‘It’s nothing to be ashamed of’
My dad is one of those who never left middle age. Now he has Alzheimer’s. But he doesn’t dwell on the negative
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 my wife, 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.
We had noticed issues before this, going back two or three years, that seemed inconsequential at the time, but were red flags in retrospect.
Confusion over directions. Lastminute cancellations. A dental operation that left him in a fog long after the painkillers wore off.
Still, when the diagnosis arrived in an email from my sister-in-law, I was in shock. Alzheimer’s? No way. My dad may be 85, but he’s one of those guys who never really left middle age — like Dick Van Patten in
Eight Is Enough — endearingly mildmannered, lovably inept, young in spirit and body. (He was a gold medal winner at the North York Senior Games).
“I don’t believe it,” I told my wife after reading the email. “He doesn’t fit the profile.”
The truth, further research revealed, is that 11 per cent of people over 65, and one third over 85, will get Alzheimer’s.
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.
But as one of three kids charged with power of attorney, I can’t wallow in self-pity. Really, it’s not about me.
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 the word “battle” — against the fatal disease ravaging his brain.
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.
He’s 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.
“It’s nothing to be ashamed of,” he told me during a frank conversation about his diagnosis. “It’s a fact of life. It happened to Ronald Reagan. It can happen to the paper boy. You’ve got to keep your sense of humour.” Well, except for those phone calls. “Did I call you about this already?” he asked a few days ago, aware his memory issues were getting worse.
“Three times?” he pauses. “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. How long has it been since I had to deal with this motley crew of tickedoff misanthropes — I say this with affection — on a regular basis?
During the Carter administration, I think, or the U.S. bicentennial, on our annual car camping trips to Florida.
Barrelling along the I-75 with the Carpenters blaring on the eighttrack, we engaged in territorial dis- putes over armrests while 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 apartment with minimal supports — isn’t much help in this regard, alternately embracing and rejecting every suggestion put forward, with no memory of doing either.
“I would love to live with you!” he insisted at a family meeting last summer as we cobbled together a longterm 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’m not there yet!” So where is he exactly? Who knows. My siblings and I exhausted ourselves debating whether to order Pickle Barrel party sandwiches for a family meeting before we even got to the topic.
“If you guys are having conflicts over snack food,” advised a friend whose mother recently passed from Alzheimer’s, “just wait until the big decisions have to be made.”
True. Still, I’m glad I don’t have to deal with this alone.
With doctor’s appointments to attend and assessment forms to fill out, the learning curve is astronomical.
And Alzheimer’s — let’s be clear — is no picnic.
For those like my dad, aware 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: 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. Still himself, still vital, still hanging in.
I just hope I can keep pace.
“It’s a fact of life. It happened to Ronald Reagan . . . You’ve got to keep your sense of humour.” AL RUBINOFF JOEL RUBINOFF’S FATHER WHO HAS ALZHEIMER’S