At a recent religious service I attended with Maman, my 87-year-old mother, I watched her fumbling attempts to find hymn number 123, "Spirit of Life," in the hymnal. I held my book up, opened to the appropriate page, so that we both could sing from it.
She glanced up momentarily, tightened her lips, hunched forward and resumed turning pages, finally arriving at the song when the congregation was singing the second verse, which she needed help finding--what with her poor vision and the swirl of notes and words on the page.
As this ritual repeated itself, hymn after hymn, it occurred to me how much cozier it would be if my mother and I could share from the same hymnal.
It also struck to me how unlike Maman that would be. Her need to do things independently--and the improbability of Maman reciting from someone else's page--capture in a nutshell the difficulties we've experienced with her aging process.
Maman was born in Belgium in 1922. She lived through the Nazi occupation before coming to the U.S. Of her five siblings, only one sister remains.
My father died seven years ago after a lengthy battle with prostate cancer. His death left Maman alone, isolated and without her prime purpose in life--caring for, cajoling and trying to exert her will over my dad. He played the immovable object to her irresistible force. Without another person upon whom to focus her indomitable spirit, she seemed to lose energy. And showed increasing signs of forgetfulness.
A couple of years later, Maman had an explosive falling out with her closest friend in the world, her remaining sister, in a Walmart in Florida. They've rarely spoken since.
She started getting lost en route to our house. Eventually, after a traffic accident, she mercifully gave up driving--without ever acknowledging a reason.
As she started to slide, we pleaded with her to plan ahead. "I'll cross that bridge when I get to it," she said. Then, one day, there she was, on the bridge, swaying above the chasm.
She lost her wallet on a bus, but couldn't remember what bus it was, why she was on it, or even that she'd been on a bus--and then lost the piece of paper with the phone number of the good Samaritan who'd found her wallet.
While out walking, she fell on the sidewalk and broke her nose.
She'd call my brother Eric--an internist with a large geriatric practice--weeping. "I'm lonely." The next day she'd insist that she wasn't lonely at all, that she couldn't remember calling him and that she was never bored and "happy as an angel."
Her circle of acquaintances shrank: A neighbor who'd occasionally stop by. Her building doormen. And, most critically, Sandy--"Poochi!"--an outgoing miniature Chihuahua that Eric gave her.
Through all this she responded with outbursts to any attempts at discussion.
"I'm not lonely! You think I'm crazy! You want to lock me away! If you do I'll throw myself from the roof!"
On my family's weekly visits, I'd survey her refrigerator.
"There's no food here," I'd say.
"That's all right," she'd answer. "I can go out any time I want."
"What did you have for lunch?" I'd ask.
"Oh, I don't know," she'd answer dismissively.
The irony--two physicians with a mother who was living alone, poorly nourished, with no memory to speak of (who knew if she was taking her pills?) and at high risk of falling--was not lost on Eric and me. And yet we wavered in the face of her fierce will, electing to wait until some disaster--a broken hip, a stroke, an accident crossing the street--suddenly and irrevocably changed the equation.
But something else happened. The tectonic plates continued to shift, further eroding her memory and her fight.
During a recent month-long stay with Eric upstate, he tried to interest her in an assisted care facility, with predictable results. But then, eyeing her diminishing faculties, he also refused to take her home.
And we held our breaths.
The furious assault she might have launched a year ago never happened. It was as if her army's tanks had rusted, the soldiers were tired and, most critically, the generals were too distracted to care that there was a war on.
Maman is now staying with us for the month of November. In December she'll return to Eric's house. She is sleeping on our ground-floor living-room sofa, having tumbled down our stairs a year ago. "But I never fall," she says, when we discuss the stairs with her.
Our daughters' former caregiver Marie is now back, looking after Maman several hours a day. Even as they go out for walks or sit on the couch watching a Fred Astaire-Ginger Rogers movie, Maman thinks Marie is only here to tidy up the house.
Much of the time she's typically hyper-cheerful, laughing at Sandy's antics ("Come on, Poochi!"), her blue eyes bright and a little blank, her blonde hair now straw-like. She wears the same clothes for days on end. When she smelled of pee one day and I suggested that perhaps Marie could help her with a bath, she glared at me. Later that day, with a tight grip on the railing, she inched up the stairs--alone and muttering--to bathe.
In the evening she becomes sad and disoriented. I've come upon her sobbing.
"I'm lonely," she says. "I wish I could go to sleep and not wake up. I'll take Sandy with me."
At night, I find her emptying out the wrong kitchen cabinet--peanut butter and jam jars on the counter--in a futile search for tea.
"Do you find that you get a little confused in the evening, or that it's harder to remember things?" I ask her.
As I head upstairs to bed, I hear her poking around the kitchen, removing dirty dishes from the dishwasher, "cleaning" them and putting them away in the cupboard, where we'll find them, still slippery with grease, in the morning.
"Frying pan...frying pan...frying pan..." I hear her whispering.
The ground is constantly giving way on this journey. We now find ourselves on a stable ledge. But what will the next tremor bring? Wandering? Another fall? A more furious outburst?
Given that my brother and I are doctors, it's ironic that the medical profession rarely enters into our discussions. Maybe it's because neither of us thinks that physicians have much to offer at the moment; in fact, we seem to agree that the best we can do medically is to keep Maman out of the grips of a hospital, where she would only get worse.
What ails Maman is beyond tests and medicines. Just like her last bit of retained memory--the one that says, "I don't need any help!"--that won't show up on any scan.
"I'm glad you're here," she says, hugging me one night in our living room. Then confusion flickers across her face. "You're not going home?"
"No, Maman, we're staying here tonight with you."
About the author:
Paul Gross is a family physician and founding editor of Pulse--voices from the heart of medicine.