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first person

Illustration by Rachel Wada

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Into late May, my stepmother’s retirement home in Hamilton still had no cases of COVID-19. E-mail updates to families of residents had become more frequent, and the organizational relief was always palpable: “Thank you for all your help staying away.”

A strange and sad phrase. Even though I was relieved the building remained virus-free for another day, the pandemic had been unleashing subtler damage for weeks.

“The whole thing is overwhelming,” my stepmother said in mid-April, after in-room meals had been implemented to limit close points of contact. “Do you know more than that?”

She has dementia, and even before COVID-19 our phone calls had a sameness. In addition to grounding her in time and place I was also reminding her about the pandemic. She asked how my son was, having forgotten the schools are closed. And she asked when I’d be dropping by, having forgotten visitors weren’t allowed. In a silver lining of sorts, Donald Trump’s handling of the crisis (and his previous behaviour) was so memorable it had imprinted, and she calls him “a loose cannon” whenever she can wedge it in.

The dining room had meant guaranteed mingling three times a day. Now, instead of being summoned for a meal with neighbours, she was told to return to her apartment because food was on its way. At least I knew when I could reach her.

“I haven’t heard from my parents in ages,” she said one day at lunch. “I find this scary. Do we know if something happened?”

Both her parents died in the 1990s. I didn’t want to muddle her with facts. I said they’d been loved and were missed, and that she’d be the first person they would call if they could. The mystery in her mind was stubborn, though, and quickly got darker. A few days later she was convinced they’d killed themselves.

“I can’t believe they would feel so lost in their lives that they’d have to do something so tragic,” she said. “But it was their wish. They didn’t want to face this virus.”

I didn’t hear the TV in the background, which always worried me because CNN qualifies as a companion in the absence of any other. If she hits the wrong button on the remote and loses reception, she assumes the whole building is out. Similarly, if she doesn’t cradle her cordless phone, the battery dies and she assumes it’s broken. Without intervention, days would pass. Weeks. She’s no longer able to problem-solve. These were easy fixes when I was allowed into the building.

“I’m not far away,” I tell my stepmother near the end of every call. It’s only a 10-minute walk from my place to hers, but I might as well be in Greenland.

The staff are helpful but taxed, and families are asked to be patient with the “little things” that need addressing. A stern e-mail went out about people disregarding the protocols for outside visits: “We did not go into healthcare to become security guards.”

Not long before this understandable finger wag, I’d had my own close call. My stepmother came out at the main entrance just after I’d dropped off a care package (always the same: two packs of Benson & Hedges Deluxe and three rolls of Mentos). I didn’t tell her I was coming because I didn’t want exactly this: an encounter I couldn’t control. I had a mask on but I greeted her the same way I’d been greeting her for 30 years.

“Hi, Kaye.”

She stepped toward me and I stepped back. She kept coming. She seemed stricken, and later I would tell myself she seemed stricken before I was backing away. She kept coming and I kept backing away. Whatever was keeping us apart felt imaginary, though I had a terribly real thought of her getting shot in the back if she dared reach out for my forearm (her pre-hug move, to pull me in).

We Skyped that night, by which time she’d likely forgotten the awkwardness. While video calls are cause for excitement for some, I could see Kaye’s anxiety as the staff member settled her in a chair opposite the laptop. She’d assumed something was wrong. “I’ve been worried,” she said, her eyes roaming the screen. “Is everything okay where you are?”

Rough moments like those make me fear the pandemic has accelerated her dementia. The isolation seemed to be worsening her confusion. Dementia caregivers know about curved lines on a graph. It’s a single line, and it only trends downward. You might think the line is holding flat, but the curve is always curving. The object is to stall the falling away.

The pandemic has sometimes felt imitative of an illness that is confounding even in typical times. I know discombobulation, but I don’t know her discombobulation.

“Are there answers to what’s ahead or how bad it will get?” she asked last week.

I could ask the same about her dementia. Though I should count us as lucky. Some day she might be a candidate for the beleaguered nursing-home system, but not yet. Her needs are being met. And despite her anxious swoons, she has maintained poise and eloquence and also a concern for others.

“Am I taking it all in stride? I think so, yes… Are you?”

Dave Cameron lives in Hamilton.