Dad's alertness is improved, but some of the behaviors are also back, such as getting up every fifteen minutes at night and trying to get out of bed. Some nights he sleeps all night and some nights he's unable to sleep. I noticed on the daddycam all week that he likes to get away from the living room where everyone else is sitting. He goes into various bathrooms and gets stuck in there. Last week I timed the situation to see how long it would take someone to go looking for him. It was about 40 minutes. Since they put every one's meds up in a safe place, I don't guess there's anything too dangerous about sitting in a wheelchair in a dark bathroom for an hour (checking out nail polish and hair spray?)
I went to see him today. He's obsessive about taking off his shoes and his socks and messing with his feet. He cannot put socks and shoes back on. So I brought over a pecan pie, and sat and had a piece with him. He has regained his ability to feed himself with utensils, although halfway through he prefers to eat it with his fingers. I think with the dementia comes an inability to do what we would normally consider super easy tasks. When I asked him to put his socks on so we could go outside with the wheelchair, he got one sock on one of the footrest of the wheelchair, and when I pointed out that he needed to put the sock on his foot he said "I DID!" From the Alzheimer's literature I've been reading, these tasks are more complex than we would think. Since the neurons are no longer firing, a lot of these skills are gone. And it's not reversible. We might have slowed the progress down with medication, but the disease will march on. So I took him on the "walk" without socks. I've got to pick my battles, and "socks on" is not a big deal. Nor am I touching those feet. Sorry.
So we got outside and into the empty residential street in front of the house. I felt that since he no longer gets any physical therapy (I'll get back to that in a minute) it would be to his advantage to get some cardio by rolling himself in the wheelchair down the street. It would be nice to see him move independently. So I tried to encourage him to come toward me in the street. Unfortunately, the street was a little bit humped in the center line, so he kept rolling to the curb. Nor could he compensate by using both arms, or one more than the other to turn. The more I tried to explain it, the angrier he became. So I moved to the other side of the cul de sac and tried again on a more level surface. He wouldn't let go of the brake on the left side, and when I told him to put his hand on the wheel rather than the brake he said he was. By now he was fuming and went on about being old and not able to do anything (and therefore I was being unreasonable to ask it.) I should have dropped it long before this point, but I wanted him to get the hang of this. But it wasn't meant to be. He was so irate (as was I) that he was completely mishandling the chair (refusing to let go of the brake on one side while rolling with the other side) and I noticed he was bleeding. His arms are frequently covered with sores from his thin skin and aspirin therapy, and one of the scabs had been scraped off. I gave up at this point and took him back to the house saying, "I can't help you." Then I went home. My heart was in the right place, but there is no good manual on how to handle such a lose-lose situation. He loses because he gets no exercise and therefore little oxygen to the brain. I lose because trying to be "helpful" never goes unpunished in our situation. I gather the answer is to let him go at his own pace. Which is stopped.
I spoke with one of my watercolor classmates who just had a hip replacement. I told him about Dad's hip fracture and going to the hospital this summer. I told him how he did poorly in rehab because his mind was so far gone that he couldn't understand what was happening and fought the staff every step of the way. My buddy said that he had to work his ass off in rehab, and that if he hadn't had the balance or the wherewithal to give it 110%, he would not have been able to recover. The hip recovery requires a willingness to suffer in pain in order to get back on your feet for hours a day. I knew as he was telling me this Dad never had a chance. The only thing going for him was that it was a break and not a replacement. Without the ability to withstand ongoing pain, or balance, or follow instructions, what could possibly go right? The other thing working against him was his own problem with authority. If someone is telling him what to do, even if it's life saving information, he will refuse. He sees it as somehow "losing" to go along with someone else's instructions. This has always been part of his make-up.
Nowhere was it more obvious than on the first fall this spring. Dad had fallen in the living room of his apartment. Back then he was not yet in assisted living. He crawled to the bedroom and lay on the floor for 24 hours next to the wall from which hung the pull cord, which he would need to use to summon help. No one knows whether he just didn't want to use the cord (help is for wimps) or whether he didn't know what it was for, or even more probable, never registered that there was a cord. I know one thing, in his present house, we've talked about the cord repeatedly when putting him to bed, and he just laughs it off like that's the last thing he'd use. At night he sets off the alarm to get out of bed every fifteen minutes and has never summoned the nurse with the pull cord.
One thing pointed out in the Alzheimer's support group meetings is that, if someone has a personality characteristic and they develop dementia, it becomes exaggerated. His characteristic is defiance, and I just have to accept it and not let it get to me. Watching someone kill themselves isn't fun (especially if I'm kind of a control freak anyway), but I can't let him drag me down with him. The answer is pacing and just blowing off things like trying to improve his health. "Acceptance is the key to all my problems today" -Alcoholics Anonymous
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