Married 58 years, Oscar and Mary Fontaine lived together in their family home until the day he died.
Though advanced Parkinson’s made him weak, forcing him to use a feeding tube, Oscar still enjoyed his simple pleasures. Even as a pandemic raged around the world, and thousands died cut off from their families in hospitals and long-term care beds, Oscar was able to visit with family, watch tomatoes ripen in the backyard and rest amidst the familiar sights of home until his eyes grew too tired to open.
Oscar died peacefully in his own living room, surrounded by his wife, three children and two long-term, government-subsidized care staff. They cried together as his pulse faded.
But this is a beautiful end-of-life story that almost turned out quite differently. After thousands of dollars spent, dozens of conversations and hours of searching, it was literally a chance conversation that gave the Fontaines the key they needed to navigate Alberta’s community-based health care system.
“It’s crazy,” said Darryl Fontaine, Oscar’s son, who came forward with his sister Carolin through Groundwork, the Edmonton Journal’s pilot project in engagement journalism.
After seeing the longstanding home care issues and trauma of the pandemic, they thought their dad’s experience with a little-known program called “self-managed care” could be useful for others.
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In survey after survey, Albertans are adamant; the vast majority want to remain home as they age as long as possible, especially after the COVID-19 outbreaks and isolation in institutionalized care. But even before the pandemic, Statistics Canada found a third of Canadians who require home care weren’t able to get their needs met.
When home care works well, families swear these nurses and personal aides are “angels.”
But when it doesn’t work, as is often the case, it’s because staff are overwhelmed. They’re racing from home to home, come hours late or are simply unavailable; supports are confusing; families can’t get enough hours to make a difference, or the staff are re-assigned so frequently, families must constantly re-explain what needs to be done.
That’s according to anecdotes submitted through Groundwork and from a Health Quality Council of Alberta survey (2019).
It found one in five home care clients said they had needs they couldn’t get help for, including bathing and therapy.
Those were the cracks in the system; COVID created a chasm.
When the pandemic hit, some families cancelled home care out of fear. For many others, home care deemed their services non-essential, pulling back with hours notice. During the peak of wave one, showers and baths were cancelled, day programs evaporated, respite care was denied and in many cases, the full burden of 24-hour care fell on the shoulders of unpaid and often untrained family members.
But that didn’t happen to Oscar.
Self-managed care the ‘saving light’
Oscar’s story starts in a fairly typical way.
He began to need support after a series of mini strokes in 2012. Then he had a fall and was diagnosed with Parkinson’s. He really wanted to come home from the hospital but his experience with home care had not been good. The family did not know what other options were available.
Talking with the hospital staff didn’t help, said Darryl. But one aunt had seen a good situation with a live-in caregiver who was a temporary foreign worker. They found someone already in Canada, got the paperwork finalized and were thrilled with her work. Only it wasn’t sustainable.
By the time Oscar got a urinary tract infection and landed in the hospital again seven months later, the couple had burned through most of their savings. It looked like a painful separation and move to institutional care was inevitable.
Finally, that’s when the admitting nurse happened to mention “self-managed care.”
It was mind-blowing. “It was exactly what we needed but it was not offered once (in the months of discussions previously). It was like you needed a secret handshake to know about it,” Darryl said. “There should be a flow chart of care or something.”
Alberta has a little-known program called self-managed care that will reimburse families on average $3,277 per month to let them hire their own caregivers. There’s a cap of $4,500, but families can appeal that if a person’s needs are higher. The program is for people with fairly stable care needs; families work with a provincial case manager annually to get those needs assessed and funded.
It takes time to set up — in the summer of 2014, Carolin and Darryl took a course to prepare, set up a corporation to handle the funds and signed with the non-profit
Edmonton Residential Aide Placement Service Society to handle paycheques and tax deductions. But Oscar had both part-time and full-time care staff who gave him personalized, sensitive care for years.
“They had the time to spend with him. Even though (Oscar) couldn’t talk, he’d still come up with ways to joke,” said Carolin. “Our mother’s stress levels just dropped. Self-managed care was the saving light for us.”
Even the small comforts stand out; he had baths as often as needed and got to use the toilet instead of adult diapers. A small thing perhaps, but it was his first request when he got home from a transitional facility, Norwood CapitalCare. And when the disease advanced, when he was weak and using a feeding tube, he was still able to join his family to holiday in the mountains. Three times a staff member chose to come along.
The end came after he was diagnosed with cancer last May. But even in that last summer he was happy, Carolin said. He couldn’t speak. But he’d sit in the backyard or beside her in Hawrelak Park when she’d rent a wheelchair van to take him out. He would look at her and grin and that memory lives on.
Complexity and accessibility
Alberta’s self-managed care program is not widely publicized; it’s been running since 1991 but only 1,700 people (1.4 per cent of home care recipients in Alberta) are set up to manage care this way. The rest either pay privately for help, rely on family members or receive care from staff working for or contracted by Alberta Health Services.
When this is inadequate, they end up in facility-based care. One 2017 study from the Canadian Institute for Health Information found up to a third of seniors placed in long-term care homes could have been cared for at home, if proper support was available.
That’s one reason why governments across Canada and around the world are experimenting with self-managed or self-directed care, even giving cash grants to let people subsidize a family member taking time off work to help.
Canada’s population of seniors over 85 is expected to triple by 2050. If older adults are able to stay home, they and their families avoid paying thousands of dollars in room and board to facility operators. Governments save on capital and maintenance costs, plus the daily cost of nurses and other health care staff. Those public costs in long-term care are roughly $175 a day ($5,250/month), according to the National Institute on Ageing.
Locally, experts say the biggest reason more families aren’t getting subsidies to hire their own help is because they don’t know they can. It’s hard to find information and there is a bias among health care staff toward institutional care.
The second issue is complexity.
Not everyone has the wherewithal to set up a business, even with support. That’s a recognized issue among researchers in the field, leading some to worry these programs can make access to health care inequitable. But on the other hand, one April 2020 study from the Journal of Aging and Social Policy found it can increase reliability in remote areas and help people from linguistic or ethnic minority groups find caregivers who understand their particular needs.
There is a stigma against having a parent in facility-based care within many African and other immigrant communities, said Nasra Warsame, coordinator for seniors programs at the Africa Centre. Right now many will send a loved one back to relatives in Africa rather than placing them in a facility.
No one knows about the option to hire a community member, said Istahil Farah, a health care aide and Somali-Canadian whose mother quit work to care her grandmother. “I’m a health care worker and I never heard of that.”
“The biggest challenge is finding out about the program,” said Muriel Malin, head of Edmonton Residential Aide Placement Service Society, which handles payroll for more than 1,000 families each month. That’s up from 120 families when she started with the non-profit in 2001. They also help with hiring.
Support staff are generally paid $19-20/hour, less than at a care facility but more than many get working for a private agency contracted to AHS, Malin said. About a quarter of the families add private money to secure more hours than what AHS funds.
If the government could organize a benefit plan for employees, she said, it would be a huge improvement.
Dr. James Silvius, provincial medical director overseeing seniors health, said Alberta Health Services recognizes the potential. They are trying to improve communication around it and expand access with a simplified version.
Called the Invoicing Model, the simplified version was part of a larger pilot project to better support family caregivers in Edmonton. It allows clients to book directly with their company of choice and get reimbursed, he said. “There is an interest on the part of government to expand it to other parts of the province.”
As for complaints about the challenge finding information, “it’s less than it used to be but (those complaints) are still something we hear fairly frequently,” Silvius said. “Through home care, the options should be discussed.”
A ray of light
When home care does work well, it’s a bright spot in a dark time.
That’s what Frank Florkewich found when his wife Lori, 75, fell ill last fall. She was diagnosed with stage 4 cancer, was declining fast and in the hospital, only two family members could visit.
Visits would be easier in a hospice, even during the pandemic. But “there’s still a lot of loneliness there,” said Frank, remembering the initial fear his family had around bringing her home to their rural residence 10 kilometres west of Stony Plain.
“You don’t really know what to expect,” he said. “You’re scared. … Are we doing the right thing? Maybe we’ll prolong it or you’ll add pain or suffering. But it didn’t take long for us to lay that to rest.”
Home care staff helped them find a hospital bed and other equipment to set up in the living room. They trained family members until they were confident giving needles and other medication. The head nurse seemed to be always on call, a nurse practitioner could adapt prescriptions quickly, and staff came regularly. They brought oxygen and supplies, kept good records and eventually handed over care to the palliative team as Lori’s condition worsened.
“We wanted to do everything we could to keep her out of the dark corners,” said Frank, describing the photos and hours spent reminiscing in the living room. “We wouldn’t have been able to do that without home care filling in the voids.”
She died three days after Christmas.
This article is part of Groundwork, an Edmonton Journal pilot project in engagement journalism that saw more than 700 seniors, caregivers and family members contribute through surveys and emails this winter to help shape our coverage. This was meant to ensure our reporting was focused on issues that matter most to our community, building trust and opening the work of journalism to new voices.
Read more at edmontonjournal.com/groundwork and help us evaluate the project. Our final series on COVID-19 and continuing care runs Tuesday through Friday this week. As a final event, join us live for a Q&A at noon May 4 with Caregivers Alberta.