Our family’s hearts are heavy as I announce the death of my brother Joseph Francisco Leben, on May 10th, 2021, in the Oakville Trafalgar Memorial Hospital in Ontario, Canada, from complications due to the corona virus.
Joey was born in Buenos Aires, Argentina on January 12, 1957 and lived for 64 years. Joey was 10 months old when he arrived in Canada with my mom and dad on October 7th, 1957.
It was a different and a difficult time for new immigrants to Canada in the early sixties. When Joey was 6 years old, he was non-verbal and not progressing as expected. It was recommended to my parents, that Joey receive treatment for his developmental delays at the Huronia Regional Centre in Orillia, Ontario. My mother confided that she was very sad and filled with regret for not fully understanding that her son was being taken away from her in 1963. My mother thought she was doing what was best and, she expected that Joey would get better and return home. But after several years of being institutionalized, Joey’s condition deteriorated. He became wheelchair-bound and completely dependent on a caregiver for round-the-clock support for all his daily living needs.
Fortunately, just before he turned 50, in 2006, Joey was moved to a loving and nurturing home in Oakville run by the Christian Horizons Charitable Organization. Christian Horizons offered their support and attempted to involve Joey in the community through love and social participation allowing him to maximize his potential in a loving environment. It truly takes a remarkable type of person to be able to give so much love and support to people with developmental disabilities. The entire staff and residents at Halton1 pray for Joey and trust in God’s love to receive him. Although, they will be impacted by Joey’s death, I hope they will take comfort in knowing that Joey died peacefully and with no pain.
I hope that all of us can receive peace and comfort believing that Joey is reunited with our dad, Frank who passed away 12 years ago. I imagine Joey is healthy and is no longer suffering. I can imagine him smiling his innocent smile and reaching out his hand to my dad as they express their love to one another. My brother Joey was a sweet soul who was unable to be a part of a life as we experience it in the usual sense by contributing to society. However, Joey’s passive contribution is our family’s learned empathy and compassion for all those with developmental disabilities.
My brother Joey was 10 years older than me and being institutionalized at 6 years old, I never really knew him nor had a traditional sibling relationship with him as he was non-verbal. I felt ashamed as my colleagues that I’ve known for several years didn’t know that I had an older brother with severe disabilities. It’s not something I talk about very often. I often felt embarrassed – not by him, but by my lack of emotion and minimal involvement in my brother’s life.
I received a call in the early afternoon from Christian Horizons on Wednesday, May 5th that Joey had been infected with the corona virus. Since the home was not equipped to manage potential respiratory issues, he was taken to the hospital as a precaution. The virus progressed quickly as I received a call later that evening from the hospital that Joey was having difficulty breathing.
As a family, we had decided that we did not want Joey to suffer.
When my father had his stroke in 2009, I recall all of us having to make the same difficult decision. I didn’t want to let go and had requested that more neurological tests be conducted on my father. As a result, I prolonged his pain for my own selfish and emotional reasons. I have never forgotten the unnecessary trauma that he suffered.
Second-guessing, feeling guilty, and wondering if we made the right decision is what our family is currently experiencing. Ethical decisions of whether to take a bed in the ICU, a respirator, and hospital services and staff resources that other patients needed. Not to take extreme measures and put him on a ventilator were decisions that weighed very heavily on us.
Joey was fortunate to have an advocate in my sister-in-law, Debbie who was instrumental in finding Christian Horizons for Joey enabling him to live closer to my family home. Joey leaves behind, his loving mother, Maria; his sister Frances; his brother Steve and wife Debbie and nephew and niece Joey and Stephanie; his sister Cathy and nieces Natasha and Brianna and his sister Betty and husband Dan and niece and nephew Michelle and Nicholas.
Joey was not alone when he died and was made comfortable with pain meds in the most humane treatment possible. He passed away peacefully in his sleep. Our prayers and thoughts are with Joey and thankful that his suffering is over and that his last hours were pain-free and peaceful.
Those wishing to make a donation in honor of Joey, can be made through Christian Horizons directly, which would be greatly appreciated by the family. christianhorizons.org/give/
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Monday May 10th 2021
Nos plus sincères sympathies à la famille et aux amis de Joseph Leben Monday May 10th 2021..
Décès pour la Ville:Milton, Province: Ontario