"An enormous gift": Psychosis booklet emphasizes family care

When someone experiences a psychotic episode for the first time, one of the most valuable sources of support is their family. As author and CAMH Family Worker Sabrina Baker explains, the complexities and challenges they face can often lead to frustration, a sense of isolation, and even raise concerns about their own mental health.

A new CAMH-published book will help to inform and support families facing these situations, and it’s already garnering positive responses. Written by Sabrina, who works in the First Episode department, and Lisa Martens (formerly of CAMH), Promoting Recovery from First-Episode Psychosis was launched last week. The book is also available in electronic form - click here to download. (PDF)

A new CAMH-published information guide is "the best thing that could happen" for families, says family member Corrine Humphreys

Promoting Recovery from First-Episode is based on material that Sabrina work-shopped with families and professionals over several years, and was written primarily for families, although clinical staff will also find the information useful.

The book is divided into two sections and relates to CAMH’s increased emphasis on the Family-Centred Care Initiative, which strives to address the need within CAMH for support and services for families as well as individual clients.

The first section offers information and practical advice about how families can promote recovery for their relative with psychosis, while the second focuses on promoting recovery for the family, and helping families understand what they’re going through.

In preparation for the book’s launch, three families who participated in the book spoke recently about their involvement.

Families feeling isolated

“Going through the process we went through was quite an ordeal, and I don’t believe anyone should ever go through that process,” says Julia Knapp. “It was absolutely trying. You talk about one of your family members having mental health issues, and you end up with the whole family having mental health issues.”

Family members George and Julia Knapp

Julia and George Knapp described the difficulties they faced in trying to find information and support when dealing with their son’s psychosis and diagnosis of schizophrenia.

“You really started to feel that you were isolated. You started to feel that you were the problem, and not that there was a problem that you were facing. It was very difficult to find out where to go for information, and who had the information. That really started to take a toll,” Julia says.

In their son’s situation, there was a level of violence that combined with frustration at the medical system to increase the family’s stress, as Julia explained.

“For six months the police came every week to the house and arrested him. They would take him to the hospital in restraints. He would break the restraints because he was so powerful. They would tie him back down, and then he would bounce the bed across the floor screaming. He would get out of the restraints, and throw furniture at the nurses,” she says.

“I’m afraid for my life”

Because of what Julia calls “the 72-hour revolving door,” the hospital would release their son, who was 18 at the time.

“The hospital called me and said, ‘Your son is sick and we can’t do anything for him. You need to come and take him out of the hospital.’ I said, ‘What do you think I’m going to do with him? I’m afraid for my life.’ One time when they discharged him from one of the hospitals, I was driving and saw that he was walking in the middle of the highway with no clothes on because 72 hours had passed and they had discharged him,” she says.

Julia and George emphasized the importance of family-centred care in helping their son to recover, and also helping themselves stay healthy and together as a family.

“The client wouldn’t be able to recover as quickly or as effectively without having the support mechanisms in place for them to recover, and families need support mechanisms in place in order to be able to assist the client with the recovery,” George says.

“Mother’s love”

For Donna Abs, the situation was not as violent, but the stress was just as strongly felt. Her son’s psychosis occurred at the same time as several other difficult and traumatic events in her life.

“I don’t really know how I got through it because so much was happening at the time,” she says. “I think I kept my fingers crossed a lot. It sounds corny, but there’s the mother’s love thing. You do what you have to do.”

CAMH Family Worker Sabrina Baker and family member Donna Abs

Donna described a similar frustration at navigating the medical system, and acknowledged how having a book like Promoting Recovery would have helped early on.

“I didn’t know how the system worked here,” she says. “We knew that case managers existed. We were just told that there were none available, month after month. I do wonder how differently things would have progressed in the beginning if there had been that support because it’s created a different sort of dynamic over the long term. For people to get this book when they first get connected with the first episode clinic, it would be an enormous gift.”

“Illness as a silver lining”

“When P. was in the hospital we put everything on hold…today we’re able to look back and see his illness as a silver lining,” Corrine Humphreys is quoted in closing the book “We know that no matter how bad the situation may be at times, something positive will result and we will come out strong.”

Corrine, who recently joined CAMH as the volunteer coordinator for the client library at the Queen Street site, spoke about her brother Paul’s illness, and how it helped to strengthen her family. The Humphries family has also spoken on behalf of the CAMH Foundation.

“For people to get this book when they first get connected with the first episode clinic, it would be an enormous gift.” Donna Abs, whose son experienced first-episode psychosis

“I always try and look at the positive things in life,” she says. “I had gone years without speaking to my father, and a long time without seeing my brothers. My brother having this psychosis and later schizophrenia, it brought our family together. We had to rush to get everything together, decide who was going to do what. We had to say, let’s get together as a family. We have to do this for Paul.”

The book will be an invaluable resource to families in similar situations, and a key aspect that Corrine pointed out was its accessibility, both in terms of being non-academic, but also being small enough (fewer than 80 pages) to fit in a back pocket.

“It would have been amazingly helpful for us to have had this book because there really isn’t anything out there like it. I think it’s the best thing that could happen, and I’m thankful that Sabrina got it written with her busy schedule,” she says. “We were all asking for information. It’s all in one place now, all the material they had used in the family group that worked so well.”

 

 

 

 

 

 

 

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