Literature

Dear Alzheimer’s: A Caregiver’s Diary and Poems

front coverProbably most readers of Dear Alzheimer’s—A Caregiver’s Diary and Poems by Esther Altshul Helfgott picked up her book because they know the author or the illness. I write to contradict the notion that this book is only for handing to friends with forgetful parents or a forgetful partner, or for comforting caregivers of the chronically ill with community and expanded understanding. (Although the book is these too.) Esther Altshul Helfgott’s diary and poems recount a loving relationship and an artist’s response to its transformation: a story for all of us.

Esther Altshul Helfgott chronicles the illness of her husband, the pathologist and gentle man, Abe Schweid. She chronicles her emotions. She chronicles the care of Abe Schweid at home and in specialized facilities. She chronicles his language, his acts, his being. As Helfgott’s husband’s aphasia swallows his speech, her writings lengthen. She chronicles pain, grief, and loss, and discovery and appreciation. A loving picture emerges. Abe Schweid with Alzheimer’s—and likely before—is a total mensch.

When we were twenty, and my college classmate handed me Betty Rollin’s First, You Cry to tell me she had breast cancer, I read it obediently. It gave me something to do for my friend. It gave us a (weird) perspective on her illness. My friend was so much younger, unmarried, and a student with no profession or any of Betty Rollin’s adult accoutrements. But it helped.

This was my earliest exposure to literature about an illness or caregiving. Nowadays we find shelves of non-fiction and fiction about the experience of disease from the afflicted and the afflicted’s loved ones. For example, Goodreads lists thirty-one titles under Alzheimer’s disease in fiction and more than a dozen in non-fiction. In the early eighties, however, most literature about disease derived from those studying it, naming it, or attempting to cure it. Rollin’s book stood out as a personal account.

Yet I remember feeling that Rollin avoided the heart of the matter. She didn’t feel genuine to me. Perhaps she remained too much the journalist. Helfgott’s book is doubly classified as Alzheimer’s Caregiving/Poetry. Dear Alzheimer’s emerged organically for Helfgott for whom writing is integral to life. Helfgott founded the “It’s About Time Writers’ Reading Series” more than a score of years ago, has published non-fiction and poetry, and blogged for the Seattle Post-Intelligencer (“Witnessing Alzheimer’s: A Caregiver’s View.”) Her poems and diary remind us of the individual ways in which memory loss, aphasia, and other features of Alzheimer’s manifest.

While Helfgott documents Abe Schweid’s Alzheimer’s, she also gives glimpses of the behaviors and language of other inhabitants of his nursing facilities. Other non-fiction, personal accounts might do the same. What distinguishes her book the most is the knitting of diary and poetry. Often I could not distinguish poetry from diary. Her book links journalism and art. By giving readers the experience of her story through art, Helfgott shares her consciousness and creates a universal experience.

At times, Helfgott seems to struggle with making art from her experience of her husband’s illness, asking, “At the very moment I honor him, do I not betray him?” She stands before the audience at the Frye Art Museum for a reading while Abe lives in his care facility, “as if making art out of pain is a perfectly ok thing to do. And of course it is … It’s essential, and Abe would agree.” She asks further, defends her art further, “What is art if not an expression of life, and of self and other?” However she may feel about these questions, Helfgott has shaped a book that is a way “to understand the awfulness … to use that awfulness as a tool for growth …” and much more. Her careful record provides readers a deeper knowledge of Alzheimer’s—which is not all about memory loss, diminishment, and irascibility. It is also about companionship, enjoyment of music and images, about “a new or revised self.”

The reader experiences Dear Alzheimer’s organically too. The book spans the years 2003-2012. Each diary entry and poem comes in chronological order, sometimes titled, always dated. Each new date receives a fresh page so “April 9, 2007/ “I miss me,/he said./I miss you too” sits by itself on a page. The empty space tells as much as the words. The empty space surrounding the words feels especially yawning and huge when Abe Schweid dies.

Most of Helfgott’s poems are spare—twenty-some lines, a word or three each line, in free verse. They show us her husband up close, often including his most recent, few words. Initially she asks the doctor how her confusion is different from her husband’s.

When you’re confused
You know you’re confused, he says.
And that means you’re not confused.

When I’m confused
I don’t know
I’m confused
And that means
I am
confused.

…and squeezes my hand.

Diary slides into poetry. Poetry slides into diary. In so many instances, Helfgott records Schweid’s gentle words, his loving smile, his friendly waves. She celebrates a loving soul.

[A note about the publisher, Cave Moon Press: Douglas and Tanya Johnson run the small outfit philanthropically. They use art as a tool for social change. A portion of the proceeds from Dear Alzheimer’s benefits Penny Harvest, a program of Solid Ground, dedicated to ending poverty.]


Pamela Hobart Carter loves Seattle as much for its water and mountains as for its bustle and creativity. She explores the Emerald City daily while walking her dog. Carter used to be a teacher who wrote on the side. Now she is a writer who teaches on the side.