My husband is immunocompromised—and we’re still quarantining. Here’s what it’s like.

Before the pandemic, my 74-year-old husband, Wayne, was dealing with some health issues. He was in the early stages of kidney failure and was wheelchair-bound due to severe spinal stenosis. He had a personal support worker to help with his care, but was otherwise active, meeting up with friends or tinkering with his 1940s Ford car with a friend’s son. His immune system was compromised, like anyone with a chronic illness, but we were able to maintain a social life as long as we were careful.

Wayne is a retired millwright machinist, and his favourite hobby is restoring antique cars. If I left him in his garage all day with food and coffee, he’d be quite content. I’m a retired nurse and, unlike Wayne, I’m fairly social: pre-pandemic, I’d go on day trips with friends to theatres, galleries, wineries and gardening centres. When I wasn’t day-tripping, I was exploring other interests—taking art classes and doing yoga. Together, Wayne and I enjoyed nights out to the movies or dinner. Our home in Georgina, Ontario, was often filled with laughter and the sounds of clinking glasses over meals and celebrations. We regularly travelled to Nova Scotia—both of our families are from Cape Breton—and I stayed at a rented cottage with our grandkids north of Huntsville each summer. While Wayne wasn’t as busy as I was, he found time to visit flea markets and meet up with his car buddies.

When COVID hit, our lives changed like everyone else’s. I ordered groceries online instead of heading to the store. We skipped Christmas in 2020 and, the following year, we exchanged gifts in our garage with our two adult sons, their spouses and our five grandkids. Like most people, we stayed six feet apart, waving to our kids and grandkids in the driveway. That was tough. It’s great to see family, but it’s hard not to be able to hug them. We missed having the grandkids over for sleepovers and taking trips to the zoo. The closest interaction I had with them was collecting dishes and exchanging empty casserole pans for filled ones at the end of the driveway.

We knew the isolation was temporary so we pushed through. We all got our vaccinations when they became available. As COVID cases finally dropped in early to mid 2022, we began inviting family and a small number of friends back into our home. I started attending physically distanced fitness classes, and Wayne went out for breakfast with friends, eating at restaurants that had outdoor seating.

That changed last September. During a visit, our PSW noticed that Wayne seemed confused and had developed a facial droop. He was hospitalized that day for acute kidney failure, a stroke and septicemia (a bacterial infection in the bloodstream). If septicemia progresses to septic shock, it has a mortality rate of about 50 per cent. In the hospital, he contracted COVID-19 and became severely ill. We were terrified.

After two hospital transfers and some rehabilitation, Wayne was discharged at the end of December. It felt like a miracle, but he wasn’t in the clear. He left the hospital significantly immunocompromised, with end-stage kidney failure, and has yet to regain his strength or energy. The doctors advised us to be extremely vigilant with our isolation and disease prevention protocols. If he catches something, his condition could become critical instantly.

Everyone around us has moved on, but for us it feels like March of 2020 all over again. Once again, I’m ordering groceries online to limit my chances of bringing an infection home. I don’t attend fitness or online cooking classes anymore and have stopped gardening to make more time to care for Wayne. Our only outings together are to his dialysis appointments, which can take up to eight hours. I leave the house alone to go to the pharmacy to get Wayne’s medication. Occasionally I venture out for a walk in our neighbourhood.

Aside from visits from our vaccinated sons, their families and the PSWs who help with Wayne’s care, we’re almost fully isolated from the outside world. The risk of infection is simply too high. I know it’s hard for Wayne. Friends want to visit, but they’re afraid of passing something along to him, and we respect that.

The isolation is tiresome and frustrating. One day, I realized all I had consumed was a bag of cookies and a cup of tea. It’s not that I wasn’t hungry—I just forgot to eat. My sleep is interrupted most nights, and I wake up often. I’m cranky the next day because of it. I noticed Wayne has gone from being relatively quiet to almost silent. He has some cognitive loss from a previous stroke, but when he’s asked questions, he often doesn’t respond. His sleep is broken too, and sometimes he wakes up three times a night. Other than watching TV all day—from 6 a.m. to after midnight—he has little to no interest in developing new hobbies. Recently, after lots of nudging, he began reading e-books online. But otherwise, he seems apathetic to trying anything new.

I sometimes wonder if Wayne’s disease weighs heavier on him because of the isolation. We isolate to maintain his physical health, and that’s a choice we’ve made together: getting sick when you’re already immunocompromised is a terrifying thought. But I’d bet that older adults who are immunocompromised would risk getting sick from a careful social interaction over the safety of strict isolation. Wayne never loved socializing, and he’s no different now—but I see him light up when our family visits and the grandkids tell him about their hockey games, or when he chats with the PSWs who help with his care. We’re social beings. We need those interactions to survive. What quality of life is offered to those who are completely shut out from the rest of the world?

Wayne and I are still trying to figure that out. We could put our masks on and take other precautions, but where could we go? None of our family or friends have wheelchair-accessible homes, so we’re left with public places like malls and restaurants, which are out of the question because of the high infection risks they pose. Our only option is to cautiously welcome vaccinated and healthy friends and family into our home. And we would. But between friends cancelling because they’ve gotten sick and others too afraid of getting Wayne sick, our social circle has slowly grown smaller.

We have found ways to cope. I make a plan at the beginning of each day, organizing things like meals and activities. On our dialysis days, for example, I try to get three meals in before we leave in the afternoon to ensure Wayne gets his protein for the day. In between, I pack a comfort bag for us: tea, snacks, a blanket, a book and some items to mend. We’ve taken up birdwatching together, which is quite fun. Wayne’s room has a panoramic view of the outdoors, and we’ve seen everything from cardinals on our feeder to a hawk enjoying a meal of finches.

I still crave that social interaction with our friends and family, though. I miss spontaneous phone calls from them: “We’re coming over for dinner on Friday, coffee on Tuesday.” I miss fitness classes with friends, where we motivate one another when all we want to do is quit: “Hold that pose!” “One more rep!” “Keep pedalling!” I hope in some way or another, we can get back to all that. But for now, we’ll continue on with our isolation, pushing safely against its boundaries every now and then to maintain some sense of normalcy.

—As told to Arisa Valyear