Forgetting and becoming

a reflection on the unknowability of everyone we love

My dad and I were sitting on a big, flat rock at the beach, watching as my big brother—inching towards 50 years old—collected rocks and seashells at a distance. The water would sneak up on him every once in awhile and he’d hop backwards, looking suddenly like the little boy that he was once—lithe and frenetic and full of joy.

My dad smiled and said, “Look at that. He’s gotten so big. I just can’t believe it.”

“Do you remember what he was like as a little boy?” I asked my dad.

I try not to “test” him these days. To be clear, this wasn’t that. I did “test” him more often in the early years of his dementia diagnosis when I was learning whole new schemas for who he was and what he was capable of. I felt like there was no other way for me to wrap my mind around who he was becoming, what he was losing and what he still was, unless I experimented.

These days, I have settled into my new knowing of him—I have a nuanced and textured sense of what does and doesn’t work for him conversationally. It’s hard to explain even to close friends who ask, as it’s not logical. I’ve learned that dementia is a transition that defies logic at every turn—both literally, as your person slowly loses various kinds of logic that once seemed un-losable, but also in terms of the new configuration of who they are and how they perceive the world. My dad can see a car from 75 years ago on a televised Mechum Auction and tell you what kind of engine it has, but he can’t remember that milk goes in a fridge.

In any case he said, “A little. I remember him as a little boy, just a little.”

“He was just like that,” I said, “always moving.”

“Was he?” My dad asked, with a wide-eyed wondering look on his face.

“He was,” I said, and then went back to watching the surfers bob in the waves far beyond the rocks, disappearing in and out of view.

In On Vanishing: Mortality, Dementia, and What It Means to Disappear by Lynn Casteel Harper, she writes:

I began to wonder: why do we–those whom the dementia activist Morris Friedell terms the ‘temporarily able-brained’--need them to vanish? Why are we so eager to view them as disappearing or disappeared? And what possibilities are we precluding, what hard work of the soul are we avoiding, by imposing this distance?

It is hard not to talk or write about my dad’s dementia without falling back on all the ways I have been socialized to language his syndrome—fading, disappearing, dimming. But as Casteel Harper explores, these are not actually dignifying of the full experience of my dad as he is now. He has lost the ability to put the milk in the fridge, indeed, but he hasn’t lost the ability to feel profound empathy, spontaneous delight, and deep love. I’ve watched all three emotions in recent days dance across his face and it has reassured me that the language our society has for those with cognitive decline—see, there it is, decline—is myopic compared to the lived experience.

My dad’s brain is a strange and unknowable place in so many ways. But truth be told, so is my brother’s. He taught himself how to speak Welsh on Duolingo over the last few years, something I never could have done. So is my momma’s. She has drawers full of little scraps she has collected for decades that her brain knew could be art. So is my husband’s. He walks into an Airbnb and immediately starts renovating and redecorating the spot in his mind, something, once again, I would never do. So are my children’s. Stella has no interest in completion; I am addicted to it. Maya can remember the last sentence I read aloud verbatim even if I got interrupted a full five minutes ago during a bedtime story. All of their brains do things mine don’t. All of them move at different speeds, with different priorities, different gifts, different challenges.

After our sweet time together, I texted my brother and said, “I’m so curious about dad’s umwelt.”

Umwelt, as I learned from Ed Yong’s book, An Immense World, is the world as it is experienced by a particular organism. How does the organism that is my dad now, not my dad of 5 or 25 or 50 years ago, experience the world? What language assigns itself, or doesn’t, to the surfer and the wave, the son and the daughter? How cold and confused and in love is he? How heartbroken? Without words to wrap around some of this, I can’t be sure. But even with words to wrap around it—English, Welsh, and otherwise—I am so often so unsure of what those I love are thinking, seeing, forgetting, remembering. That doesn’t mean they’re disappearing. It means they’re only partially perceptible to me.

Maybe people with dementia are unknowable, but not all that much more unknowable than every other person we love who is, as Morris Friedell puts it, is “temporarily able-brained.” The fact that my dad can’t remember that milk goes in the fridge has real consequences. Spoiled milk. A burned out caregiver. Another role relinquished. The fact that he can’t remember my brother’s trademark energy as a boy is a gut punch in certain ways, but in others, it’s a release. He senses my brother’s energy now—no big stories or past layers to cloud his experience. He doesn’t expect anything, in particular, because there are so few particulars left. There are waves of gratitude, guesses at what’s next, a floating, tentative navigation of a world constantly remaking itself, like the edge of the earth next to the unpredictable ocean.

At night my brother poured us both some whiskey in our great uncle’s delicate glasses. “Cheers!” I said, clinking glasses with him carefully, and then reaching out to my dad, expecting him to clink his sparkling water against my glass. Instead, he grabbed my glass and took a sip. “Delicious,” he said, smiling, and three of us laughed with surprise and delight. A new ritual was born, a new moment, a new us.