My name is Michal Kaliszan, son of Adam and Jolanta Kaliszan. Shortly after birth, I was diagnosed with Spinal Muscular Atrophy, which causes progressive muscle weakness. Doctors predicted that I would die before the age of 16, but I’m still alive at age 39 thanks to the endless sacrifices made by my parents. My story is one of struggle and overcoming the odds, but it will soon come to a tragic end without your help to fund 24/7 home care.
Upon my diagnosis, my parents left everything behind and escaped communist-ruled Poland to immigrate to Canada so that I could have medical care and a better quality of life. They started with nothing, but thanks to their hard work and determination, I never wanted for a wheelchair-accessible home, a wheelchair-accessible vehicle, medical equipment, or a post-secondary education. They worked tirelessly to ensure I led a normal life despite my disability and they were always there 24/7 to help me with personal care and activities of daily living. I am incredibly proud of how my parents overcame obstacles, but cancer proved to be an obstacle that not even they could overcome.
My father passed away in 2002 from colon cancer and my mother has been my sole primary caregiver since then. She successfully battled breast cancer in 2007, all the while taking care of me. Sadly, in October 2020, she was diagnosed with lung cancer that metastasized to the brain. She fought on, while still taking care of me, but by August 2022, the cancer was visible in her lung, brain, pancreas, liver, and soft tissue, resulting in hospitalizations and a transition to palliative care. My parents have given me more than a son could ever ask for and now I need another solution for round-the-clock care if I wish to live out the remaining years of my life.
In my youth, it was so easy to take for granted the 24/7 care my parents provided, but now that I will soon be alone in this world, I truly understand how precious it was to me. It was a blessing that allowed me to lead a happy, fulfilled life instead of a miserable existence. It afforded me the simple luxuries that non-disabled people take for granted, such as being able to use the washroom whenever the need arises. It meant the difference between leading a dignified life versus sitting in a soiled diaper and rationing fluid intake all day long. It meant the difference between being able to perform a variety of activities during the day versus being bedridden or immobile all day long. It meant the difference between sleeping soundly at night knowing that help was close by for emergencies or unplanned needs versus worrying all night about “what ifs.”
My disability is at the point now where I need help for most things, but I’m still able to move around via my electric wheelchair, I can breathe on my own, I have control of my bladder and bowels, and I have enough function in the hands/wrists to use a computer keyboard/mouse. I’m still able to hold down a job and contribute to society, but my physical limitations make it impossible for me to stay alone safely for more than very brief periods of time. Even something simple like picking up a phone and calling for help is impossible for me. Life is not a series of events that can be compartmentalized into fixed, pre-scheduled shifts, which is why having real 24/7 support means so much to me - the quality of life improvement is simply immeasurable.
I have no family or friends that can take on the immense responsibility of being my permanent caregiver. I’m eligible for 41 hours per week of government-funded home care via Ontario’s Direct Funding (DF) program, but with province-wide Personal Support Worker (PSW) shortages and low hourly pay mandated by the program, it is a struggle to fill these hours. Even fully staffed, 41 hours per week is not enough for me to survive alone and the program will likely take away these hours if my fundraising campaign is successful. I’ve researched possible alternate solutions, but there is simply nothing out there that works, either due to long waitlists, insufficient quantity of care, or unacceptably low quality of care.
The government would like to put me into Long-Term Care (LTC), ignoring that I’m only 39 years old and will likely only get up to two hours of actual care per day. Given the state of decay and abuse in Ontario’s LTCs, letting myself be admitted is akin to a death sentence and would be a grave dishonour to the sacrifices my parents went through to build me a life in Canada. I refuse to go and will choose euthanasia over being institutionalized in LTC.
Even in her darkest hour, my dear mother keeps asking when she can leave the hospital to help me because she knows I will not survive alone. This breaks my heart and the only way I can help her find peace as she approaches the end of her life is to assure her that I have reliable, dignified, 24/7 care to live out my remaining years in our home. My mother sacrificed her entire life for me and I am determined not to let those sacrifices go to waste by dying of neglect in a government facility.
I’m asking for your generosity so that I can hire staff for 24/7 home care for one year. Even though I am gainfully employed, the costs are well beyond my means at a cost of almost $800.00 per day. Your donation will not only help alleviate the anguish of a dying mother and a grieving son, but will also ensure that a disabled person doesn’t fall through the cracks of a broken healthcare system. It will give immense peace of mind to my mother and me while we make the most of our remaining time together. It will also give me more time to find solutions for a brighter tomorrow.
I am deeply, deeply grateful for your kindness and I hope that life will afford me the opportunity, at least in some small measure, to pay it forward.
How the funds will be used:
- Approximately $268,863.00 will go to wages and employer payroll expenses
- Approximately $2,664.00 will go to bookkeeping and administrative expenses
- Approximately $13,573.00 will be used as a contingency to account for emergencies and other unforeseen changes affecting expenses throughout the year
Here are some other ways that you could help:
- Raise awareness of this campaign through your personal and professional networks
- Refer trustworthy, dependable people willing to work or volunteer as a PSW (no formal certification required)
- Share your expertise about how best to schedule home care shifts for 24/7 coverage
- Share your knowledge about how people in similar situations managed to find solutions