When her five-year-old daughter was diagnosed with bipolar disorder in 2002, Sarah Cannon was appalled at the lack of services available. So she spoke out – and paid a price.
The evening she was featured in her local newspaper, a parent called to “disinvite” Emily from a birthday party. Before long, she was being ostracized at her St. Catharines, Ont., school and labelled a problem child. At home, things were even more difficult as her father also was struggling with mental illness. (He died by suicide the following year.)
Then, “the whispers began,” Ms. Cannon says, “about how we were bad parents ... the ‘crazy family,’ that kind of stuff.”
The collateral damage included her younger daughter, Amy, who was subjected to taunting and teasing, just like her sister. “This isn't how I envisioned family life,” Ms. Cannon recalls.
She is not alone. One in every five Canadians will suffer from a mental illness at some point in their lives. Most will recover fully, but a minority will, like Emily, suffer severe, lifelong psychiatric illness. In her case, it can include depression, mania, wild mood swings and difficulty in carrying out the basic tasks of daily living.
Few families are even remotely prepared for the physical and psychological demands they face, whether it’s an autistic toddler, schizophrenic teen or a grandparent lost to dementia. The ties that bind can undergo severe stress, with routines disrupted, career paths altered, finances decimated and relationships taken to the breaking point.
Many families don't emerge intact. As Ms. Cannon puts it: “Mental health has left us dealing with things we couldn't have possibly imagined. ... It has touched every aspect of our lives.”
When illness strikes at a young age, parents shoulder the biggest burden. Stigma is a major problem, but far from the only one.
Ottawa resident Vera Klein, whose son, David, was diagnosed at 10 with depression and severe anxiety disorder, says that having a child with a mental illness is very different from having one with a physical illness. “The supports are there for physical illnesses. They’re not there for mental illness.”
Ms. Klein was lucky to have friends and family who remained loyal and supportive even after David's illness became public knowledge, as well as an employer who allowed her flexible hours, and to work from home if necessary.
Still, she says, the demands of caring for a child with a severe illness can be overwhelming, isolating and expensive.
David, for example, dropped out of school because of his severe anxiety and panic attacks, and lay around the house all day in a foul mood, while his parents desperately tried to find treatment that would work – counselling, special education, medication, electroconvulsive therapy and admission to hospital. Finally, an intensive wilderness course run by psychologists provided a breakthrough.
Ms. Klein says she knows people who delayed seeking help for children because they feel ashamed and fearful of how they may be perceived and treated – evidence, she feels, of the need to band together, to share information and to offer mutual support.
“As a parent, you get blamed for the child's challenging behaviours,” she says. “It can take a long time to get a diagnosis. So, when you realize there are other families going through the same thing, that you're not alone, it's incredible and empowering.”
In professional terms, Ms. Cannon was less fortunate. She worked at a hospital, but daycares refused to accept her daughter, saying her needs were too great, so she often had to call in sick and care for Emily herself.
Eventually, she took “a job where I could work at home. The pay was a lot less, but it did allow me to take care of her as well as get the education I needed to manage her at home” – in the hope Emily won't require institutional care later in life.
The constant demands take a toll, Ms. Cannon says. “It gets to you. You start to doubt yourself, to think maybe it is your fault.”
The collateral damage extended to her younger daughter, Amy, who has grown up feeling like a second banana because the family's life seemed to revolve around Emily's care and treatment. As a result, Ms. Cannon explains, “there is resentment of sorts,” but at the same time, Amy is fiercely defensive of her sister.
Ms. Klein says the illness that affected her son also reverberated across the family, with David's two older siblings coping quite differently. His brother took refuge in humour, while David's sister was tender with him, no matter how difficult he was.
They never resented David, but were at times angry and frustrated with their parents. “They wanted us to ‘fix it,' ” Ms. Klein says. “That was our job.”
Still, instead of tearing the family apart, the illness brought everyone together. “Now that the kids are all adults,” she adds, “thankfully they are very close to, and supportive of, one another.”
But less-resilient families conceal what they are going through, Ms. Cannon says, and “silence, of course, just perpetuates the stigma and leads to isolation.”
Vowing to avoid that trap, she turned to other parents for support, and is now executive director of an advocacy group, Parents for Children's Mental Health.
Emily, now 15 and in high school, is doing better – as is Ms. Klein's son. His illness kept him out of high school, but David is about to graduate from Carleton University with a psychology degree. And his mother, like Sarah Cannon, remains active with a peer-support group, Parents Lifeline of Eastern Ontario.
Parents, especially those still reeling from the news their child has a mental illness, must realize that treatment can make a difference, Ms. Klein says. “Everybody needs to know there is hope.”
‘YOU STILL LOVE THE PERSON BUT ... YOU HAVE TO PUT BARRIERS UP’
If Phil Tétrault wants to see his daughter or his ex-wife, he has to call and arrange a meeting. He doesn't know where they live, and hasn't for decades. “It’s a very clear boundary,” daughter Amanda explains. “When Phil is sick, he’s so lost in the illness that he can’t behave rationally.”
Mr. Tétrault was diagnosed with schizophrenia in 1975. Since then, he has lived mostly on the streets of Montreal, with stints in prison, psychiatric hospitals and rooming houses. He has a severe form of the disease that doesn’t respond well to treatment, especially when he tries to treat it himself, with alcohol.
As a result, Amanda's childhood was difficult. Her father would show up occasionally, often in a psychotic state, and trash the house or otherwise be impossible to live with.
When she was 12, her mother decided to move, with no forwarding address. It sounds cruel, but was necessary, she says. “You still love the person ... but schizophrenia is an awful disease. You have to put barriers up.”
Many families find it too hard to maintain contact with their severely mentally ill loved ones, but Ms. Tétrault says that “it’s not all or nothing with Phil. We’ve found a middle ground.”
Jane Duval, executive director of the B.C. Schizophrenia Society, says family members will bend over backward to stay in touch, but rules are often required.
Her son, Chris, was diagnosed with schizophrenia at 17, and first admitted to hospital at 19. “He had some violent incidents ... he broke down the door and threatened me,” Ms. Duval says, but only when off his medication.
To her, violence is “a treatment issue ... a symptom of inadequate care.” So, “I made it clear to my son that, if he didn't take his meds, he couldn't live with us, he couldn't set foot in the house.”
When he broke this rule, there were consequences. “You can't imagine how hard it is for a mother to turn her son away at the door, to call 911. You follow the ambulance to the hospital and you're crying all the way.”
Ms. Duval likens her approach to what she would do if a family member had a heart attack. “He was sick. He needed treatment.”
Chris Duval tried, and failed, many times to live on his own, and staying home was difficult for a grown man. So, for nine years, he has lived in supportive housing, stable but still very sick and requiring a lot of help.
“This arrangement works for Chris. He needs supports to live his life with dignity,” his mother says. “It has also given us our family life back. We can have a relationship now.”
(See Amanda Tétrault's photos of her father at www.amandatetrault.com)
14 PRINCIPLES FOR FAMILY MEMBERS ON HOW TO COPE
1 Realize that mental illness is not rare.
2 Learn as much as possible, as soon as possible.
3 Don't blame yourself – it can destroy your chances of coping forever.
4 Seek professional helpers who are effective.
5 Contact a self-help group for families.
6 Accept that mental illness is complex. Our natural instincts can be an unreliable guide. Relatives need training.
7 Get to know the origins of pressures to which family members are subject.
8 Pay special attention to the needs of other members of the family.
9 Remember that unlimited, unconditional self-sacrifice on behalf of someone with a mental illness is fatal to effective caring and coping.
10 Be aware that spending massive amounts of time with the person who has a mental illness can make matters worse.
11 Maintain friendships, activities and hobbies, particularly those that will take you outside the home.
12 Set your sights on appropriate independence for your relative and yourself.
13 Don't be surprised to find that the ability to change and look at things differently distinguishes relatives who can cope from those who can't.
14 Take very good care of yourself.
Source: British Columbia Schizophrenia Society
André Picard is The Globe and Mail's public health reporter.