“Do I have to do everything around here?”

by Anita Jenkins

Brochures and websites about retirement usually feature images of older couples golfing, vacationing in warm climates, and dining at fine restaurants.

“I never imagined it would be like this,” says one woman who assisted her increasingly disabled husband for several years and could seldom leave the house except for fitness activities and grocery shopping. And this was pre-COVID-19. “But you do what you have to do,” she says.

This scenario for aging couples is more common than most of us want to believe. In 2012, Statistics Canada reported that more than one million caregivers in Canada were over age 65.

I talked to four different people about this topic, and this is what they had to say.

In a calm and accepting voice, Joan talks about dealing with her husband’s struggle with Parkinson’s. Over a period of ten years, there has been a gradual decline, both physically and mentally. “It is up and down; we’ll see; what next?” she says.

Joan has experienced not only stress and worry and loss, but also increasing responsibilities, including handling the couple’s financial affairs. “Even my time away during the day becomes more and more limited,” she says.

“I considered counselling. I had trouble sleeping. I felt as if my life had been taken away. I talk to many friends honestly about my/our situation. It is a case of when to take the next step and, in the time of COVID, where to go from here. My husband and I were already on lockdown,” she says, “and now more so.”

Joan appreciates her friends’ advice about taking care of herself. She volunteers as an English tutor, which she finds fulfilling, being a retired teacher. “It’s super good,” she says.

Lynne’s husband has now moved to continuing care, but for several years she was essentially his nurse. He used a walker, a lift chair, a wheelchair for longer trips, and eventually Lifeline to call 911 if he fell and needed help to get up when Lynne was not at home. He was often moving about during the night, which meant many sleep interruptions for Lynne. She did all the house and garden chores, and when she went out, she felt she had to “rush back.”

Lynne hired a home care company so she could go to the Y for exercise three times a week. “It was okay at first,” she says, “but then my husband didn’t want them to help him, so it was not worth the price.”

“There was so much manoeuvring,” she says. “I coped as well as I could.”

Ron Rhine, a past president of ARTA, supported his wife Kathleen through a long illness at home and later in a nursing home nearby for seven more years. “It was hard to see her change,” Ron’s son David says, “but he didn’t let that deter him.”

“Mom was kind of the catalyst in our home,” David says. “She organized us and made things work. She sacrificed her personal life a lot for years and years, while Dad, a gregarious person, was out pursuing his career. So I think he saw it as a small return to take care of her in her declining years.”

After Kathleen moved to continuing care, Ron visited every day, sometimes twice, helping with meals and preparing for bed in the evening.

When I first contacted Joanne, we agreed that she didn’t really qualify as a case study for my story. Her 92-year-old partner is still independent, and she says they function as a team.

As we continued to talk, though, Joanne mentioned that she “doesn’t do her art” and that they can no longer travel together, nor does she travel solo because her husband finds it “painfully intrusive” to have someone live with him while she is away. Despite ongoing losses, Joanne says she is fortunate. “Life is rich in the unconditional positive regard Dan and I practice; in the deep intellectual and emotional bonds we maintain.”

Joanne says she has always been puzzled by how and when to apply the word “caregiver.” A social worker she knows says that some clients tell her not to use the word; others say it is a badge of honour. “Both my husband and I are exhausted,” Joanne says, “and he regrets deeply that more and more responsibility rests on my shoulders.”

Judy Kugel, a retired Harvard professor whose husband has Parkinson’s, writes a blog about the joys and challenges she and her husband are experiencing. Kugel expresses Joanne’s thought in another way:

We used to have a joke— when one of us asked the other to do some trivial task, the other person would say, “What, do I have to do everything around here?”

Now, I do have to do everything. If the situation were reversed, Peter would do more than everything.

Anita Jenkins is a retired editor and writer who lives in Edmonton. She, too, finds herself a caregiver to her husband.