Wait for long-term care home transfer in Ontario setting family back $26K a month

Flipping through an old photo album, Julie Cayen is looking back at a time before dementia started to take her mother, Carol. A time before her mother needed 24-hour supervision, and the cost of her care was threatening to drain their savings.

"It's really hard. It's very hard," she says. Adding, "My mom was a fantastic mother. She did everything she could."

For over a year, Julie's parents, Carol and Larry Couse, lived together at the Villiage of Tansley Woods, a private retirement home in Burlington, Ont. Carol had been diagnosed with dementia, which was moving quickly.

“In addition to her memory loss, she was having issues with wandering, and also becoming quite physically and verbally aggressive,” Cayen said.

In December, Carol had a violent incident with another patient. Afterwards, the home decided Carol needed one-on-one care 24 hours a day while waiting to be transferred to a long-term care home.

The extra care was not covered.

“For the two of them to live there, [it] went from $5,500 a month up to $26,000 a month in a matter of two weeks,” Cayen said.

Carol was placed on the crisis list by Home and Community Care Support Services – the highest priority for long-term care placement.

Cayen applied to 10 homes, and she says half of them rejected her mother’s application due to her behavioural needs.

The remaining five homes – including the long-term care section at Tansley Woods – had no beds available for four months.

Cayen says her mother was also rejected from a behavioural help for dementia patient program at St. Peter's in Hamilton, Ont.

As of now, Carol and Larry Couse have paid over $100,000 in personal care.

"Nobody really seems to have an answer, to be honest. Nobody seems to know what we can really do," Cayen says.

One long-term care advocate told CTV News Toronto that this is far from an isolated incident and that the system is now broken. Broken to the point where certain patients are being denied the care they desperately need.

"This is flagrant failure systemically, and our government needs to answer for why they're allowing certain facilities to effectively discriminate and discriminate against some of our most vulnerable," says Vivian Stamatopoulos.

Stamatopoulos says the system is supposed to be public, adding, "The last time I checked, you can't show up to a publicly funded hospital with, let's say, a broken leg or a gunshot wound and have the hospital say, ‘Sorry we can't actually provide that care, you know, go to a different hospital.’ But for some reason, that's appropriate in long-term care?"

CTV News Toronto reached out to the ministries of Long-Term Care and Health for comment, who directed us to the province’s Home and Community Care Support Services, which said it does not report on average wait times.

“All individuals living in the community who are on the crisis long-term care waitlist are reviewed by Home and Community Care Support Services care coordinators to ensure their care needs are being met until a long-term care bed becomes available and to support a seamless transition to long-term care," the statement reads.

Cayen says, at this rate, her parents will be out of money in less than two years.

“What about people who don't have any savings? They retire with minimal savings. What about people who don't have family to advocate for them what happens to them?"

For now, they'll continue to wait – hoping for help that they fear may not come.