What My Mother-in-Law’s Dementia Diagnosis Taught Me About Caregiving
We weren’t prepared for my mother-in-law’s dementia—or the care that she truly needed.
Illustration: Lynn Scurfield
IN THE WINTER OF 2016, we were walking in a long, deviating oval around Trout Lake, on the east side of Vancouver, and Kenny said, “I think there’s something wrong with Omma.” He sped up.
“Wrong how?” I hurried to keep pace.
We’d been together for four years at that point. He chewed his lip and squinted down at our dog padding between us. It was a gorgeous day, and there were dogs everywhere, chasing, yawping.
“Did she say something?” I asked.
“No. But you know how she’s been calling. A lot.”
I did know. Sometimes we woke to a dozen missed calls from Kenny’s 68-year-old mom. The week before, they’d made lunch plans, confirmed the location twice, and she still wound up waiting at the wrong restaurant. This lost quality of hers had been coming on so slowly, though, that it seemed halfway natural. Then again, my take didn’t count for much because, to me, Kenny’s mom was always a little obscured by a language barrier—her English was rudimentary and my Korean non-existent.
“Well, what are we talking about?” I asked Kenny as we turned off the path, onto the lakeshore. “Do you mean something mental? Like you think she’s got dementia?”
It was so easy, then, to throw out words like that. They had no reality to them; they referred to an imaginary crisis you read about in newspapers, saying, “Just awful; must be hell”—something that dragged down a group of poor others.
Broaching the subject that day seemed to unleash her symptoms, like an incantation or a jinx. Soon, confusion and paranoia broke through the surface of her calm, cheerful demeanour, and it became impossible to deny that something had fallen apart in her mind. Omma began complaining about a woman who lived in the bathroom mirror and emerged to steal her things. To thwart this thief, she would hide her favourite clothes in stashes around the apartment. She then forgot where she’d hidden them, or that she’d hidden them at all, and so her original delusion became a self-fulfilling prophecy—the woman in the mirror, who was herself, was indeed stealing her things.
Kenny’s father, then 70 years old, took an old shower curtain and duct-taped it over the mirror. But this only bounced the confusion from one pane of glass to others: soon Omma’s computer and phone became portals for her fantasies. She watched YouTube videos of Korean pop stars like Patti Kim and Moon Ju-Ran, insisting the celebrities were her intimate friends. She carried on conversations with the singers through the glass. When Kenny came to visit, she would sit him down and introduce her son to these famous friends, all of whom agreed: Omma had a beautiful singing voice. In fact, she would sing for them when they asked, conjuring hundreds of audience members in her two-bedroom apartment. The audience would disappear just as Kenny arrived.
We moved Omma and Appa into a retirement home where meals and laundry services were provided, but we soon realized Omma wasn’t getting the care she required. The new apartment had a small kitchen and bedroom, a living room with a TV, all the makings of a miniature home, and placing them there allowed us to fool ourselves a little longer into believing that a life, a mind, was not disassembling before us. I still had in my head a simple idea of dementia, where Omma would sit quietly at a window, perhaps work on a puzzle or flip contentedly through a picture book. I kept saying we should buy Time-Life volumes from the 1960s and ’70s, books full of images that might jog her memory.
ACCORDING TO Alzheimer’s researchers, someone on the planet develops dementia every three seconds. But what can that possibly mean? Dementia is not a lamp switching off. It is the evening sun, moving by degrees so imperceptible we cannot say when things are halfway gone or when they have disappeared altogether. It darkens, eats at, the corners of experience, first seeming like a trick of our perceptions but proceeding inexorably until at last we find ourselves swept past the warning stage and mired in the irrefutable night. And yet there must have been some three-second period, I suppose, when one could say, “Now she has lost herself. Now we have lost her.”
Kenny and I have parents at the oldest edge of the Baby Boom, which means we are harbingers of a sort. Our experience is common enough already, but caring for a parent with dementia is about to define my generation. Such care will explode in our lifetimes, will dominate our attention, bank accounts and—most painfully—our consciences. Only climate change—another reckoning with our ability to care—will rival it.
As Omma’s illness became obvious, she joined 55 million other dementia sufferers around the globe. That number is expected to rise to 139 million by 2050. (The global senior-citizen population is, itself, ballooning.) The global cost of caring for all those dementia patients will grow to more than $2 trillion by 2030.
Of course, even those trillions of dollars are only a mitigation, a fractional help. The lived reality is still chaos, still heartache. In the spring, only a few weeks after we moved Kenny’s parents to their retirement home, we got a call from his father, who had been pushed past his breaking point. Omma had kept him up all night—again—yelling at him, raving. She pulled a knife.
The previous day, they’d been to her psychiatrist, who warned that she must be admitted to a psych ward if these new, aggressive spells continued. And so Kenny and I drove over, packed his parents into the back seat and brought them to Mount Saint Joseph Hospital. It was a strangely simple act in the moment—as though we were all going out to dinner or on a slightly tedious errand. After Kenny buckled his mother in, she stared out the window; it had been months since she’d asked where she was being taken.
At the hospital, Omma was assessed by a psychiatrist, a gentle Patch Adams figure in his 50s who talked to her as though she were a child. Kenny noticed how effective this was, though it startled him, too. The psychiatrist asked Kenny whether Omma stumbled when she walked, whether she shuffled in place. He was trying to decide between two diagnoses, Alzheimer’s or Lewy body dementia.
We were stunned to learn how nebulous, how shoulder-shrugging, dementia diagnoses can be. Despite those millions of people living with some form of this disease, there is no practical way to diagnose its most common form, Alzheimer’s, until a pathologist can look at the deceased patient’s brain. And so treatment proceeds by guesses, by inference, by waiting and seeing. Things are thrown at the wall: drugs are tried, combined, doses increased, decreased, all in an effort to hit a constantly moving target that may or may not exist.
At last, Omma was laid on a gurney and taken upstairs to the psych ward, where she would spend the next three months. That first night, separation—from her husband, from her son—was nearly impossible. She shouted and reached for them, uncomprehending as nurses led her away. Kenny had taken the nurses aside and explained her love for old Korean pop stars, the only distraction he could imagine. And so those nurses sat with her for hours after she’d been left there, into the night, listening—without understanding—to songs from her youth.
Back at our condo, Kenny looked at me, and I thought he might vomit from guilt.
OMMA STAYED in the psych ward for those painful months, and then, when a bed became available in a long-term facility, we experienced another flush of naive hope that things could be improved. The nurses led Omma down a hall, and Kenny went behind a pair of code-locked doors with safety-glass windows. As he stood waiting for the elevator, Omma fought the nurses off and ran to the door. Pounding on the glass square with both fists, she shouted, “Kenny, gajima! Kenny, gajima!” (Don’t go! Don’t go!)
He pretended not to hear her, and the nurses rushed to pull his mother away again. The elevator arrived and Kenny left. This would be what saying goodbye looked like for many months.
We developed a kind of routine where Kenny would visit Omma after work while I made dinner. We’d eat on the sofa and take stabs at discussing what was happening. I felt, during these conversations, as though I could only get a hold of the start or end of sentences, that words were failing me so that I babbled or murmured without saying anything helpful. And then, at other times, my words became too precise, too scripted, as though I were reciting a condolence I’d learned from a movie. And, just as I was never saying what I meant exactly, I also wasn’t hearing what Kenny meant, either—I listened to the edge of what he told me, afraid to let destruction, and the consequences for the man I loved, sink in.
There was never a time when speaking felt appropriate. It would usually end, anyhow, with more tears and ultimately silence. I sometimes thought, then, how pitiful we would have looked if anyone had glanced up from the street into our condo’s living-room window and saw us with bowed heads. But of course I also knew that nobody was going to pity us—because we were, absurdly, grown-ups now.
KENNY BEGAN TAKING his mother on walks in the neighbourhood around the care centre. She was no longer interested in the trees and flowers that had been objects of fascination all her life. Now she moved, head down, wrapped in scarves, asking where her husband was, where Kenny was—“Right here, Omma.”
In the absence of conversation, Kenny held his mother’s hand. And one day, as they walked hand in hand, circling a block and going nowhere, Kenny absent-mindedly sang the first line of one of those Patti Kim songs she used to play on YouTube. (The new facility had no computer, so it had been weeks since she’d been able to hear them.) As though someone pressed a play button at the back of her head, Omma looked up and sang out loud, in Korean, to the neighbourhood: “The deeper my love gets, the deeper my sorrow gets …”
She knew the whole song. She did not know where she was, the names of her grandchildren or why she was being kept in an institution, but she knew the song once her son began it. She sang:
“When your tears come to my mind, I close my eyes,
And the dreams lingering in my memory turn into countless stars,
Flowing in the dark night sky ….
Although spring is far away in my heart, my love aspires to be a flower.”
LATE IN THE SUMMER of 2019, the family’s “preferred facility,” the one that seemed best suited to Omma’s needs, announced that it had a space for her. And so she was moved again.
Nurses would call Kenny when Omma fell, or if she accused other residents of stealing her husband, or refused to shower, or shouted for her father, her teacher, her anybody. And Kenny would visit, again and again.
After we moved Omma that fourth time, she began singing the old Korean songs less and less. It was as though each move shook another something loose, or perhaps it was merely the inevitable progression of her dementia, lurching downward in stages.
She held Kenny’s hand less fervently when we visited; sometimes she would even blink as though to say, “What are you doing here?” It became easier to slip away and this ease was, in a way, painful too.
One day Kenny took her on a walk outside and, as they made their way past little houses with clean little gardens, she answered questions that had not been asked, or combined three thoughts into a sentence so that her words became riddles. They stopped talking. And then Kenny whistled the first few bars of “You Are My Sunshine.” Suddenly Omma beamed and sang to the whole street:
“You are my sunshine, my only sunshine!
You make me happy when skies are grey!”
Kenny, delighted, began singing along: “You’ll never know, dear, how much I love you.”
But there his voice caught and he choked. He’d been working for years now on her behalf, waking every morning worrying, regularly weeping, forcing himself to be where and how she needed him to be. And she knew nothing about the care being offered. There is a selfless attention that only a caregiver knows, an attention that is not shared or reciprocated, or even acknowledged.
My generation, raised to chase the ease and transactional pleasures of consumerism, will learn what it means to give and get nothing back. More people than ever will move beyond a this-for-that dream and toward one-way giving instead: giving of time and energy and heartache to feeble and vulnerable—and, by then, often infuriating—elders who, as they bend toward a medically prolonged chaos, will spit and scream instead of saying thank you. Meanwhile, lowering birth rates mean the youth of the future will be outnumbered by those they care for.
I’ll make this pitch, though, to my future caregiver: it’s more of a bargain than it seems. Caring for another, particularly one who cannot give back, draws us into an enormous, lasting network of human concern. What do we get for our trouble? We get the chance to contribute, for once; to give in a world that encourages such endless taking. Our true inheritance waits not in some oil field or trust fund but in our elemental bonds. And it’s through our supposed sacrifices that we manage to finally account for our own lives.
AS I WROTE this story, Kenny’s mother, of course, grew worse. Her frontal lobe, the seat of her reason and emotional control, failed far faster than other parts of her brain, and she began hitting her caretakers. She was taken back to the psych ward at Mount Saint Joseph, where she kicked one of the nurses, was held down by a team and injected with something to make her woozy. We sat on the edge of her hospital bed, in the emergency room, and listened to the kindly psychiatrist, the same one who’d handled her first intake all those many months ago.
Kenny’s mother was still in the psych ward when her birthday rolled around. But what gift do you buy a woman who cannot understand where she is, let alone the value of a cashmere sweater or a hardback novel? Kenny bought her a glossy apple tart, which she looked at briefly before turning away. She couldn’t seem to recognize that this might be something she wanted. He brought a little to her lips, and she enjoyed the morsel, but then immediately lost interest again. The dessert remained uneaten, a shining cipher. The instinct to want something seemed to have drained away.
Weeks later, COVID-19 reached our part of the world. It shuttered the shops and restaurants, silenced the beaches and streets, swept us into quarantines. And it caused the care homes to ban all visitations. We could not know whether Omma would recognize her family at all by the time the pandemic had passed. There was nothing to do but hope that, somehow, enough had already been done. But what would “enough” even mean?
Shortly before the doors were locked against us, Kenny was sitting by his mother and she suddenly lit up, straightened in her chair. “Kenny,” she said, “let’s go buy some apples.”
“Okay, Omma. Let’s go buy some apples.”
But they didn’t head out to the shop, of course. They only sat and held hands. Shopping was a too-simple story from another, simpler life that barely made sense anymore.
To read more about this story, purchase a copy of Michael Harris’s book, All We Want: Building the Life We Cannot Buy.
Excerpted from All We Want by Michael Harris. Copyright © 2021 Michael Harris. Published by Doubleday Canada, a division of Penguin Random House Canada Limited. Reproduced by arrangement with the publisher. All rights reserved.