‘I can’t remember anything’
Boldly marching on after Alzheimer’s diagnosis
It’s 7 a.m. on a Sunday when the brisk electronic ring punctures my sleep. “Hello?” I say, groggily reaching for the phone.
“Son?” I hear a familiar rumble on the end of the line. “It’s your dad.”
I turn to Alicia. “It’s my dad.”
She looks confused: “So early?”
“We need to have a meeting,” he continues, a tinge of anxiety in his voice. “The writing is on the wall. I’m calling you because you’re the oldest.”
I turn to Alicia: “He wants to have a meeting.”
She sighs heavily: “Again?”
This, of course, is the exact same conversation, almost word for word, I’ve been having with my Dad every two weeks — and lately, every two or three days — since he was diagnosed with early stage Alzheimer’s almost a year ago.
“He’s like the fish in ‘Finding Dory’,” I tell Alicia. “The one with short term memory loss who keeps forgetting her parents.”
We had noticed memory issues before this, going back two or three years, that at the time seemed inconsequential, but were red flags in retrospect.
First, he couldn’t figure out how to navigate the streets between me and my brother, who lives a few blocks away, which struck me as odd since he never had a problem with directions before.
I wrote them on a piece of paper. He called a few minutes later, hopelessly lost. I explained it patiently. Still confused.
Then there were our annual cottage week treks to Lake Huron.
Would my Dad like to come along? He’d be delighted. Great, see you there.
As we packed up the night before, the phone rang.
Hello? I can’t make it. You can’t make it — why not? I’m not up for it. How about driving up for a few days? No thanks.
And then came the fateful dental operation: four wisdom teeth yanked under anesthetic that saw him wake up in a fog that didn’t quite lift.
“Must be the painkillers,” I mused.
“He’s usually pretty good about this stuff.”
But in retrospect, this was it: The Moment.
As my dad’s natural good humour and sense of adventure began veering in and out of focus, as if peeking from behind a dark cloud, questions emerged.
Was it a concussion? A hearing issue? Natural aging?
When the email came from my sister-in-law saying he had been diagnosed with early stage Alzheimer’s, I was in shock.
Alzheimer’s? No way. Sure he forgets a few things here and there — who doesn’t? He’s 85.
My wife, a psychologist, was less surprised, having noticed subtle shifts in personality a few months earlier; forgetfulness that seemed atypical, repetition of the same anecdotes, a creeping anxiety about things we hadn’t noticed previously.
But she doesn’t know my dad like I do.
He may be 85, but he’s one of those guys who never really left middle age — young in body and spirit, eager to go biking, swimming (a gold medal winner at North York’s senior games), tobogganing with the grandkids, five-kilometre hikes, meeting people, joking around.
I always viewed him as a cross between Bob Newhart and Dick Van Patten — with a touch of Dagwood Bumstead — a lovable schlep whose kids used to lock him out of the house while he pounded haplessly on the door.
“Lemme in. Come on, guys — I’m not kidding!”
I took a closer look. Sure, there were some memory issues, but to me, he was the same dad I had known for 56 years; charming, good-natured, happy to be the butt of everyone’s jokes.
“Alzheimer’s?” I said, in disbelief. “It doesn’t make sense.”
The truth, further research revealed, is that 11 per cent of people over 65, and one third over 85, will get Alzheimer’s, numbers that spike even higher if you factor in other forms of dementia.
My dad is simply one more statistic in a disease that has no known cause, no cure, and a medical trajectory that reads like a Stephen King horror novel; erosion of memory, failing cognition, loss of bodily functions as you descend into a murky twilight from which there is no return.
“Alzheimer’s disease is a fatal, progressive, degenerative disease of the brain, where brain cells continue to die over time,” reads the clinically impassive description that popped up during one late night Internet search. “There is no cure and eventually the body will shut down.”
“Shut down?” I turn to Alicia, aghast. “What the hell does that mean?”
But as a kid (one of three) charged with power of attorney, you can’t wallow in self-pity. Really, it’s not about you.
I got that much from watching Glen Campbell’s taboo-busting Alzheimer’s doc, “I’ll Be Me,” which opened to critical raves a couple of years ago.
It was heartbreaking, but in some odd way inspiring to watch the famed country star’s battle — they always use that word “battle” — against the fatal disease ravaging his brain.
On one hand, here was a proud, independent music legend who — faced with a devastating diagnosis — boldly launched into a farewell tour knowing it would be the last time he graced a concert stage.
On the other, you could see in interviews that his memory was slipping, words were losing meaning, confusion closing in, that his bravado was a sham.
Still, he could get on stage every night and belt out “Rhinestone Cowboy” and find joy and a sense of purpose.
That’s my dad. Not a quitter. Not a complainer.
A guy who, like many of his generation, doesn’t dwell on the negative, stoically accepts what life tosses his way and boldly marches on.
“I’m not depressed,” he told me during a frank conversation about his diagnosis. “Alzheimer’s is something that comes on gradually, so it’s not devastating. I’m happy with myself.”
Well, except for those phone calls.
“I can’t remember anything,” he confided a few days ago, aware his memory issues were getting worse.
“Did I call you about this already? Three times? … (anxious pause) … I don’t remember. Did I ride my bike this morning? It’s like a fog.”
The bottom line is always the same: Call your siblings. We need a meeting. The time has come. Ah, siblings. I love them, but they’re a pain in the ass, just like me.
How long has it been since I had to deal with this motley crew of ticked off misanthropes — I say this with affection — on a regular basis? During the Carter administration, I think, or America’s bicentennial, on our annual car camping trips to Florida’s Key West to spend time as one big happy family.
Ha, ha. That was the dream.
The reality was that with so many strong willed personalities jostling for dominance, so many competing agendas, we basically wanted to kill each other.
Barrelling down the 1-75 in the family Suburban with my sister wedged in the front seat, sans seatbelt, my brothers engaged in territorial disputes over armrests, The Carpenters blaring on the car’s 8-track, things would inevitably descend into rancour and chaos as my dad leaned back with one hand on the steering wheel and attempted to strangle whoever was closest.
“You kids drove me crazy,” he would tell me years later. “But I did enjoy those trips.”
And suddenly, here we are, 22 years after our parents split, five middle-aged adults living in three cities, spouses in tow, posed with the uneasy question, “What do we do about Dad?”
My dad — living alone in a bachelor’s apartment with minimal supports — isn’t much help in this regard, alternately embracing and rejecting every suggestion we put forward, with no memory of doing either one.
“I would love to live with you!” he insisted at a family meeting in June as we cobbled together a long-term game plan.
“Not on your life!” he told me a few weeks ago when the subject resurfaced.
“I need to go to a retirement home,’’ he told me during an anxious phone call that ended with his insistence “I don’t need a retirement home — I want to be independent!”
“Seniors’ day programs,” suggested his docs, “to keep his mind active and prolong his memory.”
“No thanks,” said my dad, who took one look at the “walking zombies” at his inaugural session and headed for the exit. “I’m not there yet.” So where is he exactly? That’s the million dollar question, and none of us have a clue.
Frankly, it’s not as if we were going to reach a consensus anyway, having exhausted ourselves debating whether to order Picklebarrel party sandwiches for a family meeting or a combination deli tray with accompanying veggie plate.
Tuna salad or egg? Brown bread or white? Carrots or cucumber?
For days the emails flew back and forth, everyone weighing in with their culinary preferences, trying fruitlessly to find common ground.
“Who are these people?” I asked my wife. “They’re as cantankerous and obstinate as I am. How do I deal with them?”
“If you guys are having conflicts over sandwiches,” advised a friend whose mother recently passed from Alzheimer’s, “just wait until the big decisions have to be made.”
The thought had crossed my mind, although to be fair, the recent escalation in my Dad’s anxiety has forced us to pull together, in as much as it’s possible for five knowit-alls bred on Jewish dysfunction to pull together.
Perhaps I’m being too harsh. We all care about him, spouses included. We all bring our own strengths to the table. We all want to do the right thing, whatever that might be.
And if I’m being honest, I’m glad I don’t have to deal with this alone.
But with doctor appointments to attend, assessment forms to fill out, long-term care facilities to apply to, waiting lists to navigate and enough medical brochures to fill 10 textbooks, the learning curve is astronomical.
And let’s be clear: Alzheimer’s — no matter what anyone says — is a bitch.
For those who have it, like my dad, aware they’re losing their memory, that their brain is slowly imploding, it must be devastating.
That’s the subtext of those anxious 7 a.m. calls.
For perennial understudies like me pushed suddenly to centre stage, it’s a rude awakening to the harsh realities of life: people, even beloved parents, grow old.
“I feel great,” my dad told me when I stopped by to check his computer and found the monitor inexplicably stuffed in a storage locker. “I have my friends and family. I go for walks.
“I was out yesterday and the sun was shining and I thought of that song ‘Stayin’ Alive’ with John Travolta strutting down the street, not a worry in the world. What was that movie?” “‘Saturday Night Fever’?” “That’s me. I’m having a terrific time!”
I look at him, taken aback: “You know you have Alzheimer’s, right?” He nods contentedly. “Listen,” I tell him. “I want to write about you in the newspaper. Lots of people struggle with this disease. It’s time to end the stigma.”
“Son,” he says, and for a moment I worry what his reaction will be. “I think it’s a great idea … (comic beat) … just make sure I get my residuals!”
Still himself, still vital, still hanging in.
He’s in for the long haul. I just hope I can keep pace.
And suddenly, here we are, five middle-aged adults living in three cities, spouses in tow, posed with the uneasy question, “What do we do about Dad?”