Communion Of Dreams


Unbelievable.
July 9, 2007, 3:51 pm
Filed under: Alzheimer's, General Musings, Health

Here’s a small insight into caring for someone with Alzheimer’s/Dementia: any change to routine will have repercussions for a day or more.

As mentioned previously, I attended the Heinlein Centennial this past weekend, while my wife was performing with the North American Welsh Choir. My wife’s sister made arrangements to come and care for my mother-in-law while we were to be gone. This is essentially what we have to do whenever we want to both be gone anywhere, and logistically it is problematic: my sister-in-law not only has her own life, but she lives on the west coast and has to fly in to be here. Given that she’s a couple hours away from an airport on her end, and we’re effectively the same here, it’s more than a little bit of a hassle.

But even beyond that, our being gone presents other difficulties. Specifically, it throws my mother-in-law ‘off’, compounding the problems presented by her disease. My sister-in-law is good about rolling with this over a short time period, but then it happens again when we get home – which tends to negate the psychological benefits of being able to get away for a short period of time. An example from this afternoon: My mother-in-law had been napping after lunch, as is her custom. We have hospital rails on the sides of her bed, and a simple ‘web’ of 1″ nylon straps over the top, from railing to railing, to prevent her from getting out of bed. But she only sometimes remembers that she needs help getting out of bed, let alone standing or moving. As I told a friend in an email a bit ago:

*sigh* Been unbelievable this afternoon.

About 2:45 I heard her moving around. Not usually a big deal, since she will shift position. But then I heard something concerning, so went to investigate.

She had managed to slide her legs up to mid-thigh out between the bars (which are horizontal), dangling them over the side of the bed. She’d then gotten tangled up in the webbing, trying to sit up. I asked her why she didn’t just call if she wanted to get up, and I got a snarly response about her not needing any help, et cetera.

After sitting there and letting her try to untangle herself and get her legs back in bed, I got her sorted out. She was still snarly, said that I just wanted to keep her in bed for no reason, that she could do just fine, thank you very much, if I’d get ‘that stuff’ out of the way. Fine. I removed the webbing, put down the rail. Some minutes later, she finally admitted that yeah, maybe she did need some help to get up and onto the potty.

She’s suitably chagrined now. That *might* last the rest of the day. Or maybe not.

That’s just one example. The whole thing, from start to finish, took over an hour. And through it I had to explain repeatedly where she was, that her mother wasn’t here, who I was, et cetera. Some of this is ‘normal’ (perhaps I should say ‘typical’) behaviour – she’ll fuss with the webbing or some such, rather than calling for help. But this is the first time that she’s tried to slide between the bars of the railing, and it is rare for her to be hostile like that for any length of time. We’ve seen other examples of behaviour that are somewhat extreme as well. I can’t prove it, but I’m certain that this is all fallout from the change first of our being gone and my sister-in-law being here, and then her being gone and my wife and I being here.

Frustrating, particularly in that it disrupts my ability to think and write further, meaning some of the stuff I wanted to get done today (such as writing some additional posts about the Centennial) isn’t going to get done. So it goes.

Jim Downey


2 Comments so far
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I’m afraid I started reading this in the middle, and thought you were talking about a child. Them after I was done reading a bit about the Heinlein Centennial I went back and started again, and realized you were talking about an adult with Alzheimer’s.

I’ve dealt with this a bit in family and with friend’s family, so you have my sympathies. The idea of losing my mind scares me more than the idea of cancer…

I like your blog, will have to bookmark and come back to it.

Ad Astra!

Comment by Dana Kincaid

Ad Astra, indeed!

Sorry, for some reason I didn’t get notice that you’d left a comment, so forgive my delay in responding.

There are a lot of things I’d rather have happen than suffer dementia, I’ll certainly agree with that. But we’re lucky that my mother-in-law still has a good nature about her, rather than being angry and frightened all the time. Not sure if it is indication that we’re doing something right, or what.

Jim Downey

Comment by Communion of Dreams




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