Launch of Treatment Optimization of Psychosis Pilot in VCH
In June, BC Schizophrenia Society (BCSS) was invited to speak at the launch of the Treatment Optimization of Psychosis (TOP) Collaborative that is...
My name is Claudia Schalm. I live in Williams Lake, and want to share the story about my son, Kent. Kent was the oldest of my four children. We lived on a farm when the children were young and Kent was his father’s right-hand man. Kent was a responsible, hard worker. He could do anything from milking cows to running machinery, and everything in-between. You name it and Kent could do it.
Kent was a tough, resilient and athletic guy. On the ski hill, he amazed us, racing straight down the hill at high speeds – never wiping out – always with a big grin, jacket wide open and his favourite Russian hat with the ear covers, flapping straight back in the wind.
Kent spent several summers planting trees, and was always the top tree planter. He made enough money to travel throughout Australia for six months.
Kent dreamed of becoming a police officer and when he was 21, Kent went off to Douglas College to study Criminology. But by the end of his second year, Kent was experiencing such significant symptoms of serious mental illness that he was no longer able to cope on his own. Kent returned home to Williams Lake to live with me and his sister, Cindy.
We were concerned and confused by Kent’s increasingly erratic and bizarre behaviour. The most disturbing was when he would laugh and chat with people that only he could see and hear. Despite our pleas, Kent refused to see a doctor and declined rapidly, becoming more and more withdrawn and silent.
Eventually, Kent was diagnosed with schizophrenia. But Kent never accepted his diagnosis, even up to the day he died. “There is nothing wrong with me,” he would announce, “I don’t need medication.”
We didn’t know it then, but this lack of awareness is actually a symptom called anosognosia.
Anosognosia, which may affect up to 50% of those with schizophrenia, means “lack of insight.” It is thought to be caused by a brain defect in the frontal lobe. Anosognosia is the genuine inability to recognize that the problem exists. Kent wasn’t just being difficult or refusing to face the truth, he truly believed that he didn’t have an illness. He could not see any reason why he would need to take medication.
BCSS Educators could have helped us understand and cope with this symptom.
For the rest of his life, there would be times when Kent would stop taking his medications. And then, when things got bad (and after much begging and pleading), he would reluctantly start them again.
Over the years, Kent had many jobs, but they always ended in dismissal because he simply could not stay on his meds. When Kent was not working, he would “make the rounds” as he called it. His hang-outs included McDonalds, A&W, Tim Hortons, Gustafson Chrysler, Heartland Toyota and The Jamboree. Kent would greet everyone with a huge smile and visit, while bumming coffee and cigarettes. The staff at these businesses were kind and friendly to Kent, helping him feel like he had a place to go, somewhere where he was wanted and appreciated. And I can never thank them enough.
Kent loved people and had some really good friends. He was a kind and gentle soul with a big heart. Even though Kent accepted people as they were and judged no one, some people did not understand Kent, especially when he was not taking his medications.
Kent shared many years with Teena. And through Teena’s First Nations heritage and connections, Kent was embraced by a large community of friends and family. Their acceptance of him was complete and unconditional. Teena loved and cared for Kent, and we are deeply thankful that Kent and Teena found one another.
In December 2016, after 25 years of taking an older antipsychotic medication on and off, Kent was suddenly was unable to speak and had difficulty swallowing. This condition was directly related to the prolonged use of this mediation.
By January 2017, Kent was put on a newer atypical antipsychotic medication. But he received only two doses before developing blood clots. He went through three operations to remove the clots, but they just kept reappearing.
My loving, kind, and gentle son, Kent, died on Mach 4, 2017.
I know medication helped Kent, I am certainly not advising anyone to stop taking antipsychotic mediation. But we as families desperately need ongoing education about the disease and medications so we can support the health and well-being of our loved ones.
And this is where BCSS could have made such a tremendous difference in our lives. BCSS could have helped us understand Kent’s anosognosia. With the help of a BCSS Educator, we might have been able to find other ways… maybe better ways…to help Kent stay on his medication. Through BCSS, I could have learned about other medications and advocated for ongoing assessments, second opinions, and other options.
If only we had discovered BC Schizophrenia Society sooner.
Finally, in our time of grief, we found BCSS and BCSS is supporting us and connecting us with other families who have experienced similar losses.
Parents should never have to bury their children.
I feel the keen pain of Kent’s absence each and every day. And I cannot continue to sit by while schizophrenia devastates families, leaving far too many of us feeling helpless and in despair.
But there is something each of us can all do. Chris Sandy, who shared his story about his little brother Dave, has once again generously offered to match all donations to this campaign – dollar for dollar – up to a total of $10,000, until January 31, 2019.
Double your gift today!
Imagine your gift… and its impact… being doubled. Your donation of $50 will become $100; your donation of $100 will become $200!
Your generosity will help give more families the information and support they need when they need it. Your donations will also fund essential research, right here in B.C., with the hope that our grandchildren and great-grandchildren may not have to struggle with schizophrenia as we have.
P.S. Thanks to the generosity of Chris Sandy, donations received by December 31, 2018 will receive a 2018 tax receipt. Every gift counts. Please make your gift today and double your impact!
[Read the story of Chris Sandy’s brother, Dave.]
Chris Sandy, a BC Schizophrenia Society Foundation (BCSSF) volunteer Board Director, generously matched all donations made before January 31, 2019! But it's still not too late to make a donation today!GIVE TODAY!