TORONTO — When her daughter started showing signs of disturbing behaviour and was eventually diagnosed with schizoaffective disorder, Susan Inman was desperate for information about how to handle a teenager who was losing touch with reality.
Her usual method of finding her bearings in an unknown situation was to read as much as she could.
She went online and turned to books to learn about drug interactions, side-effects and other treatment possibilities. But personal accounts by other families going through such an ordeal were few and far between.
“I couldn’t find other people’s stories, and the stats about these illnesses made me know that definitely other people were out there experiencing these things, figuring out strategies to manage the many new complicated situations that were developing,” Inman, a teacher, said from her home in Vancouver.
“I thought, well, if I’m ever in the position, if I can ever get more on top of the situation it’s incumbent upon me, I better do this if I think it should be done.”
The result is After Her Brain Broke: Helping My Daughter Recover Her Sanity (Bridgeross Communications). The story begins when her daughter is 15, and a therapist that her daughter had been seeing tells a psychiatrist brought into the case that the family is “dysfunctional.” The therapist also tells the daughter that psychiatrists play mind games and “you have to be very careful not to get caught up in their stuff.”
Inman says her daughter’s situation was made “so much worse” by going to a therapist with a master’s in counselling psychology, when such courses don’t really offer training on serious mental illness.
“They misunderstand these illnesses, and they do them damage.”
“One of the things that’s so crucial is that for psychotic disorders, it’s really important to get somebody out of psychosis and into treatment as early as possible.”
Psychologist Fred Frese, 69, has had schizophrenia since the age of about 25, and he agrees on the need to get on top of the situation quickly.
“The earlier one starts receiving treatment, the more responsive the disorder tends to be,” said Frese, an associate professor at Northeastern Ohio Universities College of Medicine in Akron, Ohio. “The longer it goes without treatment, the more serious the damage becomes.”
Inman, 60, said she grew up in an era rife with non-science-based theories about psychotic disorders — family blaming and theories of “you know, the mothers must have been sending mixed messages to their children, and that made them develop schizophrenia.”
“It was astonishing for me when my child developed a mental illness. I was even more unprepared for that to happen,” she said.
Frese, who had a speaking engagement in Toronto recently, noted that the professions in earlier decades were very much stuck in this Freudian-based psycho-dynamic frame of mind.
“That family-blaming approach, while it has officially disappeared, there’s still a lot of professionals, particularly older ones who were trained that way, who, some of them can do quite a bit of damage. So one has to be somewhat selective.”
“It wasn’t too long ago that certain hospitals were using the term parent-dectomy . . . you needed to cut off the relationship with the parents in order for the person with schizophrenia to improve,” he said
“It’s a very unfortunate approach, but thank goodness that’s dying out.”
In fact, family support is often key in preventing people with mental illness from ending up with no support, or living on the streets.
Inman said people with psychotic disorders often don’t understand that they are sick, so they won’t go into treatment, or stay in treatment.
When her daughter turned 19, she signed a representation agreement giving her parents legal authority to be involved in all aspects of her financial life, education and health care.
“She understands that in a major psychotic relapse, she might have to go back to the hospital, and she would like us to be there supervising what’s going on, and making sure people don’t start giving her meds that we know aren’t going to work, or have bad impact,” said Inman, who used a pseudonym for her daughter in the book to protect her privacy.
“She would just like us there watching out for her and being involved.” But some families don’t have this, Inman said, and “all of a sudden they have this ill child and nobody will talk to them.”
It’s also important for families, in the absence of electronic records that can be shared among institutions, to keep track of what drugs the patient has been on and the responses and side-effects.
“Record-keeping in the system, or communication between hospitals and the mental health teams or private psychiatrists, it doesn’t happen seamlessly, if it happens at all,” Inman said.
In his younger days, Frese was in and out of 10 hospitals over a 10-year period. He would suffer delusions and be picked up in various places and taken to state hospitals.
He describes delusional processes as “disorienting and discomforting.” Getting married 33 years ago made a difference, he indicated.
“Since my wife and I have been married, I’ve not been hospitalized. But one advantage of that is having a partner in life who can tell you everything, maybe you ought to take another pill. She’s very helpful in letting me know,” he said.
“And also working in, as I do, in mental health. Co-workers are very understanding, and every now and then have told me it might be a good idea to take some time off.”
When he shares his story with families affected by schizophrenia, he finds they want information and, above all, hope.
“I think I’m seen as someone who has recovered well. That’s the big reason I do this is because they get to see somebody with schizophrenia who’s able to function.” Mary Alberti, chief executive officer of the Schizophrenia Society of Ontario, says the prevalence of schizophrenia is one in 100 — much higher than autism, for example. Onset is usually anywhere between age 15 and 30.
For young people living with schizophrenia, most of the services that are available direct them toward recovery, going back to school and employment.
“I think we have gaps in those areas,” Alberti said. “Public awareness, education, stigma, all of those three factors are very important . . . Because of the stigma related to schizophrenia, people are often fearful of disclosing that there’s something wrong.”
The society offers help in understanding the terminology and skills that may be needed to take care of someone with schizophrenia, she said.
Inman’s book also lists useful websites, recommended reading and a glossary of terms. The book ends with her daughter well enough to lead an active life — going to movies, concerts and out for dinner. But her daughter, now 25, had a relapse last fall, Inman said. “It’s unbelievable what she has had to survive and how strong her spirit is in the midst of a really bad hand that life has dealt her to live her life with these disorders.”