Separating couples in long-term care: Some nations call it inhumane, in most of Canada it's routine

It's a dilemma Canadian couples may eventually face - to get care, they'll be forced to live apart. This country's routine approach of splitting up couples when it comes to housing patients in long-term care facilities would be unheard of in places like Sweden, where it's considered inhumane.

It's a dilemma for Canadian couples - to get long-term care, they're often forced to live apart

Martha Farnell's husband, Willard, requires long-term care, but the Alberta health system doesn't have a way to allow her to continue to live with him, so they're forced to live apart after 66 years of marriage. 'We want to be together,' she says. (Melissa Mancini/CBC)

The day after Martha Farnell celebrated her 66th wedding anniversary, her husband, Willard, officially moved to a different address 20 minutes away from the Calgary bunglow the couple has shared for decades.

It wasn't a choice.

It was a situation many couples across Canada face: when one senior needs more care than the other, they are often separated by a long-term care system that isn't built to handle varying needs.

"He is just going to deteriorate so fast without me," Martha said through tears. "I do everything for him."

Willard has had dementia for years, but Martha says the progression of the disease has been more obvious recently. After a fall landed him the hospital in March, he wasn't able to move back home.

Martha isn't sick enough to go into care, but she does need three surgeries in the coming months for carpal tunnel in her hands and nerve damage in her shoulder. Surgeries she put off so she could take care of her husband while he was living at home.

Even so, she'd rather still be with Willard to help take care of him, but the Alberta health system doesn't have a care home where they can live together.

Dementia care forces Calgary couple apart after 66 years

4 years ago
Duration 1:30
They were supposed to grow old together, but a dementia diagnosis for one of them now means this Calgary couple must live apart. Martha Farnell talks to CBC's David Common about being separated from her husband Willard just after their 66th wedding anniversary. In Sweden, couples have the right to live together, even if one requires more care than the other, something Martha would like to see Canada do.

The Farnells are not alone. There are no statistics on how many couples are separated by the health care system in Canada, but examples aren't difficult to find:

  • An elderly couple in New Brunswick was separated right before Christmas last year.
  • A woman in Manitoba chose to forgo care until her husband needed it too so that they could stay together.
  • A couple in St. Catharines, Ont., were separated for three years even though they both needed long-term care, until they were reunited recently after he was injured by another resident in his nursing home.

Across Canada the situation is varied, but most provinces do not have long-term care homes that can accommodate a spouse who does not have severe health needs. Even when both spouses need care, they can still be separated based on the availability of beds.

Ontario passed a regulation on Jan. 1, 2018, requiring every long-term care home to have at least two beds for spouses, but the NDP says it hasn't been enough to meet demand.

In B.C., the health system makes no promises either. When only one member of a couple is eligible for long-term residential care: "The health authority will explore, with the couple, those options that may help to maintain their relationship."

Manitoba's health minister, meanwhile, has said publicly that the province has no plans to expand the criteria to place healthy spouses in homes with patients who need long-term care, because it would reduce the number of beds for people who meet the requirements for treatment.

In the Farnells' case, the Alberta Health Authority says it looked for options such as a separate suite at a private independent-living building offering long-term care. But when Willard was discharged from the hospital and admitted to a long-term care home, one could not be found.

Martha says the only option they had to stay together was a private care home, which would have cost about $9,000 a month.

A caring approach to care

The story is very different across the ocean in Sweden, where elderly couples have the right to live together when one of them goes into long-term care.

When Torsten Stavdal had a stroke that left him without the ability to talk or walk, his wife, Nancy, was able to move into a nursing home with him in Örebro where they had raised their children.

It means Torsten can see his wife, who needs no care, every day.

For Nancy, it means peace of mind.

"I would not feel calm if I was at home and Torsten was here," she said.

Nancy Stavdal's husband, Torsten, has special needs due to a stroke. They share a small apartment in a long-term care home in Örebro, Sweden, that is designed to accommodate couples - a very different approach to how Canada's health system tends to deal with situations where one person needs long-term care and the other doesn't. (Dave MacIntosh/CBC)

Nancy is able to live independently, while still participating in her husband's care. They spend time together in the home's Wintergarten. They share meals together in the communal dining room, or their own room if they prefer. They do puzzles in the living room decorated with photos of family.

They are in charge of their own day, but help is always available from staff when Nancy cannot take care of Torsten alone. And if she wants to go visit a family member for a few days outside of Örebro, then the home's caregivers can take care of Torsten while she is gone.

After 68 years together, the couple cannot imagine life any other way. And because of regulations in Sweden, they don't have to.

The country's Social Services Act was amended in 2012 and says elderly people who have lived together for an extended period can continue to live together even when one of them needs supportive housing.

The initiatives in Sweden don't stop with ensuring that couples who want to stay together in their final years can live in long-term care together. Companionship has been made a priority for people with dementia.

Sweden's Queen Silvia took a special interest in dementia after her mother was diagnosed with the disease. Now her name is attached to an organization called Silviahemmet, which trains health professionals in dementia care.

She recently lent her name to new apartments being built in a partnership with Ikea and the engineering giant Skanska. SilviaBo is a set of dementia-friendly apartments where those with the condition can live with their partners, a child or even a friend.

The apartments have no reflective surfaces, so those with dementia don't see themselves and get confused by their own aged faces. Water faucets and outlets have timed shut-offs. Knobs on cupboards are contrasting colours to make them easier to open, reducing frustrations.

The long-term care units are designed to keep dementia patients calm. But they are also designed for companionship: they are apartments built for two.

Living with dementia

4 years ago
Duration 0:46
Take a tour through specially designed apartments for people with dementia in Sweden. The apartments were developed as a partnership between a large Swedish construction company, furniture-maker IKEA, and the country's Queen.

'We want to be together'

Back in Canada, Martha Farnell leaves the house every morning at 7:30 a.m. to feed her husband his favourite breakfast: Cheerios. He still loves the taste of them, even though they have to be ground up to suit his required liquid diet.

"I go there in the morning and his eyes are just so open, so happy the minute he sees me."

When I knelt down before God and said 'until death do us part,' I meant it.- Martha Farnell

She pays $30 each way every day to take a taxi to the long-care home where Willard lives. It's not the cost that bothers her, but rather the idea Willard might wake up from a nap and she might not be there to greet him.

And each day she spends 10 to 12 hours at the nursing home. Martha stays by Willard's side until he goes to sleep at night, so he doesn't get agitated. 

More than anything, she wants to be able to sleep next to him. The way she did for more than six decades.

"When I knelt down before God and said 'until death do us part,' I meant it. This is what we want. We want to be together."

More from CBC News

WATCH: The National's feature on couples separated by the health system, and how Sweden differs from Canada in its approach to long-term care