Conscripted by Love part 1GO TO MONDAY, MARCH 22, 1999
Conscripted by Love part 2
Homecare by the Numbers
Photo Essay by Fred Lum
Tony Kneller has the hands of a man who spent a lifetime in construction. He has the booming voice and the salty language of a foreman too.
One of those big, powerful hands is gently, unconsciously, stroking the knee of Gretta, his wife of 54 years. That voice is reduced to almost a whisper as Tony struggles to describe his state of mind.
"There's days when I feel like I'm in a goddam prison. You get fed up with the routine of it, doing the same thing, day in and day out, and everything takes so damn long."
Gretta, who is nodding off at his side, begins to fall. As Tony helps her sit upright, she breaks into a hearty laugh, and he joins in -- just for the hell of it.
Gretta has Alzheimer's disease, and Tony has been caring for her almost continuously for the past seven years. His lifelong companion, once so powerful and independent, is now, at 76, childlike, needing to be fed, changed, bathed and watched constantly. Two years her junior, he barely has the energy to keep up.
"It's unrelenting, it never, never stops," Tony says, returning to his conversation. Gretta is asleep again, and turning to check, he lets his gaze linger and his thoughts drift. "But the crazy thing is that when I'm not with her, I miss it. She's a lot of good company still."
Hard as the caregiver struggle is for Tony Kneller, at least it has come at a time when he no longer needs to be going out to work or looking after children.
Not so Bruce Tate. He and his wife Kim, who live in Penticton, B.C., are in the middle of their wage-earning years and have six children, including a set of twins born in mid-January.
Before the twins arrived, Ms. Tate began to experience stomach pain and bleeding. An emergency cesarean section was performed, and during the operation the doctors discovered cervical cancer.
The twins were fine, but she was whisked to Vancouver for an intensive course of chemotherapy and radiation. While Ms. Tate received state-of-the-art treatment and wonderful accommodation at a Canadian Cancer Society lodge, her family life was in turmoil as she and her husband stumbled through the health-care maze.
"The system just wasn't ready to deal with us, and we weren't ready to deal with the system," Mr. Tate said. "They've got all this fancy treatment for cancer, but they're not much help with all the other stuff like letting us live our lives."
When Ms. Tate goes home in the days to come, she will have a lot of recuperating to do, and she will need a lot of help. Her needs are not medical but practical: Help cleaning the house, preparing the meals and minding the six kids ranging from newborns to teens, because she is too weak to do all the things she did before.
"But at this point, we have no idea what's going to happen when we get home," Mr. Tate said. "On top of everything else, that's really stressful."
Tony Kneller and Bruce Tate are just two of more than three million Canadians who have found themselves thrust into the role of daily caregivers. Caring for faltering spouses, aging parents, recuperating family members or disabled children, many of these unpaid caregivers are overwhelmed.
While paid care providers are appreciated and indispensable, family members are providing more than 80 per cent of Canada's homecare, and the tasks they must perform grow heavier each day. Many caregivers cling desperately to the stolen moments of laughter, of lucidity, of tenderness and togetherness to convince themselves it's worth the sacrifice.
The fact that their work is done in isolation and behind closed doors conspires to silence their cries for help. And the result is that many are alone, far too alone, in times of great need.
From weeks of interviews across the country, a clear message has emerged: People in all walks of life and with all manner of health problems want to live and die at home. But for their homes to remain healing and comforting places and not become prisons, some doors have to be thrown open:
Information: Look in most phone books in Canada under "homecare" and you won't find anything. When a crisis hits, few people know where to turn.
Availability: Programs vary wildly not only from province to province but often within regions, so there is no guarantee of basic services.
Access: Even where there are services, not everyone who needs them can get them. Because of budget constraints, for example, postsurgery patients who need short-term care are increasingly getting priority over frail seniors who need long-term care.
Affordability: The medicare system was created because medical crises were often proving financially ruinous for families. Today the caregiving burden is cutting short many careers and condemning some caregivers -- particularly elderly women -- to a future of poverty.
In short, Canadians are more than willing to embrace the notion of care in the community as an alternative to institutional care, but they want it to be part of a system that is as accessible, affordable and recognizable as the local hospital once was. They want it to be a true alternative, not a second-class system.
At present, the homecare system in Canada is not a system at all. The country's health ministers cannot even agree on a common definition of the term. Homecare today is an idiosyncratic patchwork of $1.1-billion worth of programs, rife with unfairness, as illustrated by the fact that there are threefold variations in per-capita spending among provinces.
Homecare's principal asset is an army of dedicated care providers, but they tend to be grossly underpaid and their job security non-existent, conditions that leave serious doubts about whether there will be a work force to keep pace with demand for services.
Much of the impetus for homecare in Canada has come from governments determined to cut costs, but fantastic claims about potential savings from shifting care from institutions to the community are largely unproven. The reality is that postsurgery patients are going home sooner and frail elderly persons are being kept home longer, but about half the people who need professional homecare are not getting it.
Beyond the arguments about balance sheets and public policy, debate about homecare generates considerable passion for a much more down-to-earth reason: Simply put, the vast majority of caregivers and care receivers alike prefer home to a hospital or nursing home. And, as the health system becomes more consumer-driven, they are demanding that it deliver not only better medical care but also a better quality of life.
Academics, government planners and politicians alike recognize that for this to occur, a continuum of care needs to be created. That means doing far more than pumping money into homecare: It requires a major shift in funding philosophy, perhaps a fundamental rethinking of medicare itself.
No change that profound is painless. But right now, family caregivers feel that they are bearing the brunt of it, that as the medicare system sheds its spendthrift skin it is preying on their vulnerability.
As the National Forum on Health, the most recent public inquiry to dissect Canada's health-care system, said in its final report: "The public supports care in the home and other forms of community-based care but does not react well to being conscripted into caregiving."
And conscripted they are. Regardless of their ability or willingness to do so, there is a basic presumption that all families will provide care, and that professional homecare workers will be provided only when doing so provides an immediate savings to the health system.
As a result, families are increasingly deciding to make a financial sacrifice and hiring private care providers, or they are working themselves to exhaustion.
Lorna Hillman, executive director of the Family Caregivers' Network Society, says that caregivers don't want the world -- they just don't want to be alone in the world.
"Contrary to popular myth, most families in this country care for their own. If they didn't, the system as we know it would collapse. But right now the system exploits caregivers. It doesn't provide any support or direction, and it doesn't value what people are doing."
The reality is that no one gives much thought to homecare until they are thrust into a crisis. And there is no telling when you will need help, when a family member will be felled by a stroke, consumed by dementia, immobilized by a broken hip or gripped by cancer.
For the Tates, as for many families suddenly faced with homecare needs, one of the major frustrations is getting basic information, finding a navigator through Canada's labyrinthine health and social-services system.
"It's not unusual for people who suddenly find themselves with a sick family member to make a dozen phone calls and get absolutely no information," Ms. Hillman said. "The health-care system is complex and confusing at the best of times, and people, particularly older people who need homecare, need help deciphering who's who, what's what, and an advocate to tell them what are their rights."
Increasingly, governments are setting up central homecare-information lines, and scouring emergency rooms and nursing homes for patients who could be better cared for in the community. But seeking out homecare help is still far from a reflex; little education work has been done, and not enough effort has been made to centralize information for those who go looking.
Mr. Tate said it is wonderful that cancer patients are no longer kept in hospital for months at a time, but he believes as much thought should go into treating the non-medical side effects as goes into treating the disease. For the couple, childcare was just as important as chemotherapy, but they were treated as unrelated issues.
"Just give me a number where you can call and the person answering the phone -- if you don't get a machine -- can actually act instead of giving you the runaround," Mr. Tate said.
At least 500,000 Canadians are already getting professional care in the home, but many times that number are still being cared for by loved ones who don't have any help. And it is not obvious that homecare programs, despite rapid expansion in every province, are keeping pace with need.
Three-quarters of people discharged from hospitals today go home without any provision for homecare. And many people who just a few years ago would have been in hospital are now remaining in the community but not getting adequate aid to stay healthy. The group getting short shrift is the one most in need -- the slowly deteriorating seniors who, for a variety of reasons, don't reach out for help and who have virtually no political clout.
Tony Kneller is, in many ways, typical of someone who fell through the cracks. For four years, he cared for his wife without any outside support. "I didn't know nothing about where to go, so I just did my duty," he said.
By accident, he happened upon a public-health nurse who referred him to services. Now he gets some home support -- a worker comes once a week to bathe his wife and do some housekeeping -- and he takes Gretta to a day program run by the Victorian Order of Nurses for a few hours each week. It's just enough to keep him sane.
Access to such respite services is a crucial part of making a homecare system work, because without adequate backup many caregivers are burning out, falling ill and dying before the care receiver.
But other things are also needed. All the homecare help in the world may not relieve caregiver stress if there are not appropriate related services such as accessible and affordable housing, transportation, recreation and education.
"I would say 60 per cent of my emotional energy is spent fighting for services -- that's energy I would rather spend on my daughter," said Janice Maxwell of Victoria, whose 19-year-old daughter Melanie has cerebral palsy and severe epilepsy.
The Maxwells have no complaints about homecare in itself -- Melanie gets two hours daily with attendants who help her dress, eat and clean up -- but they are constantly frustrated that assistance is strictly limited to the home setting.
"The homecare system we have is designed for ill, dying people, it's designed for people who never leave their homes," Ms. Maxwell said. "Melanie has different needs -- going to school, developing a circle of friends, going to the theatre -- but she can't get any help with that.
"We have a system that will do everything imaginable to let people die at home, but it will do nothing to ensure that people have a life."
In a society where 16 per cent of the population have disabilities, Ms. Maxwell said, the homecare system has to become more flexible and forward-looking. And it has to make provisions to relieve long-term caregivers, who are growing rapidly in number.
Ms. Maxwell and her husband have been caring for Melanie, who cannot be left alone because of seizures, for 19 years while maintaining full-time jobs and at times the stress has become almost unbearable.
"I've gotten to the point many times where I literally could not go on, where I think the only answer is to kill myself and take Melanie with me," Ms. Maxwell said. "As a society, we push parents to insanity. Wouldn't it make more sense to just provide them with a little more support?"
Despite the physical and emotional strain, the Maxwells have never considered sending Melanie to an institution. That may be appropriate for an elderly person in the end stage of life, Ms. Maxwell said, but for a young woman with so many hopes and dreams, "that would be worse than death."
Yet many people find themselves having to make painful decisions about institutional care when they are no longer able to care for a loved one at home.
Merilyn Scorse has been caring for her stepmother, Nora Heggie, for almost five years as her dementia has grown progressively worse. Because of a badly broken hip, Mrs. Heggie had mobility problems, and in December she broke the other hip. Since then, she has been on the waiting list for an extended-care facility.
"Although it was really difficult, I kept feeling that I had to give Nonie another chance at home," Ms. Scorse said. "But we're at the point now where it wouldn't be fair. I'm finally willing to let go -- but it's hard."
Moving a loved one from home to an institution relieves some stresses, but often engenders new ones, particularly financial. Ms. Scorse said that, thankfully, her stepmother has the means to hire a live-in care provider and to pay for a nursing home. Still, even with help and without financial worries, the Vancouver woman still found the demands of caregiving -- in addition to caring for her own children and working full time -- to be overwhelming.
"It's like running somebody else's life for them; you have to take care of every little detail. But, at the same time, you have to keep running your own. . . . I don't think people really know until they're in this situation how much of your being is consumed, how much it takes to keep this up day after day."
Ms. Scorse has already lost her father and stepfather to long-term illnesses, and sees her mother of 82 also beginning to need some care. She said baby boomers have to start preparing themselves for what she has gone through, on an emotional and financial level.
There is every indication that the generation that's inheriting the homecare burden is not ready for what lies ahead. A study by the Heart and Stroke Foundation found that "baby boomers are poorly equipped to cope with the growing burden of caring for parents incapacitated by stroke," and presumably by other ailments. Two-thirds of survey respondents said they would be unable to adjust their hours of work to provide care; almost the same number said they would find it hard to cope with a person in need of care moving into their homes; and as many again said that caregiving would be a financial burden.
Demographic realities, however, make it increasingly likely that boomers will become caregivers. Early in the new century, about one million of those over 65 will have some level of disability, and for more than 300,000 elderly Canadians that disability will be severe, according to research published in the Canadian Medical Association Journal.
Brenda Marin-Link, director of community care for the Capital Health Region, said: "The pressures are only going to get worse over the next 20 years, so we have to get smarter and more efficient now. One of the first things we have to do is figure out how to value caregivers, how to relieve their stress before it becomes a health-care issue in itself."
Like many caregivers who are toiling away daily, burning out and growing frustrated, Ms. Scorse has a stern warning for governments: Unless a better system of homecare emerges, there is soon going to be a backlash the likes of which they have never seen.
"This isn't about me, it's about a lot of people . . . ," Ms. Scorse said. "There is so much pain out there, and the politicians better realize it soon, because something is going to give."
Public spending on homecare: $2.1-billion in 1997-98, up from $1-billion in 1990-91.
Ottawa and the provinces spend about $69 per capita on homecare annually.
Homecare accounts for only 4 per cent of public spending on health in Canada.
About 523,000 adults, or 2.4 per cent of the population, received homecare in 1994-95. Of those, 335,000 were 65 or older, while another 185,000 seniors were in institutions.
More than half of Canadians who say they need help with activities of daily living -- preparing meals, shopping and housework -- say they are not receiving any homecare.
People who have cancer or who have had a stroke are twice as likely to receive homecare as people without those conditions. One in four people who have had a stroke receive homecare services.
More than half of people receiving homecare report being in poor health. About 28 per cent of those receiving homecare said they had been in hospital for eight nights or more in the previous year.
About one in eight Canadians are caregivers: 1.1 million men and 1.6 million women.
One in five caregivers report that their health has deteriorated as a result of their duties. One in four report poor sleep patterns.
More than 11 per cent of retired people, men and women alike, perform caregiving duties.
About half of caregivers say their duties have had negative repercussions on their paid work, including absenteeism. Four in 10 caregivers say they have had significant out-of-pocket expenses.
Almost half of caregivers say they do not need additional help to cope. Others say they need one or more of the following: financial help, more flexible work arrangements, easier access to respite care, training in caregiving.
Source: Statistics Canada.
Photo Essay by Fred Lum