On matters too serious for a pithy title.

My mother-in-law has Alzheimer’s.

I used to joke about Alzheimer’s…until I started to care for someone with Alzheimer’s. You know what I mean. Forgot my keys, can’t remember the name of some actor… “Oh, I’m having an Alzheimer’s Moment.” “I’m getting the Alzheimer’s.” Now…no. Just NO. If you forget your keys, it’s because you’re forgetful. Distracted. Maybe a bit of a dumbass, if that’s your bag. BUT YOU DON’T HAVE ALZHEIMER’S.

Please don’t joke around about it; you never know who is dealing with this.

Right now, we still have mostly “good” days. She is still able to pretty much handle her day-to-day stuff. She cleans her house, feeds her cat, walks to the mailbox on the corner, dresses herself. But she no longer drives; this was, thankfully, one battle we did not have to fight. She happily surrendered her driving privileges a few months back. We take her where she needs to go.

Our biggest challenges, right now, are in trying to figure out what she’s trying to say. Lately there has been a profound loss of vocabulary in addition to short-term memory. On the occasions when she comes downstairs to ask us something – when she remembers what it is she wanted to ask us – she can’t put it into sentences that make sense. Often, she ends up using the word closest to what she’s trying to say. For example, “cafeteria” becomes “dish.”

It’s sort of like reading poetry, navigating these sentences. Or solving a riddle. We took her to the cemetery on Memorial Day, and en route she announced, “I forgot my mouth.” We figured out fairly quickly that she meant “lipstick.”

Other things are not as easily arrived at. Grocery shopping is almost always an adventure in interpretation. “I want one of those things…you know…those things that the men like to eat. And women too. Men and women like to eat it.” Turns out this meant a small rotisserie chicken. Don’t ask me how we eventually got to that understanding.

What helps – for the time being, anyway – is to have her draw her needs. For while the language is slowly leaving her, she can draw – with amazing attention to detail – her shopping list.

She remembers the package design, the logo, even the words on the package, even if she doesn’t remember what the words actually mean. Everything is visual. For Mother’s Day, we gave her a fairly UN-flowery, utilitarian series of gifts: a package of colored pencils, erasers, blank notebooks. And a plastic bin to put them in. Because organization is still very important to her.

So she draws what she needs. A few days ago she came down with paper and a pen and drew a roll of paper towels. And so we took her to the store and got her paper towels.

I tell people about this, and they’re fascinated. And it IS fascinating, when it’s not so goddamn sad. This is a woman who always had it together, never had to ask for help, knew her finances to the penny, raised two boys as a single mother. As recently as a few years ago, she regularly took herself to Italy. She was a faithful reader of my blog, until even the act of turning on her computer became too overwhelming, so she gave it away.

Now, our interactions with her are similar to the way you would deal with a small, docile child. Get her in the car, make sure her seat belt is fastened, listen as she makes her observations, and acknowledge them. “Yes, that house back there was dirty; it caught on fire.” “Oh, I’m not sure why those windowshades are green; maybe the people who live there like that color.” It’s a balancing act, these conversations. It’s important not to infantilize her, or deny her maturity. At the same time, NOT keeping our responses simple and to-the-point invites circular “conversations” that invariably end in frustration and tears.

We are less and less able to give her options, or let her make decisions for herself. Sometimes she remembers that she used to be able to decide, and demands to know what her choices are. When we cave and present these to her, her face falls. “You’ve lost me. I don’t know what any of that means.” And so it goes.

“It’s my brain…this thing in my brain. Everything goes away as soon as I’ve heard it,” she tells me.

“I know. It’s because you have Alzheimer’s, Mom.”

“Yes. That.”

My heart aches for my mother-in-law. It breaks for my husband, his brother, her grandchildren. I feel guilty sometimes, because my own parents are still so sharp and engaged and able to talk knowledgeably about everything, from the political climate to some off-color joke my dad heard to how much they love the new “Sherlock Holmes” series on PBS.

And yet my mother-in-law is no less “in the moment” than they are. She may, in fact, be even more so. And that’s only going to become more and more acute as the days and months go on. The past will continue to get dimmer; we will stop having to remind her that she was once married or that she went to Italy, because it simply won’t matter to her. The future will no longer be of much concern. It’ll all be about today, this particular hour, this very second. It’s admirable. It’s terrifying.

3 thoughts on “On matters too serious for a pithy title.

  1. I was very much drawn in to your piece, very sad & poignant. It was interesting to see the visuals she uses to try to communicate her needs. I really wish a medical breakthrough would come soon so that people no longer get this illness.

  2. Beautiful. And, as David says, heartbreaking. But your insights are so valuable and your sustaining this relationship with her is a beautiful, human thing. She is so fortunate to have you.

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