Skip to main content

Books In meeting a fellow caregiver, author Mike Barnes found a hero without her cape

My heroes in childhood were typical. Typical, that is, for a nervous Steeltown boy, circa 1967, looking for adult models that not only beat the odds but smashed them.

Bobby Baun scoring the winning goal in the Stanley Cup finals while playing on a broken leg. Captain Bligh navigating an open boat across more than 6,000 kilometres of Pacific Ocean, rationing himself and 18 others to an ounce and a half of bread a day while keeping a detailed log complete with hand-drawn maps. The monk Thich Quang Duc burning himself to death on a Saigon road to protest the persecution of his fellow Buddhists by the South Vietnamese government.

Story continues below advertisement

And many more. At 12 I needed a lot of heroes. Avatars of stoicism, endurance, cunning and resistance – all the qualities I surmised, correctly, I would need to survive my adolescence in the suburbs.

Now, half a century later, I still need a lot of heroes. Who doesn’t? But heroes at 62 are different (they’d better be) from heroes at 12. They’re shyer, for one thing, tending to merge with the environment, daring you to pick them out. I’ve wondered if this is because the world itself is finally becoming your hero, with this or that person revealing some shining part of it. Now, my heroes are less likely to perform the blatant prodigies of Baun-Bligh-Duc and more likely to manifest the quiet radiance of a skinny, white-haired woman I will call Joan.

Joan is in her early 70s. Apart from her dark-framed glasses, she has no features that would make her stand out in a crowd – which is just as well, as she is, and would no doubt like to remain, a hero in hiding.

She goes to visit her husband, Robert, in a dementia care home, which is where I see her. She goes every day, I think, and stays long hours; she must, because I visit three or four times a week, at different hours, and she is always there. Robert is a big man, wheelchair-bound now, and he yells. He doesn’t want to be there. Or anywhere, I think. His voice, which blasts the quiet like a thunderclap, causes the rest of us to flinch. Joan just says, “Oh, now,” patting his arm if he’ll allow it.

Joan doesn’t want Robert to be there either. But I’d been chatting with her in passing for several months before I learned this, and a bit more, from her daughter. In town for a rare visit to her dad, Ingrid had urged her mom to take a half-day off; “not an easy argument to win,” she smiled over our teas in the downstairs café.

Joan was still working as a classroom assistant when Robert, a retired engineer 15 years older, was diagnosed with Alzheimer’s. For the first two years, she continued working while she looked after him. Hiring a bit of help, then a bit more, but managing the house herself and coping with Robert’s complicated changes, her sleep shredding with his nighttime wanderings and the beginnings of his frightening outbursts. Outbursts her children feared were sometimes accompanied by physical violence: “Mom would never say.”

Two years patchworked along into three. Then four. Then, stumblingly, five. Robert’s condition worsening, of course, slowly but inevitably. The house becoming more and more chaotic. Messes. Breakage. Falls. Bruises. Cuts. Fractures. Spotty meals, Joan still doing the cooking but constantly interrupted. She slept, in cat naps, only when Robert did. She hired sitters to spell her off so she could shop and do other errands, but had trouble keeping them, owing to Robert’s volatility. Ingrid and an overseas brother pushed her to move Robert to a care home. They argued on the phone, in e-mails. They forwarded articles and podcasts. Joan said no: quiet steel. Didn’t judge those who made that choice, was tempted at bad moments herself, but “it wasn’t her way. Not with Robert.”

Story continues below advertisement

Eventually, though, it had to be. As it does for almost everyone, unless death intervenes. Things just fall too far apart, to where there’s no keeping them together. And so – here. Three years now. This was the part of the story I knew, having seen most of it. Robert is in end-stage dementia now, his movements spastic or locked, swallowing with difficulty, the weight dropping from his large frame. Though his voice, on occasion, remains huge.

Joan helps a lot with all the residents, especially when Robert is asleep or rigidly uncommunicative. She moves from table to table in the dining room to serve food or help with feeding, passing out music booklets during singalongs or cake and juice at birthday parties. The nurses and personal support workers treat her like an extra staff member. Moving discreetly around a room, bending close to this person or that, she is still the classroom assistant. Adding to this sense is the notebook she carries with her, stopping frequently to jot things down or read an earlier entry. The colour of the notebook changes every few months – I assume as it gets filled up and she starts a new one. A kind of care log she keeps, I’ve assumed, about Robert’s needs and perhaps those of other residents, since I often see her with the notebook open at the nursing station.

That’s most of what I know about Joan. It’s enough to make her a hero, one of the angels of long-term care who touch down at the rate of one or two per floor – rarely more and rarely less. Like a ration of divine aid. Joan’s kind of heroism creeps up on you. There’s no flash flood toppling obstacles, just this drop-by-drop devotion that adds up to something extraordinary.

But it was what I learned next that made her my hero.

Two mornings ago, I got off the elevator and saw Joan standing tensely at the nursing station, her hands fisted and a little raised, her face in profile blotchy. It shocked me: I’d never seen her even slightly discomposed. The eye toward me brimmed. Her posture looked stiff and at the same time crumpled. Robert, I thought, and hurried down the hall.

A while later, the nurse I’d seen over Joan’s shoulder came into the room I was in. I know her well. “Joan,” I said leadingly, “Robert …”

Story continues below advertisement

“Oh, she’s accusing me of taking her notebook,” the nurse said. “Or not me, but somebody. One of us.”

I was struck dumb for a moment, putting together this very un-Joan-like accusation with the fact, just recalled, that I hadn’t seen her notebook open on the countertop, as it normally would be. I was still steering my thoughts toward a response, when the nurse said, “Things are moving faster now, I think. Too fast for her to keep up with.”

“What things?” I said, even as I began to catch up myself.

And the nurse told me, with surprise that I’d been out of the loop, that, after a couple of years of the usual early signs, Joan’s Alzheimer’s had been diagnosed almost a year ago and that lately, after a plateau, seemed to be accelerating. “The way it does. You know.”

That was all. Or whatever else there might have been was crowded out by the new picture of Joan rapidly filling my mind. I’d heard of it before: someone helping someone else down the same steps they’re going to have to descend themselves. No way to avoid seeing every step. No candidate in sight to help them when their turn comes. Even as a concept it had chilled me. Now I was seeing the fact of it.

“Do you know what Joan said?” said the nurse. “Around the time she found out?”

Story continues below advertisement

I couldn’t imagine.

“She said she was glad Robert would never know. He wouldn’t have been able to take it, she said. If it had to be both of them, she was glad Robert went first. Him first, then her. It was the only way it could work. That’s Joan.”

It is.

Report an error
Due to technical reasons, we have temporarily removed commenting from our articles. We hope to have this fixed soon. Thank you for your patience. If you are looking to give feedback on our new site, please send it along to feedback@globeandmail.com. If you want to write a letter to the editor, please forward to letters@globeandmail.com.

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff. Non-subscribers can read and sort comments but will not be able to engage with them in any way. Click here to subscribe.

If you would like to write a letter to the editor, please forward it to letters@globeandmail.com. Readers can also interact with The Globe on Facebook and Twitter .

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff. Non-subscribers can read and sort comments but will not be able to engage with them in any way. Click here to subscribe.

If you would like to write a letter to the editor, please forward it to letters@globeandmail.com. Readers can also interact with The Globe on Facebook and Twitter .

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff.

We aim to create a safe and valuable space for discussion and debate. That means:

  • Treat others as you wish to be treated
  • Criticize ideas, not people
  • Stay on topic
  • Avoid the use of toxic and offensive language
  • Flag bad behaviour

Comments that violate our community guidelines will be removed.

Read our community guidelines here

Discussion loading ...

Cannabis pro newsletter