(SilviaJansen via iStock)

Everything my mom remembers: Our love and memories, her Alzheimer's

When my hippie, playful mom was diagnosed with Alzheimer's, our family was what really changed


follow us in feedly
Diana Whitney
September 5, 2015 3:00AM (UTC)

When my mother fell off the stone wall, I was dancing under the wedding tent to “Twist and Shout.” It was the photographer who saw her wander through the hemlocks where the tiki torches had burned out, heading down to the house. She went over the wall in her mother-of-the-bride sheath, indigo silk crumpled in a bed of pachysandra.

By the time they set her up with a bag of ice on the couch, she’d already altered the story, claiming she’d slipped going down the garden stairs. Her tone was light and joking, mocking herself to hide the vast confusion underneath. The August night betrayed a hint of chill, bittersweet scent of summer ending, even as my sister cut loose in her beaded white gown and the luminaries flickered in my dad’s memorial garden where the mountain stream had dried to a trickle.

Advertisement:

“I’m sorry,” said the memory specialist when she confirmed our suspicions of early dementia. Mom had been getting lost while driving, stopped using email, struggled to work the coffee maker. Just before Christmas, my siblings and I had crowded together in a tiny office to hear the test results.

“The first stage can last up to eleven years,” Dr. Marshall continued, her voice warm but matter-of-fact. “Given that your mother’s in good physical health and has strong family support, we’d expect her to fall toward the latter end of the time frame…”

Then she urged us not to use the word “Alzheimer’s” around Mom — what was the point in distressing her?

After the appointment, I made Mom a tuna sandwich, which she tried to give away in a familiar pattern of self-deprivation. I didn’t pray for a cure, only acceptance. Nothing could be reversed, the doctors said. At this stage we could focus on providing good nutrition and preventing isolation; we could build her support network and encourage her to exercise. We could try to keep the winds of her anxiety at bay.

In the years before the diagnosis, we assumed Mom was suffering from depression mixed with grief, a spirit that had broken after my father’s fatal heart attack. “I feel old,” she’d say at family gatherings, her four athletic children and their spouses glowing with health, a few energetic grandkids underfoot.

“You’re not old, Mom — you’re only 68!” we’d protest. “Think of Jane Fonda, think of Keith Richards!”

She’d been the most youthful of mothers when we were growing up, sporting cut-off jeans and a Peter Tosh tee-shirt, her long red braid swinging down her back. She danced in the kitchen and played Beatles songs on her guitar. Later, she drove us to ski practice in the battered Suburban with the MAGIC HAPPENS bumper sticker, Paul Simon’s “Graceland” or Jimmy Cliff’s “The Harder They Come” blasting as we snacked on cider doughnuts and dared her to pass slow trucks in the climbing lane. We laughed and called her “Leadfoot,” then glided off into the woods on our Nordic skis while she waited at the lodge.

“I feel old,” she told us, and after the diagnosis I stopped arguing. She wasn’t elderly, but her brain cells were hardening to a tangled mass of plaque, a sticky skein we could never unravel. I’d once made the mistake of googling “Alzheimer’s,” seen the photos of brains shrunken and dried up, dark as old walnuts. Over five million Americans lost their minds this way, their personalities slowly fading, fragmenting. I understood the anatomy of the illness, but sometimes it seemed like a side effect of her broken heart.

Advertisement:

What endures when memory slips away? Religion professor Gisela Webb calls Alzheimer’s “the great unlearning …  because it is clearly an unraveling of mind, language, and former knowledge.” If so, then we must unlearn the world along with our mother, find new ways of interacting, let go of the woman she used to be. But Webb also believes, through the experience of caretaking her own “Alzheimer’s mother,” that “there is a center, or centers, of apprehension and experience (such as humor, intuition, and emotion) clearly intact much longer than mind and language.”

Mom still remembers our names, but not our ages. Her sense of humor remains unscathed, even as she struggles to find words for her ideas. During one visit, she chatted cheerfully with my brother on the phone before hanging up and trying to tell me his plans. Vague fragments of meaning began mid-thought, hesitated and looped into an inscrutable riddle.

“I’m sorry, Mom — I have no idea what you’re saying,” I said.

She stared at me, puzzled, then laughed, the old humor brightening her face. “Well, that’s okay, because I understand it.”

Advertisement:

*

Mom’s foot had been fractured in three places when she fell off the wall, and she could not learn how to navigate crutches. When I came to see her, she sat sunken on the couch in gray sweatpants, fading to ash before my eyes. "The Goldfinch," the book she’d been “reading” all summer, lay beside her, but mostly she passed the hours watching Brit-coms on her iPad.

I steered her wheelchair down the dirt road, sun on her face for the first time in days. The September light was still strong, and a flag maple blazed orange against the fathomless blue sky. “Look,” she said, delighted, pointing up at the flaming leaves.

My daughters ran ahead, eager to get to my brother’s farm where they were slaughtering young pigs for a fall wedding. The intestines slid glistening into five-gallon buckets; two emptied-out carcasses hung on hooks. Removed from the carnage, Mom sat in her chair in a patch of sun. I thought the girls would be frightened or disgusted, but they were mesmerized by the entrails, the hidden organs revealed. I was the one who wanted to leave, the smell of raw flesh prickling my nostrils.

“Trust the process,” Mom used to say when I was stressed out in high school or college — her favorite sixties mantra. She was a hippie chick who went to Woodstock, got married barefoot in 1969, smiling in a crown of cornflowers beside my father with his mutton-chop sideburns and purple silk tie. I’d always loved that photo, one of the few taken at the backyard wedding where their photographer friend got too stoned to shoot film. We grew up with a romantic vision of our parents’ marriage, and it lingered now despite death and disease, haunting us like a nostalgic ghost.

Advertisement:

What if the past was inextricable from my love for her? I wanted to relax with my mother in the moment, the ongoing present-tense of her altered self. Trust the process. Magic happens. I wanted to believe her bumper-sticker wisdom, but I feared the remote look that clouded her eyes sometimes, as if a veil had dropped. “I’m so scared,” she told me one night at bedtime, and all I could say was “I know, I know.”


Diana Whitney

Diana Whitney’s first book, Wanting It, became an indie bestseller and won the Rubery International Book Award.

MORE FROM Diana Whitney

BROWSE SALON.COM
COMPLETELY AD FREE,
FOR THE NEXT HOUR

Read Now, Pay Later - no upfront
registration for 1-Hour Access

Click Here
7-Day Access and Monthly
Subscriptions also available
No tracking or personal data collection
beyond name and email address

•••






Fearless journalism
in your inbox every day

Sign up for our free newsletter

• • •