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 180ยบ 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!
