The Art of Caregiving

We’re getting a weekend “off,” effective this evening, from being caregivers.

I feel guilty for being so, well, kind of psyched about this, but I’m sure a lot of you know what I’m talking about. Kevin had mentioned our weekend to a coworker of his, a woman with a fairly new infant, and she said, “Oh, yeah…I get it. We went to visit my parents not too long ago, and on a Friday night, my husband and I spent, like, four hours in CVS. It felt like such a luxury.”

And when Kevin told me that, I said, “Oh, my GOD. That sounds AMAZING.

In many ways, caring for someone with Alzheimer’s is like caring for a small child. The person is utterly dependent upon you for just about everything, you have to make plans practically months in advance to just be able to go to a movie, and if you turn your back for even an instant, something is going to get broken/lost/drenched/flushed down the toilet.

The difference, of course, is that in most cases, a small child is going to eventually become more independent and able to follow directions. That’s not the case with a 73-year-old woman in the more advanced stages of Alzheimer’s. “Don’t use your sleeve to mop up water on the counter” means nothing to her. She is unable, more and more, to create NEW memories, so she will pretty much just continue to “clean” with her sleeves, and we will just continue to hand her paper towels, which she’ll fold up neatly and store in the dishwasher.

This morning, my mother-in-law was up and at ‘em much earlier than usual, and so when we went upstairs to give her breakfast, she’d already created enough minor chaos to delay our getting to work. We’ve made it so she can’t turn on the stove or stop up her bathroom sink. We’re relatively certain she won’t burn down the house, or flood our basement (again). But she can still pull all of her socks and bras out of her bureau and scatter them throughout the house in fairly short order. Why? Don’t ask. We don’t. I’m sure there’s a logic to it, but I’m frequently just too tired to crack the code there.

But there is a code. I’m certain of it. As her language skills continue to decline, she finds other ways of expressing herself.

A couple of years ago, when she started losing the ability to shop for herself, or find the words for what she needed, she relied on something that she still knew how to do, and that was to draw pictures. And so her shopping lists for us became little works of art:

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She’s since lost that ability (her home health aides tell us what she’s getting low on). But she now leaves what I refer to as her “art bombs” all over the house. They’re really fascinating.

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In a strange way, it’s both comforting and life-affirming to know that art can still happen, everywhere, to anyone, even accidentally. She can’t remember how to sign her name, but she can do this. She can communicate, in her way, what is happening to her brain. It’s shrinking. I cannot even begin to fathom what this is like, and yet here she is, telling me.

These are things that belong together. I wish I could tell you why. They’re all small. They all remind me of something. They look nice here. I’ll keep them here for a bit until I decide they need to go somewhere else. But look at them, please. Notice them. Pay attention. Be in the moment with me.

The biggest challenge for me anyway, regardless of my current caregiver status, is staying in the moment. Trying not to spiral off into a grim future, or hang onto something that’s done and gone. The present is intensely uncomfortable for me. Maybe that’s an alcoholic thing. Nothing, save early sobriety, has forced me into this state of accepting the present moment for what it is, more than caring for someone with this disease.

I’d like to think that this is the greatest “reward” for living in this house, keeping her here with us for as long as she’s able to be here. Too, I am reminded that this is what it means to be committed to someone. That whole “for better or for worse” thing. I can’t say “I didn’t sign up for THIS,” because the fact is that I DID. And that’s okay. It’s made our marriage stronger, whereas others have crumbled under this kind of day-to-day pressure. Another “reward,” although I don’t really like to think in those terms. I can name at least a half dozen friends who are going through the exact same thing. What I’m doing? Not so unusual. I don’t deserve some kind of karmic prize for this when it’s all said and done, and it’s not particularly helpful to me to expect one.

I can only hope that I’ll get to spend a few hours in CVS. Because that still sounds AMAZING.

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