On Living with Dementia

I first turned 65 when I was 41. Geezered almost overnight after a viral attack to my brain in 1988, I was soon diagnosed with static dementia, displaying classic multiple cognitive deficits, including memory impairment. Most people who become demented do so over time, fading, their symptoms developing. Mine happened suddenly and didn’t progress. At least, they haven’t for the last 24 years. 

A few months ago, I turned 65 again—this time chronologically—and it’s like I’ve had more than a third of my life to get used to the sorts of declining powers that I’d be likely to face now anyway. I still commit the sorts of mistakes, neurocognitive snafus, that have marked my shattered functioning. Just this week, I put a capsule into the espresso machine, removed the empty cup I’d just placed under the spigot so there was now nothing in which to catch the liquid, pressed the Start button, and watched in bafflement as rich, dark brew spewed over the kitchen counter. This was matched, two days later, by pouring juice into a cereal bowl rather than a glass and watching in wonder as the purple spread more widely than it was supposed to. 

Last night I announced to my wife, Beverly, that I’d numbed the television rather than muted it, and that I would evaporate rather than delete a film we’d just watched on our DVR. Earlier today, by the time I reached for one of the pens and notepads I keep all around our home, I could no longer remember the item I’d wanted to add to our shopping list. The problem was that I allowed myself to think I needed to find the pen and notepad when I should have kept focused on whatever it was I wanted to write down. Unfortunately, all this leads to a life filled with loony babble, because under stress I tend to say out loud what I’m trying to remember as I try to find the pen and paper whose whereabouts I can’t remember. In some ways, it’s comforting—in the sense of making me feel less alone and difficult to be with—that my wife began doing the same sorts of things as she neared 60. 

Something I wrote 15 years ago about living with dementia became a credo for me: since I can’t presume I’ll remember anything, I must live fully in the present. Since I can’t presume I’ll understand anything, I must experience my life without pressing to formulate ideas about it. Since I can’t escape my altered brain and the limits it has imposed, I must be at home with it. And since I can’t presume I’ll master anything I do, I must let go of mastery as a goal and seek harmony instead.

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The Dementia Plague

Floyd Skloot’s books include The Wink of the Zenith: The Shaping of a Writer’s Life and In the Shadow of Memory, an account of the aftermath of his 1988 illness.