Months later, after Dad was diagnosed at age 57, I picked up a copy of “The 36-Hour Day: A Family Guide to Caring for People with Alzheimer’s and Other Dementias” for an overview and recap of action tips such as how to stick to a routine, stay in the moment and stay safe. The manual was logistically helpful, but I wanted something more.
Dad’s neurologist called Alzheimer’s a “real weird town” and, more than 20 years later, I can think of no more apt description for the difficult and changing terrain we’ve traveled as a family. This chance to listen to Sparks’ novel gave me my first point on a new map. For the rest of my time as a caregiver, and in the years following my father’s death, the most enduring and comforting guidance came from art.
Fiction writer Aimee Bender’s short story “The Rememberer” helped me begin to understand the complexity of my own emotional response to Dad’s illness. The narrator recounts his partner’s de-evolution as he changes from human to ape and eventually becomes a salamander. On the first day of his transformation, the narrator and the monkey sit together on the lawn, tearing up the grass. Recognizing her lover in this creature, she mourns her loss while simultaneously encountering this new version where he is.
The story helped me navigate my rapidly changing world and provided me with a template for approaching a harrowing situation with care and curiosity.
Bender, along with other magical realists and speculative writers, merges the surreal with the platitude, asking the reader to exist in a state of ambiguity that will be familiar to those with some experience of Alzheimer’s disease or Madness. Poetry, which relies on metaphor and imagery, often does the same thing.
“Poetry is writing with gaps,” 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 baby girl and her aging father. “I never really feel like I have to say why those images are there or even what they mean, it’s just what the other person brings 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 notions such as time and identity. As his aphasia became more advanced, we became attentive to contextual cues and adept at filling in missing words, creating a kind of bonded communication together.
“It’s about shifting consciousness,” says Norman E. Rosenthal, a psychiatric researcher and clinician who finds poetry can offer a new 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 could persist. in the brain and, perhaps, generate new ideas or deeper contemplation.
This advice also applies to care. Deeply demented, my father could ask the same question 20 times in five minutes. He ate nine ice cream sandwiches in a row; he used industrial enamel to paint his fingernails and once set fire to weeds in the backyard. Most caregivers have similar stories of mysterious, hilarious, and terrifying. As a gentle exercise in tolerance for the unknown, poetry might help us (most importantly) keep our cool through it all.
Meeting your loved one where they are can help reduce their anxiety and limit their confusion, but there have been days when, referred to as “holy” by friends and “that lady” by my father, my own identity felt fragmented and false. Finding my experience reflected in novels and memoirs grounded me in a larger community of caregivers who all made mistakes, found new strength, lost sleep, felt guilty, laughed, cried, and maybe sipped wine. in their coffee cups.
“Stories save lives,” says Ann Campanella, a member of the leadership team at AlzAuthors, a nonprofit dedicated to sharing stories about Alzheimer’s disease and dementia. Before turning her own experience as a caregiver into the memoir “Motherhood: Lost and Found,” Campanella read a lot, and not just about Alzheimer’s disease. Citing Dani Shapiro’s ‘Slow Motion’ as a favorite ‘memoir of devastation’, she says, ‘I just wanted to understand how other people have gone 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 offers us a new perspective, giving readers the chance to understand the particular heartaches that come with the roles of spouse, partner, friend, sibling or of 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 moving first-person, nonfiction accounts of what it is like to live with Alzheimer’s disease.
Cohen’s memoirs on Beartown Road provided a valuable model of recovery. As I held her book and read her story, I began to see how the art of writing had helped her embrace her role as a caregiver and given her a space to reaffirm her identity.
“I’m an advocate of writing your way through these things,” Cohen says. “You go to a therapist and talk about your issues, and they give you 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 will help you forever.
I experienced a similar realization while writing my own memoir of my father’s decline. But, of course, you don’t have to write a book to find solace in writing.
“We teach journaling as a stress management technique,” says Jenny Peterson, 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.”
Recording the memories of a loved one from before their illness can help us remember that despite the illness, this person remains a unique person. Working on my own memoir gave me a chance to write my father to life. I didn’t want to leave him in this place of unraveling. I didn’t want to let Alzheimer have the last word.
A similar urge prompted Michelle Memran, the 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 centered on discovery and sensory memory. Memran found the playwright’s “moment-by-moment” approach essential both as a caregiver and as a filmmaker. “You learn the best way to communicate and the best way to collaborate, and take inspiration from it and follow it,” she says. The challenge of making the film was “not to talk about the disease, but about a person’s full, lived experience while preserving their identity 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 testament to the idea that life does not end with a diagnosis of Alzheimer’s disease. The film is full of joy and the unstoppable strength of Fornés as a creator and teacher.
“When you are a caregiver, how do you come home with curiosity on a daily basis? Memran wonders. “There’s so much we can learn from novels, poetry, creative non-fiction and film that might not be in an instruction manual. Maybe the instruction is that you need to approach it from the side.
In the two decades since my father died, my role has changed from daughter to parent. I continued to add Alzheimer’s memoirs to the shelves my husband once called my “grief library.” 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 a reminder that, just like the pandemic, Alzheimer’s disease observes no frontier. Other shelves in the house are filled with travelogues, motherhood stories, investigations into our natural world and still, 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 come together, we could resume a conversation that has already begun.