We’re not ready to lock up my dad with Alzheimer’s. But we’re hiding the knives


“We have to hide his knives,” I tell my brother as we stand in my dad’s one-room apartment in a Toronto retirement home.

“And his nail clippers. And his scissors. And his X-Acto knives. Because he’s gonna wake up tomorrow, forget what it is and cut it off.”

We’re talking about my dad’s new radio bracelet, a sophisticated (and expensive) piece of tracking tech designed to pinpoint his location in the event he becomes lost while out on his thrice daily walks.

And as we discuss precautions to ensure its survival, I gradually become aware that he’s standing next to me, taking this all in, aware his kids are discussing his well-being as if he’s some sort of inanimate object — like a table.

Ah crap. For all my progressive virtue-signalling and affinity for buzzwords like “agency” and “consent,” I’m the same insensitive clod I’ve always been.

My dad, it should be pointed out, is three and a half years into his Alzheimer’s diagnosis, an irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, with no cure, is a ticking time bomb for the rapidly aging baby boom.

And as his short-term memory continues to erode — a drib here, a drab there — it’s become easier for me to pretend the guy who taught me how to throw a ball, ride a bike and print in impeccably rendered block capitals won’t be embarrassed by blunt descriptions of his cognitive state.

Truth be known, the way I’m talking about him now — in the third person while he stands beside me — is pretty much the way I’ve talked about him, in my intemperate, half-joking way, since I was a teenager.

Ah, why not? He’s always been the good-natured butt of every joke, a pliable, mild-mannered presence we used to lock out of the house, just to watch his expression, when we’d see him coming up the steps from work.

But now it feels different, more consequential, important to get it right.

An Alzheimer’s diagnosis hasn’t compromised the bond between Al Rubinoff and his 11-year-old grandson, Max.

Alzheimer’s can do that — yank things into perspective.

Yes, he’s still engaged, marching to his own drum, a perennial 12-year-old whose whimsical approach to life helps temper my own natural cynicism.

But how long, I wonder, till the memory-gobbling Pac-Man in his brain clamps down for good?

How long until this disease with no known cause or cure, that affects one-third of people over 85, wreaks havoc on his easygoing, ferociously independent personality?

It’s this aspect that’s most troubling, as his kids struggle to respect his autonomy while keeping him safe.

“Lock him up!”

That’s the suggestion from the professionals overseeing his care, who don’t know him well but profess great concern for his safety.

I’m not saying they’re wrong, that their intentions aren’t good.

He’s been lost on a few walks already. Why take the chance it will happen again?

It makes sense. It’s prudent, responsible.

But to those who know him best it’s not so simple.

My dad, we intuitively understand, is a guy who would rather wander around lost in the dark, endlessly circling a shopping mall in sub-zero temperatures, than locked in the secure unit of an institutional government nursing home.

All five of us kids inherited his feisty, freewheeling spirit, and all five, I’m willing to bet, would feel exactly the same way.

“Just take me to a forest, tie me to a tree and let the wolves eat me,” he joked in one of his lighter moments. “That’s what they did in the old days.”

This has been the most challenging aspect since the shock of his diagnosis: how to find a balance between what he wants and what actually makes sense.

Not to be dramatic.

At 88, my dad — a seniors games swimmer, table tennis champ, former cub scout leader — is doing better than I ever imagined at this point.

I’m not sure a one-armed pushup is in the cards, but physically he’s like Jack Palance in the movie “City Slickers” — light on his feet, cagey, a force to be reckoned with.

Cognitively, there are gaps, but so what?

As we’ve come to realize in the years since his memory started slipping, this may not be the salient point.

The day after we affixed the $500 police tracker to his wrist, we learned it had disappeared, sliced off with scissors despite the fact we removed all cutting instruments from his apartment, posted “DO NOT REMOVE!” signs on his walls and printed an all-caps warning on the band itself.

I should have been frustrated, fed up. Instead I was intrigued, amused … impressed.

“He’s still got it!” I told my wife, who was startled by my jovial response.

“He didn’t want it on his arm and he found a way to get it off. That’s my dad. ‘What, this infernal bracelet is back? I’ll rip it off with my dentures!’ ”

At which point, I have a confession: I tried to write this story once before and it didn’t work.

The focus was wrong.

It was about selfless, humble, bragging me, his oldest son, shouldering the burden of an aging parent.

I showed it to him, out of respect, and taken aback by my indulgent whining about his mental state, he told me I was free to publish — ahem — once he was dead, so into the remainder bin it went.

Get some good advice in your inbox

Get expert advice on life and relationships with the Star’s Advice newsletter.

Sign Up Now

I had offended his dignity, his sense of pride.

I’ve since come to realize that while Alzheimer’s is often depicted as a tragedy, from my dad’s point of view it’s more like a vague inconvenience, a gradual slide into old age with a few more bumps than might otherwise have been expected.

“You say I got lost on my walk and the police brought me home?” he told me after his most recent return. “I don’t remember, but I feel great now.”

Who am I to argue?

I can see he’s fraying at the edges, especially late in the day, when confusion sets in and the gap between questions already answered shrinks to 30-second intervals.

But he still has his sense of humour, his charm, his sparkling ability to connect with my autistic son.

“What’s to worry about?” he asked a couple of days ago, pressed about living with Alzheimer’s. “I don’t have a care in the world.”

In the ways that matter, he’s the same person he’s always been.

Then again, as the people overseeing his care are fond of telling me, there’s a good chance I’m in denial.

He’s not himself, they insist. Someone needs to step in. Accommodations must be made — before it’s too late.

I suspect they’re right, despite his Borscht Belt assertion: “You know what ‘denial’ is? A river in Egypt — da Nile!”

And yet, I hesitate.

We know that at some point, hard decisions will have to be made, that when a bed opens up in a government facility, the appeal of a strictly controlled environment will conflict with his Tom Sawyer-like need for independence.

But when you understand the nebulous grey zone in which my dad resides — sometimes fine, sometimes not — the line between safety and selfhood becomes more muddled.

The answer, for now, is the police tracker ingeniously ripped five times from his wrist, each time with more MacGyver-like ingenuity than the last because, as he astutely points out, “just because you have Alzheimer’s doesn’t mean you’re stupid.”

Stupid, no. Crafty? Resourceful? Now those are words that fit.

Just ask the caregiver hired to tail him on walks like TV detective Mannix, who — because my dad made it clear he doesn’t want company — must duck behind bushes to ensure that tomorrow’s newspaper headline doesn’t read “Bob Newhart clone goes for post-dinner walk, disappears off face of Earth.”

How does that Doris Day song go — whatever will be, will be?

“Pardon me, Dad,” I tell him, determined to address him more respectfully after his radio band disappears for a sixth time.

“As you know, you’ve been having some memory issues, and given that your radio tracker cost $500, I feel it necessary to confiscate any sharp objects so that in case of a cognitive disconnect, you don’t use your embedded survival skills to pry its bulbous presence forcefully from your body.”

He looks at me confused, though no more confused than when he was 50 and I was 20. “What?”

“We’re taking your knives,” I tell him, pointing down at his shoelaces.

He looks down, I flick his nose with my finger, he laughs.

For the moment at least, all is well.

Joel Rubinoff

Source link