindling population who are thrown out of their original schools to come and add to the juvenile delinquent population already in the building.

So – I only have the same complaints as most of the world- because this is not just an American thing – no the world of industrialized nations is suffering the pangs of greed and jealousy and mismanagement. Families are torn apart – and I am tearing my own with my fears and lack of sleep – take a nap and forget all the shit. It’s not worth the craziness – and it’s really OK! Do no harm – to yourself or anyone else!
So if there is no job, no money, no insurance, and no other way to make a living – do we live on the words of HOPE and CHANGE! I’ve done nothing but change and continue to try to change to meet the demands for the past ten years. I have gone from having money in my pocket to none and back and forth! I have the love of a man who needs me more than he should! I have a job that takes all my energy some days and leaves me empty and feeling lost at being unable to help or create any change. I have put out my feelers for others who might want to help. I hope they answer the call.

The merry-go-round is stopping one more time – and I want to get off … at least for a short time to enjoy what the world has to offer … and not merely have to survive and shows others how to do the same.

I’m ready to take a chance on myself! Watch out world – I may be older but I haven’t given up yet! And I just might get a little wiser one of these days!

Happy Birthday to all the Aquarians and Pisceans! God be with all of you! Happy Birthday Michael Joe!

NEW

2009-01-25T16:29:00.000-08:00

Like a shiny new penny - we have a new President and a hope for a year with a little better prospect for all of us. We will wait and see what it brings.

सुरपरिसे!

2009-01-12T14:55:00.000-08:00

We got a phone call from a local video vendor - he wanted to know where we were and what were we doing! He had been at a local meeting of film and video people and they had asked about us and our program! That was nice! At least we were missed and didn't just disappear into the woodwork!

It certainly made my dearly beloved know that he was remembered for the right reasons!

The loss of power over the holidays was a minor disruption compared to the horrendous weather others throughout the country experienced. Now we are waiting for the deep freeze to hit and more snow! It truly is winter!

Saturday Ramblings

2009-01-10T11:54:00.000-08:00

Saturday – January 10th 2009
The snow falls gently outside – the dire predictions of inches of snow prevailing and causing catastrophe and chaos have once again been overly dramatic – though that apparently is what the meteorologist are paid to be – the hawkers of bad news and early preparation for the worse.

It has been an almost imperceptible beginning of a new year. The old slid always with the sound of gunfire – as neighbors shot off their guns in celebration and elsewhere in the world the gunfire was to take back land, people and things that others covet and want back – or want as their own. The now jailed mayor – several years ago called for a bells celebration on New Year’s – a wonderful and ambitious endeavor to have people put away the loud banging with the explosion of gunfire and instead clang bells, ringing in the New Year with a sense of peace. People find it hard to change old habits – we are like that – sometimes stuck in the past and afraid to move into an unfamiliar territory.

I am always a little apprehensive when I have to travel to a new place. Will I find it? Will I get lost? Will there be people who are wiling to help? As I get older I think of the stories of older travelers lost on the roads and taken advantage of by those who are out for no good. There remains an awareness of my surroundings and an eye to making sure I am not venturing where I should not go. But life doesn’t always give you a clear cut map – Stay Away – it will drag you down and make you lose several years that could have been happy – Warning – Bridge Out on this Relationship – you’ll need to do a lot of jumping and holding on to whatever doesn’t float away. CAUTION – this is a leap of faith and no one knows where it will take you until you try it.

My analogy of life and travel is a little sloppy and needs some refinement and a sense of a key – to help the traveler understand the various symbols thrown along the road. But in some ways we expect life to be like that – with signs and symbols that tells us where to go, how to act and what to do next.

I was a firm believer in “putting it in God’s Hands”. I thought I was doing it – and realized how after I made my prayer and sent it off to the heavens – my next thought was busily planning what I needed be doing. After all – someone has to be in charge! Not only was I taking on the need to direct to my own actions – but those of anyone who crossed my path as well. After all I am an educator and all that it entails! What a great laugh! What a disproportionate sense of self!

So it was only recently after 60+ years that I have come to understand a little of what it is to “put it in God’s Hands”.

It was a revelation that makes my knees buckle – that when I do allow myself to listen to the inner voice and ignore the noise – things seem to work out in a manner that makes me more comfortable and those with whom I come in contact. That whole sense of peace is real and not just a shawl thrown over the shoulders to stop the fear and shaking of the moment. It permeates and fills my entire being with the peace and knowledge that this moment is OK and then the next and the next. It is only a matter of letting it be. To step aside from myself and allow it to happen is the hardest part of the equation.

I have felt these feelings before – when I was sequestered behind the convent walls and had time to allow myself the indulgence of not having to be in charge – we had Superiors to do all that! But once I left the hallowed halls I left more of that true sense of self behind as well. I allowed myself to once again be caught up in a world that demands and provokes and excuses and will take everything – unless you know when to say NO and when to walk away. Finding the balance was always the quest. Knowing the difference between what was needed and what was superfluous. Understanding the moment and not caring about the next was a goal for which to strive. Perhaps joining those who had gotten “off the grid” and returned to a simpler life. All of the was intoxicating and sounded inviting – until I thought about who I really am and what really make me click and happy and excited.

I thought I was the person who wanted to return to the earth and make my life simpler – growing and making and living like my ancestors. And then I remembered how hard my grandmother worked each day to make her life and those around her happy. Each day of the week was a chore – except for Sunday – she observed the Sunday as a day not to work and she labored hard and long to make sure she was caught up with all and any chores that needed doing before that so she could go to church with the food prepared the days before and stay for hours with other members of her congregation for services and then socialization. I remember the smells and length of time – it seemed like forever to a kid – that almost overpowered me. I had wanted to go with my grandparents to their church and they were more than willing to take me – the problem was twofold – most people did not speak English – and most were adults who were accustomed to spending their Sundays at church – not merely attending a service and then heading home to another world – but fully engaged and willing to spend time at the church with these other members to talk and eat and enjoy one anothers company after very lengthy services with much singing from the cantors (my Grandfather being one) and incense filling the air to the point of nausea for the kid who was hunkered in the pew next to the women who were caught up in the words and sounds which were merely gibberish to me.

These were the people (my mother’s parents) who taught me how to garden and cook and sew and ride the bus and get around the city. They showed me the hard work of raising something and being responsible for it – my own garden patch with vegetables. It was along the face adjacent to the neighbor’s rose garden. Now there was a gardener. He was out at all hours tending to his lawn and flowers and such. He was even out at 2:30 a.m. on the night of my prom watering his lawn as I was trying to make-out with my date prior to leaving the car – when he decided to water the car and let us know he was there and was aware of us.

But I stray from the real intent of all of this rambling. These people showed me the gifts and the hardship involved. It didn’t frighten me away from hard work it only made me aware that you have only so much energy and you need to choose the things you want to put that energy into. On my own I would probably just go from “pillar to post” as they say – randomly getting involved until I was ready to move on and with God’s help not end in a disaster. But life doesn’t always allow for such a freestyle way of living. When you have a home, family and other responsibilities creditors like to be paid “on time” and in the currency of the country and not via bartering methods.
I easily get caught up in what is expected and needed and drive myself crazy trying to meet some standards that apparently are arbitrary and only seen by myself. I allow myself to become so involved with the methods that I lose track of the intent.

Let me elucidate – getting to work on time. Driven into my head as a must. A good employee is not only on time but arrives early and is ready to begin work on the stroke of the clock so as not to steal a moment from the employer. Now where did this come from and how is so engrained in my brain that I need to let people know when I am going to be five minutes late? I am pushed to distraction when I am running late and become fixated on getting there and not allowing myself the courtesy of living through the moment or being gentle with myself for the circumstances which have placed me in a situation that doesn’t meet with the norm.

“I’m running late!” comes out of my mouth and I want to scream and run away. Am I the white rabbit and will I disappear into a hole and become part of a fantasy world if I am not on time. Probably not – but I might be written up and have it as part of my employee record that I am tardy and therefore not a good person to hire or have on someone else’s payroll. But then I work in a milieu where being late is acceptable –almost! There are certain expectations that are relaxed or changed because of color and culture. This was very hard for me to accept and understand. CPT was a real topic that was bantered about by all the kids and adults with whom I have worked over the past 12 years. It is an accepted way of life. So as I stand at my doorway at 8:20 and the bell rang at 8:05 and students were supposed to be in their classes and working we have adults and students alike entering the building and leisurely going in directions other than where they most likely should be. I close my door and await the arrival of my own students who for most part believe that anything before 8:30 is just too early. There is either something wrong with having a starting time – or making them understand the importance of a starting time. They all know when things end and when they are done – so why do we allow them to ignore the start?

It is just a question and not really important at the moment.

The snow continues and my husband dozes in and out to the music playing on the cds created from the iPod selections and giving us over 10 hours of listening pleasure. He awakes to hum with the electronic cello as it plaintively plays the notes of an old folksong, only to close his eyes and go somewhere else for moment.
He has been very tired since his surgery – though all blood work shows him at the top of his game and not in need of any new drugs to add to the already toxic cocktail he ingests each day. For this and much else we are grateful His unknown tumor (benign) was removed along with half of his thyroid and he is in good health and the incision is healing very nicely with little scarring. We had a very nice holiday – we enjoyed seeing the Chicago kids and how they have and continue to grow. What a wonderful group of people. They are loving and caring and fun to be around. We also enjoyed our neighbors who came back from California for Christmas. It is always good to have people next door. We have a new neighbor on the other side – we hear the patter or feet but have not met anyone yet to match the sound. Snow, cold and opposite hours for coming and going have prevented getting to know them. It is on the agenda for this year!

The husband has decided not to go swimming – apparently some things have changed because the girl instructor he likes doesn’t have enough people for her class and so it has been disbanded and only one class is offered during the time he used to attend and it is with a group of women who go to socialize and it irritates him because he can’t hear the instructor and doesn’t feel like they get any benefits from the water as they should or do with the other instructor. The women, on the other hand, don’t like his favorite because she won’t let them dominate the class. Control issues again. He does not deal with confrontation or people being upset with him. Avoidance is a favorite for most of us and his means of handling this unpleasant situation that denies him the chance to exercise and improve his own health. Poor reasoning on his part– but not at all unusual especially when not based in reality.

It’s 1:30 – I began this about 10:30 a.m. with many interruptions to complete other tasks. Rather than giving up - I keep coming back to it because this is what I have chosen to do with my time on this day. This was my gift to myself.

He is shuffling around the rooms as he looks to make things work – and put them away. First he takes everything out of the boxes he has used to store and accumulate these items – and then he places them all over every surface that will hold them and he walks away. He is tired and no longer interested in any of it. So if I pick it all up and put it away- he goes back to it and takes it out and uses an even larger area. When asked if he needs help - he declines. When he begins to work on it – he is caught up in one item and it takes him away from the task he began once again. Then he needs to go and sit and then he lies down and sleeps and then it is almost the end of the day and we have done nothing. So it never gets done. So I feel like it is a vicious circle when I want to have some control over it and on the days when I don’t care – I see it as his doing what he wants when he wants in his house.

He cares more about what others think when they come in the house and see it littered with stuff – I have given up caring about what his friends might think or tell their wives about my housekeeping abilities. It makes no difference to me. I want him to be busy and engaged and not really in wrapping cords and sorting power supplies that should be with their own electronics from which he has liberated them and placed them all in one box, so you have to read the fine print and attempt to match them with the right electronic device. This is another one of those “I wish I didn’t have to do it” moments that has been created because of some short-circuiting in his brain that demands that he do these things. It’s like looking for things that he has lost – misplaced – because he doesn’t remember where he puts things after he uses them. His wallet, watch and cell phone are the usual culprits that go missing. I wish I had a GPS installed on everything he uses so we could call it or find it more quickly for him. Sometimes it is his glasses and he is seeing things that don’t exist through eyes that betray him with what they tell his brain is or isn’t there!

At school I feel better this year because the kids I have do seem to have made some progress – not in terms of giant steps but little steps that might help them to continue to learn and go on. The mix of all the different abilities is like a regular classroom with each kid needing their own recipe for success. The only difference is this is supposed to be their last chance – a shot at finally getting their act together enough to get a diploma and leave. The problem is – the progress they make is not the same as the students I once taught who were prepared to enter the world and could read, write and do math and interact and were ready to be part of a workforce. These kids are just making to get by and that is saying a lot. I really have enjoyed this school despite the neighborhood and stupidity of the district.

My classroom doors are spectacular – thanks to the Art teacher and one of his students. The doors are welcoming and wonderful and a cause for people to stop and look and admire and enjoy. Both the inner and outer doors are works in progress as the artists continue to craft their final vision for each.

I miss the after-school kids and projects-but I don’t miss the long hours and the weekends that were spent doing only that and not having much energy to do anything else. I think he misses them more- it was a purpose for him to get up and people with whom he could interact and who didn’t judge him or make him feel bad about what he could or couldn’t do. I want that for him. I wanted him to be able to find something for himself that would give him that – the ham radio- the time with old friends – but all that only makes him happy for a moment and then he is – I don’t even know. Sullen, downcast, unhappy and negative are words that come to mind when I think of him. He is no longer the man of vision who sees beyond the moment and into tomorrow with a glimpse of where others can be and how to get there. When we were listening to Oprah –at his behest – and her sex show we were listening to people talk about the need for intimacy – and I realized that it was the thing I missed most when his disease took center stage and when it monopolizes our lives now! We used to be able to talk, laugh, dream and share so much. Now – there are days when I don’t know if he hears what I say – and others when he is acutely present. When those moments happen I relish them – whether we are snug in bed, sitting on the couch or driving along the road. My friend and partner is back and for the moment we are once again a couple of crazy kids who enjoy being with one another and love each other madly. Then the days when he can barely move- cannot raise a hand without much mental anguish – I have to set aside any emotional response and be there for him if he needs my physical help. I have to respond and not react because he is my love.

He needs to get his wisdom teeth removed because of the deep pockets that are possibly causing the infections in his mouth. He needs to have the rest of the deep cleaning completed and then move on to the regular dentist who will once again recommend him to the specialist so that it will cost more than the usual visit to have it completed. This drives him a little crazy because the cost is something that he cannot pay in one visit – and so we have to charge it and the bills just increase and he feels this need to be the provider and I cannot make him understand that his health is more important and that it really doesn’t matter if we have to pay it off over a longer time with interest – he will be healthy! So it goes and he is not convinced because his script in his mind says he is to be the provider and is not meeting the measure. We were recently sent a bill for the emergency room visit from this summer when the drugs created more problems than good for him. It blew him away. When I saw it I was confused – how could it not be covered by insurance or Medicare? So I called the hospital and left a message to call us back and reminded them that my husband had given permission for me to speak about the bills I pay – and they returned the call the next day and I was told she would resubmit the bills and let me know if there was another problem. I thanked her and let him know. He thanked me for being so level headed. I was taken aback but thanked him and asked him if he meant to say I was a “beautiful, sexy level-headed wife”? To which he replied, “Of course!” and I knew for that moment he was really there! I reminded him, that we could get through anything when we work together and not against each other. We both agreed.

Chinese New Year is in nine days. I have always tried to make that the time when I have concluded all the tasks from last year and prepare to start a new one. Somehow it makes more sense for me than January 1st. So all the debts that can be paid off are, we are not at war with anyone personally or feeling anything but good, we are grateful for all we have and looking forward to what each day will bring. I am ever so grateful for a job that I like and people who are willing to spend time with him. We have been blessed with good friends.

We have not been able to shower people with presents as in the past and I know that works against him as well. It’s one thing to agree that we won’t send cards or gifts and quite another to accept that we are not in a position to be able to be as generous as we have always been. It works against that mind script ingrained in his brain.

Putting it in God’s hands – never an easy task! Look at the possibilities for messing it up on my own – taking the wrong turn – making the wrong statement – hurting another person by pushing for a personal result! If I give away control who will make sure I am remembered? That was the feeling of the little girl I once knew – I know I can be OK and not have to push or pull to make it so! I can leave it where it belongs and pray for the grace to accept what comes my way and ask for blessings for those we love and wish only the best.

Let it snow, let it snow – after all it is winter!

January 26th 2009
Happy Chinese New Year
The Year of THE OX

Those born: 2009, 1997, 1985, 1973, 1961, 1949, 1937, 1925, and 1913

Low and steady marks the ox’s character. Bona fide leaders, they are grounded, determined and highly dependable. They have the ability to motivate and inspire confidence in others as well. Those born under the sign are meticulous, systematic and real sticklers for details. They can be straight-laced and prefer routine, aiming to thrash things out in a methodical manner till it bears fruit. Simplicity and straightforwardness govern their personality. However, the ox has a temper and it’s wise to get out of its way when it rears it horns. It is also a sign that is overly proud, refusing to seek assistance. The ox chooses to depend on its head to reason things and finds it hard to tolerate the weak. Chauvinistic and even tyrannical, the ox is often grumpy, bigoted and refuses to forgive of forget for that matter.

Famous people born in the Year Of The Ox:

Armand Assante, Charlie Drake, Clark Gable, Eddie Murphy, Elizabeth Peña, George Clooney, Gregory Nava, George Lopez, Jack Lemmon, Jack Nicholson, Jane Fonda, Jeff Bridges, Jessica Lange, Jim Carrey, John Corbett , Jorge Garcia, Kate Beckinsale, Keira Knightley, Meg Ryan, Meryl Streep, Moctesuma Esparza, Napolean, Nomar Garciaparra, Paul Newman, President Richard Nixon, Richard Gere, Robert Redford, Rock Hudson, Roselyn Sanchez, Shirley Bassey, Sigourney Weaver, Van Gogh, and Walt Disney.

The Chinese believe the animal ruling one's birth year has a profound influence on personality, and destiny. The saying is: "This animal hides in your heart."

Sunday December 7, 2008

2008-12-07T09:02:00.000-08:00

Another month and so much has happened and yet we are still somehow in the same spot – changing and watching the meds – good days vs. bad days and sometimes the bad winning – but keeping on – that’s the best part. My dearly beloved has returned to swimming – that is when he gets there on time and can undress and get into the pool before the exercise period is over. His mobility issues have created the same old problems again – unable to easily dress or move and finding it almost impossible to throw off the covers to get out of bed. His friends have been unbelievable in coming by and being with him during the week so that I can go to work and we can continue to pay the bills and stay behind like the rest of the American population. Always a few hundred short – and always looking for a way to make ends meet!

Mr. President – Elect says we need to be aware of people being able to have things – we need basics – we are not even at the point where we want luxuries! Basics are the things most Americans are losing with the economy and bailouts and lack of movement – and organizations looking for ways to save money. I saw a man on the news who wears a placard saying he is close to being homeless and is looking for a job- all dressed up and carrying his laptop and resume’ and looking for a job in New York. Good for him! How many people like him are there? Barack says that we are going through bad times and we need optimism that there are better times ahead and that’s what he wants to have the White House show the rest of the world. Good for him- and the best in making that happen!

Broader Unemployment Rate Hits 12.5% was the headline in Friday’s Wall Street Journal.

According to the US Dept of Labor, Bureau of Labor Statistics in a report on December 5th, job losses were … 533,000 in November, 403,000 in September and 320,000 in October. Job losses were large and widespread across the major industry sectors in November. Among the unemployed, the number of persons who lost their job and did not expect to be recalled to work increased by 298,000 to 4.7 million in November. Over the past 12 months, the size of this group has increased by 2.0 million. (*See rest of report at end with numbers for all the areas that are non-farm)

Here is yet another problem that effects the entire population and yet is dismissed by those who are lucky enough to be employed. These numbers do not bode well for a prosperous Christmas. We have already decided - it will not be a card-sending, gift-giving time for us. Not this year! But we will still believe and celebrate the moments with those we love!

So much else needs to be planned for the holiday time – that is non-celebratory related. We will set up a time for his surgery to remove the nodule on his thyroid and determine once and for all if it is cancerous or just a cold spot that needs to be removed and another drug added to the already plentiful regime he swallows each day. We will see the ophthalmologist about his vision changes and possible cataract surgery in the New Year. We will use the time to mull over the idea of being offered a chance undergo a “deep brain stimulation”- to reduce or eliminate the drugs and after-effects for the Parkison’s Disease - because we have been told that he is “good candidate”. We will make the trip to the local establishment and have him fitted with a new back brace - since he destroys the ones we get with the constant use. The ears seem to be temporarily OK- with the use of silicon earplugs that mask out some of the annoying noise and sounds that cause him anxiety. (We are also monitoring the meds to adjust his neurons to not overreact to flight-fright situations.) The trip to take care of the periodontal problems to determined and eliminated so he can have a healthy, happy mouth. And finally, cleaning up and taking care of the last of the situation with the Sheriff’s Department from last August. Sometimes all of this seems overwhelming – so I have to take it in steps – and not worry about shopping for presents or sending cards or decorating or doing anything but getting the everyday things completed (laundry, meals, caregivers and going to work).

We still have those malevolent phantoms that seem to take over the minute I leave and create havoc and take things out and move them – and break them – and lose things and create disorder and chaos for him, and in the end me! I am dumbstruck by the idea that we have to move – in the current economic situation we would never be able to sell – let alone purchase a place – when I am not sure if I have a job from day to day. That is a real mind blower that every time I try to handle leaves me in inner turmoil and looking for a shoulder on which to cry. We have had a few blowouts about this subject as I am reminded that I don’t believe him and so he refuses to share with me because I am dismissive – when I am trying to help him see that there is nothing to be afraid of – I am making him angry because I will not agree with his hallucinations. I hate having to live in a house with the shades and drapes pulled and the lights blaring on high when there is sunshine outside that could warm and light the areas. He knows this and so when he knows I am coming in the house he will put a slit in the verticals so it allows some light into the room – a compromise that I am delighted to accept. But when I am home with him on the weekend I open up the house and try and have him enjoy the time. Some days it works.

We recently celebrated an anniversary – we were a little rocky the night before and he had his friend take him to a florist and buy me flowers – when he came in from being out – and I beating him home – he wanted to know if we were OK- and when I said yes – had his friend give me the flowers with a note from him. I was overwhelmed!
Like he says – he tries very hard each day to help me get to work and to try and do what he can to help out. I love him for all his intentions – he just can’t really pull off as much as he used to – and he knows it!

So we are working on his getting better – on having more than enough of everything we need. We have been getting better answers from the doctors – the chance to give him some relief – I am losing more weight and my hemoglobin in back to normal and I have no cancer in my mouth! We have been through many things – and survived them all! We will make it through this month and the next and the next. One at a time!

I was wavering for a moment but I think I am a little steadier and ready for this.
Things at work are crazy as always – and I have to accept that I can’t change any of that and just do my job to the best of my ability! The kids are doing some nice things and I just want them to be learning. I might have three students graduate in January – that would be great - and then three more in June! Water off my back- that’s how I have to deal with the negativity. Water off my back and keep on smiling and making it happen! I am blessed and grateful for the day and the chance to enjoy the moment! Even if it’s cleaning out the fridge and making a sandwich for lunch or paying the bills – at least writing the checks in anticipation of the paycheck being deposited। All of these activities I can do and am thankful that I can। That at least one of us can make it for the other by doing these things – while he uses his brain to look for other moneymaking activities. I still need to see if I can get the writing book published and Dennis and I can make some money from that project!

Lord send me a way to do that without having to lose too much time from the other activities which seem to call for me and my attention! I will walk wherever I need to go.

May your holidays be blessed with all that you need! I feel good about what we are going to do and even for the first time I am not feeling guilty about not being a present-giving crazed person – we will get through all of this and come out stronger and wiser and better.

Happy Holidays to all!

Here is MORE of the Labor report with specifics for each industry.
*Total nonfarm payroll employment fell by 533,000 in November, bringing losses to 1.9 million since the start of the recession in December 2007. Two-thirds of these losses occurred in the last 3 months. In November, employment declined in nearly all major industries, although health care continued to add jobs.

In November, employment continued to decline in manufacturing (-85,000), with widespread job losses occurring among the component industries.

Manufacturing employment has declined by 604,000 since December. Within durable goods manufacturing, job losses occurred in November in fabricated metal products (-15,000), machinery (-11,000), wood products (-9,000), furniture and related products (-7,000), primary metals (-7,000), and computer and electronic products (-7,000).

Employment in transportation equipment edged up, as a return of 27,000 aerospace workers from strike more than offset a job loss in motor vehicle and parts (-13,000). In the nondurable goods component, job losses occurred in plastics and rubber products (-12,000), printing and related support activities (-5,000), and textile mills (-5,000).

Employment in construction fell by 82,000 in November, with losses occurring throughout the industry. Since peaking in September 2006, construction employment has decreased by 780,000. Specialty trade contractors lost 50,000 jobs in November, with both residential and nonresidential components contributing to the decline.

Within professional and business services, the employment services industry lost 101,000 jobs over the month, bringing total job losses since December to 495,000. In November, employment fell by 10,000 in architectural and engineering services.

Employment in retail trade fell by 91,000 in November. Job losses continued in automobile dealerships (-24,000). Employment in the industry has fallen by 115,000 since December, with much of the decrease occurring over the last 2 months. In several other retail industries, seasonal hiring for the holidays fell short of normal in November.

After seasonal adjustment, employment declined in clothing and accessories stores (18,000); sporting goods, hobby, book, and music stores (-11,000); and furniture and home furnishing stores (-10,000). Wholesale trade employment was down by 25,000 over the month, with most of the decrease among durable goods wholesalers.

Employment in leisure and hospitality declined by 76,000 in November, with most of the decline occurring in accommodation and food services (-54,000). Since peaking in April 2008, accommodation and food services has lost 150,000 jobs.

In November, employment in financial activities continued to decline (-32,000). Within the industry, job losses occurred in credit intermediation and related activities (-16,000) and in rental and leasing services (-9,000). Job losses in financial activities have accelerated over the last 3 months, bringing the total decline since December to 142,000.

Elsewhere in the service-providing sector, employment in transportation and warehousing declined by 32,000 in November, with most of the losses in truck transportation (-12,000) and couriers and messengers (-8,000). The information industry lost 19,000 jobs over the month.

Health care employment grew by 34,000 in November. Over the past 12 months, health care has added 369,000 jobs.

The change in total nonfarm employment for September was revised from -284,000 to -403,000, and the change for October was revised from -240,000 to -320,000. In both months, there were large revisions in most of the major industry sectors. These revisions resulted primarily because of the normal monthly recalculation of seasonal factors rather than the incorporation of additional sample reports. (http://blogs.wsj.com/economics/2008/12/05/broader-unemployment-rate-hits-125/)

2008-11-03T14:44:00.000-08:00

To become a miracle worker means to take part in a spiritual underground that's revitalizing the world, participating in a revolution of the world's values at the deepest possible level.
—Excerpted from A Return to Love: Reflections on the Principles of A Course in Miracles

Please

2008-11-01T06:29:00.000-07:00

November 1st - Another month and the sweet taste of candy lingers in the mouth and the lying seductively in the bright orange bowl from the lack of trick-or-treaters ... or is it the over-purchasing of goodies? Anyway - sugar is responsible from my irrational beginning to the day ... or it is something I can blame without being fully liable for outrageous behavior before the sun has even risen!

He hides things! He doesn't know why and often he doesn't know where! But this a.m. it was my pill box - and as I was struggling to use my arms and looking for the box of pills to help relieve the pain - I was taken aback by the knowledge that he is hiding things again. This hasn't happened in awhile. I had quite frankly come to believe it was a temporary blip on the horizon that signaled ... I don't even know! But.. I thought it was over, done finito! A thing I did not have to endure again. How wrong! How silly of me to even think that way! So - when the relief I sought could not be found - I lost it! What an unpleasant way to start anything!

Ugh! It makes me queasy to even think of how easily I let it all go and blew up for a minute - even that length made it miserable and uncomfortable - and it's truly amazing how many words can fly from your mouth in the short sixty seconds that somehow seems to multiple in the presentation you lay on another who you feel has somehow caused you all this discomfort. WOW! Wrong and wrong and wrong! And then there is - Sorry and I don't know and yes, I do! And no, I don't want to believe and yes - I need to accept and then finally! SHIT!

So for those of you - who climb the mountain faster and with more agility- I salute you! I send greetings to those who are on their way to wearing the crown promised to the faithful -- I struggle to get off the mark and GO! I'm sitting here tying my laces and contemplating the need for lace-less shoes!

Always thinking - but not before letting the mouth open, engage and put me back twenty paces in the game of life!

May this month bring peace to all as we enter the stress-filled time of holidays and family and other emotion laden moments in our already stressed days!

May the extra hour - help us all to step back and give ourselves the room to breathe and start again.

Later ----

LIFE

2008-10-12T08:02:00.000-07:00

Sunday – October 12, 2008

WOW! The week has sped past – not the moments but the length and breadth of them. Each moment was pretty well packed with some type of energy and motion - even my sleep.

Frank Sinatra "That's Life" says a lot of our human condition.
That's life (that's life), that's what all the people say
You're ridin' high in April, shot down in May
But I know I'm gonna change that tune
When I'm back on top, back on top in June
I said that's life (that's life), and as funny as it may seem
Some people get their kicks stompin' on a dream
But I don't let it, let it get me down
'cause this fine old world, it keeps spinnin' around

We have been … up and down and over and out and I know one thing … just as the words of the song - which we are going to be FINE! Now in the meantime we have a lot to do! Every time I thought I had found the answer, another challenge appeared that needed to be addressed by me. It was like an onion – and all the layers would just keep on going and going and going. It’s a long way to the core of the matter.

All around the people of the US are feeling emotions and going through fears they never anticipated – or even thought possible for a country like America. The looting of America – by Ben Stein – the looting of our money and our sense of pride, honor and the ability to get through this as well. Jobs, money and security that is wrapped up in all of that – because we are trained to see those as the standards by which we are judged by people – the size of our home, bank account, car and family – some large and some small.

We have lost the sense of knowing who we are as a people. We don’t seem to sense the need to band together – rather take what is ours and flee, hide and covet, in fear of more loss.

Our leaders are not charismatic- nor do they have the answers that are really needed – they mouth words of others who formulate policy and propose solutions to situations they have possibly created with their erudite brainstorming- creating a vacuum where we need air. We are no longer a formidable force in the world – but a sagging, ailing world leader in need of help from others to make the world a safer place. Perhaps that is the penalty for pride – the need to know and accept we are not alone – that we are all interconnected. That the butterfly effect is real. That when cry – somewhere the pain is felt.

I've been a puppet, a pauper, a pirate, a poet, a pawn and a king
I've been up and down and over and out and I know one thing
Each time I find myself flat on my face
I pick myself up and get back in the race

That’s what we do as a people. We get up and keep going. Look at the survivors from every major catastrophe and man made disaster – including the Holocaust. Despite the horrific things which they were forced endured they survived to tell about it and go on to prove that human nature and human will is stronger than the desires of petty tyrants, and criminals and thieves who would steal away the goodness that the world is and can be. When I was locked up – we prayed each day for the world and the those who needed prayers. I always saw our prayers as white smoke rising to meet the dark clouds and somehow mixing to change them to a lighter gray. I thought it was a chance at changing – a hope at changing – I wanted to believe it was the change that was meant to be. When I left and entered the world – my prayers were usually more self-centered and less encompassing. I wanted, I needed! And then I remembered the words that one of the nuns had on her bulletin board every year – a priority of our thoughts – God, Others, Myself!

I fought that idea – who would look after me if I didn’t? Who would watch my back? Who would take care of those I love?

I didn’t appreciate or understand the importance of what it meant to have something other than myself first!

Then one day it hit me like a ton of bricks and I sought out people and places that would help me grow and become a better person and more living and caring. I went to a meeting where I had set up an appointment to meet with a person who would counsel me with my search – paid my money and waited – a respected person, my mother even was impressed by this man and his abilities. After waiting an additional hour to see him, because he was running late, and I had rethought this probably a hundred times, I went into this small room with two chairs to meet him. He shook my hand and let me sit and asked me why I was there – as I was explaining – he stopped me and said – “You know as much as I can tell you – in fact probably more- don’t waste my time or yours! “ And he ushered me out! I was flabbergasted! What the hell had happened? I paid my money- I waited patiently and I was given the rush!

It took me a week to get my head on straight and accept what the man had said. When I was in peace – I was at peace and knew what I had to do intuitively. When I was at peace with myself my days went pretty well – despite bumps, hiccups and sometimes mountains that needed to be climbed – I was ready.

For a long time I went on neutral and got through a lot of my life that way. Things just happened, things were there when I needed them, people were there when we needed them and peace was pretty much an every day thing. Even the bumps and bruises healed more easily and were forgotten quickly.

Then once again- I lost it! I knew I had lost it! I didn’t know how to get it back! I seemed to be in an endless spirally maze where I couldn’t grab anything to hold onto or grasp and continued to bob up and down in an emotional morass that kept me stuck in some place I did not like and did not want to be. I walked through the days and performed so that others never knew how lost I felt or was. They told me I was doing fine and all the while my insides ached and my head was in a constant spin and I felt as if I would drop off the face of the earth – and no one would know or care – and I wanted to do that! I wanted to disappear. What had happened?

All of the things I had put in place to save me from these situations I had lost – I had not replaced and now when I needed something else to remind me of who I was – I failed to find it! Those around me showed me a person I didn’t recognize or feel comfortable with – yet it was what they needed. The situations I put myself in did not help me grow but allowed me to stagnate and remain in standing position only with the help of false props and artificial emotions.

It’s been along journey. My tears like a flood, bounced in all directions, and took things randomly and viciously, destroying what was once there. The sighs were heard on High and probably answered with loving care – but I failed to accept it because I was too busy taking another deep breath and letting it out – but not letting it go! My pleadings for what I wanted – instead of accepting and knowing what I needed were like those of a spoiled child – something I acted like – but deep down was never meant to be.

I have had a moment of peace! I remember what it feels like to be at peace despite boiling coffee spilling on my bare skin and onto car seat and floor. I know the peace of finding something to wipe it up and the belief that I can make sure I have no burns or blisters. I can laugh at the news of yet another medical problem for my husband – not because it is funny – but because it is another clue to getting us closer to the real answers. I probably am stretching my credibility with people because I do not care to engage in emotional repartee but prefer to take a position of what can we do and what will we do – not idealize the fact that someone needs our help. At work we have an entire student body that is there because they need our help – sometimes we can’t help everyone – sometimes NCLB is just jargon and not reality. We cannot continue to pretend we have the answers for everyone.

I know that I barely have the answers for me – I have given up looking for answers and am back to where I once was – following my inner voice and listening to the silence and trying to remain in peace – despite the noise of the world!

As Lee Ann Womack says:
I hope you never lose your sense of wonder
You get your fill to eat
But always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small
When you stand by the ocean
Whenever one door closes, I hope one more opens
Promise me you'll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance
I hope you dance

May you dance your legs off and enjoy the music as it rings from your inner peace!
My prayers to all of you!

SUNDAY

2008-10-05T07:11:00.000-07:00

Another month - where does the time go?
It's so hard to accept the change of colors and the cold air- when I was lulled by the signs of summer that lingered longer than usual in the area.
School, the smell of old, musty and spot cleaned areas and people! We are back to the everyday!
The week has been a roller coaster of emotions -but more importantly - a loss of time for sleep and other rejuvenating activities - like meditation and peaceful sitting.
The stock market received a BAIL out - a matter of who you know and not what! It's like the days of old - the pirates rape and pillage and hoard their booty and when caught - offer up an excuse - I was doing it to save you - save WHO??? The only problem is instead of being strung up- as in days of old, me hardies, they are given a pat on the back and told they can't add to their golden parachutes- but can now safely jump and all is forgiven - the paperwork will be forgotten as it meshes with the hundreds of billions of dollars that are thrown at problems - like solutions and not the band aids to get some people out without too much trouble.
What about the rest of the people who are actually going to pay again for someone else's mistakes and/or hedge funds gone bad!
Then of course there is work - in the city where our Mayor is going to jail- and the monies he and his cronies have taken are already forgotten - but the schools and other municipal facilities are being scrutinized and reviewed and found wanting- no money- no pay-back of money to the State - another State takeover - loss of employees and buildings to make a budget that will work - someone else watching and controlling the pocketbook. Another stress - another wonder - where will I find a job to pay the bills and purchase the health insurance - no different than what my other 'Fellow Americans" are feeling and wondering as our retirement funds dwindle before we even draw from them - and the need to work to pay the everyday bills increases as the everyday bills skyrocket to "current day levels" (According to some we are just adjusting! Too bad it has to all be at the same time! And what the hell does that mean? Adjusting to who or what?)
So - if I am where I am supposed to be - and I am doing what I am supposed to be doing - then I can't let all this shit bother me!
I have to believe that the actions I take will be directed by my inner sense of seeking answers - that I will make it through this too - as I have before - and that rather than cry and moan - I will accept and be thankful for the fact that right now - in this now! I am happy- and with the man I love who is up and moving and knows who I am and who he is!
I will accept the beauty of the changes outside - I will accept the beauty of the changes to our lives - whether we can see them or not!
May you find peace in your world.
Happy Birthday to all the Libras in my life - may the year bring you much happiness and love - and the things you so desire! Love to all
Let the debates continue!

WelcomeFALL

2008-09-21T06:41:00.000-07:00

SAY GOOD-BYE TO SUMMER
It’s a beautiful foggy Sunday – and I sit here amazed at how little I have learned in these many years that I have walked the earth.

My husband is being medicated for things he doesn’t experience and not for things that he does experience. When we see the doctors I get tired of the feeling they think I am only “blowing smoke” about the situation and that the “wait and see” method they are employing is the best! We did this already and the results were not pretty.

In reading the latest reports about the meds it put new concern into my already concerned mind – reports regarding males taking these drugs were not good – in fact fatal. This puts a whole new urgency on the trip to a new doctor and another opinion. But in the meantime – we need to make it through each day and that means – not leaving him alone because of doctor’s orders- and there is no one with whom I can leave him. After paying the bills and setting up the fall budget I realize we are operating at a loss each month and not in the surplus column – without allowing us savings! This will not get us very far before we are in more trouble! Yes, indeed this whole things sucks! I’m sure there are many others facing this same situation – probably in my own family- and the answers are not as easy as they once seemed. My options include: to get a second job – do another free lance job – do something, anything, to make more money! All those extra jobs have dried up and the free lance is no longer available for an over 60 who hasn’t kept up contacts and is competing against her own former students and/or employees.

How the hell did this happen? My job is one I think I would like if I was there and had another four hours per day, and a little assistance from another person to work on making it happen the way I would like to see it work. The principle was gracious about letting me take him to work for a few days – but drew the line. Himself wanted to take a resume’ and show my principle the many hours he had spent taking classes to work with youth and be certified by local respected organizations that we did while employed with the after-school group. Like “ See, I’m qualified and free! Won’t cost you anything but to let me be here!” I just don’t see it making any difference. The kids enjoyed having him there – as he worked on the media cart I inherited that had no computer (stolen and not being replaced) thrown into a closet with little or no instruction for it’s use or operation. Like an old SRA kit that use to fill the closets of schools – they were individualized reading kits that teachers used to allow students to work independently at their own pace – as a student I went through those things like ice cream. As an adult I saw many a dusty case of them in the back of closets at schools. This media cart is like those kits because it is already outdated and yet I want to use it in the room. Even has another teacher graciously offered to bring in an old laptop to try and make it work.

I put myself into God’s Hands and then decide He isn’t moving fast enough for me and have to take it back so that I can worry and have more work to do than I already am able to do! I don’t want that! Yesterday we searched the house for missing banking items – we found them after making other arrangements and then having to cancel those arrangements and realize we just needed more time to keep looking. It has been like that a lot! (Was three hours too soon to give up? Apparently!)

Last week himself was in school with me on Monday and Tuesday. Wednesday his friend came over and they worked on purchasing parts for a short wave radio antenna and possible renewal of his lapsed license. At the end of the day he was tired from waking at 4:30 a.m. for three days, so he could be dressed and have breakfast and he ready before I left for work-or to accompany me. The day his friend was here he worked hard to stay awake and participate and keep up – despite the fatigue from the meds and lack of sleep. Thursday he was again with a person for whom he cares – but he gets bossed around by, who finds it hard to accept that himself can’t be as sharp as he once was – or that he really doesn’t know passwords or care about them for phones and emails and such! That just hasn’t been as important- but it seems to set off alarms for this other person! He needs to call other relatives and talk about the “lack of” he sees and not the progress from the immobile man who was so drugged he couldn’t move or speak!

I want him back as much as anyone – but I am willing to allow his body and mind to heal in their own time. This “performance anxiety” which he now exhibits for these kind people who feel the need to boss him around for his own good wears away at him. When he tells he about the events of the day I want to cry – because he is complacent with them for fear they will leave him alone – truly a universal issue with people who are ill, frail and/or elderly. Being treated as one thinks they should be and not listening to the person for who they are or what they need. It is easier to apply our own principles and ways of doing things and not allow for change or differences that may take more time.

Friday I awoke and was getting ready and realized I couldn’t leave him alone – even though he has said he would be OK! I didn’t know if he would be OK. So I called in sick again. He slept until 9:00 and then ate and was up for awhile and then he went back to sleep again for about two more hours – then lunch and more pills and up for a few hours and then a nap! It’s like he needs sleep and more sleep and he feels OK to sleep while I am here! The nights are hard – the pill makes him so groggy that he suffers from incontinence - something that caused a lot of linens being changed - but depends take care of that partially – (Another condition he never experienced before this new drug!) He also sweats through his clothes – so much so that we have to change him half way through the night and give him a clean, dry sheet as well! (Thyroid problem that was not addressed?) So we are up at least four times a night and then after about 4:30 he sleeps for about four or five hours – but that doesn’t work if he has to be up and doing things! So this weekend he has slept and taken it easy- something that hasn’t really happened until now!

We went to dinner Thursday with friends and had a great time. He ordered his meal, carried on with the conversation at the table and made promises about sharing a tape that he remembered that next day. He was relaxed and enjoyed himself. On Friday when the youngest called to check on him, he conversed about politics and the issues of the day and seemed quite conversant as I ran around doing laundry and cleaning for the half hour he was on the phone. After he hung up he told me that the kid told him that the other one always “bosses everyone – that’s just his style – and don’t take it personally!” I found it interesting that he is so open and honest about himself and his feelings and trying to make things comfortable for those around him – just as he always did!

The fog has burned off! I have no solution for tomorrow! Tuesday I will take another day off as I did on Friday, to take him for the visit to a new neurologist! I put it back in God’s Hands! If I need to take the time off I will – but I know that I am not making points at work! But until we know whether or not there is a chance things will change, get better, or not – making a decision is premature. Now, it doesn’t mean we haven’t looked into things and know we need more money or time – both commodities that seem to be scarce in our bankbooks of life! We will make other visits to where we can check out the help available on Tuesday as well!

For now I will try meditation – if for no other reason that to center myself.
May your challenges further your journey by allowing you the grace to meet them head on with your head held high!

Peace, Love and Hope to all!

P.S. Happy Birthday to all the Virgos – You are great people and we love you! Hope the health problems are minor and manageable!

Bye

2008-08-21T11:32:00.000-07:00

To a Prince among men!

I miss you and your gentle soul and spirit -
your smile will linger in my memory
long after your face has faded from my sight!

If I was a poet - I'd write you a poem
If I was a singer - I sing you the truest notes ever heard
If I was an artist - I'd make a memorial that would capture your spirit

But I am your sister
and I just miss my Big Brother who kept me close when I was afraid.

Who challenged me to be more than I ever thought I could be.

The guy who made a contortionist moan as he twisted to fix a pipe
or mend a broken heart.

The one who always called me "kid" and I never minded.

The one who took me on a lot of firsts -
First streetcar ride
First tornado ride
First on the handlebars of his bike ride
First in his new car ride
First to drive his new car ride
And added to my firsts up until the end of his life.

The big brother who showed me that isolation and pain were only momentary
And love of God, self and family are the greatest gifts one can possess.
The peacemaker who reached out from death to try to unite his family.

You are sorely missed - but we are consoled by knowing that you are finally at peace!

Thanks for helping me find the strength to go on!
Here's looking at you!

2008-08-18T05:23:00.000-07:00

I've Got The Blues

I'm really going to miss you Big Brother! Enjoy the new foursome!

Love -

2008-08-12T07:02:00.000-07:00

15 minutes! It seems that life sometimes comes in fifteen-minute segments – when in reality it is like the motion pictures – one frame at a time, and only gives you the sense of motion and movement. The NOW! This minute, when there is the droning of Al Roker as he introduces Melissa – Nashville Star – in Beijing – the sound of the clothes as they move slowly in the washer and the birds outside twittering as if there was something other than car sounds to disturb their peace and quiet, and I sit and am aware of the sound the keys make as I hit them – not tap – but hit! That tells me to slow down – to take a deep breath and to let it all go! Better – enjoy – let the muscles relax and the pain recede and allow your breathing to return to normal – there is no race- there is only now – the now as each drop hits the washtub and splashes as it joins the eddy that takes it down the drain and into the pipes far below. The Now that says – you are really OK!

The Now that tells you “life sometimes leaves you feeling wasted and discarded" – but that you have the power to make it different! You have the power in the moment of now to be more – or less – or nothing! You have the power and the choice to condemn or approve your actions and allow yourself comfort or keep yourself in turmoil and fighting within and without. The Now that says “it really is OK” and “it really will be OK!” And the knowledge that your believing is real and not merely a fantasy to keep your spirits high and your metal activity in idle.

The throaty gurgle of the water as it moves down the drain before the machine once again starts with clean rinse water to move into a new cycle again – reminds me that my now is almost over! I must go on with my day! I must – why do I use the word MUST! Is it so ingrained in me that I use it without even thinking of it? – Yes – that is true. I look at a lot of my actions as MUSTS and not WANTS – Ah Ha!

Now – in this moment – I want to go and pick up my husband from swimming exercise and spent the day getting some things completed. I want to enjoy the moment of NOW! Off with the noise of the TV! Listen to the squawk of a bird as it circles before landing in the tree – Take another deep breath! Let the tapping stop and we are done!

LUCKY

2008-08-09T07:11:00.000-07:00

August 8, 2008

It’s a political picnic – the Mayor of Detroit spent the night in jail and you might liken it to jailing Jesus – somehow I don’t think it has quite the same tone to it – but the protestors are sure that injustice has once again been brought against a man because of the color of his skin. It doesn’t matter that he has flaunted his disrespectful actions toward the court showing him as arrogant and uncaring for the need to follow the law. Ignore the fact that some people have suffered at his hands because they did not fall into line with his plans and ideas – which according to recent reports seeded the pockets of people closest to him. There seems to be a lot of money earmarked for the citizens of the city that has only lined the pockets of a few who are also his relatives, or so the allegations carried on the airwaves would have you believe.

Elsewhere in China- the Olympics are about to start on the luckiest day of the year! Luck for whom is not certain at this point in time. It would seem those who have been after the Mayor are now sitting smugly and taking great delight in the newest dilemma that has befallen the city. A men who addressed the TV audience as Citizens – and Residents – and not people – with his deep bass tones ringing with uncertainty and a tinge of fear as he stumbled over his prepared speech made me recoil with thoughts of Big Brother becoming a reality. The Mayoral delegate while the original is cooling in a cell.

We sit here at Belle Tire – the cost of tires is rising because of the cost of petroleum continues to make the news- the discounts that used to be offered are presently rescinded and only a $20 off coupon for an entire set of tires is taken. “We are all suffering,” says the guy at the desk – with a waiting room filled with people and parking area lined with vehicles- their business is not at a low. So we sit while we get new tires – and then set up a time for new brakes and a tune-up so that the car will ride better and more efficiently with the cost of petroleum balancing back and forth between all time highs. There will be no new car in the next few months and we must still get around.

We have an appointment with the ophthalmologist on Monday to check on his eyes – he is complaining about the surgery not being done well! If that is really true I don’t know how to make it better … I was hoping that with both eyes repaired- no more cataracts and his lids fixed so that he can see better he would have less delusions or not see or imagine or tune into or whatever the phrase should be. He tries to convince me that indeed I am wrong and he is right and then we don’t get anywhere fast. So I step back and try to remain calm – not always an easy task- and move on to something else – like his ears and getting him hearing aids – though I’m not sure he will like those either! He is very picky about things and their effect and his seeing things to pick at on the floor and chairs and everywhere. Getting him to pay attention to something else demands being in an area that is so lit up that I am almost blinded by the light and yet, he is comfortable. That is not good.

His ability to smell had also returned - things that he hadn’t noticed are now topics of conversation – like the lotion I have put on everyday for years – he finds it sweet smelling and he likes it – I think somewhere in his brain he remembers it and it makes him feel good.

He has gone through so many physical changes that I sometimes am amazed at where we really are and have to ask myself “how did we get here” from when people spoke around and over him.

His movements are like a dancer who is looking to find the balance before taking his final pose. He is always in the moment before landing and looks like he will fall as he sometimes flails his arms and gyrates his hips to move from one space to the next. It sometimes looks as if he is throwing himself into the next spot. His hand does a lot more movement than before and he gestures to keep his balance.

He goes through the paper and then organizes and reorganizes all the sheets several times before finally choosing a section to read. Sometimes he forgets he is looking for something and puts the paper aside with it all nicely folded. He works very hard at all of this!

My concentration has hit the shitter and I’ve allowed myself to be distracted by the TV and the hope that the new tires will be on the vehicle and we can move from here to the next spot – maybe to return the broken microphone to Apple Computer – see if they have another one or not!

Signing off because there is nothing more to write and the computer is running out of energy!

2008-08-01T09:38:00.000-07:00

Sandwich Generation - Is that To Go?

It seems impossible that I should be a caretaker - isn't that something that happens when you are retired and old and have nothing else to keep you busy?

Sandwich generation - like peanut butter and jelly - No, I want to be a BLT sandwich - with a nice heaping of mayo to hold it together on a good toasted bread. A little fat to keep it together! But I want some avocado and sprouts added to that sandwich as a hint that I've changed from the food patterns burned into my taste buds over 60 years ago. All that stuff that they say is BAD FOR YOU!

The proverbial THEY! Where do they live? How do they make a living and what do they care what I eat? Aren't they as busy as I am with each day? Do they have time to sit and just think of things that will make others crazy? "There will be no more sugar! We will only allow substitutes that cause cancer and provide people with a sense of doing something good for them and lure them into over using the stuff because we don't tell them it's BAD - but that SUGAR is BAD! " (Isn't it that too much of anything is bad for you? How can overindulgence of a substitute anything be GOOD?)

Confuse them and make them crazy! That's how THEY keep you off balance and wondering what the hell is happening!

Who creates these monikers that are thrown around like the stamp of approval when speaking of these matters? I'm looking for them and I'm taking names!

This is minimal frustration - names and people and categories - major frustration is living day to day with someone whom you love more than life itself and who is changing as quickly as you adjust to the changes. Frustration is being unable to stop the changes long enough to catch up and afraid that he will leave before you get there and you will only have a ghost to kiss goodbye!

Our parents were pretty independent people - but when they needed help at the end - we tried to be there for them. My husband made himself guardian of his own mother because she needed someone to handle her affairs. She was so relieved that we had done that - taken away the responsibility of her having to take care of her daily things - fighting the creditors paying the bills - talking with the neighbors - she was so relieved that she died within two months. She didn't have to worry anymore. She had permission to stop caring about all the crap that made her crazy with worry each day. She was relieved that her eldest had taken these worried away from her and said, "I'll take care of you, Mom!"

My parents needed help - but my siblings - who lived at and kept a distance didn't see or understand that. My mother was the parent whom you could phone-in to and check on things. She lied easily on the phone to make sure you didn't worry about her or dad - that was what was expected in her mind. The parent does not worry the child - no matter how old they are! The phone-ins were reassured and they in turn made promises to visit when things got a little slower or for the holidays and wished them well. Mom would pass on stories about siblings and grandchildren from one to the next. It was like a telegraphing of info without the need to go to Western Union. Just call Mom and she'll tell you how everyone else in the family is doing. She keeps track of them and their comings and goings - not sharing the secrets that she promised to keep hidden- but urging some kindness or acceptance when she could toward a sibling's current condition or situation. Even though she traveled very little in her lifetime- she was always in spirit with one or more of her kids of grandkids - somewhere in the great world seeing things and having adventures.

She was also good about making each of her kids and grandchildren feel as if they were the only one who understood her - or that she understood them completely. She took phone calls that lasted for hours and came at the most ungodly hours from these desperate grown children looking for a connection. an answer, someone to tell them they were loved and important. She understood their need to be loved!

My dad was the opposite when it came to the electronic device and hated to use the phone for friendly conversation or any type of communication. He was a face-to-face person. Wanted to read the expression on the other person, see whom he was addressing, be able to give them a bear hug that lifted them two feet off the ground and made them feel the overwhelming power of his body and love. He was my protector -made me feel safe and yet filled with the inner ability to handle the world on an evenhanded basis. He was the levelheaded personality to the fiery passion of his "Little Passion Flower" his endearing nickname for the woman he loved and married after only a short two weeks of courting.

Dad loved my mom, golf, each of us and people, especially women- God was also in there - but he had a falling out with Him and his representatives and wasn't as enthusiastic as he had once been. He worked many jobs to take care of a large family and taught each of us personal responsibility by showing us how to take care of things - handling people, settling a situation peacefully, loving your neighbor, getting a job, buying a car, saving money, stretching a penny and getting an education. He covered the tangible and intangible with his gentle ways and persuasive oratory. When our parents asked any of us to do something - we knew that they would do it if they could and they would not put us in harm's way - but might ask us to stretch to meet a new challenge. Nine times out of ten we responded in the affirmative without hesitation.

That was why when they were in trouble I would have moved heaven and earth to assist them to a better place. We did - but it wasn't enough and that was a very hard lesson- sometimes it is not enough! Sometimes you have to know that there is nothing you can do - "They also serve whom only stand and wait!" Impossible to accept when you are used to ramming around and "making things happen" - unaware how little the ramming does and that acceptance might get you there with a little less drama and emotional outburst! And also allow you to live a little longer and more peacefully!

Which brings me back to now! Now - my husband - the most remarkable man I had met - is somehow disappearing inside a body that won't respond to his legitimate requests. Pills to alleviate his random movements create people and things that haunt his vision and create the scent of fear in the air as he slowly slips from my reality into one that doesn't allow what I think passes as logic to live or enter. He gets lost in some strange place where people are out to hurt him and myself and he must protect us at all costs. Sometimes to the detriment of my arms and soul as they get bruised in the process of being removed to a safer area. So I try to get the medical professionals to make a better guess at what can be adjusted or changed - we look for better activities to keep him focused on things other than scary phantoms that live under pillows and in darkened corners. I begin to understand the need for older people to "light up the room" it makes the shadows diminish into only the corners of the room and not roam close to where we are sitting. The change happens so quickly and without warning. One minute we are "supposedly fine" and the next we are in another dimension and I am arguing about things that I can't see but I can smell the bodily change that have taken place in him as he now oozes some sort of sick sweet smell that mixes with a musky rotten odor like - decaying food -and I'm appalled at the smell and my inability to reach inside and grab the man I love and drag him back to the surface. Sometimes he gets so lost I am the enemy and he yells at me and tells me I am the problem. Sometimes I feel that way too.

We visited with my brother who is dying from pancreatic cancer. He exhibited the same emotional outburst that I have seen so frequently from my soul mate. It was sad but I understood and spoke calmly with him and reassured him as I do my spouse when he gets into one of these areas of fear and anger. I question why this happens. I get no answers People blame aging - medications - strokes which alter the brain and create voids where once there was something to hold things together. It makes me wonder about how close we all are to falling into the abyss that is filled with fearsome creatures that will not allow us passage to the peaceful side. I wonder if there are answers that need to be addressed that are ignored because too many people exhibit the symptoms and therefore it has become an acceptable behavior - rather than this is something that is out of the norm and can be changed with ---? Something - anything! Patience is something that some days comes in small doses if you aren't sleeping, eating or getting some relief from the pressure of care giving! Even the name makes me nervous! I killed plants and now I'm suppose to take care of a person who may be more resilient in some ways than that ivy - but doesn't have a leaf I can re-root and repot and start over and get the same man again.

We watched the movie Patch Adams on cable that caused much laughter and laughed and talked about the need for laughter as medicine and how we believed in the efficacies of its power. Robin Williams, as were many of the comedians we have enjoyed over the many years, was a ray of sunshine in a dark moment. A reminder that you can't "hide your light under a basket" but must let it “shine, shine, shine”! I once was in the play Godspell and the melody for those songs often hits me like a slap of reality and makes me sit up and pay attention - Like - "you better learn your lessons well - there'll be a quiz at your ascension!" I always hated quizzes - especially pop quizzes and I'm an educator!

So we used some laughter on our visit - Is that taking away from the seriousness of the situation? My other sister sat and cried with my brother! I can't do it! Some tears, yes, but I can't sit and belittle all the things he has done and the moments we have shared of happiness and sadness over the many years he has been my big brother. He was the one who took care of me - even when he dumped me at his girlfriend's house so he could go play ball or whatever boys do when they are 12. I have been lucky to see and spend time with him over the years and not really ever have lost total contact with him. Even when he went off to find the princess in the woods - a weekend of drinking and not hunting deer - that is a state tradition for all real men! Right! @

He thinks he has lived too long - that he should be gone already - I reminded him that apparently it wasn't the plan because he is still here! He is the oldest and it will be hard to let him go - we let our parents go - what seems like just yesterday - though mom passed eight years ago going to join dad once again. He is upset because he didn't write letters to each of his kids saying the things he has in his heart for them. He chides himself for waiting the 90 days it has taken him to get to where he can't write and can barely speak without suffering from aphasia either from the cancer or something else that has affected him. I try to tell him he has had time to be with each of them - something not everyone has the opportunity to do. They know he loved them. They know he cares about them. He still feels like he has disappointed - why should he feel that? He has done his best, always! It may not be what others anticipated or expected - but it was what he could do at the time! He is a good and decent man who loves and cares for others - always trying to make them comfortable and at ease. Loves to tell jokes and stories and be up on the latest news and things happening. A poet without a poem, a singer without one song to claim- a son, brother, husband and father who is all that one could ask for! He finds the waiting the hardest - as we all do! Patience again - for the caregiver and the person needing care! Hospice has come in and helped to alleviate a lot of the everyday crap that a caregiver is faced with - dealing with hospital equipment, medication changes and the hundred and one personal needs that become someone else's responsibility.

So generation - Boomer generation, Generation X and Baby Hueys! My Baby Hueys are sick and in physical positions that are not welcome! They are fighting with the same energy they always have used to move mountains- but not every day is as successful in moving the new mountains - some of these are immovable forces! But we still believe in miracles.

Being a caregiver is something that no one really auditions for - or applies to be! If you care about another and see that they need something that you might be able to give - you are there and doing whatever is necessary. Knowing when to let others help is something that the caregiver loses sight of. Stress can sometimes make the brain become like oatmeal that has too much milk and just disintegrates into the liquid and no longer has substance. Knowing when to ask is sometimes put off - because there is a fear of - well- who really knows - a fear of not being a good person- not being seen as someone who loves the patient - someone who failed to meet an unrealistic ideal. But in the heart of the person who is conflicted there is little reason and lots of rationalization and prayers for guidance.

So when I awake - I thank God and then listen for the breathing next to me! I know we have another chance to enjoy one another's company and maybe make a difference in changing the complexion of our home - eliminating the clutter - or seeing something new - discussing something old from a new angle - caring about family and friends and hopefully getting through the day with little frustration as possible.

Today is my husband's favorite day of the week - Friday and we will do things that we like to do! Check to see if people are available for lunch, plan a haircut and a trip to the spa for a manni and pedi to make the fingers and toes work better!

I am part of the Sandwich Generation and I am On the Go - enjoying the last days of summer before I return to teaching and spending time locked up in a building where educational activities crash head-on with survival skills of students who know the streets better than they know the multiplication tables. One day at a time! One smile to help through the tears that fail to fall - I believe in a higher power than myself and will be what I need to be for those around me! They will do the same for me - of this I am sure!

I am not a body. I am free.
For I am still as God created me.

I place the future in the Hands of God.
Excerpted from A Return to Love: Reflections on the Principles of A Course in Miracles