What One Author Learned From Her Mother’s Struggle With Dementia
Dementia took the mother she’d known. But, writes Janet Fitch, it also brought unexpected tenderness to their broken relationship.
Let me introduce you to my mother. A woman who had a long career in politics, a person never much interested in family or personal life, controlling and tough as they come. Alma Fitch had many good points—she was creative, a reader, articulate, curious about the world, and funny as hell—but she was a poor match for me, a volatile, intense, and imaginative child desperate to be understood. Someone once asked her what she remembered of my childhood. She was embarrassed to admit she remembered nothing but how angry I always was.
Luckily, we lived long enough to see our relationship warm into a cordial truce, even appreciation. She was proud of my writing, my parenting of her only grandchild, and I admired her savvy, her many accomplishments, often firsts for women. At 81, she was still working.
The last thing we expected was dementia.
It started with unpaid bills. Medication untaken. Confusion between the cell phone and the kitchen cordless. She’d taken care of my Alzheimer’s-stricken father at home with round-the-clock help and didn’t want to repeat that sideshow. Once she decided to move into a retirement home, she never looked back. That was quintessentially Alma, never one to linger over the baby pictures.
It took me a full year to decommission the house. Between a flooded basement, repairs, dry rot, carpenters, insurance, three escrows, plus 50 years’ worth of stuff, preparing it for sale proved the hardest year of my life. But it was also the first time my mother let me take care of anything for her. And she actually noticed what that cost me in terms of my time and my sanity, delays on my book. Her appreciation startled me. She demanded things of others but rarely noticed their sacrifices. I felt seen, and loved, in a way I hadn’t felt in 50-some years of being her daughter.
Now that she was free of the house, it became clear she needed something to do. Back in the '50s, she’d painted. She liked the art class at her new residence, and I asked if she’d like private lessons. She thought she would, so I arranged for the teacher to come work with her one-on-one. Her self-esteem blossomed. Word got around that Alma Fitch was an artist. She found a new self, something to be proud of, to look forward to.
She settled in well, but memory loss left her anxious, with a sense of things undone—telephone calls unreturned, letters unanswered. I decided to pitch in—help her write letters, call her old friends. I had long conversations with people who’d just been names to me. After all these years, I found myself a part of my mother’s ”other“ life.
One afternoon, she confided, ”I never expected you to take care of me like this, after how I treated you. I thought you’d get back at me.“ Pleasure and sadness surged through me with equal force. Grief that she thought so ill of me, even late in life. Pleasure that she finally saw me as I was.
By then she was becoming a new person. No longer my mother. I tended to call her Alma now. She even looked different. She’d lost weight, let her hair go white—unleashing a flood of welcome compliments. It wasn’t a bad time. People visited, she still conversed. How well the conventions of manners serve a person, that almost instinctive call and response. Her new greeting became ”Looking good, kid.“ But the time was also laden with panic and frustration. She called me saying she couldn’t breathe. I stopped everything and raced over, but when we got her to the doctor, she showed him her foot.
Eventually she had to move into a more assisted environment. She liked the place well enough but loathed their memory program—she didn’t play ”little games,“ she declared haughtily. Her doctor suggested the games actually might be too hard, and her refusal a larger revolt against the humiliation of decline. My mother was losing ground, and no memory game was going to prevent it.
I fought the next move—into the locked dementia/Alzheimer’s ward. It seemed like a failure. All my life I’d rebelled against my mother’s controlling nature. Now it was my turn to let go and accept things as they were. It was like learning to be a parent all over again—guiding with a tai chi hand, watching, pushing gently, and backing off, listening, allowing. And just like child-rearing, the situation was never stable; it was always on its way to becoming something else. To my surprise, Alma quickly adjusted to the ward and participated in activities with astonishing cheerfulness.
Our unexpected third act continued to unfold.
I don’t want to put a rosy glow on it. There were times she became so angry and violent that the staff had to wear armguards in case my tiny 87-year-old mother decided to slug them or scratch them. ”Stick it up your a—!“ she’d shout. But at the same time, our relationship went places that would have been impossible any time earlier. When the local Sonny and Cher look-alike band visited, I noticed Alma bopping in her chair. I helped her to her feet, and we danced, with her in my arms. After that, I began taking her into her room and putting on some Sinatra to dance to—something she would never have allowed if she had been ”herself.“ We played in ways we never had. She could catch a Nerf ball and throw it back, bat a balloon. I put ”makeup“ on her with big fluffy brushes, stroking her eyelids and cheeks, her arms. We could spend hours "getting ready." For what, who cared?
She’d loved music and now sang all the time, songs from childhood, jazz songs, showtunes. Her new lack of inhibition made me sad that she couldn’t have shared herself more with others when she was still compos mentis. But she’d had too much of a sense of her own dignity to allow it. She demanded a certain level of respect. It was dyed-in-the-wool, as deep as her still-beating heart. Yet in other ways she became unrecognizable. A working woman in a man’s world, she’d been cautious about her sexuality. Suddenly she was a flirt! What a shock, like seeing her as a teenager. I watched her hold hands with Don, a man who didn’t know who was president but could shout out a Scrabble word when asked for words beginning with s. ”Serendipity! Serengeti!“
Like many controlling people, she had never liked animals. But one Thanksgiving, a cousin’s shih tzu jumped onto the couch next to her. ”What a nice little dog,“ she mused, petting it, leaving me speechless. It made me wonder, What is a person? What happens when we stop remembering our prejudices and preferences, our opinions? How much of what we consider ourselves, our so-called character, is just refusal, decisions that keep us locked away from experiences that might otherwise enhance our lives?
By that time, Alma could no longer read, but she grew livid when I tried to replace her heavy tomes with picture books. ”Where are my books?!“ she demanded. I returned them but left a few children’s books I knew would be far more suitable. Such mixed emotions I felt reading The Cat in the Hat, the very book from which she and my father had taught me to read. I let the ducklings in Make Way for Ducklings cross Wilshire Boulevard to go to MacArthur Park, landmarks of our own city. The mother and daughter in Blueberries for Sal became her and me going blueberry picking together in Yosemite—a place we’d visited on our sole family camping trip.
”See, that’s you,“ I said, pointing to the book’s dark-haired mother, ”and that’s me,“ the scruffy little girl in overalls. ”Remember when we went to Yosemite and picked berries?“ And she nodded yes—she remembered! It was oddly profound. In reading that book, I gave myself the childhood I’d never had, and something broken between us was healed. In a strange way, Alma’s dementia had allowed us to be the mother and daughter we never were.
I made her a book of her own life, taking a one-inch ring binder and some sheet protectors and scanning pictures of her at various stages of her life, blown up to full page. Alma Brown, beautiful at 19 in her co-op house at UCLA. With Dad in front of their first house, with its spindly little tree. The two of them, extraordinarily handsome, in Hawaii in the '50s. My daughter artfully collaged the cover and wrote ALMA on the front. My mother adored that book. If ever she became agitated, the staff could take her to her room, put on some classical music, and give it to her, calming her immediately.
Eventually she became bedridden, but she still had her books and her music. When she was hospitalized, I brought over a boom box with a set of red headphones and put a big sign over her bed: KEEP HEADPHONES ON ALL DAY. JAZZ STATION OR CLASSICAL. A nonspeaking demented person in a hospital bed is too easily ignored. The lonely child in me understood: Music is the best companion.
Often I’d climb into bed with her. She’d long forgotten who I was, but the fact that I was lying beside her, reading to her—she knew I belonged to her somehow. Together we’d look at The Cat in the Hat or her book, which she had until she died. I can still remember my own daughter’s small hands on my face, patting my cheeks. My mother had no such memories of me, but I have many now of her, touching her, feeding her twice a day, as I was reasonably sure the busy orderlies would not take 45 minutes to feed her a pulverized meal. She liked salt and butter, and I added extra—why not?
In caring for her in such intimate ways, I found myself, in some mysterious transference, being parented. It turns out it didn’t much matter whether I was the parent or the child, the parent/child, or the child/parent. The closeness that had always been missing had been given back to us. When she died, I was reading to her from A Child’s Garden of Verses a poem I’d never read before, “Farewell to the Farm,” with a heartbreaking refrain: “Good-bye, good-bye, to everything!” I’d walked with her to the end, unable to stop anything from happening, but there. In the end, presence is everything.
About the Author
Janet Fitch is the best-selling author of Paint It Black and White Oleander. Her next novel, The Revolution of Marina M., is out now.