“We worry about it every day because we’re getting older and we don’t know what we’re going to do. We don’t have a plan… all I can say is, I pray to God every day that my sons will die before me.”
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Tove Olsen choked up making the comment and is more than aware how horrible it sounds to wish the death of her two sons. But the statement speaks largely to the amount of frustration and hopelessness that Olsen and her husband, Barry Johnson, both in their 70s, feel about the failing state of British Columbia’s mental health system.
The Chilliwack couple is in the unenviable position of having to be advocates for their two sons, Barry Jr. and Bo, who both have schizophrenia. Schizophrenia, according to the Canadian Mental Health Association, is a “complex biochemical brain disorder” that impacts a person’s ability to determine reality. Symptoms of schizophrenia can include delusions, hallucinations, social withdrawal and disturbed thinking.
Although the couple’s sons are a year apart in age, 48 and 47 respectively, their mental health journeys and their lives could not be more divergent.
The eldest son, Barry Jr., was 15 when he started showing symptoms of schizophrenia. While the mental illness presented in Barry Jr. earlier than usual, his status as a minor allowed his parents to oversee and manage his care.
“I didn’t really need a diagnosis,” Olsen says. “I kind of knew when he said he saw blood running off the walls, and spiders coming down to get him in the hospital, I knew. I recognized he was having a very serious psychosis.”
The family was living in Nova Scotia at the time and Barry Jr. entered what would prove to be the first of many psychiatric facilities and hospitals across Canada. Olsen and Johnson knew he would never be able to live on his own and would need constant supervision.
Then, at the age of 21, their younger son Bo was diagnosed with schizophrenia. But unlike Barry Jr., their younger son was over 18 years of age and his parents were unable to take control of his care. Since Bo has no awareness he’s mentally ill, he has refused medical and psychiatric treatment.
As a result of his choices, Bo cannot work, has no friends, is socially withdrawn and presents several negative symptoms of schizophrenia. Olsen’s biggest fear is he’ll harm himself.
“There were times I didn’t want to go down to the basement in Nova Scotia, when we lived there, because I was afraid my son had hanged himself in the rafters.”
It’s an isolating illness that takes its toll both on the inflicted and their caregivers.
“We never get a break from it,” Olsen says. “It’s with us every day, 24 hours a day. We watch it. We hear it.”
On a waiting list for an assisted living facility or group home for a decade, Bo has been living in his parents basement for 14 years. If it wasn’t for their care and concern, the couple feels Bo would be “another one of those countless homeless people under the bridge.
“We can’t do anything about it. He was over 19 when he got ill and we’re stuck. We can’t get him help.”
The couple can say assuredly that help is key to wellness because of the impact good care has had on their elder son. With the help of Barry Jr.’s social worker, he was placed in Mountain View Home in Yarrow, B.C., a small community 12 kilometres southwest of Chilliwack, where he could thrive and feel like a productive person. He’s been at that home for 21 years.
“[Barry Jr.] has a wonderful lifestyle,” Johnson says. “He’s a very outgoing, inclusive kind of person, who is very friendly. My other son is totally withdrawn because of how he’s had to live. He could be a lot better if he was in a group home or got a medicine adjustment.”
Operating since 1986, Mountain View houses 25 residents with severe and persistent mental illness. Besides providing 24-hour care, the directors and 32 staff create a home for the residents with homemade meals, birthday celebrations, outings to local events and they’re a big part of the community of Yarrow.
“That’s why we call it a home,” says Mountain View Home co-founder and director of care Patrick Newby.
“The residents are a fabric of the community of Yarrow. Our address is Abbotsford, but we live in the little community of Yarrow… and we’re a part of it. We support their local businesses and they’re so kind to the [residents]. They’re patient and so kind. It’s a really good fit.”
A good fit for the residents, their families, and the community that is now being closed.
WATCH: Two mental health facilities in Abbotsford are closing. John Hua explains where patients will go, and why families say not enough is being done.
On Aug. 12, Mountain View Home was notified their funding from Fraser Health Authority (FHA) will be terminated and, by Aug. 8, 2016, all residents will have to be relocated. The money used to fund Mountain View will instead be funneled into a new 50-bed mental health facility being built on Marshall Road in Abbotsford.
The closing of Mountain View will be the second mental health facility closed in the Fraser Valley. In June 2012, Sunrise, a 30-bed residential facility was closed and residents were relocated to existing mental health beds in the Fraser Valley, Newby says.
By moving 30 residents from a functioning facility to existing mental health beds, Newby says it “decreases the number of residential beds for individuals suffering with severe and persistent mental illness in Abbotsford.”
On paper, the shift sounds easy, even manageable except for the residents, families and caregivers doing the actual moving.
READ MORE: New allegations of improper mental health care at Abbotsford hospital
But, Barry Jr. thrives in the intimate environment and the news has rattled him as well as overwhelmed his parents.
Newby says since FHA made their announcement there’s been a significant spike in stress and anxiety in the residents; which are the last thing people suffering from schizophrenia need.
“Residents have concerns, which may be minor to us but are huge to them, like where can we ride our bikes? Who is going to do our income taxes?,” Newby says.
“The families are aging parents. They thought their son or daughter would be safe and be in a comfortable situation and familiar faces and caring staff. It’s not going to be the same.”
Olsen and Johnson are a snapshot of the aging parents Newby is referring to and they are well aware of the impact the change to Barry Jr.’s environment will cause for him and them.
“We could have maybe dealt with the one situation with Bo, but now they’re really screwing us up by moving Barry, who is doing so well at a place so wonderful,” a tearful Olsen says.
“Now with the closure and figuring out where it’s best to move him, it’s another thing that’s adding to our concerns.”
When asked what their biggest concern is with the status of both their sons, Olsen pauses and says: “That we’re going to die before them… and there’s nobody to fill in our shoes, to do anything for them.”