THIS IS US
A Lunch Date With Dementia
My mother is a new person now
My mother is gone, except really she’s not. That’s her now, shuffling down the hall toward where I sit at a pace I can’t fairly call slow. It’s more like hyperslow — each step doesn’t quite trust the one that came before.
When she grins, I recognize her. Except when I don’t. Smiles inhabit her face less willingly these days. Most are plastic. They take shape in a rehabilitated sort of way, awkwardly mimicking what others shine at her.
Mom’s tussle of hair is whitening, haircuts long forgotten. Her build is slight, yet able (as ever) to honor the winsome instinct to lean in toward a fresh bloom in devotional appreciation. What relief to see some old behaviors still sharp and intact even as these newest days skew dull.
Today, we’re having lunch.
As usual, I brought the food. As usual, I decided Mom needs to eat. I spoon gourmet takeout onto a plate and signal her to the table. This instinct so many of us never question, the need to satiate hunger at an appointed hour, no longer fires for Mom.
I’ve stopped expecting it.
Instead, I know she’ll see me, and the beets and salmon, and will eventually take a seat beside me, inquiring with wonder as to how food appeared in her house. Once she starts eating, she’ll notice her stomach has sat empty for hours. The swallows will soothe a craving so ignored she can’t recognize it by herself. That’s how life works now. Action is something the world brings to Mom. Initiation has dissolved.
At the end of the first month of this year and the 28th month of this pandemic, my mother was diagnosed. We knew a more severe form of cognitive decline was lurking — but had yet to confirm by giving it a name and a seat at our family table. Dementia.
I suppose confirmation of the ‘d’ word happens for folks in all sorts of ways. For my family, it happened when we opted to undergo the sort of neurological testing the medical world deems useful if you want to glimpse the unseen, to “know” the enemy by reading its diagnostic genus/species in a report labeled with your surname. Like so many encounters with modern medicine, the confirmation helped, and sucked.
Mom stepped up to the testing plate willingly, bravely enduring a series of exams led by kind postdocs and seasoned neuropsychologists. Watching her try her best with the brain exercises they lobbed her way reminded me of watching an awkwardly executed junior high play. You smile for your actor, but wince just as often.
It was particularly tough to see a softball lineup of questions knock her flat: Who was the American president prior to Donald Trump? What is the name of the thing you wear on your wrist to tell time? How many words starting with the letter ‘c’ can you name? She offered up half-answers wrapped in blank stares, her love of the dictionary and fierce devotion to the Obamas no longer within reach. I looked at the floor and reminded myself to breathe.
When we nodded goodbye to the kind receptionist at the Alzheimer’s Research Center after a long afternoon, I half expected Mom to collapse in the parking lot. Had I ever seen her so tired?
Weeks later, a thick envelope arrived by mail. A Zoom conference detailing the diagnosis soon followed. I felt the fuzzy lines of our life get colored in as the doctors spoke. Sundowning… language deficits… unsteadiness… yes, yes, yes. Mom’s days came to life in their jargon. I found myself wondering about the many seniors, and their many families, who never get the ‘d’ word handed to them, but feel it all the same.
As science writer Emily Willingham explains, “for those of us who do develop one of the dementias, the process is rarely sudden and immediate. It is instead an accumulation and progression over years, sometimes decades.” Indeed. Diagnosis or no, I suspect those families feel the nasty thing looming at the lunch table just as I do, in the pauses between sentences, the forgotten duties, the tangle of confusion, the hyperslow. Of course they do. We can, as human creatures, know so very much without ever officially knowing.
“What day is it?”
I’ve grown used to hearing the same question on repeat. “Today is Friday and I’ll see you again on Sunday.” My words are kind, repetitive, pointless.
To Mom, Friday is not a day. It’s a figment. I can name it as a defined entity to reassure her, to speak the language we once shared, but it means nothing. With a paper calendar beneath her finger as I say the word, we make a little more progress. Friday. Friday. Friday. Mostly though, any Friday could be any Tuesday or seven Sundays ago. Days don’t register. Years don’t land in order. Time of day only matters in that it loosely signals when coffee needs sipping or bedtime is nigh. Collapsing of time and abandoning of specificity is now par for our course.
To make matters more acute, today is one of Mom’s last in her home. In two weeks, she moves to an assisted living community poised to serve her in ways she can’t grasp that she needs. The pending shift has her jittery. It won’t be an easy 15 days. Again, Willingham: “Even in the early stages, the process can manifest as changes in personality, behavior, decision-making, and mood. Interest becomes apathy, openness to new things becomes rigidity to change, even simple decisions become impossible, and trust becomes suspicion.”
Though I’m grateful to have a diagnosis and a plan before us, it’s clear Mom often wishes she could hide from both. On some days, she even tries. And who can blame her? It’s not as if wrangling this bloody thing onto the official page does a whole lot to tame it. Dementia, after all, has no cure.
Mom skewers a roasted beet with her fork.
Even the chewing is hyperslow. I watch, fast-forwarding my imagination to this scene in her new setting. Will she make friends? Should we move the couch or just the armchairs? How quickly will she forget this house? I hope sunlight pours in and keeps her plants happy.
Tomorrow, packing begins. We’ll pack for her and her progressive, degenerative, pain in the ass of a new roommate. Dementia. He is a thief, but I better get used to him. I better remember that we can still laugh and play, even with him around. We can still take walks and tend orchids and have lunch. And we will. What we can’t do is unravel his plan to live within Mom, to steal her familiar self, and leave her wondering (until the wondering itself vanishes too) where she went.
I smile at her. She bounces one back.
“I’m glad you’re eating. Have another bite.”