IMPROVED TREATMENTS EASE A CRL DISEASE SCHIZOPHRENIA HIDDEN TORMENT
LIFE AND SCIENCE
It’s quite horrendous. First of all, you’ve got somebody that you love, a child that you’ve raised. And then suddenly, the child becomes a crazy person.
June Beeby speaks with disarming candor—her way of dealing with the horror that befell her family. It began in 1979, when Beeby’s 17-year-old son, Matthew, started to hallucinate. Diagnosed as schizophrenic, the boy stayed at home in Toronto as his condition worsened. In his madness, Matthew believed that God wanted his mother and his sister Susan, to die. Frightened, Beeby tried to have Matthew committed so that he could be treated. But, she discovered that this was virtually impossible without Matthew’s consent—which he would not give. Then on a dark, cold day in February, 1981, Beeby arrived home to discover her son dead in a pool of blood. “He had taken two ordinary dinner knives,” says Beeby, “and plunged them into his eyes until they pierced his brain.”
The horror of Beeby’s tragedy may be hard to fathom, but the affliction behind it is all too common. With different details and different— sometimes happier—outcomes, the madness is present in the lives of the estimated 270,000 Canadians who suffer from schizophrenia and in the lives of their families. For years, the prognosis for most schizophrenics has been hopeless. Many still languish on the margins of society, hidden in mental hospitals and lodged in prisons. They are the withdrawn and unemployable adults still living with aging parents, and they are the ragged, suffering souls who canyon conversations with invisible partners, or rant incoherently in the streets. “I live in a totally different world, a different reality,” says Gus Boudens, a 30-year-old schizophrenic in Montreal who has been hospitalized frequently. “I’ve been through lots of different hells.”
Now, better drugs and new ways of treating
schizophrenia are enabling more of the disease’s victims to live in society instead of institutions, and even to hold down jobs. At the same time, pioneering Canadian scientists—whose findings have already paved the way for a greater understanding of schizophrenia—and researchers around the world are hunting for underlying causes of the disease. Improved drugs to combat psychosis—the loss of contact with reality that afflicts schizophrenics—are already coming on the market, and some researchers believe that within the L next few decades scientists will find a way to virtu1 ally cure the baffling disease (page 76).
0 On the other hand, budget reductions by debt1 ridden governments are creating new problems for § schizophrenics and other victims of serious mental ps illness. As hospitals reduce staff and close down g beds, families often are unable to find institutions I willing to take in schizophrenics who need medical ! help. Just as frustrating for many families are g provincial laws designed to protect patients’ rights, ! which make it difficult for families to have schizoid phrenics committed or treated against their will, o “The myth is that if people exhibit bizarre behavior,
men in white coats will come and take you away,” says Fay Herrick, a Calgarian whose 28-year-old son suffers from schizophrenia. “There aren’t any people who can do that If only there were.”
Despite educational efforts by the 5,000-member Schizophrenia Society of Canada and its provincial counterparts, the disease remains poorly understood. Many Canadians cling to the erroneous belief that schizophrenia involves a divided psyche or
multiple personalities. And many people assume that schizophrenics are prone to violence. The fact is that schizophrenics sometimes become violent, but most do not—they are far more likely to withdraw from society. And the stigma that clings to schizophrenia adds to the victims’ difficulties. “The stigma is always there,” says Sherri Matsumoto, a 32-year-old Winnipegger who is training to be a mental health worker. “I’m careful who I tell because, with some people, their attitude changes. They think I might come at them with a knife.”
Schizophrenia usually begins between the ages of 16 and 30, with men often being affected earlier than women. The first symptoms can include trouble concentrating or sleeping, and afflicted people may start avoiding their friends. In the next stage, many schizophrenics begin to speak incoherently and see or hear things that no one else does. As the disease takes hold, there are cycles of remission followed by frightening relapses marked by disordered thinking that causes many schizophrenics to leap illogically from one subject to another when they talk. They begin to experience hallucinations, paranoia and delusions—schizophrenics in their psychotic phases may become convinced that people are spying on them, or imagine that they have acquired godlike powers.
When they are in the grip of psychosis, they frequently behave erratically, and they can become violent or suicidal. Often, it is parents and other family members who have to deal with the recurring crises. In September, Mary Lou Schaefer, a retired Peterborough, Ont., day care supervisor, went searching for her 30-year-old son after he fled into the streets. Her son was convinced, says Schaefer, that “someone was walking up and down in front of his apartment with a gun. When he gets like that, he thinks he has to defend himself. So he can be a danger to other people.”
Often, schizophrenics are more of a danger to themselves. An estimated 15 to 20 per cent of them take their own lives—in despair of ever finding peace of mind, or because their “voices” tell them to. Another 15 per cent do not respond to medication, and have no choice but to live in their madness—either in an institution or on the outside. With the help of antipsychotic drugs, which can reduce or eliminate a sufferer’s hallucinations and delusions, about 70 per cent can live in society. And some—perhaps 15 to 20 per cent of those diagnosed—can do some form of work, as long as they stay on their medication and avoid stress, which can trigger psychotic episodes.
The effects of the disease can be ugly and farreaching. Because the illness is chronic, schizophrenics occupy an estimated one in every 12 hospital beds in Canada—more than for any other illness. And the Schizophrenia Society of Canada estimates that each year more than $4 billion is spent on treatment welfare costs, family benefits and community services connected with the illness. Seeking escape from their torment, schizophrenics often turn to alcohol or illegal drugs. And they often run afoul of the law because they believe they are not bound by society’s rules. As a result, some 1,200 of the 30,000 inmates of jails and prisons across the country are schizophrenic. And thousands more are among the population of homeless Canadians.
That is a bleak picture—but it is a vast improvement over the fate of most schizophrenics just
three decades ago. Antipsychotic drugs have helped to make the difference. One is risperidone, which was recently introduced in Canada and is, for some patients, blissfully free of the debilitating side-effects common to most antipsychotic drugs. “It’s not a miracle drug,” says Dr. Barry Jones, co-ordinator of schizophrenia research at Ontario’s Hamilton Psychiatric Hospital. “But for a very sizable percentage of patients, it really has made their life significantly better.” Clozapine, another drug that has proved a boon in the battle with schizophrenia, was originally developed more than 30 years ago, then pulled off the market when it was found to cause harmful blood chemistry imbalances. Doctors subsequently discovered that with careful monitoring, clozapine can be used safely—and can often help schizophrenics who do not respond to conventional antipsychotic drugs.
Even the most effective drugs, which work by adjusting chemical balances in the brain, may not entirely banish delusional thoughts. But they can help schizophrenics to be aware of what is happening when their thinking becomes disordered. “Medication may diminish the symptoms, but not completely,” says Dr. Ruth Dickson, a psychiatrist at Calgary General Hospital. “Part of what we do is to teach people how to deal with voices, or paranoia, so that they can say to themselves, The reason I hear a voice coming out of that radiator is because I have schizophrenia.’ ”
For many schizophrenics, the benefits of antipsychotic drugs come at the cost of debilitating side-effects, including stiff muscles, restlessness, a dry mouth and blurred vision. Marguerite Young, a Peterborough, Ont, elementary school teacher, says that the drugs cause “terrible” side-effects in her 34-year-old, schizophrenic son. “He says that his head buzzes, and because of his restlessness, he has to walk miles and miles every day,” says Young. As a result of such symptoms, schizophrenics often stop taking their medication—and suffer relapses.
When that happens, family members who try to help often find themselves struggling with provincial laws that protect patients’ rights and make it difficult to force treatment on anyone without the patient’s consent. That means that when a schizophrenic begins behaving in an irrational or threatening way, family members may not be able to call on a hospital or the police for help. In most provinces, their only recourse is to try to convince a justice of the peace that the schizophrenic is a danger to himself or others, or that he is unable to look after himself. If the justice agrees to order short-term committal, relatives can call on the police to take the patient to hospital. But unless the schizophrenic becomes violent or suicidal in hospital, he or she still cannot be medicated without personally consenting. “You could have someone who was hospitalized because he was about to kill himself,” says Beeby, who stepped down at the end of 1994 after serving 11 years as executive director of the Ontario Friends of Schizophrenics. “But if he made a statement in hospital that he didn’t want to be treated—and was considered legally capable of making that statement—then he can’t be treated.
It’s the most bizarre thing.”
But others, including some schizophrenics, argue that people labelled mentally ill inhabit a reality that is as valid as that of so-called normal society. “Normal people don’t have a clue as to what lies out there in other realms of the mind,” says Montreal’s Boudens. “People see me and they think I’m suffering, but I’m loving every minute of it.” While most schizophrenics certainly do not relish be-
It was like everything was a dream’
At 48, Michael Eldridge stands five feet, eight inches tall and weighs 220 muscular pounds. A native of Falmouth, N.S., where he still lives, Eldridge spends a lot of his time lifting weights—he holds the current Canadian dead-lift record— and coaching others in the sport. Although he suffers from schizophrenia, Eldridge says his illness is no longer a major problem, thanks to antipsychotic drugs. But there was a time when the imaginary voices that he heard imperilled his life and frightened those around him. “When I was on my motorcycle,” he recalls, “the voices would tell me to shut my eyes and see how long I could keep them shut before I was killed. Or when I was washing dishes, the voices would tell me to stare at people while I was holding a knife.”
Eldridge recalls experiencing the symptoms of schizophrenia, including imaginary voices, before he was 16. In spite of that, he managed to finish high school but dropped out during his first year at Acadia University in Wolfville, where he was studying science. “I was too sick to be there,” says Eldridge. “I was aware all the time of a sense of unreality. It was like everything was
a dream.” After leaving Acadia, Eldridge fell into an aimless existence, playing chess compulsively, working at short-term jobs and getting involved with street drugs— LSD, amphetamines and marijuana. Then, in 1973, after taking LSD, Eldridge was arrested as he tried to hitchhike in the nude on a highway outside Halifax. He was subsequently committed to the Nova Scotia Hospital in Dartmouth, where doctors diagnosed him as schizophrenic and put him on antipsychotic medication for the first time. It proved to be a turning point. “It’s hard to go for help when you’re mentally ill,” says Eldridge, “because it means you’ve failed. It’s easier to say, ‘It’s just a problem I have. There’s nothing wrong with me.’ ”
Today, Eldridge lives on a disability pension in the house in Falmouth that belonged to his parents, who are both dead. “My doctors agree that schizophrenia is not a big problem for me now,” he says. “I don’t hear the voices any more. My biggest problem is that I was sick for more than 30 years and it left a big dent in my life.”
ing mentally ill, neither do they enjoy the severe side-effects that some experience with antipsychotic drugs; as a result, some advocates for the mentally ill argue that schizophrenics should be entitled to choose to remain psychotic. “Sometimes people decide they just can’t take it any longer,” says Catherine Medernach, a Manitoba mental health services consultant. “It’s tough on family members, who are concerned about their own comfort level. But the people they are worrying about are adults, and they’re entitled to make their own decisions.”
Others, however, concede that under some circumstances schizophrenics can benefit from having medication forced upon them. Charles Nabors, a 41-year-old Calgarian, was diagnosed as schizophrenic in 1986. After he stopped taking his drugs, he was committed to a mental hospital and given medication against his will. “It is an infringement of civil liberties,” says Nabors, “but in my case, it was beneficial to be locked up and put on medication. You can’t tell when you’re getting sick. It’s a disease of the brain and it’s very subtle.”
The debate over patients’ rights reflects the enormous change in attitudes towards mental illness. As recently as the 1950s, a young schizophrenic in the throes of his first psychotic episode would probably have been committed to a provincial mental hospital, sedated and placed in a locked ward. There, the patient might have been subjected to such primitive forms of treatment as being wrapped in wet sheets and injected with insulin—a practice that sometimes had a calming effect. In those days, schizophrenics might well remain in provincial hospitals for the rest of their lives. By the 1970s, a revolution had begun to transform the treatment of the seriously mentally ill in North America.
Armed with the knowledge that most schizophrenics— with the help of antipsychotic drugs and community services geared to their needs—could live better lives outside of institutions, Canada’s huge provincial mental hospitals released thousands of patients and closed down more than 32,500 beds between 1960 and 1976.
Now, thousands of mentally ill patients, many of them elderly, remain in provincial hospitals and other institutions on a long-term basis. But a large proportion of the schizophrenics living in apartments and group homes across the country still require readmission
to hospital—most frequently when they stop taking their drugs and suffer a relapse. All too often, patients who refuse treatment, or are turned away from overcrowded hospitals, wind up wandering the streets—and sometimes living on them.
Many advocates for the mentally ill say that a new crisis is developing as cash-strapped provincial governments slash health care spending, forcing hospitals to reduce staff and close beds. According to Statistics Canada, 2,580 psychiatric beds in general hospitals and mental institutions were axed between 1988 and 1992, the latest year for which national figures are available, leaving a total of 18,197 psychiatric beds in service. And patients’ advocates fear even tougher cutbacks to come. In Ontario, where more than 550 psychiatric beds have been scrapped since 1989, Health Minister Ruth Grier indicated last summer that the province would reduce funding for its 10 mental hospitals by an additional $56 million—a cutback that would have closed an estimated 630 hospital beds. But in October, Grier backed down in the face of protests by organizations and unions that work with the mentally ill. According to the relatives of schizophrenics, the budget squeeze is making it harder for the mentally ill to get help when they need it. As a result of bed short-
ages in hospitals, says Calgary’s Herrick, “they’re trying to whip people into hospital, give them medication and then whip them out again—and it just doesn’t work.”
Critics also fear that as deficit-burdened provincial governments look for ways to economize, community services—including subsidized housing, crisis response centres and rehabilitation programs—
may also suffer. Such services vary dramatically in quality and availability in different parts of the country. Most experts agree that the provincially funded Greater Vancouver Mental Health Service agency is one of the best of its kind in North America. With an annual budget of about $30 million, the agency helps about 5,000 people with serious mental problems annually, providing housing, special programs for older patients and community response teams that can swing into action to deal with crisis situations involving the mentally ill.
By contrast, services in other Canadian cities are more fragmented, with scores of government-funded and private organizations offering a range of services. “In most of Canada,” says Steve Lurie, executive director for Metropolitan Toronto at the Canadian Mental Health Association, “you don’t have a mental health system. You have good programs in some communities, but it varies enormously depending on where you are.” Until recently, says Joanne Bathurst, executive director of the Schizophrenia Society of Nova Scotia, services in Halifax have provided some—but not enough—support for schizophrenics, including accommodation and rehabilitation programs. Now, says Bathurst, patients “are being discharged into the community because of hospital bed closures. So far, new money is not being put into community services. We’re waiting.”
Despite shrinking budgets, some Canadian hospitals and clinics offer comprehensive programs aimed at helping schizophrenics to come to terms with their illness. At Calgary General Hospital, a staff of about two dozen psychiatrists, nurses, social workers and therapists work with 230 patients who have been hospitalized after psychotic episodes. Once patients have resumed their medication, staff members prepare them for re-entry into the community with advice on how to cope with their illness and training in how to manage money, cook food and use community resources. Later, says Dickson, hospital staff often go out to “make sure that someone’s apartment gets cleaned—or whatever is necessary to help a person get along in the community.”
At Toronto’s Clarke Institute, doctors are running an innovative program aimed at finding out whether early intervention in schizophrenia can prevent the progressive deterioration that can set in with chronic mental illness. During the past
2V2 years, doctors have recruited about 75 schizophrenic patients who have just experienced their first episodes of psychosis. Once patients are stabilized on antipsychotic medication, staff members help them understand the nature of their illness and possible paths to recovery. In group therapy sessions, patients share their experiences with others. The principal objective of the program, says Dr. Robert Zipursky, the psychiatrist in charge, “is to try to understand what is
the long-term outcome of schizophrenia. The hope is that if you intervene early enough, people will be able to retain the highest level of functioning—in spite of their illness.”
Beeby’s son Matthew might have benefited from such a program. In a diary entry written two years before he took his own life, Matthew described an encounter with God. “He used his power and he controlled my brain for nine months,” the boy wrote. “God wanted me to feel that I would die, in order for individuals to live forever in heaven.” No one will ever know what Matthew meant by that, but it is a glimpse into the schizophrenic’s world. Beeby says that schizophrenia’s malign power extends to their relatives, who often try to hide the illness as an unmentionable family secret. But, says Beeby, “until we shine light on the disease, until we drag it out of the darkness and say this is schizophrenia, this is what it does, we’ll never conquer it.”
SHARON DOYLE DRIEDGER