In Search of Lost Words: Novels on Dementia

August 3, 2017 | 1 6 min read

André’s disintegrating mind stars in The Father, a play by Florian Zeller (translated from French by Christopher Hampton).  André’s dementia progresses rapidly through one short act.  By the time the curtain falls, he can no longer decode his environment, including his daughter and son-in-law.  The audience, too, is left befuddled, unable to distinguish André’s imagined family from his real one.  A recent production at Washington, D.C.’s Studio Theatre underscored André’s bewilderment by casting alternating black and white actors as the elusive, double sets of daughters and sons-in-law.

coverMore often, we are privy to dementia’s impact on the people surrounding the patient.  Marita Golden plumbs both perspectives—that of victim and family. As she was researching her new novel, The Wide Circumference of Love, Golden stumbled over a disturbing question:  Why are older African-Americans almost “twice as likely as non-Hispanic whites to develop the disease or other forms of dementia?”  Writing for The Washington Post, she spotlights medical studies that ignore people of color, resulting in a glaring knowledge gap.

Against the background of whites-only scientific inquiry (some of which is currently being remedied), Golden shows where love fits in.   She reports on a family in which the mother was stricken in her early 60s.  The husband is frank:  “To watch the slow deterioration of my wife, the loneliness and the isolation…. Sometimes I pray.  Sometimes I cry.”  Their police officer son, moving home to help, is stirred: “My mother and I were already close…but actually we got closer, as mother and son, and we got closer as a family.”

Golden reminds us that dementia disrupts “cognitive skills such as memory, judgment and language,” thus destroying the writer’s hammer and chisel.  “The words hurl through his lips with a familiar bad taste,” she writes at the opening of The Wide Circumference of Love.  “Words are that slimy, slippery, burn inside him like a house on fire.”

The novel tells the story of Gregory Tate, a beloved African-American architect in Washington, D.C.  Gregory’s wife, Diane, a family court judge, and two adult children have made the agonizing decision to place him in an Alzheimer’s facility named Somersby. Each family member must first cope with, and then adapt to, Gregory’s slide into confusion, violence, and finally, wordless silence.

Diane is particularly well drawn.  Without making light of her burden, she maintains her humanity and sense of humor, struggling to find joy.

…Diane had slowly wriggled into the skin of an unalterably new life…she would retire from the family court…. Howard University’s law school had offered her a professorship…. There was so much to look forward to, but the present she feared would never be past.

A loyal and devoted spouse, Diane feels that everything she does at Somersby is “sacred, an act of faith.”  She takes Gregory’s admission there as her cue to examine her past and move forward.  In their unique ways, her children do the same.  Even Gregory, through whatever fog he inhabits, begins again.

The Wide Circumference of Love supplies hope by interrogating love in all its permutations.  It explores marriage through sickness and health; love between parent and child, even when it is hidden or fraught; and romantic love, however unexpected or inconvenient.  Just as important, the book probes love’s favorite companion—forgiveness.  In Golden’s novel, forgiveness and love partner to open the future.

coverErwin Mortier, the prize-winning Belgian author, deploys memory and language to brilliant effect in his memoir about his mother, Stammered Songbook:  A Mother’s Book of Hours (translated from Dutch by Paul Vincent).  Mortier is not a chronicler of hope, but of thorny, ruinous reality.  He equates mental failure with mortality:  “Death that sits at table here is called Mum.”

Mortier records his mother’s memory loss, and the family anxiously trying—and failing—to buttress that loss.  Here’s Mortier’s father:

He has become her memory.  More and more often she comes in uncertainly, a little closer to him…. If she can’t get any further than stammering, she looks at him wide-eyed.  If the answer doesn’t come quickly, there is a hail of approach.

It is words and language that Mortier seeks, lost not only to the patient, but to the family as well.

The disease is kicking her out of time and booting us out of language.  Words seem to me a kind of breakfast cereal at the moment:  undoubtedly healthy, but rather tasteless.

I chatter till [sic] I burst, chatter till I’m blue in the face and interrupt other people.  I just rattle and gabble on, spew out language, teeth chattering, with a mouth full of dry oats.  Where can I come ashore?  And if I’m not chattering, I’m crying.

In brief chapters composed of short, heartrending sentences, Mortier gives a stunning and raw portrayal of his experience—his childhood and childlike view of his mother; his siblings’ reaction to their failing parent; his father’s generous caretaking, defeated by his mother’s increasing need.  All of this is set against receding piles of words:

What strikes me most about her, what makes me saddest, is the double silence of her being. Language has packed her bags and jumped over the railing of the capsizing ship, but there is also another silence in her.  I can no longer hear the music of her soul; that whole vibrating fabric of symbols with which she wove herself into the world—or conversely, the world into her.

The fewer the words, the less the connection, so that by the memoir’s end, Mortier’s mother is a “glacial valley”:

…an ice field has scraped over her, and the earth has been scoured away by the masses of ice.  In the bare stone, wide furrows are legible.  Every relief has been smoothed out.

coverMarion Coutts’s memoir, The Iceberg, presents this battle for words even more starkly.  Her husband, Tom Lubbock, chief art critic for the Independent, is dying of a brain tumor.  He is losing his words (and livelihood) just as their toddler son, Ev, begins hungrily to acquire language.  Coutts, too, is a chronicler, documenting her husband’s disease with the precision of an investigative reporter (in fact, she is a filmmaker and visual artist).  Her reporting is anything but detached; Coutts’s sentences are awash with the love and passion she feels for the man slipping away from her, the man who is the father of her child.

Disappearing words mark the slippage:

There are these simple words that are starting to cause him trouble:  small, single, only, speak, one, tiny, all, short, sign, slow, same, few, lips, stop, sold, lone.  Tracking elusive words was always Tom’s pleasure but now it has added urgency.

This, while their son teems with language:

…his great unfurling slides of patter run alongside me from about hip level.  My mum made me an omelette and the omelette was tasty it was eggy and so I had an eatI wanted it in trianglesHam is my best friend.  Mum, lookThe sky looks like milkIf a cow went on its back its milk would go up in the air.

Coutts struggles to keep up with her son, while staying as close as possible to her husband.  She is desperate to understand him as he loses ordinary communication:

My love is cryptic.  He speaks in mysteries.  He speaks a language that is singular.  Communication with Tom is nothing like speaking any other language.  It is at the same time known by heart and deeply foreign.

Late in the day (Why did they leave it so late, you cry) we are trying to elide language altogether and invent a communication that bypasses all known words.  We do not have a lot of time…. the language we are looking for must circumvent the brain.

Coutts wraps her friends into her family’s experience, leaning on them with an honesty that most caretakers would envy.  The book is spliced with her emails, updating their friends on Tom, detailing what she needs from them.

His spirits are very good.  He is thinking, talking, his language very tricky by seeming stable.  He wants above all to work on writing projects, and with friends to help he can.

The three members of Coutts’s family face what is before them, not only with courage but with an infectious zest for living.  They travel; they take walks and make picnics.  This affirmation of life is one of the great gifts of Coutts’s memoir.  If her experience is unbearably painful, her family’s zeal inspires.  They embrace life, whether at the end or the beginning.  Love is the mainstay of that embrace; love sustains them through to the end.

And yet. Grief is not something to be avoided.  The characters in these three books live in the fullness of their grief.  As Diane recalls in The Wide Circumference of Love:

A therapist friend told her once the process of grieving a spouse took seven years…. Who did the polling?… How could you tell when the grieving was done?  She still grieved her mother, her brother, and the father she had not known.  Had grieved them all her life.

It is through their access to both love and grief that these characters make their way in the world.  Astonishingly eloquent and present, Coutts summons the words to express these two emotions at the end:

It was snowing the day we buried you… Unplanned, we formed a circle as the words went up….  You have moved through us and now you are gone, leaving us standing.  And so are the living comforted.

Image Credit: Wikimedia Commons.

’s nonfiction has appeared in The Millions, NPR, Heck, [PANK], The Nervous Breakdown, Tin House blog, Bloom, Narrative, and Washington Independent Review of Books; her fiction in Vol.1 Brooklyn, Yale’s Letters Journal, Slush Pile Magazine, Poetica E Magazine, Referential Magazine, Inkapture Magazine, and Wild.  Her recently completed debut novel, represented by the Einstein Literary Agency, was short listed for the 2016 Mary Rinehart Roberts fiction prize. She directs a social justice foundation focused on preventing and ending homelessness and abolishing the death penalty. Please visit her at marthaannetoll.com; and tweet to her @marthaannetoll.

One comment:

  1. It’s my understanding that having trouble calling up a word is entirely separate from dementia. That the language problem occurs in a different part of the brain. I’m sure someone could have both problems at once, but it’s not necessarily the case.

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