During this time of uncertainty, the staff at BC Schizophrenia Society (BCSS) is working hard to adapt programs and services so families can still get the help they need. It has been a significant challenge. That is why I am excited to share some great news. Two of our supporters, a loving mom and dad, have pledged to help BCSS do something new… something to build hope for families:
A Monthly Donor Matching Gift Challenge
Many people find monthly giving easier and more affordable because they can divide their annual gift into 12 equal donations.
On top of matching monthly donations, this mom and dad have also agreed to match all one-time donations to build hope for other families.
Become a monthly donor of $10 or more between now and Father’s Day, and your first year of donations will be doubled!
These parents are forever grateful for the help and compassion they received from our Regional Educators. Through our support groups and Strengthening Families Together course (SFT), they were able to gain insight into schizophrenia and coping strategies that they could not find anywhere else.
When they heard about the story of Simon and his mother, Judith, they could easily imagine themselves, like Judith, trying everything possible to help their son. And that was when they knew they had to do something to build hope:
"Simon lives with schizophrenia. And now all of his worst nightmares are coming true; the world is being destroyed by “The Invisible Enemy” he has known about for years. Simon is so scared of COVID-19 that he has barricaded himself in his small apartment, stuffing towels under his door. He will not come out, not even for his mom whom he loves and trusts. Judith speaks with him over the phone and through the door, trying to comfort him, encouraging him to open the door so he can enjoy the food she brought. Judith leaves a “care package” at his door, crying as she walks down the hall with last night’s dinner in hand…. another meal that Simon was too afraid to touch."
Far too many family members, like Judith, are calling BCSS, desperately looking for new ways to cope. They are counting on BCSS for help solving urgent and immediate problems caused by the pandemic. But they will also need new resources as they and their loved ones tackle many significant changes in the months and years to come.
With your support, families will continue to have “a reason to hope… the means to cope.” Your donation will build hope as it funds the highest priority needs, including supporting family members like Simon’s mother who are turning to BCSS each and every day.
Every donation makes a difference. And with this unprecedented matching gift challenge from our grateful couple, your donation doubles.
My family and I have been touched by schizophrenia through my dear brother, Dave. You can read our story at http://www.bcssfoundation.org/the-story-of-Dave-Sandy. Our heartbreaking journey inspired me to get involved in the BC Schizophrenia Society Foundation. And that is where I met Catherine.
Catherine describes her journey as one of learning, changing and accepting her “special” son, Paul. She talks about going through disbelief, denial, despair, blame, guilt, anger, and finally… acceptance. At the same time, Catherine’s story is filled with faith, hope and love. [Read Catherine's story.]
After nearly 20 years of desperately trying to figure out what was wrong with Paul and how to keep him alive and safe with schizophrenia, Catherine finally found “a reason to hope…the means to cope” through the British Columbia Schizophrenia Society (BCSS).
BCSS offers vital education and resources – free of charge – to anyone affected by severe mental illness like schizophrenia so that they are better able to advocate and care for their loved ones. And this support is only available because of the generosity of donors like you.
Families, like Catherine’s, need education and support now. There are still far too many families in crisis who are waiting for support groups and programs, like our Strengthening Families Together (SFT). Children and youth who are struggling because a loved one has mental illness are waiting to take our Kids or Teens in Control Program.
At the same time, we also need researchers to continue searching for earlier diagnostic tools and better treatments so that “special” family members, like Paul and Dave, do not suffer. Catherine attributes Paul’s ongoing success to a major breakthrough in treatment – long-acting injectable medication. I wish that treatment had been available for Dave.
Every gift matters.By giving to BCSS, you are helping families today and funding research that will build healthier, better tomorrows. Together, we can save lives.
Please consider making your gift today and I will personally match all donations, up to a total of $10,000. This means you can double your gift… $50 becomes $100; $100 becomes $200. And to inspire you even more, I am extending my matching gift commitment to January 31, 2020.
Some of you may have “special” sons, daughters, or other family or friends who live with a major mental illness like schizophrenia which takes them away from you and into the frightening world of psychosis.
My name is Catherine Larnon-Trout and I want to tell you about my “special” son. If it were not for BC Schizophrenia Society (BCSS), I do not know where I would be today. And I am not sure if my son would still be with me.
Years ago, when I timidly walked through the door of a local Schizophrenia Society office, I was clean out of faith and hope. My eldest son, Paul, was disrupting our whole family and terrifying my other two children. Nothing I did was working and I was very scared because no one had any answers.
Catherine and Paul in Beaver Scouts
That day, as I was stuffing fact sheets and brochures into my bag, a lovely lady asked me if I needed any help. I told her “No... I’m just looking.” But she knew! She brought me a cup of tea and sat me down. She invited me to tell her about my son and three hours later, I left with some faith in humanity and a smidgeon of hope.
(Catherine reveals what she found when she walked through those doors.)
I told her about my beautiful, kind, funny, blonde, blue-eyed, perfect little boy… so full of life and promise. Paul was a bright, well-behaved, organized, and helpful kid. He was a gifted athlete, a smart student, and a caring member of our church and community.
Then one day, when Paul was in Grade 11, there was a phone call from his school. Paul had just punched another student, one who was simply walking towards him in the school hallway. Paul broke the boy’s nose.
I never thought I would be the mom who said “not my kid” when there was trouble. But that was what I immediately said. It was impossible. I couldn’t believe it.
But it was true. Of course, the boy’s parents were very upset and wanted to charge Paul. But because Paul had never been in any trouble and was a model student, he avoided jail and did community service.
That was the moment… the first sign.
What I did not know then, was that Paul did not even see the other student. He saw a monster in front of him and did what he needed to do to protect himself.
Paul aged 17
Over the next few years, Paul continued to see and hear many more monsters, gods, devils, and other hallucinations. He tried to go to college; he tried to work. But Paul could not succeed because he was becoming increasingly paranoid.
I tried everything. I encouraged him to exercise, I fed him special food and vitamins, I yelled, I cried, and so much more… but nothing worked. Paul saw counsellors, psychiatrists, child and youth workers… but no one knew anything. No one gave us a diagnosis.
My fears grew because I never knew when Paul would go into psychosis. My younger kids became so afraid of Paul that I had to ask him to leave our home. To this day, that is one of the hardest things I have ever had to do – choose two of my children over my other child.
Paul continued to sink deeper into psychosis. He threw himself out of cars and even once off of a roof. My beautiful, blonde, blue-eyed boy was gone and I was left with a broken, smashed, and very sick son.
But the worst was yet to come. Paul paid a huge price for committing a minor crime, ending up with a jail sentence of two years less a day.
I was devastated. There is not enough strength in any mother’s reserve to stop her from being crushed as she watches her mentally ill child being taken to jail. I cannot even describe that pain.
My son was locked up, mostly in isolation, for two years. And because he did not have a diagnosis, he received no medication.
Paul came out of jail as a completely different person. It would be another two years before he was finally diagnosed with schizophrenia and received medication. For the next decade, while Paul lived in horrible, unsafe places, I kept trying to find ways to get him food, clothing, and other basic needs. But no matter what I did, my dear son was slowly withering away before my eyes.
When I was nearly at the end of my rope, desperate and in despair – not knowing what more I could do to save Paul – I saw an ad for a free, two-day course offered by BCSS.
That BCSS course saved my life.
That course and other BCSS education and resources taught me how to navigate and rebuild my own life. I was then better able to help and support Paul and my other children. And I learned how to share that essential information with other families.
Now... more than 10 years later…
“When life gives you lemons, wear them!”
Paul is in his late forties. He lives in his own apartment and has a part-time job. Paul understands what he needs to do to stay on an even keel. He loves designing clothes – Paul is an expert at making hats out of anything. He watches sports and knows every move made by every team in any sport.
He visits us regularly and particularly likes holidays and big family events. Paul enjoys his nieces and nephews and they love their Uncle Paul. When Paul laughs and jokes, I see my funny little boy and it makes me happy.
Sometimes I cry when I look at him because I am sad at his destroyed life, while other times I cry because I am happy and proud to have him with us, knowing he has gone to hell and back.
Now that I work at BCSS, I see firsthand how families, just like mine, are able to change their lives for the better with the support and education they find through our programs and services.
Recently, my 12-year-old granddaughter took part in one of our courses, Kids in Control. It helped her make sense of her uncle, and anyone else that has a severe mental illness, in a way that did not leave her feeling afraid, that it's her fault, or that she needs to fix it.
(Catherine tells us more about Kids in Control and how it helped her granddaughter.)
I hope you understand how much education is needed and that it can change the outcome of a family immensely as it did mine. And the programs and services that offer this life-saving information simply cannot exist without the support of generous donors, like you. But there are still far too many families who are in crisis, desperate for our help.
Catherine's Boys, Paul's brother and Paul
And then there is research. Research helped bring a miracle into our lives. A key to Paul’s continued wellbeing is long-acting injectable medication and his willingness to go every two weeks for his injection of antipsychotic medication. We no longer fight about pills! I am so very grateful for this, as is Paul. He remembers the wild mood swings, the hospitalisations, the restraints, and the long recoveries. And now all that trauma is gone because of a treatment that came from research.
Your generosity can make all the difference for a family like ours. Please consider giving what you can, knowing that your donation truly changes and even saves lives.
My family and I have been touched by schizophrenia through my dear brother, Dave. [You can read our story here.] Our heartbreaking journey inspired me to get involved in the B.C. Schizophrenia Society Foundation. Like Claudia, the mother who shared her story of her beloved son, Kent, I had to do something to fight the destruction of schizophrenia on the ones we love. [Read Claudia and Kent's Story.]
Like many of us, Claudia tried to find information about anti-psychotic medications and follow-up care so she could help her son get the best treatment possible and help him stay on his medications. British Columbia Schizophrenia Society (BCSS) provides vital education and resources to anyone affected by schizophrenia free of charge, so that they are better able to advocate and care for their loved ones.
Families need education and support now. Yet at the same time, we need researchers to find tools for earlier diagnosis and better treatments.
Every gift matters. By giving to BCSS, you are helping families today and funding research that will build a healthier, better future for all.
Together, we can save lives. I will personally match all donations, up to a total of $10,000. This means you can double your gift… $50 becomes $100; $100 becomes $200. And to inspire you even more, I am extending my matching gift commitment to January 31.
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 in Grade 1
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.
Kent in junior high
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.
My family and I (From left to right: Troy, Cindy, Wade, myself and Kent)
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 B.C. 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.
A family lineup during one of our annual family trips to the lake. Kent is fourth from the left.
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.]
My name is Chris Sandy and I recently joined
the Board of the British Columbia Schizophrenia Society Foundation (BCSSF) because
it does something that no other government agency or organization
does.It gives people “a reason to hope…the means to cope.”
We all know someone whose life has been affected by mental illness. One in 100 British
Columbians are diagnosed with schizophrenia, but so many more live with it… their
parents, brothers, sisters and other family members... all struggling to
understand, support and be there for their loved ones.
BCSSF programs
and research save and transform lives and this is only possible because of the
generosity of donors like us. AndI make my donations in memory of my little brother, Dave Sandy.
Dave was a happy kid, upbeat,
sincere, and well-liked by everyone at our school in Peterborough, Ontario. He was happiest when playing sports, and I was
always impressed with my little brother’s athletic ability. We would play touch football together and he
would have a huge smile on his face. Dave
could motivate our whole team to get a touchdown, time after time.
When Dave was
in his late teens, our family started to notice a change in his behaviour. He became distant and paranoid. He would rarely leave the house and sometimes
he’d say and do strange things that didn’t make sense. It was a confusing and difficult time for all
of us; there was a lot of tension and guilt. We kept wondering which one of us caused Dave
to suddenly behave this way.
Now
we know nobody was to blame; Dave was in early psychosis.
Years later, Dave
was finally diagnosed with schizophrenia.As you likely know, what happened after that wasn’t pretty. There were many sleepless nights. Dave
suffered from the side effects from either too much or not enough antipsychotic
medication.
I most remember
our first trip to the hospital to admit Dave.My dad, brother and I were walking with Dave from the Emergency Room to
the Psychiatric Ward.From a thousand
games of touch football with my little brother, I knew when he was getting
ready to run.Sure enough, as soon as we
were outside, Dave took off. As I was
running after him, all I really wanted
to do was run with him – to run as fast and far away as we could to get away
from schizophrenia.
Whenever Dave
was home from the hospital, my mother took care of him.Mom was an extraordinary and patient
caregiver and without her, Dave would have been institutionalized.There were no programs that we knew of in those
in those days to assist families. Mom
learned as much as she could, but there was no one she could turn to for
knowledge and support.
Over the
years, Dave would improve for short periods of time, only to slide back into
psychosis again.This cycle was very
hard on Dave, on my mom, and on all of us.We always kept hoping that there would be a new treatment or medication,
anything that would give Dave a chance to live his life. When he was 46, Dave suddenly became very depressed and within a week, after struggling with schizophrenia for nearly 30 years, Dave took his life. Dave’s passing has left a huge, gaping hole in our family that can never be filled.
It’s been
six, long years since Dave has died, after decades of battling with
schizophrenia – I wish he was here today.I wish I could spend more time with him.He was a great guy.
Today, I have
a teenage son and sometimes when I look at him, I can’t help but see my 17 year
old brother.My wife points out that,
without realizing it, I sometimes call my son ‘Dave’– a young man with his
whole life ahead of him and the potential to do great things. I’m often filled with fear that my son’s bright
future will be taken away and I will lose yet another loved one to
schizophrenia.
This is why I
am doing all I can to make sure that other people do not lose their children, brothers,
sisters or other family members to this devastating disease.I must protect my son, and even my
grandchildren, from the torment that Dave endured. By volunteering and donating to B.C.
Schizophrenia Society Foundation, I know that I am saving lives.
Families and
their ill loved ones are waiting far too long for programs and services they
desperately need.And we know that families
in crisis do not have time to wait.At
the same time, researchers are seeking to improve early diagnosis, investigate
impacts on the brain and find better treatments.
Perhaps, if
there had been an organization like B.C. Schizophrenia Society Foundation in
Peterborough, Ontario when Dave and I were growing up, we might still be playing
football today…and doing so with our sons.
