On his birthday, my father tries
to eat osso buco with its tiny marrow-spoon.
He scrapes at the shank, a felled tree trunk
on his plate, raises the shreds to his lips
until we cry out, watching them spread
over the table like shame.
In 2006, my dad was determined to attend the funeral when his last living brother died. The problem was, Daddy, eighty-two at the time, suffered from cognitive impairment bad enough that for months I’d been trying to get him to move to my home in Tennessee. This trip he was intent on taking would have required a cross-country flight from North Carolina to California—maneuvering through airports, finding a hotel and driving unfamiliar roads in a rental car.
“Daddy, you can’t go out there alone,” I said, wedging the phone between my jaw and shoulder to free my hands for folding laundry.
“Well, why not?”
My youngest son Camron, was only ten years old—and he was feeling bereft, because he’d lost all connection to his friends. His iPad was on the fritz, less than a year after we’d purchased it.
Camron had yet to dive into the electronic age as his classmates had done. Mostly he played outside with his dogs and cats, fed and chased his goats and bounced on the trampoline with his brother. But during the one hour per day when we permitted him to play games online with his friends, he grinned from ear to ear and laughed nonstop.
Now his iPad had quit working.
to watch his memory falter,
fail. Light fades and falls. Dark
to watch his memory falter –
Cans of beans: gone. Toothpaste.
A shoe, bills, a sister –
to watch his memory falter,
fail. Light fades, and falls dark.
Collecting dust on the rustic wooden shelves above a sturdy workbench in my basement are models of history-making ships, spaceships and military fighter planes. There’s an enormous replica of the Space Shuttle Atlantis, complete with iconic NASA logo and a massive orange fuel tank nestled next to its launch tower. Not far off is a black-and-brown plastic replica of the forty-four-gun frigate USS Constitution, its hull held together by two gigantic bolts.
The last two years of my father’s life were interesting. Our previous roles were reversed: Dad was now the child, and I the adult. I moved him to a new city and state, getting him close enough to keep an eye on him. He was already suffering from dementia, a realization I came to after he had forty thousand dollars stolen from him.
That’s right. Forty thousand dollars.
In the first months of medical school, we’re taught that patient autonomy should be one of a physician’s guiding tenets. The doctor provides diagnoses, prognoses and treatment plans, but ultimately it’s up to patients to make decisions about their own care.
As a family doctor, I often tell patients: “Only you can know what the right decision is for you. I’m here to provide information and recommendations and then to support your decision.”
But over the past year, as my father’s memory deteriorated and his life drew to a close, I learned about the ways in which our medical system limits patient autonomy.
During his last months, my father said repeatedly, “My brain is in chaos.”
I had planned to take care of my dad at the end of his life.
In 2009, Dad retired at seventy-five because of Parkinson’s disease. Over the next couple of years, he lived in his own home. My younger brother Mark, who lived nearby, faced the first difficult milestones brought on by Dad’s declining health. Mark was the one to tell Dad that he could no longer drive. And after Dad moved out, Mark took on the monumental project of cleaning a half-century of detritus from the house Dad left behind.
“I long, as does every human being, to be at home wherever I find myself.” — Maya Angelou
Before starting my dive into medicine, almost four years ago, I was an avid violinist, pianist, disc golfer and novice chef. Each of these activities felt comfortable and familiar–like “home.” But when I began medical school, I somewhat wistfully set them aside to focus on becoming a doctor.
Francie Camper ~
City snow blankets my little mother in her hospital
bed in her bedroom, no wonder she is confused,
pointing to things in the air, on the ceiling that only
she can see. She might be hailing a cab. She raises
her head to tell me, Four members of the Isenberg
family came to visit and one was Mima Ettel,
who is already buried in the plot and she doesn’t
seem to know this. A land of the living and a land
of the dead, why should she have to remember
the difference? We paid a thousand dollars to move
her grandfather’s monument to make room for her.
Lou arrived alone when she’d come for her blood pressure and itchy skin. Sharp, funny, she told me of her daughters, grown up and far away, and her life in the neighborhood as it changed around her. She had lived there for decades, long after her husband left, long after raising two on her own, long after the cottages around her were torn down for industrial sites. Neighbors were scarce and stray dogs plenty.
When her daughter arrived with her, I knew something had changed. Having driven sixty miles to bring her, Lou’s daughter was here to report on the increasing forgetfulness, the neglect of her garden. She was worried her mother was developing dementia and wanted her to move closer, where she could keep
