'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
RCMP uncovers plot to sell drones and equipment to Libya
The RCMP says it has uncovered a plot by two men in Montreal to sell Chinese drones and military equipment to Libya illegally.
Demonstrators kicked out of Ontario legislature for disruption after failed keffiyeh vote
A group of demonstrators were kicked out of the legislature after a second NDP motion calling for unanimous consent to reverse a ban on the keffiyeh failed to pass.
Tom Mulcair: Park littered with trash after 'pilot project' is perfect symbol of Trudeau governance
Former NDP leader Tom Mulcair says that what's happening now in a trash-littered federal park in Quebec is a perfect metaphor for how the Trudeau government runs things.
Government agrees to US$138.7M settlement over FBI's botching of Larry Nassar assault allegations
The U.S. Justice Department announced a US$138.7 million settlement Tuesday with more than 100 people who accused the FBI of grossly mishandling allegations of sexual assault against Larry Nassar in 2015 and 2016, a critical time gap that allowed the sports doctor to continue to prey on victims before his arrest.
Man wanted in connection with deadly shooting in Toronto tops list of most wanted fugitives in Canada
A 35-year-old man wanted in connection with the murder of Toronto resident 29-year-old Sharmar Powell-Flowers nine months ago has topped the list of the BOLO program’s 25 most wanted fugitives across Canada, police announced Tuesday.
Doctors ask Liberal government to reconsider capital gains tax change
The Canadian Medical Association is asking the federal government to reconsider its proposed changes to capital gains taxation, arguing it will affect doctors' retirement savings.
Keeping these exotic pets is 'cruel' and 'dangerous,' Canadian animal advocates say
Canadian pet owners are finding companionship beyond dogs and cats. Tigers, alligators, scorpions and tarantulas are among some of the exotic pets they are keeping in private homes, which pose risks to public safety and animal welfare, advocates say.
Thieves use stolen forklift to rip cash machine out of U.K. bank
Police in the U.K. are searching for a group of suspects seen on video using a forklift to steal a cash machine from a bank.
'There was a lot of black smoke': Crane operator sounds alarm while trapped during highrise fire in Halifax
A tower crane operator alerted emergency crews after noticing a fire on a construction site in Halifax Tuesday morning.