Dementia Is a Place Where My Mother Lives. It Is Not Who She Is.
This beautiful essay was first published May 8, 2023 in The New York Times Opinion Column.
By Suzanne Finnamore
Suzanne Finnamore is a novelist and memoirist who lives in Oakland, Calif.
On a recent Sunday, I brought my 86-year-old mother, Bunny, a tremendously gaudy fake pearl ring with an elastic band. She loved it. Rings are of great value to her now, as they can dazzle and are never out of reach. My mother has dementia, in its final stage. Each time I put the ring on her finger, it will be the first time.
Dementia is a land where my mother lives. It is not who she is. I think of it as an actual place, like the Acropolis or Yonkers. A place where beloved and ancient queens and kings retire, where linear time doesn’t exist and the rules of society are laid aside. Whenever I go to my parents’ double-wide in Hayward, Calif., I am really traveling to Dementia.
Thinking of it this way allows for magic to happen — for her to remember my name suddenly and to know my husband — and for there to be a boundary between me and the treacherous drop of despair. Each time I go to see her, it’s different. I’ve learned to set expectations aside, like an umbrella on a sunny morning.
My mother was diagnosed with dementia almost a decade ago — one of the nearly 10 million people worldwide who receive that news each year, joining the 55 million others who are already facing the same cruel reckoning.
Before her migration to Dementia, her voyages were no less fraught. Born Olga Irizarry during the height of the Depression in Mayagüez, Puerto Rico, my mother has always been a survivor. It’s her dominant feature, in the same way some people are tall or good-looking. At 2, she was abandoned by her mother. Unacknowledged by her father, she was taken to New York by her paternal grandmother.
There she spent a month in a hospital, beset by worms and malnutrition. After being discharged, she sprang forth like Lazarus to begin her new life in Manhattan, exuberant in corrective shoes and homemade clothing. She was raised by her abuelita’s childless daughter, Sarah, who renamed her Bunny. When she was a child, the city was Bunny’s wonderland; her adoptive father, Ferdinand, photographed her often as she gazed into the camera with a beatific smile.
By the age of 30, Bunny was living in a rented apartment in California with two children. It was 1967, and her husband would soon leave for a life free of domestic shackles. Without child support, my mother put on a suit from Goodwill, got a secretarial job and met the love of her life, Ron, a man eight scandalous years younger. Thirty years later, they retired to a senior mobile home community, set for life. Then, when she was in her 70s, something in my mother’s brain shifted or short-circuited or just evaporated, and she landed in her new country.
My mother is bedridden but roams freely nonetheless. Having forgotten how to walk, she is still able to travel in her mind, which is full of holes but rich with memory pockets. She gets to keep the early ones, the good ones: her enchanted childhood in New York in the 1940s, her beloved abuelita, the adoptive parents who cherished her. Her little dog, Tapsy, that she wandered Central Park with. The day she heard screaming out her window on Second Avenue and looked down to see a young Frank Sinatra amid a profusion of dazzled teenagers.
Sometimes she completely loses touch, is unreachable. In Spanish there is an expression for this: ni de aquí, ni de allá — not from here, not from there. It’s the national motto of Dementia. She meanders, an invisible suitcase at her side. A citizen of the wind. Yet she always returns, and it is always thrilling, a resurrection.
In 2017 my husband and I moved to Oakland to be near her and Ron, her primary caregiver. I see them twice a week, to visit and clean the house. It can be beautiful. It can be grim. I have learned to ask for help. I found a skilled grief therapist. I’ve grown closer to my husband, Tom, who has helped me bathe my mother.
After the initial shock at what illness had taken from her and Ron, I saw that surprising things remained. There were unexpected gifts. I’m grateful that she’s been able to stay in her own home, to keep living with her husband, instead of moving to a nursing home, where her life expectancy would have likely been far shorter. And the more time I spend in Dementia, the more I pay attention to my own mortality. I prize this and have rearranged my priorities to include less screen time and more joy in experiencing the real world, putting nothing off.
My mother was recently approved for home hospice care, and her nurse and chaplain are unspeakably kind. They are teaching me about the beauty of dying on one’s own terms, surrounded by family. They are showing us how to let go.
When Bunny travels in her mind, she sometimes takes me along. She demonstrates her own version of what Einstein knew, that time is indeed relative, passing at different rates for different people.
She asks after my father, gone 44 years.
“Dad’s not here right now, Mom. But he’s fine.”
I’m pleased to speak of my father in the present tense. Visitors to Dementia know that everyone is fine, no matter how long he or she has been dead. There’s a wonderful economy of souls happening here, where no one is actually gone and all are comrades on the road. For years, I explained to my mother who was alive and who wasn’t, but ultimately it dragged down the conversation.
In Dementia, as in all places, there’s the actual suffering, and there’s thinking about the suffering, which is optional and ill advised. My stepfather is adept at following this advice. He accepts what’s happening in a sanguine way common to his generation. I spend time feeling sad, but I spend more time feeling awe-struck by the strength that he and my mother exhibit daily. I urge him to please call me first when he needs help.
“Help with what?” he says.
My mother has taken all the essentials with her to Dementia. Her eyes are hers and her lustrous white hair. Her spirit is still elegant. If she doesn’t hear you, she’ll say, “I beg your pardon?” in the same lilting, gracious tone she used throughout her life. Somewhere inside lies a sacred core, untouched, an essence patrolled by sentinels of light.
And if that’s true for her, it’s true for everyone.
Living in Dementia isn’t the defining chapter of her life. The terrain here runs inexorably and swiftly downhill, but for my mother, this seems only to make her hair fly behind her like a commemorative flag. She remains mostly cheerful, herself. I take notes, for when my own demise comes. This is how it’s done.
There is dignity in Dementia if we say there is. There is wisdom and humor and radiance if only we can see it. I make the effort because my mother does and because it is what she deserves after a long life well lived, harming no one. I am astonished by her courage, even now. Especially now.