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A New Literature of Dementia

These four new books can comfort and inform caregivers

By Linda Bernstein

Unfortunately, it’s a truth we can’t escape. Unless there’s some major medical breakthrough in the next few years, many of us will develop significant memory impairment as we age. Most have us have also helped care for parents whose dementia was (or still is) unnerving, irritating, worrisome and bewildering.

No matter how much we love someone suffering from memory loss, we come to accept that the person we are caring for is not the person we have loved. The most sparkling, endearing personalities are strangled by a mind disconnecting from logic and memory.

(MORE: 17 Essential Books for Family Caregivers)

Statistically, people 55+ account for over half the population of the United States (and many other places), so it is not surprising that a new niche of literature has emerged. Written from the perspective of both those watching themselves “lose their minds” and their caregivers, this literature demonstrates how art allows its creators to express, and its audience to perceive deeply, what is difficult to face in real life.

These four new books each approach the issues surrounding aging, loss and caregiving head-on:

An Absent Mind by Eric Rill

Not too long ago, I read a moving article in Slate by Gerda Saunders. My Dementia: Telling Who I Am Before I Forget chronicles how the author confronts her diagnosis of microvascular disease, the second leading cause of dementia after Alzheimer’s. Elegantly written, keenly observed, Saunders’ essay makes us want to shout, “How can the author possibly be ‘dementing’ when she writes like this?”

Rill’s novel provides something of an answer: The brain, attacked by illness, struggles to make connections, like an out-of-breath swimmer fighting his way to the water’s surface and air above. Rill shows the main character, Saul Reimer, separate from an intellectually active life over the course of six years. The reader sees the story through Saul’s eyes, his family and the diagnoses and interpretations of his physician.

As if mimicking Saul’s description of his brain as “a shortwave radio, mostly static that occasionally finds the station,” An Absent Mind tells Saul’s stories in bits and pieces, stops and starts. From the beginning, we know the end — eventually the signal will stop. The plot involves a buried family secret, which keeps the reader hooked, depressing outcome notwithstanding. Especially well conceived is the effect of Saul’s downward spiral on the family members. This is a novel, but anyone who has been involved in the care of someone with dementia will know it is not fiction.

Living in the Land of Limbo: Fiction and Poetry about Family Caregiving compiled and edited by Carol Levine

Carol Levine, director of the United Hospital Fund’s Families and Health Care Project, began collecting the short stories and poetry included in this anthology while caring for her husband, Howard, who lived as a quadriplegic with traumatic brain injury for 17 years after an automobile accident. All that time he remained in the “Land of Limbo,” as did she, his caregiver. Levine organizes the literature by relationship: children of aging parents; husbands and wives; parents and sick children; relatives, lovers and friends; and paid caregivers. Many of the stories and poems center on AIDS and remind us of a time a couple decades past when that diagnosis was an imminent death sentence.

(MORE: One Daughter's Caregiving Regrets)

The literature concerning dementia seems to be more in the here and now. In “Mrs. Cassidy’s Last Year,” by Mary Gordon, a husband tries desperately to keep his promise to his wife that she will die at home, and ends up himself immobilized by a broken leg. Ethan Canin’s “We Are Nighttime Travelers” finds an elderly couple stumbling into a kind of love that arises from a diminution of mental faculties. One of the most moving pieces, “Where the Groceries Went,” by Raymond Carver, bluntly explains the frustrations of a son or daughter caring for an elderly parent with memory loss and ends with these words, from the parent, that home in on the terror and pain of memory loss:


“ . . . Honey, I’m afraid.
I’m afraid of everything. Help me please.
Then you can go back to whatever it was
you were doing. Whatever
it was that was so important
I had to take the trouble
To bring you into the world.”

Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias: 101 Stores of Caregiving, Coping, and Compassion, edited by Amy Newmark and Angela Timashenka Geiger

Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias provides short, practical essays to help readers accept the facts of Alzheimer’s and become the best caregivers they can. Some of the material comes from people living with the disease, such as a man who, six years in, still feels he can be “the author of this chapter of my life and actively shape the man I will die as.”

Another, who was diagnosed with “youngest-onset” at age 52, writes, “I know I am the luckiest guy in the world.” Other essays come from caregivers, such as the daughter who teaches herself patience while her mother pours apple juice on the pasta and spits out her medicine. This book is a sharp turnabout from the others mentioned here because it is chock-full of positive thinking — a mindset that many find helpful, judging from the overall success of the Chicken Soup series. The essays are not particularly literary, but they are authentic and will speak to those facing dementia who are searching for comfort as well as caregivers looking for inspiration to focus on the moments of good in the downward spiral. All royalties from the book will be donated to the Alzheimer’s Association.

Can’t We Talk About Something More Pleasant?: A Memoir by Roz Chast

And now for something completely different: a “graphic memoir.” Roz Chast, whose cartoons for The New Yorker have always pointed out the pimples on our lives with wry humor, illustrates her way through her parents final years with the same wit and comical irony along with a narrative (hand-written) commentary. Like many families, Chast’s avoided talking about illness and death (though she and her parents are drolly obsessed with germs and disease). But when her parents turned 90 and seemed to need help, Chast stepped in.

With the aid of an “elder attorney,” they all completed the necessary “paper work,” which enabled Chast to understand her parents’ finances, but couldn’t avert their growing disability, her mother’s fall and her parents’ eventual move to an assisted living facility. As time passes, her mother’s and father’s conditions worsen, her father dies, her mother’s dementia increases and the bills are frightening.

Chast has the genius for illustrating (literally) precious moments, such as her mother’s delusion that the Board of Education had given her an apartment at 550 Park Avenue (her mother had been a junior high school teacher in New York City) or her mother’s (invented) story of Chast as a little girl jumping onto the stage during a performance of Uncle Tom’s Cabin. Nothing is sugar-coated here, and, in the end, the reader can’t look away from the sketches of her mother’s final hours, raw with no cartoons, just captions.

Linda Bernstein has written hundreds of articles for dozens of magazines and newspapers, writes the blog GenerationBsquared and teaches journalism at Long Island University, Brooklyn. Read More
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