Alzheimer's disease · Assisted living · Burnout · Caregiver · Memories

Decision fatigue / June 10, 2007

My mother is much quieter when I visit now. Today being Sunday, we took off for our usual lunch and drive. My sister comes along, as does Jasper the Sheltie (who really doesn’t like going for a ride, surprisingly–he runs and hides when I approach with his harness. This is pretty uncharacteristic for a dog and I’m hoping he grows out of it). Garden Manor has a Sunday afternoon barbeque, and today my mother seemed uncertain about whether she wanted to stay for that. Making even a simple decision is almost impossible for her at this point. A choice between coffee and hot chocolate, for example, is prolonged by her insistence that someone else pick for her. It’s a frustrating development at a time when I want to preserve what little choice she has in her life. At first I would not let her off the hook, but now I’ll just pick what I think she’d prefer. So today I suggested we forego the barbecue and go for a drive.

And this we did. She says next to nothing as we drive, which bothered me at first. I’d question her about her sleep, her meals, her activities, and she’d always answer me with vagueness–”I guess so,” or “I forget.” So I’ve backed off a bit. Every so often I’ll ask her if she’s comfortable or does she want to stop at a store, just to tune her in. I’m getting better at translating her silences–sometimes she’s just pleased to be out and othertimes, like today, she’s unsettled.

Lately she’s seemed like someone walking around with a pebble in her shoe. Always a little “off” but unable to pinpoint why. Constant, low-level discomfort. I don’t know how much this discomfort is turned up when my sister and I are around. I’ve asked the staff how she’s doing and they tell me she’s doing fine. And when I’ve arrived to find her sitting with her card-playing friends, she seems in good spirits and very engaged. She tells us that she does nothing all day, but I know otherwise. The staff photograph many of the social functions and then put the pictures on bulletins boards around the lobby. I originally thought that was a sweet little extra, but now I see that it is probably for the families who can’t get anything out of their loved one. I’ve spotted my mother in a few pictures–eating ice cream or listening to music–so I know that she joins in occasionally.

So I’m thinking that her taciturnity (is there such a word?) might be a little more complex than merely the verbal loss that accompanies Alzheimer’s. She’s been at Garden Manor for a little over five months now, and she seems to be making her own sense of it. On the other hand, I have my own sense of where she “is” and the two don’t often mesh, I think. I operate under the assumption that she remembers how she came to be here and my role in that change. I visit the woman who–I believe–thinks about her old life and wonders why I don’t show up more often. But she’s not that woman, and so I think my assumptions puzzle her.

I’m not saying that I need to map her reality, because I don’t think I can do that. But maybe I can back off and stop trying to fix what isn’t broken.

For example: one subject she invariably raises when I visit is her mother. “How’s Ma?” she asks me. “Where does she live?” “Did you have a fight with her?” “Does she know where I am?” I usually improvise in a very sloppy way, but I think that this is a theme I might have to consider more carefully. Or maybe it’s part of this stage of her adjustment to her new life.

On a personal note, I finally let go of my beautiful 14-year-old collie Lily yesterday. I was hanging on to her, despite her crippling arthritis and doggie dementia. But my poor girl developed a horrible pressure sore, and I knew I couldn’t put her through any more. She’d had a good, long life–and a healthy one, until recently–and her welfare was more important than my need to hang on to the past. I’m less distraught than I was when my boy Dustin died last August. His illness and death were unexpected, but I’ve been considering my Lily’s life for months now. She was a lively and inquisitive collie, so seeing her deteriorate was awful. I think my sadness now is alleviated by relief at being able to release her from her difficulties.

But, oh man, I’m starting to get severe “decision fatigue”…

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