A Million Little Pieces

What dementia takes, and what it leaves behind.

Photo by Raimond Klavins on Unsplash

Four years into Mike’s dementia diagnosis (and almost seven since he was diagnosed with Parkinson’s), I’ve grown accustomed to people questioning whether or not this information is accurate. I don’t try to explain anything anymore. I do not, for instance, say “There are a bunch of different types of dementia, and they all affect the brain in different ways.” Such explanations do no good when you’re talking to a person who’s mostly committed to their own understanding of a subject.

More often than not, that understanding has its roots in someone’s personal experience—perhaps they watched a loved one struggle with dementia. But Mike isn’t struggling in the same way, so how could this be dementia? That question makes some sense. My father lost his memory of me as his daughter before he died, but Mike hasn’t lost his memory of me yet. When I come to pick him up from dementia care each afternoon, he knows who I am. Sometimes he stands up and heads across the room when he sees me waiting at the glass door, ready to go. Sometimes an aide has to bolt for the door and disarm the system before Mike sets off an alarm.

I understand that this doesn’t sound like the behavior of a person with dementia. But I also understand that there will be days when things don’t unfold in this way, when I arrive to pick up Mike and he only nods his head when one of the aides asks Do you remember this lovely lady? And then he allows me to take his hand and lead him out to our car—where he does not remember that he’s supposed to sit down in the passenger seat, despite the fact that I’ve opened the door for him.

I’ve learned, after all these years, that dementia isn’t monolithic. Any list of dementia symptoms you’ll find online includes words like some people and sometimes. And any list of symptoms will, necessarily, be incomplete. There isn’t enough room on any webpage in the universe to list out the millions of pieces it chips from someone’s brain.

For a long time—probably the first full year after Mike’s dementia diagnosis—I was scouring the Internet for a more comprehensive list of symptoms. But I think what I was actually looking for was a case study, a narrative description of someone like my husband. I wanted an example, a model, a point of comparison I could refer to in those moments when I didn’t know whether I was seeing a new dementia symptom or evidence of some new complication caused by a brain that no longer communicates effectively with the rest of the body. I wanted to know what comes next in his story.

I never found what I was looking for, of course. What I discovered was a labyrinth of inconsistencies: what was true for Patient X wasn’t true for Patients Y and Z, despite the fact that they’d all been diagnosed with the same disease. (Even within broad categories of illness, like dementia, there’s so much variation.) And I began to understand that any example—even the one that might be labeled definitive or excellent—wasn’t going to be exactly the same as Mike.

Which actually makes sense, when you think about it. A person who lives in a country where no one eats tacos is not going to lose the taco-eating skill to dementia. (If you’re thinking Wait, what’s the taco-eating skill?, consider this question: How do you eat a taco? If you have an answer to that question, then you possess the taco-eating skill.) An illiterate person is not going to lose the ability to read and write.

Instead, what a dementia patient will lose shows up in direct relation to what that person had to begin with—that catalog of unique little bits and pieces, habits and preferences and skills, that makes each of us precisely who we are.

Mike no longer remembers that he used to have a Diet Coke in his hand pretty much every waking moment—he’s down to one soda per day, doctor’s orders, and I don’t offer that one unless he asks for it specifically. It’s still hard for me to accept that there are days when he doesn’t. It’s even harder not to offer up the thing I know will make him happy. (He never turns down a Diet Coke.)

He also doesn’t remember that, for the most part, he hated casual clothes—he was never a guy who wore sweats or shorts. He’d put on a worn-out pair of khakis (or, on rare occasions, jeans) to mow the yard, but that was as far as he’d go down the casual wear spectrum. And his shirt was always tucked in. He always wore a belt.

These days, everything is casual. I found chinos with an elastic waistband, a compromise of sorts, because they’re easier for him to deal with than the buttons and zippers that pose a challenge for his shaky hands. He regularly marvels out loud at how much he loves these pants, how comfortable they are. He no longer bothers with tucking in his shirt most of the time. He never asks for help with finding his belt, although his new pants have belt loops. I made sure of that before I bought them.

None of this would scream dementia to someone who doesn’t know Mike as well as I have for the last 36 years. But it’s very clear to me that the bits and pieces making up the person I knew to be my husband are disappearing by the day.