Cover

All in The Family

Shortcomings in institutional and home care leave relatives facing more costs and responsibilities

Patricia Chisholm January 17 2000
Cover

All in The Family

Shortcomings in institutional and home care leave relatives facing more costs and responsibilities

Patricia Chisholm January 17 2000

In retrospect, Surrey, B.C., systems analyst Janet Ollhoff can hardly believe she managed it. In November, 1998, her life was thrown into turmoil when her father, Hans, suffered a debilitating stroke. While he struggled for survival in a hospital intensive care unit, the 38-year-old Ollhoff moved her mother, Irmgard, into her own home. For a decade, her father had taken care of Irmgard after she suffered her own massive stroke. Ollhoffs days became exhausting and emotionally draining. She had to do everything for her mother, from cutting food into small bits and changing her diapers to monitoring her diabetes and heart condition. In the evenings, while her husband, Al, looked after her mother, Ollhoff visited her father, lifting him onto the toilet or feeding him when nursing help was unavailable. Juggling their needs and her own job took its toll. “I felt completely isolated,” Ollhoff recalls. “No one could understand what I was going through.”

Such stories are becoming alarmingly common. Tens of thousands of Canadian baby boomers are confronting the challenge of taking care of their parents, often when they are heavily weighed down by the demands of careers and family life. Every family copes in its own way but the issues each faces are remarkably similar. What does a diagnosis of chronic illness—stroke, Parkinsons disease, osteoporosis—really mean? Will it be possible to care for an elderly spouse or relative at home, or is an institution the only answer? If so, will there be enough money to pay for quality care that can easily cost thousands of dollars per month?

Then there is the guilt. In Ollhoff’s case, it came last fall, after she placed her parents, both 70, in a nursing home in nearby Cloverdale. Although she visits them every evening—the nursing home is about 20 minutes from her home in Surrey—she still wrestles with the emotional fallout of deciding to move them to an institution. “I cry all the time,” she says. “There is major guilt. Maybe if I’d spent more time with my mom, my dad wouldn’t have gotten sick.”

The dilemmas of caring for the elderly are not new, but there is no doubt that finding solutions is more urgent than ever before. By 2021, Health Canada estimates, there will be 6.9 million Canadians over the age of 65, almost double the current number. An alarming proportion will have Alzheimer’s disease, an increasingly common form of dementia that is already straining services for the elderly (page 22). “I believe there will be a crisis if we don’t plan properly,” says Marlene McClellan, associate director of the Nova Scotia Centre on Aging at Mount Saint Vincent University in Halifax. “It is, however, one that can be fully averted. This is the most predictable demographic change we’ve ever had.”

To tackle that problem, governments will have to build far more facilities and provide better home-care services than are available right now. In fact, families who have struggled to find affordable care for their relatives say the crisis is already here. On average, only seven per cent of seniors require long term institutional care, yet many people with relatives in nursing homes cite shocking levels of neglect and incompetent care. As well, conditions inside some homes can be grim—wards rank with the smell of urine, residents locked in their rooms to prevent them from wandering. When family members complain, their concerns are often dismissed by overworked staff who are irritable, tired and angry.

Adding to families’ concerns is the bewildering quilt of so-called government standards across the country. In Ontario, “nursing homes” are subsidized and regulated while “retirement homes” are not. There are also wide disparities among the provinces on home care. British Columbia imposes no limit on the number of hours of home care—service provided to seniors in their own homes by health-care professionals. In Prince Edward Island, only 28 hours a week of such care is paid for by the government. Karen Parent and Malcolm Anderson, authors of a 1999 report on home care in Canada, argue that there is no coherent strategy, nor sufficient money and manpower, to provide these services. “That’s fine for people who can afford to buy private care, or for those with low incomes who qualify for subsidies,” says Anderson, the director of research at the Queens Health Policy Research Unit in Kingston, Ont. But there is a middle band of people who become impoverished by having to provide for themselves. The growing trend is that more and more responsibility is being placed upon families to provide the care that was once publicly funded.”

There is mounting pressure to improve what professionals call the eldercare system. Statistics Canada reports that 90 per cent of such care in Canada is provided by family members, and most of those people are middle-aged baby boomers, who are accustomed to agitating for change. David Globerman, for one, was so incensed by the care his father received at an Ottawa hospital in 1996 that he started the Running to Daylight Foundation, a Toronto-based organization devoted to improving institutional eldercare. Globerman, 46, says he believes his 85-year-old father was given low priority by medical staff because of his age: he died within weeks of entering hospital, largely, Globerman believes, because doctors treated him for pneumonia when in fact he had suffered a stroke. “Clearly, there is a bias in the health-care system against the elderly,” says Globerman, who is a financial consultant to the Ontario ministry of health in Toronto. “As a society, we don’t value them. So when there is a lack of resources, they fall to the bottom of the barrel.”

Even families who avoid major traumas say they are often forced to settle for lower-quality care than they would like

Add government cost-cutting to that casual attitude and the human consequences can be devastating. Alberta has been slashing health-care costs for the past decade, and as far as Edmonton lawyer Ernest Kambeitz is concerned, his 92-year-old father suffered terribly as a result. Last June, Thomas Kambeitz’s Alzheimer’s abruptly worsened, and the seniors’ lodge where he had lived for three years decided that he was too “disruptive.” On only a few days’ notice, lodge officials gave his children an ultimatum: either Kambeitz was moved to a private nursing home or they would have to come and pick him up.

With so little warning, the family felt forced into accepting the arrangement. But Ernest Kambeitz was deeply disturbed by what happened next. The change of surroundings greatly disturbed his father— something that is common among Alzheimer’s patients—and he became more verbally aggressive. The understaffed nursing home, Kambeitz says, was in “terrible shape.” Staffing levels were inadequate and it stank of urine and body odour. Without the resources to care for Thomas properly, staff simply “drugged him up,” Kambeitz says, and tried to immobilize him by taking his cane away.

As a result, Thomas fell many times and sustained several injuries, including two black eyes and a broken nose. His intellectual decline was also rapid. “He went from a man who could converse and recognize family members to someone who sat and drooled,” says Kambeitz. And even though Kambeitz finally succeeded in moving his father to another institution where the standard of care was much better, Thomas never fully recovered. He died in late November. “When I saw my father like that, I cried,” Kambeitz says. “I think the whole experience just finished him off.”

Even families who avoid such traumas say they are often forced to settle for lower-quality care than they would like, despite their best efforts. Nancy Millar, a Calgary writer, has watched in dismay for eight years as her mother, now 88, has tried to adapt to living in a poorly funded long-term-care institution. The experience prompted Millar to research the area and what she has found is deeply disheartening. Millar talks of the numbness that pervades life in such institutions, where residents—whom she calls “inmates”—are expected to wear bibs at mealtimes, whether they need one or not, are offered only one bath a week and are put to bed at 7 every night. Television is a constant presence, in rooms as well as common areas. Her mother’s home is about average in quality, she says, but that is not nearly good enough. “To see her in that long hallway, hopeless,” she says, her words trailing off. “It breaks my heart, every time. She’s sick, she’s old. It’s so sad.” Distance, money, a full-time job: those realities prevent many adult children from taking care of their elderly relatives, even if they had the emotional and physical reserves to do so. Perhaps because their options are so limited, they often convince themselves that good long-term care will be available if and when it is needed. But that, many experts say, is a dangerous assumption. Ernie Lightman, a professor of economics in the faculty of social work at the University of Toronto, has been studying seniors’ care for two decades and says that almost all the provinces have tried to limit their inventories of long-term and chronic-care beds, which can range from $ 150 to $500 a day to maintain. That has resulted in lengthening waiting lists and declining standards: in Ontario, about 18,000 people are lined up for a place in a government subsidized nursing home, forcing many into unsubsidized, unregulated retirement homes where the quality of care ranges from excellent—with huge fees—to deplorable.

Indeed, Lightman says, backing away from regulation is seen by some governments as an ideal way to stay clear of the whole messy business. “If the government has no responsibility, when someone dies in one of these homes, the minister doesn’t have to answer for it in question period,” he says. “It cuts costs.” Lightman, who believes that home care is the only option for the future because it costs far less and is a more humane way of caring for the elderly, says he is deeply pessimistic about improving the general quality of long-term-care institutions. The vast majority, he says, are and will remain “warehouses for death.”

Carmela Channer, a customer service representative for a Toronto courier company and the mother of a young child, experienced the problems with institutions firsthand. She cared for her mother at home for about a year after she developed a chronic liver ailment. But when her mother’s condition worsened and the family could not afford to hire a private caregiver, Channer, 33, was forced to place her mother in a long-term-care facility. But the home fell far short of Channer’s expectations. There never seemed to be enough staff and Channer felt she was not being kept informed of her mother’s condition. After she fell out of bed one night last spring, Channer and her brother launched a lawsuit against the home. Her mother died about six weeks later. According to the autopsy report, the cause of death was peritonitis—“secondary to displaced gastric tube.” She was 73. The home, which is run by the City of Toronto, is investigating.

The tragic episode was devastating, “The decision to put my mother in an institution was the hardest I ever made,” Channer says now. “I know from my Italian background that you just don’t do that,” she says, adding: “If I could give any advice, I’d say keep your parents at home. But when people are working, it’s so hard. I think the public underestimates the responsibility of eldercare.”

In fact, keeping parents at home is the choice made by the vast majority of Canadians. According to a new report by Statistics Canada, about 2.1 million Canadians are caring for senior relatives, either in their own homes or in the patients’ homes. About 60 per cent of those caregivers are women, most of them have other jobs, and a quarter were also looking after children under the age of 15. And while the StatsCan survey found that most people felt good about caring for elderly relatives, it also documented their costs in lost career opportunities and personal time.

Sheila Porter, 61, can attest to both the rewards and the trials of caregiving. In 1992, her mother suffered a stroke, and Sheila and her husband, Art, uprooted themselves from their home and careers in Calgary and moved back to the tiny house in Sackville, outside Halifax, where she grew up. Porter, a new-products demonstrator, was determined that her mother would not be forced to leave the neighborhood where she has lived for 50 years. Seven years later, Porter is still struggling with her new life. Pearl Worthen, now 85, is paralyzed on one side, has impaired speech and does not understand verbal directions. A refined woman who still enjoys dressing up and wearing makeup, she now requires help with daily basics like bathing and brushing her teeth.

Ninety per cent of eldercare in Canada is provided by family members, and 60 per cent of those caregivers are women

Porter has no regrets, but she wishes she had been more prepared for her role as a caregiver. There are times when she feels that her acts of caring have become a job and she craves more time for herself: although government-paid home-care workers help out three times a week, the house is so tiny that Porter must leave when they are there. The best solution, she says, would be a long-term-care facility in Sackville, so that she could visit her mother daily, but there isn’t one. “After my generation, I’m afraid for old people,” Porter says. “They better have more places for the elderly, or they’ll be out on the street.”

Some communities have resorted to looking after themselves. Among those long-term institutions with consistently high reputations—and waiting lists to match—are those set up and administered by groups with a strong tradition of caring for the elderly. The Mon Sheong Foundation Home for the Aged, nestled in a residential neighborhood near Toronto’s Chinatown, houses 105 residents of Chinese descent in bright, airy rooms, with modern extras such as exercise equipment. And at the 188-bed Villa Cathay Care Home in Vancouver, nurses speak Mandarin, Cantonese and usually one other Chinese dialect; the kitchen serves Chinese cuisine; the recreation schedule includes f ai chi and bingo; local theater groups perform Cantonese operas; the calendar revolves around Chinese holidays and festivals, including the new year on February 5. As a result, says Hudson Chong, Villa Cathay’s manager, the home has a one-year waiting list.

Similarly popular is Maimonides Hospital Geriatric Center, in the residential neighborhood of Côte St. Luc in Montreal. Servicing the province’s Jewish community, the 387-bed home has a synagogue on-site where two part-time rabbis—for the Sephardic and Ashkenazi faiths—conduct services for all occasions, including Passover, Rosh Hashanah and Yom Kippur. In addition to a medical staff, the center has a recreation department that co-ordinates social and cultural activities, and several hundred volunteers who run the gift shop and take residents for walks.

Still, quality nursing homes cannot look after the vast majority of seniors. The better solution for them, according to a 1998 recommendation by the National Forum on Health and supported by many leading gerontologists, would be a national system of home care. Embracing everything from weekly housekeeping to daily visits from a registered nurse, home care allows elderly people to remain in familiar surroundings until the last stages of physical decline. It is far less expensive than institutional care—estimates range from $50 to $200 a day—and is more emotionally satisfying for both the elderly and their families if there is enough support from visiting professionals. “In the past few decades, we have found that things other than hospitals, drugs and tests are crucial for good health,” says Neena Chappell, director of the Center on Aging at the University of Victoria. “Good social supports, more exercise, better nutrition—that are generally better delivered by home care—are at least as important.”

Even though academics and lobby groups, such as Canada’s Association for the Fifty-Plus, have long pushed the idea, most provincial governments have been unwilling to commit sufficient resources to home care. Ontario recently capped home-care entitlements at a mere 60 hours a month. But when the services are available, they can help frail seniors remain independent. Eighty-year-old Bill Cummins of Toronto has been confined to a wheelchair since he suffered a minor stroke in 1997. His balance now is uncertain and his hearing has declined. But the former laboratory technician still gets around. Cummins is a regular at the Mid-Toronto Community Services frail-elderly program in a church a few blocks from his downtown home. A nurse came by three times a week after he was discharged from the hospital, but now he only requires once-a-week help with cleaning and tidying up. A niece helps out with groceries and he calls her every day, just to check in. Cummins’s large brown eyes are unclouded and he says there is really nothing he lacks: in addition to the social life at the community services center, he has breakfast every day at a restaurant near his one-bedroom apartment, and once a month, he has supper with his Anglican priest. “If they told me I had to go into a nursing home, I wouldn’t object,” he says. “But as long as I can look after myself reasonably well, I’d rather live on my own.”

Guy Proulx, director of psychology at Baycrest Center for Geriatric Care in Toronto, has spent the better part of three decades working with the elderly. He says that while the system has many flaws, he is becoming more optimistic about the future, largely because there is greater understanding of the problems, and growing demand for change. “I have noticed that people now are much more acutely aware of the frustrations and the issues, and that is music to my ears,” Proulx says. “We have an incredible challenge ahead of us, but this is much better than ignoring the problems.”

Provinces struggle to keep up with the demand for senior care

An estimated seven per cent of Canada's 3,795,121 seniors currently require institutional care, and 10.3 per cent require some form of home care. Generally, publicly funded home care is free, while the per-day cost to patients to live in publicly funded institutions is between $25 and $90, based on income.

The following statistics, supplied by the provinces and Statistics Canada, record the number of people aged 65 and over in each province; the number of beds at publicly funded institutions; the number of people on waiting lists for those beds; the number of people receiving some form of home care; the maximum number of hours or dollars of publicly funded home care for non-acute-care clients; and the number of people on home-care waiting lists. Figures for private nursing homes and private home care are not available.

BRITISH COLUMBIA

Number of seniors................519,284

Long-term-care beds............ 24,707

Waiting list..................... about 7,000

Total receiving home care ... about 105,000 per year

Maximum hours.....................unlimited

Waiting list.............................none

ALBERTA

Number of seniors.................... 294,610

Long-term-care beds..................13,767

Waiting list............not available

Total receiving home care.......... 65,199 per year

Maximum hours....will fund up to $3,000 per month

Waiting list............not available

SASKATCHEWAN

Number of seniors............. 148,757

Long-term-care beds..............8,981

Waiting list............not available

Total receiving home care.....22,816 per year

Maximum hours....not available

Waiting list............not available


MANITOBA

Number of seniors..........155,610

Long-term-care beds..........9,206

Waiting list..........................1,100

Total receiving home care.....about 32,000 per year

Maximum hours.....................unlimited

Waiting list.............................none

ONTARIO

Number of seniors............... 1,444,009

Long-term-care beds............... 56,990

Waiting list......................about 10,000

Total receiving home care.... about 400,000 per year

Maximum hours ............. 60 to 120 per month

Waiting list.......................11,000

QUEBEC

Number of seniors................ 927,132

Long-term-care beds.... about 49,000

Waiting list ................ less than 3,000

Total receiving home care.... 339,000 per year

Maximum hours .................... 42 per week

Waiting list ............................ none

NOVA SCOTIA

Number of seniors............. 123,830

Long-term-care beds.............5,877

Waiting list.............not available

Total receiving home care.. 12,000 per year

Maximum hours.....not available

Waiting list.............none

NEW BRUNSWICK

Number of seniors ............. 97,574

Long-term-care beds............4,143

Waiting list.......................about 83

Total receiving home care... 12,974 per month

Maximum hours...will fund up to $2,040 per month

Waiting list...........none

PRINCE EDWARD ISLAND

Number of seniors..............18,285

Long-term-care beds...............933

Waiting list.................................55

Total receiving home care... 2,200 per year

Maximum hours.........................28 per week

Waiting list...........................not available

NEWFOUNDLAND/LABRADOR

Number of seniors................ 62,082

Long-term-care beds...............2,958

Waiting list...................................480

Total receiving home care ......... 850 per month

Maximum hours...will fund up to $2,268 per month

Waiting list...................................292