Hidden Heartbreak

The Family

Susan McClelland January 17 2000

Hidden Heartbreak

The Family

Susan McClelland January 17 2000

Joan and Norman Pelham had a good life together. In 43 years of marriage, the Newmarket, Ont., couple raised three children, built a successful small business and lived a comfortable middle-class life. They were, says Joan, “soul mates.” But by the time Norman was in his mid-50s, Joan, a nurse, began to notice he was getting more forgetful. He lost money and would become disoriented even in familiar surroundings. By 1994, when Norman was 58, he was no longer able to function properly at work and was diagnosed with Alzheimer’s disease. “We were planning our retirement, we were going to go places together and do things,” Joan says wistfully. “I knew all along we weren’t going to, but somehow I kept hanging on to the belief that things would change.”

Instead, she gave up her own work, and for 30 months, she was Norman’s full-time caregiver at home—a grueling and emotionally draining 24-hour responsibility unique to Alzheimer’s. Beyond cooking, cleaning and bathing, Joan became the link between Norman and his mind, filling in words, names and memories when he forgot. She had to keep her husband from harming himself or from wandering away from their home north of Toronto. Some nights, Norman would awaken, and although his once-robust 200lb. body had shrunk to 150 lb., he still found the strength to move iron bed frames, mattresses, cupboards and bookshelves—for no reason. Sometimes he had nightmares, and on two occasions, he attacked his wife while she slept. In the mornings, he never remembered a thing—a fact that only made Joan's life more unsettling.

Alzheimer’s is devastating for those who have it and for their families, it threatens to overwhelm Canada’s fragile system of care for the elderly.

But the toughest stage came in 1996 when she decided she could no longer handle him all by herself. She searched for and eventually selected a publicly funded nursing home near their home, and hoped it would ease both her workload and suffering. It did not. The staff there addressed Normans physical needs—food, comfort, hygiene—but she says they did not seem to know how to deal with Alzheimers dementia. So Joan went in several times every day to sit and talk with Norman. At the end, she slept in a cot beside his bed because, just as it had been when he was still at home, “you had to have one eye open all the time,” she says.

It proved too much. Even with her husband in a facility that was supposed to be shouldering the bulk of his care, Joan couldn’t sleep, she had no social or professional life, and she required antidepressants to get through the days. Then, in the last six months before he died, Norman didn’t even recognize her. “Not only was I dealing with my own grief of watching Norman die, but I had to deal with the pain of seeing him become someone else right in front of me,” she recalls two years later. “Then I get him in an institution and they didn’t talk to him, comfort him or treat him like the human being he was. Physically, emotionally and spiritually, I lost much of my strength.”

Pelham’s sad story is alarmingly common. Family members or friends usually take on round-the-clock responsibilities in the initial stages of Alzheimer’s, and they do so often at the expense of their own emotional and physical health. They are more likely to turn down promotions, take leaves of absences or, like Joan, leave the workforce altogether because the care required is so intensive. Moreover, the Canadian Medical Association reported in 1999 that up to 50 per cent of informal caregivers of Alzheimer’s patients experience “significant psychiatric symptoms.” Steve Rudin, president of the Alzheimer Society of Canada, says the impact of the disease is felt throughout society. “It touches the economy, social services and our entire health system,” he says.

That impact is growing in force. Alzheimer’s—the fastest-growing disease among seniors—is already overwhelming the country’s institutional and home-care systems. The Alzheimer society reports that 316,500 people over the age of 65 in the country are suffering from the disease or from a related dementia, such as that caused by other conditions including multiple strokes or diseases such as Parkinson’s. Although exact figures are not available, experts estimate that as many as half of all patients in long-term-care facilities in Canada have the disease. Yet most nursing homes were built to treat physically ill patients, not those who suffer from dementia. And although more funds in Canada are being funneled into home care, those services are diluted by health-system cutbacks in other areas. As a result, some of those funds are being used to treat acute-care patients with other maladies who have been discharged early from hospitals with too few beds available.

That, experts say, puts Canada on the verge of a catastrophe if governments don’t start building facilities and training workers to serve the 750,000 Canadian baby boomers who are expected to suffer from Alzheimer’s in 2031. They had better get started: they still haven’t discovered the precise cause of the disease, let alone a cure, and current medications only treat symptoms in the early stages of the disease. “People have been lulled into assuming that appropriate systems are in place to deal with these numbers,” said Timothy Young, president of the Canadian Home Care Association. “But they’re wrong.”

Alois Alzheimer, a German neurologist, discovered symptoms of the disease that bears his name in 1906. But until recently, doctors could not accurately make a diagnosis except during autopsies that revealed unusual knotted, rope-like structures inside the nerve cells of the cerebral cortex, the part of the brain responsible for memory and learning. Protein deposits, or what Alzheimer termed “senile plaques,” can also be found between the cells.

In the past 10 years, however, specialists have developed neurological and psychological diagnostic tests on living patients that are about 90per-cent accurate. Dr. Peter St George-Hyslop, a neurologist and molecular geneticist who heads up one of the world’s leading research departments on the disease at the University of Toronto, says Alzheimer’s is likely caused by unknown biological changes resulting from genetic and environmental factors. But despite speculation that aluminum in drinking water or head injuries could be triggers, “no environmental factor has been proven for certain,” he says. In the past 10 years in Canada, governments, foundations and pharmaceutical companies have gradually allocated more money— experts estimate between $3 million and $5 million annually— towards Alzheimer’s research. As a result, scientists are confident there will be more treatments available for sufferers in the next 10 years.

Even so, the only certain explanation for the increasing incidence of the disease is that people are living longer. What is known about Alzheimer’s is that it generally affects people over 65 and is marked by stages at which, increasingly, there is impaired judgment, time and space disorientation, mood swings and short-term and then long-term memory loss. St George-Hyslop claims the disease usually progresses over a 10-year period, from the first sign of symptoms to death, though it varies with each patient. In the final stages, sufferers cannot communicate, and eventually, they are weakened to the point where they are susceptible to other, and ultimately fatal, illnesses such as pneumonia.

Perhaps the saddest aspect in Alzheimer’s cruel advance is when patients are still aware of their declining faculties. “The one thing no one wants is to lose their mind,” says St George Hyslop. “It attacks what we value most about being human.” Norma Selbie, 60, a former elementary schoolteacher in Kelowna, B.C., concurs. “People joke that Alzheimer’s is just forgetting things, but it is much more bizarre,” says Selbie, who is in the early stages of the disease. “I will be talking to someone and all of a sudden I don’t understand what the words mean. I will forget that entire conversations ever took place or that I saw a movie or visited with a friend. The scariest thing is when I realize I don’t understand, or I have forgotten. I become panicky, anxious and insecure.”

It is scary, too, for caregivers, who are often the unreported casualties of the Alzheimer s war. Spouses, friends or offspring gradually take on more responsibility for meals, transportation, and organizing the finances and home often without realizing their relative is suffering from a disease that requires more help than they can provide. “If you don’t see yourself as providing care,” says Norah Keating, professor of human ecology at the University of Alberta and past president of the Canadian Association on Gerontology, “it is very difficult to reach out for assistance.”

Many family members and health-care professionals told Macleans that in the course of providing for a sick loved one, they become increasingly isolated from friends and other family members. “People just don’t understand it, they don’t know what to do,” said Joyce Parent, who cares for her 80year-old mother, Helen, at home in Berton, N.B. “My mother always asks where everyone is. It’s very hurtful when not only my mother’s friends but even my own friends don’t keep in touch.” Still, some caregivers are isolated by trying to cover up the illness and avoid what they feel is a negative social stigma. “Because Alzheimer’s manifests itself as a mental illness,” says Keating, “there is an attempt to protect the person who is ill from being exposed.”

While the Alzheimer’s crisis is imminent, few provinces have moved to meet it. Despite increased funding for home care, most patients receive only a few hours a week of care rather than the constant attention they often need. And even when home care is available, it is inconsistent and differs from province to province: some patients may get only a few hours a week; others, several hours a day.

In fact, Ontario is the only province with a dedicated plan to cope specifically with Alzheimer’s. It began to examine the problem in the late-1980s, and last fall, announced a five year, $68.4-million strategy to fund research and training for physicians and nurses. Ontario also plans to help home based caregivers by creating more adult day-care programs and by increasing the funding for visiting nurses, therapists, homemakers and services such as Meals on Wheels. “We recognized that families were coming into crisis and it was important to give those struck by Alzheimer’s a better system to work within,” said Helen Johns, Ontario’s minister responsible for seniors.

One of the biggest challenges of treating Alzheimer’s is that what works for one person may not suit another

Still, experts say they are unsure whether the promised amount and the content of the programs are enough to deal with the problem. One of the biggest challenges with Alzheimer’s is that it is so labour-intensive—what works for one sufferer may not suit another. An out-of-home day-care program might be ideal for a patient who is used to the company of others, but not for a patient who is accustomed to more privacy. “Each person’s life experience will have a lot to do with what programs they feel comfortable with,” says Dr. Carole Cohen, clinical director of community psychiatric services for the elderly at Sunnybrook and Women's College Health Sciences Center in Toronto.

As well, Cohen says, professionals must do a better job evaluating when a caregiver is in real crisis, or when the sufferer needs to be placed in a long-term-care facility. “Since dementias are progressive, it is hard to know how to judge if the supports are OK for now, and whether they will be OK in six months, a year,” said Cohen. Part of the process, she adds, is helping the caregivers come to terms with having to place the patient in an institution. That, she says, “is one of the most difficult decisions a loved one will ever make. Caregivers feel they have failed at their role.”

As Joan Pelham found, though, the caring doesn’t end when patients are admitted to nursing homes. And a recent tour of two Toronto publicly funded facilities proved there is a broad disparity in the quality of care available. In one, most of the patients were heavily sedated. They spent their day sitting in chairs or wandering aimlessly along narrow corridors. A few patients sat limply in a recreation room that was furnished with a plant, a couple of chairs, a TV set and some old magazines. The walls were whitewashed and barren of paintings, photographs or decorations. The home had another recreation room equipped with easels, paints, toys and games, but it was rarely used, one staff member admitted, because there is no one available to show patients how to use the materials. There are residents whose families and friends never visit, and there are no volunteers to organize recreational activities.

In contrast, the other home—which costs patients exactly the same—had hallways lined with comfortable antique chairs and tables, and walls adorned with black-and-white photographs, oil paintings and shelves filled with books, trinkets and toys—the comforts of a real home. Nurses are encouraged to hug their patients and talk to them. The home employs full-time recreational co-coordinators who organize arts and crafts, music and athletic programs daily for the 26 patients on the floor. And volunteers often bring pets and little children into the home to walk, play and talk with residents. The home, a charitable nonprofit facility, regularly sends staff to training seminars on how to care for dementia patients. The facility also follows Alzheimer society guidelines for care.

Experts say the disparities are most often the result of a lack of trained staff, or a failure to understand the unique needs of Alzheimer’s patients. Typically, the primary mandate of nurses and aides in nursing homes is to address physical needs, such as preparing medications, turning beds and helping bathe, clothe and feed patients. “The majority of health-care programs operate on the biomedical paradigm—you have a disease, you find the disease and then you fix it,” says Vancouver consultant Moyra Jones, the author of Gentlecare, which outlines a model for caring for Alzheimer’s disease. Alzheimer’s requires far more from already hardworking nursing staff, Jones says, adding: “A person with Alzheimer’s often doesn’t just need medical care. They need lifestyle care.”

To achieve that, everyone from doctors to janitors needs to be instructed on how to deal with the illness, says Joanne Michael, co-ordinator of the Saskatchewan Alzheimer Society’s Enhancing Care Program. “When staff understand that the changes in behaviour are part of the disease and not the fault of the individual,” she says, “they feel more comfortable in performing their responsibilities.”

For some caregivers, there is joy amid the problems. Andrew Ignatieff, whose brother Michael drew on the experiences of his mother’s struggles with Alzheimer’s in his 1993 novel, Scar Tissue, says he loved caring for his mother, Alison, despite her dementia. For five years until she died in September, 1992, he was her primary caregiver. He quit his job as director of the Canadian Save the Children program in Peru and returned to Toronto when it became clear his mother needed his attention. “Just thinking about Alzheimer’s strikes many people rigid with terror,” he says. “But for me, the memories are beautiful and unforgettable—gentle, quiet walks with her, watching as she caressed flowers and talked to pets.”

Even with the challenges—the restless nights, the battles waged with institutions and hospitals, placing his professional goals on hold—Ignatieff claims it was the most fulfilling job he has ever done. “I learned about her, and I learned about myself,” he said. Despite the disease, he says, he never lost his mother. “She was always there,” he says, “and I was able to find out more and more about her, and who she really was.” In the absence of a cure, that is the best that anyone could hope for. CD