A Place Beyond Words: The Literature of Alzheimer’s

Illustration by Wesley Allsbrook
Illustration by Wesley Allsbrook

I was a twelve-year-old home-schooler, hungry for friends, when my grandmother bought a one-way ticket to stay with us in Texas.

“So!” Nana said, as she clapped her hands after a round of hugs at baggage claim. “Let’s go home!”

“What about your bags?” I asked.

Nana pulled a worried, contemplative face.

“I forgot to bring anything,” she concluded, just before her familiar plaid suitcases scraped down the carrousel behind her.

The summer before, a neurologist had diagnosed Nana with probable Alzheimer’s disease, but with a family history like hers—both of her parents’ lives had faded out in a fog of dementia—that “probable” seemed unnecessary. My grandmother’s forgetfulness that autumn was alarming. Often she would panic at the wrinkled stranger in the mirror and ask us how old she was. “No!” she would reply, aghast, when we told her. She sometimes forgot that my mother was her daughter, and she inquired why I called her Nana. “It’s just what I call people I love,” I told her, and she gave me a long hug, a wet kiss on the forehead. There was a new effusiveness to her affection.

I didn’t know the lingo then, but my grandmother was already deep into a process scientists call retrogenesis, a cognitive return to birth. Shameful to admit: in my naïve and selfish twelve-year-old eyes, this could sometimes feel like a positive development. Nana cackled gleefully at my juvenile jokes, spent hours watching me play video games, and joined me in Kriss Kross dance parties and sing-alongs to the “Lion King” soundtrack. I was neurologically developing as she was neurologically regressing, and that winter we were at a moment of equipoise.

“This is her true self,” my mother said, noting the undeniable improvement in my grandmother’s mood. “The happy her behind all the sad things that happened in her life.”

Months passed, and I continued to grow as Nana continued to deteriorate. One day, that February, when my mother went to run an errand, she worked herself into a panic. “Where did she go?” Nana asked, with all the terror of a child separated from her mother at the zoo. “Just the grocery,” I said, but Nana wouldn’t be assuaged. She charged so determinedly for the front door that I had to throw myself over her, tackling her. Her arms thrashed violently. But Nana’s mind that winter was like a room lit by a faulty fluorescent tube, flashing erratically between blankness and lucidity. “I’m sorry,” she said, suddenly calmed.

“Where were you going?” I asked.

She took a baffled look around and told me that she didn’t know.

Nana couldn’t explain where she was going that day, just as she couldn’t describe where she went in the worsening months that followed. Only imagination, I saw, could penetrate that unknowable state of mind. Over the next twelve years, my early attempts to understand my grandmother’s disease evolved into my first novel, “The Story of Forgetting.”

Turning to fiction for answers is an instinct that I share with other caretakers. While Alzheimer’s has been the subject of many excellent works of journalism and memoir (my favorites are David Shenk’s “The Forgetting: Alzheimer’s: Portrait of an Epidemic,” Thomas DeBaggio’s “Losing My Mind: An Intimate Look at Life with Alzheimer’s,” John Bayley’s “Elegy for Iris,” and Diane Keaton’s “Then Again”), it is a disease that uniquely thwarts our ability to comprehend it through traditional modes of investigation. I can read, in Shenk’s book, that Alzheimer’s is essentially a radical slowing of death—“what is usually a quick flicker we see in super slow motion.” I can experience the tormenting early stages of that slow erosion of selfhood in DeBaggio’s firsthand account; I can witness the external expression of late-stage Alzheimer’s in Bayley’s and Keaton’s. But when I consider my own future in a family predisposed to Alzheimer’s, I’m left with urgent questions that only fiction can answer: What do those late stages feel like? What is it like to lose oneself and still live? Could there be some essential kernel of selfhood that survives until the end? Mid- to late-stage sufferers, lost in their aphasia, can’t explain it to us.

As baby boomers approach their seventies and Alzheimer’s disease becomes increasingly commonplace, more and more fiction writers are attempting to reach into that obscure space. The arrival of the greatest Alzheimer’s novel yet, Matthew Thomas’s visionary and challenging “We Are Not Ourselves,” seems like a good occasion to reassess the burgeoning genre and determine what its writers can and can’t tell us about the fate of the self as it succumbs to a disease that attacks the very seat of selfhood.

* * *

Because the full, internal experience of Alzheimer’s is an account that fiction alone can deliver, it’s no surprise that the go-to book for caretakers and early-stage sufferers is a novel. “Still Alice,” written by the neuroscientist Lisa Genova, offers a crisp, straightforward, and wrenching depiction of the fifty-year-old Harvard professor Alice Howland’s descent into the swift, early-onset form of the disease. But Genova has a larger purpose in mind; “Still Alice” is a sui generis book that functions both as an empathetic evocation of the internal experience of dementia and as a guidebook for those confronting a similar diagnosis. When I checked the “popular highlights” for the Amazon Kindle edition of “Still Alice,” I got a heartbreaking sense of the book’s readership. A sampling of the most frequently highlighted phrases:

when the burden of her disease exceeded the pleasure of . . . ice cream, she wanted to die

she’d trade Alzheimer’s for cancer in a heartbeat

take vitamin E twice a day and vitamin C, baby aspirin, and a statin once a day

Tucking treatment strategies and useful Web sites into its fiction, Genova’s book gives the impression of careful medical veracity. But “Still Alice” remains in the mind of the sufferer, and so Genova must, when her protagonist reaches the advanced stages of the disease, leave the knowable behind.

Late in the book, an increasingly disoriented Alice discovers a document on her computer that she wrote during the earlier stages of her illness. The document contains a list of basic biographical questions, such as “How many children do you have?” and “Where do you live?” Alice is now unable to answer them. “You are not living the life you want to live,” her past self informs her, offering her instructions to commit suicide. Alice, however, is already too far into her dementia to manage ending her life, and she survives into the late stages, regressing all the way back to cognitive toddlerhood. Greater horrors follow Alice’s thwarted suicide, but the book ends on a merciful note. One sunny day, when Alice is in the haze of dementia, her daughter asks, “What do you feel?” Alice replies, “I feel love.” Genova seems to frame this as a redemptive moment, a realization of a deeper truth that makes Alice “still Alice.” But considering Alice’s formerly inquisitive, type-A, tough-as-nails personality, this does not feel like “still Alice.” This feels like a transformed self.

Nearly every novel I’ve read that attempts to depict the internal experience of Alzheimer’s also attempts to fit the disease’s retrogenic symptoms to one sort of sentimental trope: a reckoning with a repressed or unacknowledged truth that must come before acceptance is possible. In Debra Dean’s “The Madonnas of Leningrad,” Alzheimer’s forces someone to relive suppressed wartime trauma. In Barbara Kingsolver’s “Animal Dreams,” the disease unearths long-buried memories of a lost grandchild. In her excellent novel “The Wilderness,” Samantha Harvey evokes the disease’s ambiguities—her tone is reminiscent of Virginia Woolf—but also employs the familiar scenario: her dementia sufferer confronts the past loss of both a wife and a daughter. Even in a book as unsentimental as Jonathan Franzen’s “The Corrections,” dementia (in this case not Alzheimer’s but the neurologically adjacent Parkinson’s) allows anal, angry Alfred to confront his past failings as a husband and a father, in the form of a hallucinated talking turd who tells him to “loosen up.” Implicit in these stories is an idea like the one my mother had of my Nana’s “true self”—an irreducible self still intact behind the disease’s neurofibrillary tangles and amyloid plaques.

In an essay about his father’s Alzheimer’s disease, which inspired the character of Alfred in “The Corrections,” Franzen confesses, “I was inclined to interpolate across my father's silences and mental absences and to persist in seeing him as the same old wholly whole Earl Franzen.” It’s a comforting notion, and I indulge it, too, in “The Story of Forgetting.” But I now look back on my own pages with some regret, wondering whether I skewed medical truth into convenient metaphor. Alzheimer’s, after all, does not just place old memories before an observer; it also profoundly changes both those memories and their observer. And while Alzheimer’s may leave some intrinsic qualities intact—perhaps, as my mother believes, Nana’s joyfulness really was fundamental, brought to full expression by her illness—in these novels, it is more than a few such qualities that survive the disease’s depredations, it is a coherent self, capable of great understanding. When Alfred, deep into his dementia in the last pages of “The Corrections,” mutters the single word “I—, ” Franzen leaps inside Alfred’s mind and articulates the awareness that the disease has offered him: “I have made mistakes—” As moved as I am by this moment, it seems impossible that Alfred could muster such a complex, expansive idea.

* * *

It’s a critical dilemma in my reading and writing but also a real-life dilemma in a family like mine, with Alzheimer’s in our genes: How do you locate the personhood in someone who is, for neurobiological reasons, no longer the person you knew? Is there a way to be true to medical fact and still find something that is transcendently human?

“The trick” to relating to Nana, my mother recently told me, “was that I had to learn how to enter into her world. I had to laugh with her, live in the now, stop looking for the lost person.” Eventually, my mother stopped telling Nana her real age and started clapping along to our “Circle of Life” sing-alongs. I remember many happy days. Alzheimer’s, my family came to understand, was a transformative event, one that required us to acknowledge the new needs of a rapidly changing self. This painful awareness is at the heart of the truest Alzheimer’s fiction.

In her story “The Bear Came Over the Mountain,” Alice Munro finds an unexpected occasion for a flawed husband, Grant, to redeem himself. When Fiona, his wife of forty-five years, must move into a nursing home, Grant initially approaches his wife’s transformation with “timidity, humility, alarm.” What Grant discovers when he visits Fiona, a month later, is even more troubling: Fiona seems to have forgotten that Grant is her husband and has begun a romance with Aubrey, a fellow-patient. Reflecting on his own failings in their marriage, Grant does not do what most people—both in fiction and in life—would do. Rather than try to repair his wife’s memory or reconnect her to her past, Grant finds a way to relate to the new, altered Fiona: he works to facilitate her relationship with Aubrey. Grant loses Fiona as his romantic partner, but his love for her, though it changes, remains unbroken. The story ends with Grant holding “his face against her white hair, her pink scalp, her sweetly shaped skull.”

Matthew Thomas’s realist epic, “We Are Not Ourselves,” exceeds the usual boundaries of fiction on the subject. Tracking one family through three generations, it has a “Buddenbrooks”-like quality, offering a vision of a society in flux that is at once expansive and tangibly detailed. While Alzheimer’s disease comes to occupy the agonizing center of the novel, the word “Alzheimer’s” doesn’t appear until halfway through the book’s six hundred and twenty pages. “We Are Not Ourselves” opens with a series of resonant, finely observed vignettes, vital moments in the young life of Eileen Tumulty, a child born to an Irish family in Queens in the years after the Second World War. Burdened with alcoholic, financially struggling parents, Eileen is a shy girl who “would have chosen, of all powers, the power to be invisible.” But she harbors the usual outer-borough dream of social advancement. Standing outside a department store at Christmastime, Eileen longs “to be in one of those scenes in the window, frozen in time, in the faultless harmony of parts working in concert.” She thinks she has found that faultlessness in a charming young professor of neuroscience named Ed Leary; she imagines spending her life “tuning into the calming frequency of his thoughts.”

As the years pass and the transmission between husband and wife grows increasingly garbled, this novel’s form—its simple chronology and the careful intimacy of Thomas’s prose—proves to be the ideal vehicle for conveying the insidious onset of Alzheimer’s. Ed, who has not missed a day of work “in twenty years,” tries to soothe his “cloudy head” by clamping on heavy headphones and listening to classical music in the living room for days on end. Eileen dismisses his early symptoms as a “midlife crisis,” but they worsen. Ed spends whole nights struggling to tabulate his students’ grades; he is injured when “his hand [is] no longer as fast as his mind”; this deeply “sensitive” man calls his wife a “bitch.” Ed’s strange behavior accumulates across nearly two hundred pages, until, at last, Eileen has the grim epiphany that Ed might be suffering from Alzheimer’s: “The dawning came all at once, though it felt as if it had been heading her way for a while, like a train she’d heard whistle from miles off that was now flying past and kicking up a terrible wind.”

The fact that Thomas delays introduction of the book’s primary subject becomes crucial to its depiction. Before Ed’s diagnosis, we encountered him as a full and complex character—“open-minded,” “polite,” someone who “soaked up whatever you gave him” but is also “committed to his own pointless suffering.” By portraying the entire span of Ed’s adult life, Thomas frames Ed’s Alzheimer’s as a life-altering event but not as an occasion for a journey into the past. In this novel’s unswerving linearity, the past remains past, and Ed’s wife and son must reckon with a radically altered future. “Why Ed? Why now?” Eileen asks herself. “It hadn’t happened for a reason,” she decides, “but they would find something to glean from it anyway.” Thomas does not seek comfort in an imagined, wishful notion of a “wholly whole” Ed trapped behind his symptoms. The story is limited to the perspectives of Ed’s witnesses—later chapters alternate between Eileen and their son, Connell—and Thomas leaves it up to them to do that gleaning.

The pages that follow offer the truest and most harrowing account of a descent into dementia that I have ever read. These are mostly intimate, domestic scenes, but Thomas understands how the numbing, repetitive minutiae of caretaking are often freighted with unspeakable pain. Eileen’s attempt to persuade Ed to lift a leg becomes a desperate struggle, her worry growing so severe that she implores God to tell her what to do. When Connell tries to help his father shower after an accident, the scene is an affecting display of a son’s love and a father’s remorse: Connell must clean his father but also attempt to spare him “great indignity,” as Ed flails “like a man on fire,” his “chest heav[ing] in deep, mournful sighs.”

But for all the daily burdens of caretaking, the deepest horror is in Eileen and Connell’s contemplation of what is left of the Ed they knew. Not long after Ed’s diagnosis, Eileen grasps that “his real self wasn’t hiding in there waiting to be sprung. . . . [T]his was his real self now.” But Ed’s Alzheimer’s, like any, is vexingly erratic. The old Ed still vibrates into view for a few alluring seconds. “Something deep in him was surfacing,” Eileen briefly believes, “some essential fiber in his character. Then he stopped again.”

It is that same dimming faith that inspires Connell, late in Ed’s disease, to spring Ed from his nursing home to enjoy one last Christmas at home. Ed’s drooling, babbling presence only reminds Eileen and Connell of how horribly “far” they have come, and Connell is seized with “an agony of regret.” Later, Connell looks at the lights strung up outside their home and thinks of happier Christmases, “trying to derive a simple pleasure from the lights, trying to forget that they and the hundreds more inside had not prevented the encroaching of a fathomless darkness. His father was gone, gone.”

But this grim understanding brings Connell a degree of solace. He finds comfort, finally, not in the belief that there is a soul-like self trapped in his father’s addled brain but in the memory of the person Ed was before. “The understanding between us goes beyond words,” an earlier Ed writes, in a letter that Connell later opens, “and it is there that I live most fully, there and in the mental space I inhabit with your mother.”

While this marvellous novel resists a glibly humanizing attempt to imagine what lies “beyond words,” the need to imagine remains. For all its insight, Thomas’s novel ends with the old question unanswered. If “we are not ourselves” in the depths of Alzheimer’s, who are we? After experiencing his own “sensation of panicked blankness,” Connell considers the possibility that he might inherit the disease, and he reassures himself with thoughts of the sensual joys that even Alzheimer’s can’t claim, pleasures that lie outside of selfhood: “the mouth-fullness of cannoli cream . . . the comfort of a body squeezed against one’s own.”

This might be poor compensation, but it is one that I, too, try to believe in. Who knows? Perhaps, after the horror of memory loss passes, there might really be some relief in relinquishing your self and returning to the endless present in which an infant lives. Perhaps late-stage Alzheimer’s is simply unimaginable to those not afflicted with it. Perhaps it is incompatible with language, a place “beyond words.”