Opinion: It bears repeating: The stories we tell about dementia

Kyo Maclear’s latest book is Unearthing: A Story of Tangled Love and Family Secrets.

For most of my life, I have looked to stories for solace and joy, to make maps in a chaotic universe, to find connective portals to other people and ideas. Stories have been a way of questioning received worlds while creating new ones. They have been vessels, preserving things that would otherwise be forgotten. They have been rope bridges to the future. I have spoken things into existence and self-created through stories, such is their strange, alchemical beauty – the power they confer.

But lately, I have been having a reckoning with story. I have been questioning the dogma that narrative is the best or most healthy way to respond to experience. I spend half my time making story, and the other half trying to unstory myself – or, rather, trying to value the parts of lived experience that do not fit into a narrative shape.

For the past seven years, I have been caring for people with dementia. First, it was my father with vascular dementia, who died in December, 2018. Now my mother, who was diagnosed with progressive memory loss in November, 2019. During this time, I have felt the seams slacken, the narrative threads loosen from the stitching line. I have watched the cloth of story give way, as though surrendering after a good fight.

For seven years, I have lived in a book of repetition. Such is the iterative nature of caregiving, and such is the neurological mechanism of dementia, that I spend much of my time repeating the same simple actions, gestures, phrases. I see my mother three or four times a week and sometimes try to vary the routine. But mostly I don’t. As much as I crave change, my mother benefits from consistencies. The comforts of knowing the same rice bowl will arrive with her favourite fermented beans at the appointed time. The repeated joys of watching Jamie Oliver make pasta with Nonna Miriam or seeing O.G. Anunoby (”the handsomest player”) put a ball through a hoop. The mantric reprise of a favourite enka song by Hibari Misora, less tune than psychic and spiritual tether.

Rituals are little anchors thrown into the wild sea: from choppy water to consoling rhythm. There are days when the repetition, with its skipping-record tedium, and my mother’s constant pacing and perseveration, drives me bananas.

There are days so virtually identical I feel lost and can no longer see the time we are standing inside, cannot see the larger picture, cannot see where we are going.

Here is a story: A mother and daughter are standing in an April garden. They have been here before even if they have not been here exactly. They have felt the release of spring and seen the tight crocuses spear through the winter debris and watched the buds appear on their favourite tree like tiny, happy pompoms.

The daughter tries to shape a story out of these Groundhog Days and caregiving hours, because stories are the way you dignify experiences. She has seen how those denied the power or agency to storytell are devalued; she has noted the overemphasis society places on articulation as a foundation for sympathy, on narrative competence as the basis for citizenship. And she needs to believe in versions of her mother and herself that deserve dignity.

She makes notes on scraps of paper. Sometimes they are statements or questions that her mother asks, and sometimes they are jokes. The notes describe cyclical conversations, looping thoughts, spiky behavioural patterns that range from surreal to painful to funny to illuminating. These notes are not concise or orderly. They contain neither quest energy nor emotional velocity. They map a timeless terrain with occasional moments of turbulence. The notes litter her desk, or she eats them. Or they fly away in the wind.

Just tell another story, says the voice of narrative reason. Tell a linear story that keeps moving toward a more coherent future.

Dementia is not a “good story.” It does not involve conversion or recovery. There is no promise of rebuilding. Other experiences of declining health may bring “mountaintop” moments of epiphany, but dementia is often accompanied by a loss of insight. It does not generally come with a miracle or a revelation.

When it comes to dementia, one story has tended to dominate. It is a story of torturous disintegration where personhood disappears. It is a story of broken life. Without feigning that dementia is not cruel or tragic – I truly would not wish this journey on anyone – I do not, and cannot, believe in this uniform narrative. It occludes too much and depersonalizes too many. I am not ready to surrender my mother to its grim monolithic vision.

In Canada alone, more than 747,000 people are living with Alzheimer’s or another form of dementia. Many of these people could not take you through their past and connect the dots to the present. Most could not give a full account of themselves. But deep into the wonder and anguish of dementia, through the quake of memory, language and perception, in the wings of assisted-living residences, I have witnessed unexpected forms of wisdom and connection. I have seen moments of luminescence and clarity, instances of poetry and wicked improvisation; sharp kaleidoscopic moments, when the blurred mind moves in surprising angles. I have felt my parents evolve and soften as they shed old habits of mind, finding ways to live intensely in the present.

When we say story is what makes us human, what do we mean? That without one we are inhuman? Faulty? Deficient? This is what I mean by reckoning.

Both my parents experienced a neurological stage known as anosognosia wherein they forgot their condition. It was in this state, when the narrating-self fled the scene, that I noticed an ease develop in them. Earlier feelings of panic and confusion and spells of depression seemed to subside. When my father lost his place on the page, going over the same line again and again, puzzled by its repetitiveness, this no longer seemed to upset him. What caused unnecessary, visible distress was interacting with people who expected him to still live and express himself in a narrative mode. The pressure of catching up with an old colleague or friend, with its imposition of normality and expectation of biographical recall, seemed to quicken the illness, destroy his fragile sense of harmony.

Here is another story: The daughter joins an online support group run by the Reitman Centre in Toronto. It is a group of six daughters, all providing care to parents with dementia. They meet weekly for eight sessions. They are not just connected to their parents; they are somehow infused and infiltrated by them. They discuss how small, everyday movements form the backbone of their days and weeks. They confess to the irritation that occasionally snaps out of them. No one complains that the stories they share are mundane and flat. “We sound like an echo of each other,” says one of the group members with a laugh. Another replies: “The sameness is exactly why this story needs to be shared … because others have lived it and will live it again.”

Mostly, the caregivers feel stuck. They are faced every day with narrative pressure, the insistence from well-intentioned friends and colleagues, from all media and markets, that they present themselves as interesting and evolving characters whose lives are moving forward, and so therefore they are faced every day with defying that pressure so they can admit the truth of their family’s everyday arrangements. The truth of this continuing, slow-motion crisis.

That narrative pressure really does a number on them. It may be the vicious seed of this thing called “caregiver depression.”

How does one not internalize the general cultural impatience toward aging and illness? How can one speak of what does not unfold or dynamically change or tidily resolve? Might there still be a good life in the absence of a good story?

The daughter rereads the Buddhists, the French philosophers. She rereads the critic Galen Strawson who expounds on the harm of narrativity, which he sees as “highly unnatural and ruinous” for people who do not turn to story for self-understanding, whose sense of self is discontinuous. The more she reads, the more she is reminded that the maxim “life is a story” is itself a story and a clichéd one at that.

The daughter starts overturning other stories. Trashing them. Like the stories that fetishize novelty and variation as the only paths of value; the ones that say repetition is a drudge. The stories that disparage those engaged in repetitive labour, that overlook the unstoppable work of the assembly- and front-lines, the sustaining efforts of those very people charged with keeping others alive and well. The stories are full of racism and misogyny toward those who do society’s holding and maintenance.

The daughter wonders if she will ever be a writer again. She begins looking for new forms. Forms with different expectations.

Lately, I find myself turning away from stories to other expressive arts where obsessive, seemingly endless repetition is a keystone practice. I am trying to better understand the experiences of people living with dementia. I want to know what repetition can yield and generate.

I study the rhythmic patterns of the Bauhaus weavers, the hand-formed vessels of Edmund de Waal, the meditative lines of Agnes Martin, the painterly cadences of Giorgio Morandi. I devote numerous listening hours to Ryuichi Sakamoto, a beloved composer who has just died, steeping myself in his echoing phrases. I follow other artists who make things in a serial way. Stitch by stitch. Row by row. I enter the madness of their loops, the tender patience of their attention, their endlessly renewing returns to the same subject. When repetition is encouraged, even heightened, what becomes noticeable are subtle shifts. Even the most uniform-seeming moment holds microvariants.

My mother’s latest passion involves knitting scarves. I watch her knit infinite balls of Drops Snow yarn. She be-scarfs the family, be-scarfs people of distant acquaintance and keeps going as her son-in-law transports carloads of her creations to a local mental-health hospital for donation. My mother cannot spin a story or remember what she ate for dinner, but she will gladly wrap the entire city – the whole country! – in snazzy mufflers. A life force endures even in the absence of memory. Or, as another caregiving daughter says: “My mother does not always know me, but she knows she loves me. She will say, ‘Who are you? Why do I love you so much?’” What is forgotten by the mind is robustly recalled by the hands and heart.

It bears repeating: One cares for a mother the way one goes out to fetch water from the well or to till the field. Several times a week for many years. Picture it 100 times. Picture it a thousand.

It bears repeating: I lost my father to cancer and dementia in 2018 and will gladly stay in this circle of time with my mother. Soon, everything will change. Until then, I will surround myself with friends who do not balk at the undramatic flatness of my life. I will lean on those in my close orbit who do not bridle at the looping, who are not impatient with whole seasons of sameness. No one near to me is waiting for rising action because they know that what rises must fall.

It bears repeating: If you ever find yourself in this place, consider buying a self-inking date stamp, like that of On Kawara, to turn the fixed routines of your days into an art statement. Consider a rotating magic lantern that will fill the monotonous rooms of your life with gliding shapes and colours.

It bears repeating: We turn to story to our benefit but also to our detriment.

The daughter and mother end their day in the garden. The garden is the place of present action, the only steady and assured thing they have. In the garden, they cultivate a healthy and hopeful attitude toward the recurrent. They insert themselves into the grid of the world’s infinite, living, repeating things. That feeling of eternal reprise is the very argument of the garden. The very action of love.

All the spring ephemerals have returned. The daughter and mother look at the snowdrops, Virginia bluebells, and trout lily. They do not regard these botanical recurrences and say, “What a small, sad, unoriginal idea of a life.”

If this were a story it would be called “The Radiance of Repetition” or “Here We Go Again.” But this is not a story. This is a mother and daughter, standing in a garden, at the edge of narrative, on an April day, just like every other.