‘I could have had more time if I had more help’ Woman with ALS chose assisted suicide after failure to get more home care from province
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This article was published 03/10/2022 (237 days ago), so information in it may no longer be current.
Sathya Kovac died Monday, but the life-threatening disease she fought for more than 15 years didn’t kill her.
The 44-year-old Winnipeg woman took her last breath at 10 a.m. — by choice, via the Medical Assistance in Dying program — because of her ongoing problems accessing adequate provincial home care.
People who knew her are angry; although the amyotrophic lateral sclerosis — a progressive nervous system disease — was, eventually, going to end her life, death was not imminent. Kovac made her carefully considered decision to die because the difficulties she encountered with home care made it unpalatable to continue living.
In an obituary she wrote to friends and family just days before her death, she said, “Ultimately, it was not a genetic disease which took me out, it was a system.”
“There are not enough supports and services promoting quality of life and independence for those who are not healthy and able-bodied… there is desperate need for change. That is the sickness that causes so much suffering. Vulnerable people need help to survive.
“I could have had more time if I had more help.”
Kovac decided to speak to the Free Press about her situation — and what she had decided to do about it — but did not want the story told until after her death.
“I felt like I had no choice but to end my life,” she said. “MAiD is a last resort, and instead of helping people, they have this… life doesn’t end with less physical ability — it ends with less support.”
Friend Janine LeGal said she will remember “her wit, her creative spirit, her spunk and her ability to be present.”
“I’m angry that this lovely, thoughtful, vibrant woman is no longer here, not because of her illness, but because appropriate resources she tried too hard to access weren’t provided to allow her to continue appreciating the life she loved living,” LeGal said.
“She could have lived more with the right assistance. She wanted to be here and to be happy. She had a lot of life still in her, but the struggles, challenges and frustrations were too many.”
Kovac lived on her own in a house her grandparents gave her. She was working in a daycare in 2006 when she got the terrifying and all-too familiar diagnosis; ALS had ended the lives of her grandmother, mother, uncle and several cousins.
“I had to leave the job because it was physically demanding,” she said. “I was running the school-age program and it involved walking the kids back and forth to school, and I was also helping with the preschool program, which required chasing kids around and being able to get down and up from their level.
“I was concerned for their safety if I couldn’t perform.”
“She had a lot of life still in her, but the struggles, challenges and frustrations were too many.”–Friend Janine LeGal
The province and the ALS Society told her she would be looked after if she moved into a seniors residence or Riverview Health Centre, but Kovac said all she needed was a little more help to continue living at home. She knew of others with the disease who died shortly after moving into long-term care.
She received $2,359.77 bi-weekly from the province to cover the maximum-allowable 55 hours weekly for self-managed home care.
“This might seem like plenty of hours, but it is not when you are requiring personal care, bathing, feeding and food prep, laundry and assistance with every act of daily living,” she said.
“Just transferring me from bed to wheelchair can take quite a while and then from wheelchair to bathroom and bathroom back to wheelchair — the transfers themselves take significant time.”
Kovac said she didn’t have much family and friend support to fill in the gaps as the years went by. She told the Winnipeg Regional Health Authority she needed more hours to help her in the washroom and to feed her.
“I was told to just pay out of pocket and use some private agency if I needed anything beyond what I was given, as though that was an accessible, sustainable option living on $1,300 a month from disability income and CPP,” she said.
Shayla Brantnall, one of the workers Kovac hired, said the home-care system doesn’t work for people such as Kovac, who need intermittent care throughout the day.
“That seven hours needs to cover morning, afternoon and evening care,” Brantnall said, admitting many times she stayed later to help, knowing she wasn’t being paid.
“The hours that she is permitted… is not enough to live a quality life and get all her basic needs met.”
Kovac wanted to make it absolutely clear that she didn’t make the decision to avail herself of MAiD’s services because of the disease.
“I get kind of mad when people think this… has everything to do with my body and decline… I don’t feel like I have choices. I could be around a long time and I could be happy… I’m mad that I don’t have dependable, reliable people and that it has worn me down,” she said.
“I don’t have enough help and that is the reason. Period.”
Health Minister Audrey Gordon, who offered condolences to Kovac’s family and friends, said the Progressive Conservative government is considering changes to the home-care program.
“My colleague (Seniors and Long-Term Care) Minister (Scott) Johnston has been looking at the home-care program and the needs of the Self and Family Managed Care program, and other aspects of home care, and I will certainly take this back and have some discussions with him,” Gordon said Monday afternoon.
“I don’t have enough help and that is the reason. Period.”–Sathya Kovac
Opposition Leader Wab Kinew said home-care services should be available at a level that allows Manitobans to live with dignity in the community.
“The idea that not only would somebody leave us under tragic circumstance, but also that they would feel some duress because of policy decisions that are being made in the public sphere — it’s something that I think all Manitobans would want us to look at and find ways to improve,” the NDP leader said.
A WRHA spokesperson said if a home-care client’s needs have been assessed to require more care than 55 hours each week, additional funds are available “for a period of time as part of bridging to an alternative-care setting.”
“All requirements and processes related to the MAiD application and eligibility were adhered to in this case,” the spokesperson said.
Despite her overwhelming frustration and anger, Kovac’s obituary was written by someone who sounded at peace with the finality of the decision she’d made.
“I wanted to be a writer, so at least this will be in print. I wanted to be a mom and my amazing dog Shanti made me feel like I was. I wanted to do healing work and in a way I did. I wanted to be loved and I finally learned to love myself. Now I want to be brave, explore and travel, and see how it feels to be light,” she wrote.
“I hope there is sun and tea and peace where I go or something even better. Do something nice. See you.”
— with files from Danielle Da Silva
Kevin Rollason is one of the more versatile reporters at the Winnipeg Free Press. Whether it is covering city hall, the law courts, or general reporting, Rollason can be counted on to not only answer the 5 Ws — Who, What, When, Where and Why — but to do it in an interesting and accessible way for readers.
Updated on Tuesday, October 4, 2022 11:55 AM CDT: Adds WRHA spokesperson quote