Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part seven of an eight part series.
Before Barbara Larkin moved her 80-something mom into an assisted living facility in Maple Ridge, B.C., she would sit in her car outside her mother’s apartment and cry.
“I felt like I was leaving a four-year-old in the house on her own,” she says.
Larkin’s mother, Eveline, suffered from dementia. She was increasingly unsteady on her feet and she was unable to shop, cook and care for herself. “She’d forget to eat,” says Larkin. “She only weighed about 115 pounds to begin with, but she was down to about 95 pounds.”
Larkin and her three siblings tried their best to talk their mom into moving into an assisted living facility. “We’d drive her around to a couple of places and I’d have the brochures,” says Larkin. “Then she’d say, ‘I’d rather die than move in there.’” Finally, says Larkin, “We had to make the decision for her. And once we did, she just went.”
“When we’d visit her at her apartment, it would be like, ‘Okay, we have to go get groceries now. And then to your doctor’s appointment,’” she says.
Moving their mom freed them up to have fun with her again – “take her out to lunch and that kind of thing” in her last few years (she died in February).
When to move to a higher level of care
“It’s a highly personal decision when to move on to the next level of care and it is often influenced by finances and community support,” says geriatric psychiatrist Dr. Ron Keren, of Toronto. “There’s no formula.”
Some of the key determinants, he says, are incontinence, problems with personal hygiene, wandering, aggressive behavior and interrupted sleep.
For many people who have dementia, the decision to seek a higher level of care is thrust on them (or their family members); precipitated by a fall or a health crisis that lands them in hospital. At that point, it helps to know your options and rights when it comes to accessing care in a facility of some kind.
Live-in care at home:
Debby Blyth, of Toronto, hired a full-time caregiver through the week for her parents, and another for weekends. The paid live-in caregiver cost her about $700 per week (or $2,800 per month), including CPP, EI and income tax payments, but she watched over both of Blyth’s parents. “That was still cheaper that moving both my parents into a nice retirement home,” she says.
A full-time live-in caregiver can cost $1,900 to $3,500 a month, plus room and board. But, points out Audrey Miller, owner of geriatric care manager Eldercaring Inc., round-the-clock care may require more than one caregiver because of provincial labor laws. Particularly If you’re caring for only one individual, that can make this option prohibitively expensive.
Once she was in the assisted living facility we were able to just enjoy her.
You can access CanadianNanny.ca’s listing of paid live-in and live-out caregivers for seniors for a subscription fee of $6.99 per month plus a one-time activation fee of $44.99. The Canadian government also allows families to hire a foreign caregiver through its Live-in Caregiver Program, providing no Canadian workers are available to fill the position.
Retirement residences with assisted/supportive living services:
Accommodation can range from one room to a self-contained apartment. But This option is geared for people who want to remain relatively independent, but need a range of services that may include personal care, homemaking services, meals, activities and a way to access help in an emergency.
The facilities can be run by charitable organizations, non-profits or for-profit organizations, but they are not subsidized by the government. The cost generally ranges between $1,500 and $5,000 or more per month. If there’s a vacancy, you sign a lease, with all the rights and responsibilities of a tenant. To find out what costs are like in your area, click on your province in thisSun Life Financial guide.
Larkin paid about $2,400 a month for an apartment in an assisted living facility for her mother. “That covered her food and other costs like cable as well,” she points out. “We still had to hire someone to do her laundry.”
After Eveline developed a urinary tract infection she needed a higher level of care and the costs grew accordingly. “The bill was never itemized,” says Larkin, “but it was costing about $5,000 a month.” As is common with assisted living homes, this one didn’t offer dementia care and Larkin lived in fear that her mother would be “kicked out.”
Some retirement homes will let you bring in your own additional care, says Miller, and there are a few retirement residences that are “dementia-friendly.” If you want a bed in one of them, however, it’s going to cost you. “It’s expensive to run them and they can cost $6,000 a month or more,” she says. For a list of assisted/supportive living facilities by province, click here.
Long term care (LTC) homes (frequently referred to as nursing homes):
These homes cater to people who need 24/7 care for complex, unpredictable medical needs and personal care. They can be public, private, or run by charitable agencies or religious communities, and costs vary greatly across Canada. Some jurisdictions can pay more than three times as much as others.
For example, Alberta currently charges $1,839 per month for a private room; $1,591 for a semi-private room and $1,509 for a standard ward room. In Ontario, you’ll pay $1,708 a month for basic accommodation; $2,012 for semi-private and $2,362 for private. The maximum monthly rate in Newfoundland is $2,800 a month. To find out what costs are like in your area, click on your province in this Sun Life Financial guide.
If money is tight, most provinces offer subsidies. In Ontario, it’s based on the income tax return of the person being admitted. They’ll have to pay residence costs equal to their monthly income minus $100. The government will pay the remaining cost.
In all provinces, you’ll need a referral from a Community Care Access/Health Authority case worker to procure a bed. And you may well wait some time for one to come up.
LTC: Hurry up and wait
You’ll be asked to choose somewhere between two and five homes in order of preference, depending on your province. In Ontario, you can choose as many as five and as little as one, according to Jane Meadus, a staff lawyer and institutional advocate at Toronto’s Advocacy Centre for the Elderly (ACE).
But the pickier you are, the longer you’ll usually wait for a bed. “The government will tell you there’s always a bed available,” says Miller. “And I believe that’s true. You just don’t know where the bed is going to be. It might not be the bed you want in your home community.”
They can be very aggressive. It’s important to know your rights.
In Ontario, for example, there are 25,206 people waiting for a bed in an LTC home, and the average wait time is 113 days. Less than half of those applying will get their first choice of facility. In Nova Scotia, the average wait is 154 days. And in 2008-9, Saskatoon alone had an average of 103 people on the waiting list for long-term care.
Often, patients wait in hospital for a bed to come up. In fact, a 2012 report by the Canadian Health and Life Insurance Association found that fully 7,550 hospital beds in Canada are occupied by people waiting for an LTC bed. Given that the cost of a bed in a hospital is approximately $842 per day, compared to $126 for a LTC bed, provincial governments are eager to move you on out to the first bed available.
“They can be very aggressive,” says Meadus. “It’s important to know your rights.”
Although hospitals frequently try to push people into picking long-term care homes with shorter waiting lists, they are not allowed to tell a patient or family member which LTC facility to apply to or force them to care for a friend or relative at home.
Neither can a hospital legitimately promise round-the-clock home care as long as the patient frees up the hospital bed. “Only the CCAC has the authority to do that,” says Meadus. “And even if the CCAC does promise a certain number of hours, that can change once you get home.” (For more information on Ontario laws regarding home care and long term care, check out her website.)
That said, hospital beds are not the best place for elderly people who are not in a health crisis of some kind, Meadus concedes. “They offer lousy care for people who are there for a long time,” she says. “There’s no programming and getting fed is hit and miss. Patients will get a tray of food dropped in front of them, but no one is going to sit there and make sure they eat.”
Meadus urges people to check out a range of LTC homes before it comes down to the crunch, pointing out that, if you have a short list in mind, it could make the process of finding a facility faster.
“Look beyond the walls,” she advises. “Maybe the home is a little older, but they’ve got the care part of it right.”