A month ago, death was not on the mind of Jacques Comeau, 66.
But now he doesn’t know where to turn. On Wednesday, he meets with a doctor to be evaluated for medical assistance in dying (MAID).
Comeau, a retired art therapist from Montreal, is a quadriplegic and uses a wheelchair.
Like everyone else, he had his ups and downs. But thanks to home care services, he says, he has lived a rich and happy life.
“It allowed me to go back to school, to get degrees, to work. Everything I’ve done, travel, is because I can not have to worry about it,” said he told CTV News.
Things changed over the summer, however, as his local health services center (CLSC) underwent some changes.
As a result, aspects of Comeau’s skincare routine are different, and he said it’s affected his quality of life.
“I’m stressed beyond belief, not sleeping well, not eating regularly,” he said. “The amount of pain I’m dealing with, psychologically, is the kind I’ve never faced. I became disabled as a youngster and went through that. And it’s 10 times worse.
Comeau says his efforts to negotiate a solution with the CLSC were unsuccessful. Depressed and desperate, there is only one way he can think of.
“I wake up in the morning, and my first thought is, ‘How am I going to make sure I don’t kill myself today.'”
A SUDDEN CHANGE
CTV spoke with Comeau at his Lachine home on Thursday, where his own paintings and photographs adorn the walls.
It is here that, three times a week, nursing assistants appear to help relieve his intestines.
For years, the service was provided by the same 10 to 15 people, who familiarized themselves with Comeau’s body and its specific needs. They have also become trusted companions – it is intimate service, after all, and the walls come down.
But according to Comeau, the CLSC Dorval-Lachine has changed the system by sending him new orderlies he does not know.
He says the procedure is not done properly which is causing him discomfort and pain.
“The second person who came, they overdid it, and I had an involuntary bowel movement. So I had a bowel movement in my pants in the middle of the day, and I had pain and cramps all day,” he said.
Jacques Comeau, 66, requested medical assistance in dying (MAID) because of what he calls inadequate home care services. (CTV Montreal/Lillian Roy)
He thought the solution would be simple: bring in the usual caregivers and train the new ones according to his particular needs.
But the CLSC reportedly refused, saying the training could only be provided by a nurse.
“I was totally surprised,” he said. “When they talked about these upcoming changes, I knew there would be a problem with people who had never been here before, because although they are all trained in this technique, it is different with each nobody.”
The health authority that oversees CLSC Dorval-Lachine, CIUSSS de l’Ouest-de-l’Île, declined multiple requests for comment from CTV on 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 professional,” spokeswoman Hélène Bergeron-Gamache wrote in an email. “However, the labor shortage context we are facing does not always allow 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 THIS WAY”
Shopping, working, visiting friends – it’s all these moments, big and small, that come together and form a life.
But those times have been cut short for Comeau because he cannot meet a basic need.
“Think of a time when you had diarrhea, or you had a stomach ache. Every day you get up and say to yourself, ‘Am I going to make it to the bathroom on time? I bother to go to work today, do I get in my car? Do I go to the grocery store?’ And that’s my everyday life 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 stools all day? Is my life going to be?” He continued. “I can’t live like this.”
It is an incessant source of anxiety.
“The biggest problem is that I get up in the morning, I don’t know who’s coming, how it’s going to be. So I’m constantly on my nerves wondering what’s going on.”
A SYSTEM FAILURE?
Adèle Liliane Ngo Mben Nkoth, an accessibility advocate, says Comeau’s situation is far from unprecedented.
“Everywhere in Quebec, we see it,” said Nkoth, an organizer for MEMO Quebec, a group representing people with motor disabilities where Comeau worked before retiring.
“It is deplorable to see that in Canada, in Quebec, in 2022, that we find ourselves in these situations, for a country as rich as ours,” she added.
Jacques Comeau (left) and Adèle Liliane Ngo Mben Nkoth (right). (CTV Montreal/Lillian Roy)
Nkoth said cases like this are preventable and death should not be the only option.
“It’s a shame that people are coming to think they have to take medical aid to die because that care isn’t there.”
Dr. Paul Saba, family physician and president of the board of physicians at the Lachine Hospital, agrees.
He fears that failures in the system, which can be corrected with the right policy and funding, are causing people to end their lives prematurely.
“People choose it because they can’t find proper housing, no affordable housing, no food, where they don’t get enough social services, not enough nursing help,” he said. at CTV News.
“We basically get rid of people who we consider ‘undesirable’ and society goes along with it. We have to say ‘stop’.”
But for Comeau, that seems like the only option unless something changes quickly.
“I can accept the idea of death saying ‘I’ve had a great life,'” he said.
“I did everything, I paid my taxes, I contributed to society, but here I am.”