The Toronto Star’s Frances Kelly writes an inspiring piece about Alzheimer’s, her father and laughs.
The toughest part is remembering the person he once was.
My father, Tom Kelly, has been abducted, held hostage by a terrible disease that has shattered the lives of so many whose loved ones have received that devastating diagnosis — Alzheimer’s.
Who is this man who can’t tell day from night and regularly wakes at 4 a.m. to belt out a top-of-his-lungs rendition of “Too-Ra-Loo-Ra-Loo-Ral” in his lilting Irish brogue? Who is this man, always partial to Irish tweed, who at 89 now marvels at Don Cherry’s audacious outfits, declaring them “absolutely smashing.” Who is this man who had long worked for Ontario Hydro but now can’t even plug in a kettle?
I have to keep reminding myself that somewhere beneath this unfamiliar, ornery facade is the father who had once been a joy to be around, always eager to have a laugh or sing a song or dance or raise a toast.
Alzheimer’s is a dreadful thing. It robs its victims of their dignity, not just their memory, and irrevocably alters their personality.
As my father’s caregivers, my husband, Peter, and I are witness to his relentless decline. When he first came to live with us almost two years ago, he would often tell stories about growing up in Ireland, about meeting my mother, Catherine, at a wake and their six-week courtship, and about joining the droves of his generation who went overseas to start a new life.
Now, there are occasional periods of lucidity in which he’ll rhyme off the names of his 11 siblings, but ask him to name his own children or grandchildren and he’ll draw a blank. He’s forgotten my mother’s name, or the fact they were married for more than 40 years before she died in 1996. And Peter, who makes his breakfast every morning, is simply “himself” or “that b—–d who feeds me.”
Peter, who is now in Lebanon on a project, only half-jokingly said he’d rather take his chances with Hezbollah than face my father’s wrath over the state of his breakfast. They don’t often see eye to eye, because my father can only see “I to I” — “I’m hungry, I’m thirsty. I’m tired.” A life reduced to the very basics.
My father can only see “I to I” — “I’m hungry, I’m thirsty. I’m tired.”
It wasn’t always that way.
My father embraced life. After he retired, my parents lived on a hobby farm near Havelock, where he would often go for a walk with his pet goat on a leash. He had a menagerie of animals, including a beloved white donkey that delighted in chasing the cattle around the fields. He also had a couple of ponies my mother called Charles and Diana — my dad would laughingly proclaim it was shameful for an old Irishman to be hollering out the names of British royalty.
My father would entertain my then-toddler kids by introducing them to the chickens, slipping eggs from the kitchen into their nests so they’d always have something to bring in to grandma. He would show them the wonders of what he called “magic mushrooms” — the giant puffballs we found in the fields that he said were home to the leprechauns. And yes, to my horror, there were leprechauns galore around the farm, plaster hardware store gnomes that would mortify adults as much as they’d charm children.
For my father, all memories of the farm have vanished. There’s no sign of recognition when I show him videos or photos of the old homestead. For him, it’s the here and now that matters most.
The seniors’ day programs he attends every day are a godsend, providing mental stimulation, exercise and companionship. The way my dad tells it, he spends part of the day “filling out forms” (bingo, actually). He’s always the first up to dance — even well into his 80s, he never went home to Ireland without a pair of dancing shoes in his bag. And he enthusiastically joins in the karaoke, humming the tunes all the way home.
Best of all, it warms my heart to hear his laughter as he jokes with the staff. Alzheimer’s has stolen many things, but not his sense of humour.
Years ago, while renovating our house, my father roared with laughter when he found a prosthetic arm hidden behind a wall, like a time capsule entombed by someone with an off-kilter sense of humour. Was it accidental? Was the owner a tad forgetful? We’ll never know.
Recently, in a modern-day twist to this hidden artificial body part story, my father, too, lost a prosthetic device — his dentures. A massive search of the house ensued, but to no avail. Maybe someday, many years from now, they’ll turn up, discovered by yet another hapless renovator, hidden beneath a floorboard or buried in the garden.
Perhaps, looking down from another place by then, my dad will be the first to chuckle.