Months later, after Dad’s diagnosis at age 57, I picked up a copy of “The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias” for an overview and a rundown of action-based tips such as sticking to a routine, staying in the moment and safety-proofing. The manual was helpful on a logistical level, but I craved something more.
Dad’s neurologist called Alzheimer’s “a real weird city,” and, more than 20 years later, I can think of no more apt description for the challenging and changing terrain we navigated as a family. That chance to listen to Sparks’s novel gave me my first point on a new map. During the rest of my time as a caregiver, and in the years since my father’s death, the most lasting and comforting guidance has come from art.
Fiction writer Aimee Bender’s short story “The Rememberer” helped me begin to frame the complexity of my own emotional response to Dad’s illness. The narrator relates the de-evolution of her partner as he goes from man, to ape, to eventually a salamander. On the first day of her transformation, the narrator and the ape sit on the lawn together, ripping up the grass. Recognizing her de ella lover de ella in this creature, she mourns her loss de ella while simultaneously meeting this new version where he is.
The story helped me get my bearings in my rapidly transforming world and provided a template for approaching a heartbreaking situation with attentiveness and curiosity.
Bender, along with other magical realists and speculative writers, merges the surreal with the commonplace, asking the reader to exist in a state of ambiguity that will be familiar to those who have some experience with Alzheimer’s or dementia. Poetry, with its reliance on metaphor and imagery, often does the same thing.
“Poetry is writing with gaps in it,” says Elizabeth Cohen, poet and author of “The Family on Beartown Road: A Memoir of Love and Courage,” which describes the years she spent “living between learning and forgetting,” simultaneously caring for her infant daughter and aging father. “I never really feel like I have to tell why those images are there or even what they mean, it’s just what the other person is bringing to it.”
This way of thinking informs Cohen as a writer, but it also echoes the experience of the caregiver. As my father’s behavior and language changed, we changed with him, letting go of constructs such as time and identity. As his aphasia became more advanced, we became alert to context clues and adept at filling in missing words, creating together a kind of collaged communication.
“It’s about evolving consciousness,” says Norman E. Rosenthal, a psychiatric researcher and clinician who finds that poetry may offer a fresh perspective in times of emotional upheaval. “Poetry has always resonated with me on a deep level,” he says. In his book “Poetry Rx: How Fifty Inspiring Poems Can Heal and Bring Joy to Your Life,” he encourages readers to “be intrigued by what you don’t immediately understand,” suggesting that the questions left unanswered by the poet might linger in the brain and, perhaps, spawn new ideas or deeper contemplation.
This advice applies to caregiving, too. Deep into dementia, my father could ask the same question 20 times in five minutes. I have nine ice cream sandwiches in a row; he used industrial enamel to paint his toenails and once set fire to the weeds in the backyard. Most caregivers have similar tales of the mysterious, hilarious and terrifying. As a gentle exercise in the tolerance of the unknown, poetry might help us to (mostly) keep our cool through it all.
Meeting your loved one where they are can help lower their anxiety and limit confusion, but there were days when, referred to as a “saint” by friends and as “that lady” by my Dad, my own identity felt fragmented and false. Finding my experience reflected in novels and memoirs grounded me in a larger community of caregivers who were all making mistakes, finding new strengths, losing sleep, feeling guilty, laughing, crying and maybe sneaking wine into their coffee cups.
“Stories save lives,” says Ann Campanella, management team member of AlzAuthors, a nonprofit organization dedicated to sharing narratives of Alzheimer’s and dementia. Before turning her own caregiving experience into the memoir “Motherhood: Lost and Found,” Campanella read a lot, and not just about Alzheimer’s. Citing Dani Shapiro’s “Slow Motion” as a favorite “memoir of devastation,” she says, “I just wanted to understand how other people waded through these experiences and survived or even thrived when, by all accounts, it looked like they were going to be demolished.”
In addition to providing a vision of the future and keeping us company, literature lends us a new perspective, giving readers a chance to understand the particular sorrows attendant to roles of spouse, partner, friend, sibling or child. This use of a shifting narrative voice is particularly moving in Marita Golden’s novel “The Wide Circumference of Love.” Authors such as B. Smith and Dan Gasby, Thomas DeBaggio and Wendy Mitchell have written stirring nonfiction first-person accounts of what it’s like to live with Alzheimer’s.
Cohen’s memoir of Beartown Road provided a valuable model of recovery. As I held her book and read her story de ella, I began to see how the craft of writing had helped her to process her role de ella as caregiver and had given her space to reaffirm her identity de ella.
“I’m an advocate of writing your way through these things,” Cohen says. “You go to a therapist and talk about your problems, and they give you some advice, and that can help a lot. But if you find the stories around what you’re going through — the deep kind of structurally meaningful stories — they can help you frame that experience and your life in a way that helps you forever.”
I experienced a similar dawning of awareness when writing my own memoir of my father’s decline. But, of course, you don’t have to write a book to find some solace in writing.
“We teach journaling as a stress-management technique,” says Jenny Peterson, a program specialist at the University of Southern California Family Caregiver Support Center. “Instead of letting it roll around in your head without an outlet, put it on the page.”
Jotting down memories of a loved one from before their illness can help to remind us that despite the illness, this person is still a unique individual. Working on my own memoir gave me a chance to write my father back to life. I didn’t want to leave him in that place of unraveling. I didn’t want to let Alzheimer’s have the last word.
A similar urge drove Michelle Memran, director of the documentary “The Rest I Make Up,” a vivid portrait of María Irene Fornés, the award-winning Cuban-born playwright whose creative process was centered on discovery and sense memory. Memran found the playwright’s “moment-to-moment” approach critical as both a caregiver and filmmaker. “You’re learning the best way to communicate and the best way to collaborate, and taking cues from her de ella, and following her,” she says. The challenge of making the film was “to make it not about the disease, but to make it about a person’s full, lived experience while preserving their identity de ella and maintaining that contract of trust.”
The resulting collaboration between Memran and Fornés is a lesson in mindfulness and creativity as well as a powerful testimony to the idea that life does not end with a diagnosis of Alzheimer’s. The film is alive with joy and the unstoppable force of Fornés as a creator and teacher.
“When you are a caregiver, how do you reenter with curiosity every day?” Memran wonders. “There is so much we can learn from novels and poetry and creative nonfiction and films that might not be in an instruction manual. Perhaps the instruction is that you have to approach it sideways.”
In the two decades since my father’s death, my role has shifted from daughter to parent. I’ve continued to add Alzheimer’s memoirs to the shelves that my husband once referred to as my “library of sorrow.” Volumes written by Oscar-winning actresses, the daughter of a former president, and a few peers, Maggie Downs, Elizabeth Kadetsky and Kari L. O’Driscoll, are reminders that, much like the pandemic, Alzheimer’s observes no boundaries. Other shelves in the house are filled with travel narratives, tales of motherhood, investigations of our natural world and always, more poetry. Whether isolated by caregiving, illness or quarantine, the arts are a constant reminder of our collective human experience, allowing me to imagine that, when we do gather together, we might pick up a conversation that has already begun.