Kathy Tetlock's mom, June, is 83, and in the early stages of dementia. She lives in her own home, but with increasing difficulty since her husband died in July. Some days, she barricades herself in the house, trembling in fear; others, she wanders over to the local hospital, looking for her husband.
The senior Ms. Tetlock gets some home support – Meals on Wheels, and people who come by to make sure she takes her meds – but no nursing care. She refuses to let anyone help her with bathing, toileting or cleaning up. Her daughter, the only family member in town, does the rest – shopping, chores, paying the bills and praying nothing horrible happens.
"She's uncomfortable in her home, and it's getting more dangerous every day," Kathy Tetlock says. "But it's not like we have any options."
June Tetlock's name is on the list for a spot in the local long-term-care facility, and has been for eight months. But the wait for a bed is more than two years. Yes, years.
"I can't conceive of how she will manage for another year, let alone two years," Ms. Tetlock says.
Inconceivable is the new normal for many caregivers, especially in remote and rural communities.
Kathy and June Tetlock live in Red Lake, a gold-mining community in northwestern Ontario, population 4,500.
According to Health Quality Ontario, the median wait for a long-term-care bed in the northwest region of the province is 187 days if you're living at home, 93 days if you're living in hospital – one of the worst records in the province.
But the data tell only part of the story. That average six-month wait is for a long-term-care bed anywhere in the region. The next closest communities to Red Lake are Dryden and Kenora, each about a three-hour drive away, a punishing journey for families who want to visit regularly. So they wait even longer for a local placement.
The data don't reveal either that there is no nursing home and no supportive housing in or around Red Lake.
There is a single long-term care facility, Northwood Lodge. It has 32 beds and 25 people on the wait list. Turnover is less than one a month – and, in this case, turnover is a euphemism for death.
"You have to hope someone else dies so your loved one will get a spot – and that's an awful feeling," Ms. Tetlock says.
There are a number of people who are too sick to live at home alone, many of them with dementia. With limited home-care services available and no room at the long-term-care facility, many end up, by default, in hospital.
The Red Lake Margaret Cochenour Memorial Hospital has only 18 beds, two of them reserved for birthing and obstetrics. Of the remaining 16 beds, 10 are occupied by seniors who don't need to be in hospital but have nowhere else to go.
Known euphemistically as "alternate level of care" patients, they occupy two-thirds of the hospital's beds. Naturally, there's an impact, including patients on stretchers in the emergency room because there are no beds for them to be admitted.
"The shortage of long-term-care beds has a ripple effect – it means we have very few acute-care beds," says Angela Bishop, the hospital's chief executive officer. "Although we're a hospital, we're pretty close to being a long-term-care home."
The real tragedy here is that Red Lake is not at all an anomaly. "Our story is not unlike many other communities' stories," Ms. Bishop says. "There are a lot of Canadians who need long-term care, especially seniors with dementia."
The obvious solution is more long-term-care facilities. But that is only part of the answer.
The Red Lake story, more than anything, reminds us how the provision of care for seniors – especially those with dementia – is disjointed and disorganized. Community-care programs, home care, nursing-home care, long-term facilities and hospitals need to work in concert, not in isolation. Labour laws and social programs have to support caregivers. Infrastructure dollars need to be spent wisely.
There needs to be a plan, a strategy – as many groups have been demanding for years.
And underpinning that strategy there needs to be a philosophy that caring properly for our elders matters, regardless of where they live.