'I can't live that way': Montreal man seeking medically assisted death due to home care conditions
A month ago, death wasn't on 66-year-old Jacques Comeau's mind.
But now, he doesn't know where else to turn. On Wednesday, he's meeting with a doctor to be assessed for medical assistance in dying (MAID).
Comeau, a retired art therapist from Montreal, is quadriplegic and uses a wheelchair.
Like everyone, he's been through ups and downs. But through homecare services, he says, he's lived a rich and happy life.
"It allowed me to go back to school, get degrees, to work. Everything I've done, travelling, it's because I'm able to not have to worry about that," he told CTV News.
Things changed over the summer, however, when his local health service centre (CLSC) underwent some changes.
As a result, aspects of Comeau's care routine are different and he said it has affected his quality of life.
"I'm stressed beyond belief, I'm not sleeping well, I'm not eating regularly," he said. "The amount of pain I'm dealing with, psychologically, is the kind I've never dealt with. I became disabled as a young person and got through that. And this is 10 times worse."
Comeau says his efforts to negotiate a solution with the CLSC have been fruitless. Depressed and desperate, there's only one path forward he can think of.
"I wake up in the morning, and my first thought is, 'how am I going to make sure I'm not going to kill myself today.'"
A SUDDEN CHANGE
CTV spoke with Comeau in his Lachine home on Thursday, where his own paintings and photographs decorate the walls.
It's here where, three times a week, orderlies appear to help him relieve his bowels.
For years, the service was performed by the same 10 to 15 people, who have become familiar with Comeau's body and its specific needs. They've also become trusted companions -- it's an intimate service, after all, and the walls come down.
But according to Comeau, the CLSC Dorval-Lachine changed the system, sending him new orderlies he doesn't know.
He says the procedure is being performed incorrectly, causing him discomfort and pain.
"The second person that came, she overdid it, and I had an involuntary bowel movement. So I had stool come out in my pants in the middle of the day, and I was in pain and cramping all day long," he recounted.
Jacques Comeau, 66, has applied for medical assistance in dying (MAID) due to what he calls inadequate home care services. (CTV Montreal/Lillian Roy)
He thought the solution would be simple: have the usual orderlies come in and train the new ones according to his particular needs.
But the CLSC allegedly refused, stating training could only be performed by a nurse.
"I was totally taken aback," he said. "When they talked about these changes coming, I knew there would be an issue with people who had never come here before, because although they're all trained in this technique, it's different with each person."
The health authority that oversees the CLSC Dorval-Lachine, the CIUSSS de l'Ouest-de-l'Île, declined CTV's multiple requests for comment about Comeau's case, citing confidentiality concerns.
However, a CIUSSS spokesperson noted that patient care can sometimes be affected by staffing issues.
"Whenever possible, we try to offer stable staff to our clients so that they are cared for by the same health care professional," wrote spokesperson Hélène Bergeron-Gamache in an email. "However, the labour shortage context we are facing does not always allow for this."
She said all orderlies have "received the required training."
"Please note that, by law, [home service workers] must be trained by a nurse."
'I CAN'T LIVE THAT WAY'
Running errands, working, visiting friends -- it's all those moments, big and small, that come together and form a life.
But these moments have been interrupted for Comeau because he can't take care of a basic need.
"Think about a period where you had diarrhea, or you had a stomach bug. Every day, you're getting up and you're like, 'Am I going to make it to the bathroom on time? Do I bother going to work today, do I get in my car? Do I go to the grocery store?' And that's my life every day now."
He says his dignity and autonomy have been stripped away.
"Is my life going to be sitting in front of a TV, wearing a diaper, sitting in stool all day long? Is that what my life is going to be?" he continued. "I can't live that way."
It's a relentless source of anxiety.
"The biggest problem is, I get up in the morning, I don't know who's coming, how it's going to go. So I'm constantly on edge wondering what's happening."
A FAILURE OF THE SYSTEM?
Accessibility advocate Adèle Liliane Ngo Mben Nkoth says Comeau's circumstances are far from unheard of.
"Everywhere in Quebec, we see this," said Nkoth, an organizer with MEMO Quebec, a group representing people with motor disabilities where Comeau worked before retiring.
"It's deplorable to see that in Canada, in Quebec, in 2022, that we find ourselves in these situations, for a country so rich as ours," she added.
Jacques Comeau (left) and Adèle Liliane Ngo Mben Nkoth (right). (CTV Montreal/Lillian Roy)
Nkoth said instances like this are preventable, and that death should not be the only option.
"It's a shame that people come to think they have to take medical aid to die because that care is not there."
Dr. Paul Saba, a family physician and board of physicians president at Lachine Hospital, agrees.
He fears failures in the system, which can be fixed with the right policy and funding, are driving people to end their lives prematurely.
"People are choosing it because they can't get proper housing, can't get affordable housing, can't get food, where they're not getting enough social services, not enough nursing help," he told CTV News.
"We're basically getting rid of people that we consider as 'undesirables' and society is going along with it. We must say 'stop.'"
But for Comeau, it feels like the only option unless something changes, fast.
"I can accept the idea of death by saying 'I've had a good life,'" he said.
"I’ve done everything, I’ve paid my taxes, I’ve contributed to society, but here I am."
CTVNews.ca Top Stories
Most of Canada to receive emergency alert test today
The federal government will test its capacity to issue emergency alerts today, with the exception of Ontario, where the test will take place on May 15.
NEW For their protection, immigrants critical of China and India call for speedy passage of Canada's foreign interference legislation
Canadian immigrants threatened by hostile regimes are urging parliamentarians to quickly pass the 'Countering Foreign Interference Act' so they can feel safe living in their adopted home.
OPINION No reunion between Prince Harry and the King signifies a setback for royal unity
Prince Harry, the Duke of Sussex, has made headlines with his recent arrival in the U.K., this time to celebrate all things Invictus. But upon the prince landing in the U.K., we have already had confirmation that King Charles III won't have time to see his youngest son during his brief visit.
How Drake and Kendrick Lamar's rap beef escalated within weeks
A long-simmering feud between hip-hop superstars Drake and Kendrick Lamar reached a boiling point in recent days as the pair traded increasingly personal insults on a succession of diss tracks. Here’s a quick overview of what’s behind the ongoing beef.
Israel says it reopened a key Gaza crossing after a rocket attack but the UN says no aid has entered
The Israeli military said Wednesday that it has reopened the Kerem Shalom crossing into Gaza, a key terminal for the entry of humanitarian aid that was closed over the weekend after a Hamas rocket attack killed four Israeli soldiers nearby.
'A huge difference': These adults born in the '90s partnered with their parents to buy homes in Ontario
An Ontario woman said it would have been impossible to buy a house without her mother – an anecdote that animates the fact that over 17 per cent of Canadian homeowners born in the ‘90s own their property with their parents, according to a new report.
Stormy Daniels describes meeting Trump during occasionally graphic testimony in hush money trial
With Donald Trump sitting just feet away, Stormy Daniels testified Tuesday at the former president's hush money trial about a sexual encounter the porn actor says they had in 2006 that resulted in her being paid to keep silent during the presidential race 10 years later.
Susan Buckner, who played spirited cheerleader Patty Simcox in 'Grease,' dead at 72
Susan Buckner, best known for playing peppy Rydell High School cheerleader Patty Simcox in the 1978 classic movie musical 'Grease,' has died. She was 72.
Northern Ont. woman makes 'eggstraordinary' find
A chicken farmer near Mattawa made an 'eggstraordinary' find Friday morning when she discovered one of her hens laid an egg close to three times the size of an average large chicken egg.