PHOTOS BY BRYCE MEYER

No Place to Age

The costs and indignities of long-term care in Alberta

By Hope Smith

Retired provincial court judge Tom McMeekin became a bit of a minor celebrity a few years ago when he decided it was time the world knew what life was like in a local nursing home. McMeekin’s multiple sclerosis had progressed to a point where he and his wife couldn’t meet his needs at home. Like everyone else going into long-term care in Alberta, McMeekin had to take the first bed available. “Life was hell, quite frankly,” he recalls. “There were four of us sharing one bathroom: two women and two men. The staffing was so bad that I launched a petition. I described sitting and waiting, desperate to go to the bathroom, and so on. I got 1,500 signatures.” There was a brief media storm, and things got a little better, but for 16 months McMeekin had no space to call his own; his roommate wouldn’t even allow him to watch the tiny TV he had on his bedside table.

He’s now more comfortably ensconced at the Colonel Belcher Care Centre, one of Calgary’s newest facilities, where each resident enjoys the precious privacy of their own room. “When I moved in here, I thought I’d gone to heaven,” he says. Mind you, he only gets one shower per week, so he pays for two more at $40 each. That’s $80 per week out of pocket—or more than $4,000 a year—for something most of us take for granted.

McMeekin may be in one of the newest facilities in Alberta, but even here things aren’t perfect. “The staff are excellent,” he says, “but there aren’t enough. They’ve done away with registered nurses [RNs]. Licensed practical nurses [LPNs] do most of the work.” And there’s the regimentation of the institution: dinner at 5:00 p.m.—“One hundred ways to cook hamburger,” he smiles.

McMeekin’s experience, however, could be called cushy compared to the neglect many senior citizens experience in long-term care in Alberta. And even the limited resources being put into long-term care in this province are in jeopardy. The Alberta government, like those in most provinces, now proposes that many seniors currently in publicly funded nursing homes shouldn’t be there. Instead, they argue, these seniors should be in some other type of assisted living arrangement (including private facilities and “aging-in-place”) where necessary health services would be delivered by home care while other services—including “unnecessary” services like showers—would be paid for by senior citizens themselves.

It’s a proposal based on shaky premises. “Where is the data showing that those people don’t belong [in long-term care]?” asks Donna Wilson, professor of nursing at the University of Alberta. “The government hasn’t collected data for 10 years.”

Seniors advocates are also up in arms about the shift. “The [government] promises that care will be virtually the same, but they pass it off to investor-owned facilities,” says David Eggen, executive director of Friends of Medicare. “There aren’t the same regulations regarding nurses or the same provisions for training.”

The cost implications for individual seniors could be enormous, he adds. “Once you move from long-term care to assisted living, you’re not afforded the protection of price controls,” Eggen says. (Alberta seniors pay from $16,000–$20,000 a year to live in publicly-funded long-term care; they can pay up to $72,000 a year for private assisted living facilities.)

Also in the works is a new omnibus Health Act, which will supersede all current health legislation, including the Nursing Homes Act. The Nursing Homes Act sets out standards which guarantee residents a minimum level of care. Under the proposed new legislation no such specifics are laid out. “What is proposed is an Act with principles that are so vague as to be meaningless,” says Noel Somerville, chair of the Seniors Task Force for Public Interest Alberta (PIA).

Most Albertans haven’t thought past the “elderly” stage to the “incapacitated” stage, and even fewer have any idea of what awaits them in long-term care. “Doing some market research five or six months ago we found that people don’t think about it until there’s a crisis,” says Greer Black, president and CEO of Bethany Care Society, a not-for-profit organization that operates close to 800 long-term care and supportive living beds in the province.

The number of elderly who need the 24-hour medical support provided in long-term care is about 4 per cent of the senior population; not a very big number, hardly worth thinking about—until it’s your relative who’s been assessed as needing such accommodation. Then you begin to realize that the nursing-home residents of this province would populate a town the size of Camrose (some 16,000). Not so insignificant. And that number is set to double when baby boomers hit their 80s.

Projections put Alberta seniors at 20 per cent of the province’s population—or more than 880,000—by 2025, when the last baby boomers turn 65 and the first are starting to need long-term care. That group of men and women in their 80s and beyond will number more than 35,000. According to Dr. David Hogan, head of geriatric medicine at the University of Calgary, “[Long-term care] is not an unusual thing. A person’s risk over a lifetime is 30 per cent. We have to expect that many of us will have to move.”

Helping a relative move into a nursing home is one of the most painful of life’s experiences. If you are the spouse, you are grieving the loss of a once-vibrant partner, and the comfort and support they gave you, and at the same time, you are coping with the prospect of a lonely future. If you are the child, you are grieving the loss of the strong and healthy person who brought you up, and dealing with the fact that you must now assume the role of parent. “For children, it is very difficult to take on making decisions for their parent, for someone who has lived 80-plus years making their own decisions,” says Dr. Norah Keating, professor of human ecology at the U of A and a family gerontologist. Consumer/seniors advocate Wendy Armstrong, whose mother was in long-term care, agrees. “It’s a grieving process. You need the support of other people.”

“There are other costs, too,” says Keating. “With dementia there is loss of relationship: you may not be able to relate to your relative. Researcher Pauline Boss calls it ‘ambiguous loss.’ They’re not the same person, but they’re still there. That kind of ambiguity is really difficult because you can’t resolve it.”

Keating points out that grief is not the only challenging emotion caregivers have to deal with. “Pressure on families is emotional, physical and economic,” he says. “The transition to a nursing home is fraught with guilt: we think ‘I should be able to do this on my own.’ ” As Armstrong sees it, “It’s not only a grieving process, it’s also a new care responsibility.”

Most of us haven’t thought past “elderly” to “incapacitated”to what awaits us in long-term care.

And it’s often one we don’t anticipate. “When people hear ‘long-term care,’ they think, ‘that’s a long way off, it’s nothing to do with me, it’s a seniors issue,’ ” Armstrong says. “I never describe it as a seniors issue. The reality is it’s a family issue. This is an issue that has a profound ripple effect on the family and community. At one presentation a young man asked me, ‘Why is this important?’ I said, ‘If your widowed dad had a stroke tomorrow, would it be you or your wife who quit their job?’”

Facing a similar situation, “Muriel Patman” (name changed to protect privacy) quit her job. Her father has been waiting for a private room in his Calgary nursing home for four years. “He worked hard all his life, and now look what he has,” she says. “Three men sharing one dinky bathroom. There’s only room for his bed, side table and dresser. No chair.” She and her sibling spent a huge amount of time dealing with fallout from staff shortages, and eventually decided to bring in their own caregivers at a cost of $10,000 per month.

“They’re doing everything the staff should be doing: helping with meals, changing him, moving him around,” she says. “But external assistants can’t do transfers, so sometimes they wait 45 minutes.” For Patman, the need for continuous vigilance and oversight was overwhelming. “I finally had to leave my job. It took so much time, having to be the squeaky wheel.” But she’s paying another price, too: lost connections. “I may go back to work,” she says. “It’s isolating, having to do so much for Dad.”

Carol Wodak says she became an outspoken seniors activist after dealing with her mother in an Edmonton nursing home in 1995. Wodak, now 70 herself, became so involved in her mother’s care that she pretty much abandoned her own interests. “I used to do quilts, make clothing, doll clothes… my work table looks the same today as it did in 2005. [Caring for my mother] became a full-time job,” she says. “I remember thinking ‘at least she’s going to be cared for 24 hours a day.’ I learned really quickly that I couldn’t stop worrying; the level of care required of me was even greater. I couldn’t stand what was happening to my mum. I was fighting to get her one bath a week—every week.”

“Willa Shields” is not working, but even so, she finds caring for her mother a challenge. At this point, her mother is in an assisted-living complex with private health services rather than home care. Shields is picking up the slack, not just financially but in terms of time. “I’m probably averaging 15 hours a week,” she calculates. “It’s put a lot of things on hold—not top-of-the-list things, but things I would like to have done: taking longer trips, spending time with my grandchildren. I can do the basics but I’ve cut down on socializing. I’d love to have people over for dinner but I can’t do it. Either I’m too tired or I don’t have time.”

“Fern Janson” is following the aging-in-place dictum with what some might deem heroic efforts. Her father has dementia and other, physical problems and the family wants to keep him at home as long as possible. “The doctors, including a geriatrician, told me my dad won’t get proper care in long-term care,” she says. “They said, ‘Your dad will be sedated, diapered and restrained.’ ” She tried home care. “Home care would give us an hour at breakfast, an hour at lunch and an hour at dinner—and it was a different person every time. It just wasn’t right. Over time I decided to do it myself. I do a way better job because I know my dad.” Now she spends well over $10,000 a month bringing in support workers privately and countless hours managing everything. “This is my full-time job, helping my dad,” Janson says. Putting her father in assisted living was also not an option: “Assisted living places are private and they have their own criteria for who they’ll accept.”

While a monthly expenditure of $10,000 for private caregivers might sound high to the uninitiated, the cost of services adds up quickly. Caregiver rates start at around $25 per hour, or $300 per day for a 12-hour day, which works out to $9,000 per month. Caregivers provide bathing, dressing, medication supervision and other services not provided by healthcare. Add housekeeping and meals and you get to $10,000 pretty quickly. These costs can double if two parents need special care.

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In addition to bearing the monetary cost, however, these women are examples of the hidden costs of “aging in place.” The U of A’s Norah Keating lays it out: “You’re going from full time to part time, leaving employment altogether, taking early retirement. So people are taking short-term and long-term economic hits—not only loss of salary, but perhaps reduced pensions. It’s getting to be a big and growing issue. The other costs are people’s time. There’s some kind of assumption that if you’re providing the care it’s free. But you may not be taking care of your family or yourself. Those are economic costs.”

In the summer of 2010, 1,700 people were waiting for admission to long-term care in Alberta. More than 700 of them were taking up acute care beds in our already overstressed hospitals; the rest were waiting at home or in assisted living. These numbers have barely changed in the past 10 years. Neither has the number of long-term care beds, which has ranged from 14,000 to 14,300.

Long-term care in Alberta operates in borderline crisis mode. Just about every facility is short-staffed, which limits the amount of personal attention any one resident receives. Infrastructure is deteriorating, the province is already short of long-term care places and government policy is heading into unexplored territory that includes a lot more privatization. On the one hand, facility owners want provincial funding increased by 40 per cent; on the other, a class action suit against the province claims the government overcharges nursing home residents. A government study called “Visions 2020, The Future of Health Care in Alberta” forecasts massive growth in demand for long-term beds—some 50 per cent between 2008 and 2020. In another document, “Aging in the Right Place,” the government claims that, with alternatives in place, the number of beds can remain static “for the next several years.”

To the government’s incoherent policy add a looming shortage of healthcare professionals. According to the U of C’s Dr. Hogan, “One of the big issues is that very few students are going into geriatrics, gerontology in medicine, nursing, physio, occupational therapy. It’s very hard to recruit. These are viewed as less glamorous aspects of nursing, for those with less training. But they’re also more difficult areas to practise. There are more complex people with multiple problems, physical limitations.”

This is why it’s important to have RNs on staff, according to Bev Dick, vice-president of the United Nurses of Alberta. “The elderly in a care facility usually have several issues,” she says. “They’re very vulnerable. There’s all kinds of research to show that when you take RNs away, bad things happen. Other care staff don’t necessarily have the skills to recognize when a condition has worsened. By the time the RN is brought in, the intervention becomes more costly and harder on the patient.”

The ratio of RNs to LPNs fluctuates in Alberta, with demand for LPNs (formerly called nursing aides or orderlies) rising and falling depending on system needs, resources and healthcare trends. According to the College of Licensed Practical Nurses of Alberta, the number of LPNs “steadily declined” in the 1980s and 1990s as their value and role were seriously questioned, but has since risen following a review of education and a period of mandatory upgrading.

It’s a contentious subject. Alberta saw a 17 per cent decrease in the number of RNs in direct long-term care from 2007 to 2009 due to the closure of public facilities and transfer of patients to assisted living, increased numbers of lower-paid LPNs, reassignment of RNs to administrative duties and staff reductions. Tom McMeekin’s wife, Sandy, a former RN herself, watched the change. “I worked in long-term care for 15 years, and staffing used to be a lot better,” she says. “With the loss of RNs the things that should be in place for quality of life are gone.”

In many cases, the facilities themselves do not contribute much in the way of quality of life. Some 50 per cent of the long-term care facilities in Alberta are 30 years old or older, and 50 per cent of the beds are in shared rooms. In 2008 Alberta Health & Wellness published a fact sheet on its continuing-care strategy which included a number of promises that have yet to be acted upon, including a commitment to “refurbish 7,000 long-term-care beds by 2015.” Since 2008 the government has announced new beds, but they are described as supportive-living or continuing-care beds. This does not necessarily mean long-term care, but fits with its aging-in-place strategy.

Hasmukh Patel is CEO of AgeCare, a company that builds and runs long-term-care facilities, and president of the Alberta Continuing Care Association, which represents most of the continuing care accommodations in Alberta. “No question, buildings need to be replaced,” he says. But, he adds, the room and board payments mandated by Alberta Health & Wellness don’t cover the cost of capital. “Money to modernize has to come from the government.” Even then, new construction takes time. It may seem like 2031 is a long way off, but it’s not in the nursing home business. According to Greer Black, “We’re looking at a 20-year period in this sector; you need to look at demographics that far out because what we do is capital intensive. Getting the money to develop is almost a 10-year process.”

Garth Mann saw the writing on the wall years ago. His company, Statesman Corporation, was in the business of building resort residences. It soon became clear that some of the aging residents needed more support, and so Manor Village Life Centres was born: luxury seniors residences that offer a communal dining room and other social supports. “The real mandate is how to preserve independence as long as possible,” Mann says. “The last thing we want to do is create an institutional atmosphere.”

Staywell Manor in Calgary—a “premier seniors community”—has been extremely successful, says Manor Village vice president Nicolle Blais. “We’re looking at additional opportunities,” she says. “I think we’ll find private companies such as ours can’t build communities fast enough.” The catch: a room plus meals at Staywell starts at $4,000 per month, and despite Mann’s assertion that residents can stay “ ’til they become angels,” this cost is beyond the pocketbooks of many Alberta seniors. The facility also doesn’t offer the same extent of services as a nursing home.

“Children must assume a new role. It’s very difficult to take on making decisions for one’s parent.”

Public Interest Alberta’s Noel Somerville is concerned that a lot of Albertans are doomed to spend their last years blowing through their savings, running out of money and ending up in desperate situations. “The government will look after very low-income seniors and won’t worry about the people with lots of money,” he predicts. “It’s the people in between. A lot of people can afford the privately operated assisted living facilities only because they’re living off the proceeds of their house and worrying if it will last. I think that’s atrocious.”

It’s a situation that has seniors advocates in the province deeply worried. “People have to realize it’s a big problem for society; it’s in all our best interests to improve care for older individuals who have become infirm,” says Dr. Hogan.

Are there right ways and wrong ways to care for these people? Not according to Eric Wasylenko, executive director of clinical ethics with Alberta Health Services. “There are questions society needs to ask,” he says. “How much are we willing to put the burden on the family, and how much are we willing to put the burden on society to pay for our care?”

Most Canadian baby boomers have had access to excellent healthcare their whole lives. They’ve listened to the advice of nutritionists, doctors and trainers and they expect their bodies to hold up well into the future. As Dr. Keating says, they expect to be “healthy, healthy, healthy, healthy, dead.”

But when that doesn’t happen—when those corporeal assets start to let them down, and there’s no quick fix—what is going to happen? Are they going to go gladly into long-term care, sharing a small, cheap room with some stranger or mouldering away alone and in poverty? It’s a scary scenario. If those of us who are edging toward old age don’t get involved, we will have no control over what could be a rather bleak future.

Hope Smith is a freelance writer whose first-hand experience with senior care in Alberta prompted her to write this story.

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