Tomorrow is 1 year since Charlie went into the nursing home. In some ways it seems only yesterday that his son and I walked him into the facility and in others it seems like years since I have felt his warm body beside me in our bed. The year has been a roller coaster. I know I made the right decision, hard as it was. I couldn't meet his needs here at home. Yes, he has declined but it HAS been a year and he has other problems other than dementia. Right now I think the PSP is more responsible for the decline. He has terrible stiffening of the muscles. His upper body is very stiff and it is very difficult to get him into a sitting position since he doesn't bend in the middle very easily. His legs are still a little more loose but I think that is because he never stops moving them. Even when he is lying down, he pumps his legs as if he were riding a bicycle. He no longer stands for his shower or to be changed. Showers are done in a chair and changing is done in the bed. They are doing physical therapy right now in hopes of lessening the stiffness, at least temporarily. He continues to eat well and is maintaining his weight after losing about 40 pounds after he first went in. I think the most of the weight loss was from the fact that he couldn't feed himself, not even finger food and he had always been a huge snacker. It is hard to tell if he knows anyone as he can't show much reaction. Once in a while I see a little light in his eyes and sometimes i can get him to pucker up and give me a kiss. But he might do that for anyone who asks. Long year. Rough year. And God knows how many more to go.
My bil was stiff like that but his was due to all his joints being shot. When my sister would break down and give him a vicodan he would move much easier and not yell 'd.m, d.m, d.m' which became his favorite word after his stroke. He never swore before that. But I remember how hard it was to move him - he was stiff as a board and dead weight.
They do give him vicodan 3 times a day at the nursing facility because I insist. Even though the disease is causing the stiffness, it has to be painful to be that stiff all the time. The nurses say that he is not quite as restless since they started the vicodan.
I think my husband with FTD is going through the same thing. He yells out in pain each time he is moved. Can no longer bear weight on his own. He has bronchitis, so I thought maybe the fever was causing the pain...now I don't know. It takes a nurse, myself & at least 2 aides to move him from his bed to his recliner....with him yelling the whole time...not easy to take. Oh how I hate this DISEASE!
Kadee, have the doctor prescribe something for pain....think how sore you would be if you were lying around all the time. Their muscles and joints must be so achy. My husband was on a pain patch for years while in the final stages....he was severely contracted and we all knew he must be in pain. He can be put on a therapeutic dose which should make him feel better.