Ben Robinson spent long months during his hospital stays pacing the halls alone, hoping someone would visit.
Hardly anyone did, except for his mother, even though he phoned friends specifically to ask for company. The people who eventually braved the locked ward at the Clarke Institute never stayed long. “Where are the white padded rooms?” they joked.
“It was a bit of freak show kind of thing,” says Mr. Robinson, a 24-year-old part-time student in Toronto who has been diagnosed with schizo-affective disorder – a condition defined by symptoms of both a mood disorder, such as depression, and schizophrenia. “Like, ‘Whoo, let's go see my friend in the mental hospital.' ”
Even so, those visits made all the difference, he remembers – a few moments to feel “semi-normal,” to talk to someone from the outside and forget that he wasn't free to leave. The nurses, he says, were too busy to spend much time on chit-chat; the patients didn't mix much except to watch TV in silence. Other than a daily 30-minute appointment with his psychiatrist and taking a few workshops, he spent most of his time drinking tea and walking. “It's incredibly lonely and boring in the hospital,” he says. “I needed people to be there as much as possible.”
Mr. Robinson was lucky to get any visitors: Studies suggest that as many as 40 per cent of psychiatric patients never see a family member or friend at their bedside. According to a recent survey conducted at Toronto's Centre for Addiction and Mental Health, one-third of hospitalized patients in the mood and anxiety program received no family visits – and 20 per cent were visited only once or twice. Friends were even less in evidence: More than 70 per cent of the people surveyed said they received no more than two visits, and the majority didn't see a single friend.
There's a reason why psychiatric hospitals don't usually have gift shops: Nobody buys gifts for their patients. “You go into any ward in any hospital, and you will see cards, a balloon or two, flowers, teddy bears,” says Karen Liberman, executive director of the Mood Disorders Association of Ontario. “The psych ward is virtually the only place where you see nothing and nobody.”
In fact, this Christmas, to address the lack of gift-giving and visits at CAMH, which includes the Clarke Institute, a new fundraiser will use donations to buy items like pyjamas and slippers for patients.
Mental illness is an isolating and misunderstood diagnosis, and the padded-room, wild-eyed-patient stereotype of psychiatric facilities hasn't helped make people comfortable about visiting. Patients say people are reluctant to pass on get-well-soon sentiments when the health problem is a mental illness. Within families, the diagnosis can be complicated by guilt and blame.
But research shows that these issues have a significant impact on how quickly, and how well, people recover. In an Australian survey of patients and their family members, 75 per cent said they – or the person receiving care – were lonely often or all the time.
When families aren't heavily involved in inpatient care, studies have found that hospital stays are longer and readmission more likely. And relatives are usually the primary caregivers – if they don't visit or stay current on the patient's progress, they often find themselves unprepared to deal with their loved one when he or she is discharged.
“If you have a broken leg nobody stays away from the hospital. They ask about you. They empathize,” says Pam Lahey, 43, an analyst at the Canadian Mental Health Association of Ontario who has been hospitalized six times for severe anxiety.
She admits that at first she lied about her absences to cover at work, thereby reducing the number of people who might have come to see her. But visits from family were usually tense: During an early stay in hospital, while living in Newfoundland, she remembers her mother filling up a 15-minute visit with complaints that her illness had spiked her father's blood pressure.
“Family and friends can shame you,” she says. “ ‘Why are you here? Couldn't you have dealt with it yourself? Was it really that bad?' They certainly don't bring chocolates and flowers. There's a feeling that mental illness is something that you've brought on yourself.”
And while she accepts that people wonder what to say, or that they may believe they are protecting a person's privacy by not visiting, Ms. Lahey recalls how hurt she felt when even her closest friends didn't come. Typically, patients say, they can count only on visits from other people who have experienced a mental illness.
But families have their own complicated motivations. By the time their loved one becomes sick enough to be committed, they may be exhausted. Sometimes, the patient has sworn them to secrecy, or told them not to visit.
“It's pretty daunting,” Joanne Purdon says of the first time she was buzzed in by staff and walked onto a locked ward alone while visiting her 23-year-old nephew, Joshua. She has been his only regular visitor since he was first hospitalized with schizophrenia at the Clarke in 2003, the beginning of a bout of hospital stays.
Most evenings, she was the sole family member on the ward. She had to get used to the odd behaviour of other patients, the fact that she and Joshua couldn't have privacy, even how the nurses filled out charts behind Plexiglas.
While hospitals and non-profit groups are developing more programs for families, Susan Allen, co-ordinator of the Family Council at CAMH, points out that a long history of walled-in institutions and closed-door psychiatry has deterred the involvement of relatives and friends.
Privacy laws prevent families from receiving medical information without the patient's permission, leaving them short on knowledge about treatment and recovery. If patients are angry with relatives or friends for committing them against their will, there is often little effort to mend the relationship, Ms. Allen says. “Families I talk to will often say it's an upward battle for them to remain involved. And they really want to.”
In Ms. Purdon's case, despite being a regular visitor, she was not informed when her nephew was discharged. On one occasion, she learned he'd left hospital only when she returned home from work to find him there. “I was really angry,” she says. “They dismissed me as a family member.”
At other times, visiting is just too hard for relatives, especially when the patient has been committed involuntarily. William Robinson, Ben's father, rarely visits his son any more – but not out of a lack of love. He spends long days watching out for Ben, tracking him when he disappears, taking him to the hospital when needed – a mentally draining responsibility.
His grief for his son is complicated by the fact that he also battles depression. Seeing his son in a state of psychosis “just ripped my heart out,” says Mr. Robinson, who incurred Ben's wrath by signing an order forcing him to take medication. “If they are angry with you as well, that makes it even more difficult.” Even though he knows his wife goes nearly every day, he feels guilty staying away. “Ben's been more willing to forgive me,” he says, “than I have been willing to forgive myself.”
Sometimes simply talking about the issue can move families past the reluctance to visit. This week, after Ben was admitted to CAMH while starting a new medication, his father showed up to sit with him. “I really liked him being there,” Ben says. “It made it a lot more bearable to get through the day.