This week's episode of White Coat, Black Art is a quite a departure from my usual routine. My mission on the show is to give you a picture of health care from my side of the gurney. But this week, I'm doing something quite different. I'm giving you my perspective - not so much as a doctor - but as a son. Every five minutes, someone in Canada is diagnosed with Alzheimer's disease. My mother taught me how to look past the almost ghostly presence of patients with Alzheimer's disease. Too bad she had to become a patient herself for her doctor-son to finally learn. On this week's show, I tell you what happened the day my mother wandered from home. And, we share painful stories you told us.
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When I was a medical student in the late 1970's, my professors filled my head with the latest medical knowledge. Attitudes towards patients were something else. I learned those from the interns and residents who showed me the ropes on the wards and ERs of Toronto's teaching hospitals. It was an age in which technology - everything from gastroscopes to computed tomography (CT) scans - was starting to trump the touchy-feely side of medicine.
If you were a med student or resident back then, The House of God, a satirical novel by Samuel Shem, was the book to read. Published in 1978, The House of God told the story of Dr. Roy Basch, a naïve yet earnest intern working at an ultra-competitive teaching hospital in Boston. Like me, Basch feels completely unprepared for the job. A senior resident named The Fat Man, a wise young man who plans to become gastroenterologist to the stars in sunny California, befriends him.
Fat Man teaches him what he calls the Laws of the House of God - a code containing 13 rules by which interns and residents can survive the gruelling hours and the loss of their own humanity and that of their patients. Every MD of a certain age can still recite the Laws. To me, the first is the most telling. It states "GOMERS don't die." For the uninitiated, GOMER is an acronym, which means "Get Out of My Emergency Room." According to the book, a GOMER is any patient who is frequently admitted with complicated but uninspiring and incurable conditions. Unofficially, the name refers to patients with dementia.
Think of that so-called law as the flip side of the more widely known aphorism "Only the Good Die Young", the title of a song by Billy Joel released just one year before The House of God. That GOMERS don't die seemed to imply that instead of dying when they're supposed to, patients with dementia could magically resist all forms of internly incompetence if not attempts at out-and-out euthanasia. Long experience as an emergency physician at Mount Sinai Hospital tells me that GOMERS can and do indeed die.
The book, with its 13 laws, captured an uncomfortable truth: patients and the physicians, nurses, and other health professionals who care for them were on opposite sides of an unbridgeable divide. To us, patients with dementia were the enemy, consuming precious medical resources without any hope of recovery.
Nowadays, sociologists call that medical ageism, and it's rampant in health care. Researcher and cardiologist Dr. David Alter, a Senior Scientist at the Institute for Clinical Evaluative Sciences, did a study looking for discrimination in heart testing and treatments based on gender. Instead, he found discrimination based on age.
In my early years I the ER at York Central Hospital in Richmond Hill, and later at Mount Sinai Hospital, I never questioned my attitudes towards people with dementia. Basically, I just ignored them. Sometimes, I treated elderly patients with dementia like furniture. Most of my colleagues did likewise. If nurses spoke to demented patients, it was often in a condescending tone of voice.
In my early years of emergency medicine, I never once questioned my own practice. As the volume of patients increased, I began to feel more justified in giving demented patients short shrift. To me, the senior tsunami of older patients that health policy experts keep telling us about means more stress on the system and more compromises, right? Then, something happened to change my worldview of elderly patients with dementia. My mother Shirley became one herself.
Like her three siblings, my mother went to Clinton Street Public School in downtown Toronto, then on to Central Commerce Collegiate. The Great Depression and the fact my mother was a daughter and not a son kept her from getting a higher education. Her destiny was to finish school, find a job, then a husband, and then raise a family.
But my mother also loved letters and words. At Central Commerce, she learned book keeping, shorthand, and penmanship. Not just any script, and nothing like the doctorly scrawl that I write with today. My mother learned exquisitely beautiful penmanship taught by Joseph J. Bailey, author of The Bailey Method of Penmanship, and known as one of Canada's most well known penmen. She became a bookkeeper and then married my father Samuel, the love of her life, stopping work just long enough to have my sister and then me.
My mother was quite the looker. Still is. In the early 1960s, she had an uncanny resemblance to then First Lady Jackie Kennedy; the same steely eyes, wide prominent cheek bones, smooth skin, and short dark hair that was topped with stylish pillbox hats.
She channelled her love of words into hobbies. She was addicted to crossword puzzles and the original Jeopardy, hosted by Art Fleming. She had an intense competitive streak that she passed onto me. If she couldn't succeed in the world of letters, I would do so in her place. As a Grade six student at Summit Heights Public School in north Toronto, I wrote an entry in the district's public school competition. My mother mercilessly corrected my grammar and diction. I hated it, until I took first prize at school. I was hooked on glory, as my mum was to basking in it.
She and I always had an almost telepathic bond. I was probably the only ten-year old who made percolated coffee for his mother. "We dig each other," she would often say. Often, I found the closeness suffocating. It took me forty years to see it was the key to unlocking her fraying intellect.
It was that drive and competitive ambition with which my mother filled me that propelled me to become a physician. When the urge to write became too powerful to ignore, my mother supported me. I left residency after only two years to learn how to write. In the eighties, I attended The Skills Exchange, where writer Larry Solomon taught me how to pitch stories to magazines and newspapers. My first call to an editor at the Globe and Mail resulted in my first assignment. That's what I call hitting a home run in my first at bat. Had the editor said no, my writing career might have ended right then.
But there's another part to this story. I had a newspaper assignment, but there was only one problem. I didn't know how to type. I wrote that first article in longhand, and my mother typed it. In that way, my mum played a pivotal role in my first article and in my writing career.
Words and diction meant everything to her. Once, she heard a friend refer to those medical miracles that cure infections as "anti-I-botics". Tellingly, she repeated the mispronunciation to again and again to my sister and I, laughing each and every time she said it. Lesson learned. Improper use and pronunciation of words is a ticket to being mocked and disrespected.
I used to tell her stories of the articles I wrote and the people I interviewed. But as the 80s rolled on, her calls became less frequent. Once, I invited her to have lunch with me on my birthday, but she cancelled, saying she had a headache. Then, the calls stopped. At first, I thought she was angry with me, or in one of her periodic dark moods. It was only years later that I figured out she stopped calling me because she forgot my phone number and was too proud to ask for it.
The first thing I noticed was that her rich, incisive yet textured tongued withered and died. She and my dad came back from their annual trip to Palm Springs. I asked her how it went. "It was easy," she said. She said that phrase four or five times in a single conversation. Her eyes looked like she was searching for something sharp to say, but she kept coming back to the same stock phrase.
A few months later, my mum was diagnosed with Alzheimer's disease.
After that, I visited the family home frequently, yet I spoke less and less to my mother, as I focused on my dad and his despair at my mother's decline. I missed her words, but couldn't find a way to connect with her. It was as if my mother had died. It's that way when you haven't had a decent conversation in more than fifteen years. If not vacant, she was on a very slow departure from our lives. Her powerful intellect failed as if being drained drip by drip from an open sink at the bottom of her brain - like babyhood in reverse.
Fifteen years passed by in a blur all except for that one horrific day when she went missing. Around noon on a Sunday, while my dad wasn't looking, my mum grabbed her coat, grabbed her hat, slipped out the front door, and started walking. She must have looked like she knew what she was doing, for nobody stopped her.
The first I heard of it was when my partner Tamara and I returned home from brunch at my sister-in-laws. My neighbour told me the police had been looking for me. By then, it was three-thirty p.m., and my mother had been missing for more than three hours. The family gathered at my father's house. He was well into his eighties at the time, and feeling ashamed that my mother had slipped away. I drove aimlessly around the neighbourhood, not really knowing where to begin searching. The trail was cold, nearly four hours old.
Though it was 5 pm, it was early September, and there was still plenty of light left in the day. But my restless mind could not stop asking what we would do if we didn't find her before darkness fell. It was the only time in my adult life that I really truly on the verge of panic.
Fortunately, a neighbour came by to say he thought he had seen her. Tamara and I tore off in our car, this time having a place to begin looking. We did a painstaking grid search, driving slowly street-by-street, from east to west, before heading south to check the next block. Half an hour later, while I drove, Tamara spotted her walking on the right side of the road, still clutching her purse, walking with a purposeful look on her face. I hugged my mum and got her into the car. She couldn't speak, but I could see by the look on her fact that she was embarrassed for the trouble she had caused. She had wandered more than four kilometres from home. In truth, we got lucky.
A few years later, my mother developed shingles and stopped eating. She became severely dehydrated and was admitted to the hospital. It was there that finally, I re-established a bond with my mother, through the intimate, loving and nurturing act of feeding. Like my own two children, who were fed by me not too many years ago, I've learned that when I feed my mother a meal of pureed food, it's she and I and nobody else. I make faces and she smiles. I furrow a brow and she cocks and eyebrow. Sometimes I sing to her
And she listens.
Reconnecting with my mother has changed me as a physician. No more do I rush into the cubicles of people with dementia. I introduce myself to them. I talk to them. If they're accompanied by grown up children, I talk to them too, sharing my wisdom, and giving them space to share their pain.
I'm sorry it took a personal experience for me to be a better doctor.
But that's life.