On the way to Albuquerque for a holiday with my parents, I bought a used audio version of Nicholas Sparks’s “The Notebook” at a truck stop outside Flagstaff, Ariz. Told mostly in flashback, the sentimental 1940s love story was diverting enough to get me through six hours of desert highway. However, it was the present-day narrative centering on a character with dementia that helped me take the first steps toward recognizing my father’s unusual anxiety, irritability and confusion as possible signs of something much larger.
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 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 his transformation, the narrator and the ape sit on the lawn together, ripping up the grass. Recognizing her lover in this creature, she mourns her loss 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.