Dying through the cracks of the system
“I saved lives”, says Manon Fleurant bluntly. For two years, she lived on Pelletier Street, in a house owned by the Société d'habitation populaire de l'Est de Montréal (SHAPEM), a housing NPO. Six months ago, she left Montréal-Nord to live in a public housing in the Mercier—Hochelaga-Maisonneuve borough. “Otherwise, I would still be there,” she continues. Today, Manon is back in her old home to ensure the monthly distribution of food to residents, an initiative she put in place herself. For the occasion, she asked her sister and a friend to come and lend a hand. “I take care of the kitchen anyway, it allows me to keep in touch. It allows them to see me, and me to see them — they were not happy when I left,” says Manon.
We quickly understand why: Manon invests enormously in her neighbours, to the point of having become a lifesaver. Throughout the COVID-19 pandemic, she provided food distribution. She first did it from her home, on the third floor, distributing the food using a rope. When possible, she and her volunteer colleagues invested in the community space made available to them by Paroles D'Exclues, an NPO driven by citizen mobilization and research, whose premises are located on the SHAPEM property. “Some would have died in their homes,” says the former resident. During their regular visits to distribute food, Manon Fleurant and Daniel Bissonnette, also a resident, note the health condition and needs of several people. Manon recounts how she called 911 for a neighbor, Fred*, without her knowing. “The doctor said that, a few more days, and he was dead,” she comments about the man, who spent several months in the hospital. Today he is doing well.
Losing your neighbors
Others were less fortunate. As soon as she arrived, Manon became friends with Célia. “The doctor said: “I have never seen anyone smile until their last breath,” she reports from her friend, whose good mood was contagious. Manon explains that the 60-year-old, who lived alone, suffered from Lou-Gehrig's disease, which was diagnosed too late. “They didn't listen to me,” she regrets. She saw her friend's health condition deteriorating rapidly during the pandemic. “Name them all, I called the CLSC, social services... We were not heard until the last time, but the last time it was too late.” Manon says she called the ambulance several times for her friend. Once, the emergency services left without the patient. The next time, she was released from the hospital the next day. “I called her sister, I said, 'God, she's going to stay in her apartment, we have to do something, '” she recalls. She convinced the patient to go back to the hospital, Celia left in an ambulance. “When the doctor saw her, he said she would not come back,” Manon laments. Célia will never return home, she died a month later. “Because I was not listened to, she repeats. They could have done something long before to alleviate his suffering.”
A few months earlier, Marcel*, a neighbor, died alone at home. “He passed by, he stopped all the time,” says Manon, who saw him daily when he went to the local convenience store. He was a well-known person and involved with the residents of SHAPEM, he was often busy cleaning the yard and the surroundings. “Marcel, we often gave him food, he brought food for his neighbours,” says Manon, testifying to her generosity.
And then she never saw him again. Her calls went unanswered, she went several days without news. “If he had health problems, he didn't talk about them, he never complained, he was always happy to see us,” reports Manon of her neighbor, who drank a lot. Residents alerted Paroles D'Exclues staff. She is an employee who, on going to see, saw Marcel on the ground, at home, where he was pronounced dead. Just under a month ago, Elzéar* was found dead. Manon and Daniel believe they were the last to hear from him during the food distribution last month. Two weeks later, Manon was called to tell him that he had died at home. “He had mobility problems, I know he was very ill, I don't know what he had. It's another person we've lost,” laments Manon. “They're good people,” says Manon about the missing. Despite their health or problems.”
Living alone
“It's not fun to be alone; nobody in life wants to be alone,” says Daniel Bissonnette, an involved citizen. “Some people do it by choice, but often, it's a combination of circumstances,” he believes. He has lived in SHAPEM housing for almost 12 years.
Daniel estimates the number of Habitations de la SHAPEM homes on Pelletier Street at 200. Families live there, but the majority of them are single people, often aged 50 and over. In total, SHAPEM manages a housing stock of 1,750 homes.
In Quebec, 1.2 million people live alone, according to Statistics Canada's 2016 census figures. This is 17% of the population, a proportion that has doubled in the last 30 years. In Montreal, this percentage reached 21% of the population, compared to 28% of households in the country, or 4 million Canadians. These surveys noted that people living alone had poorer mental and physical health than those who lived with others. Today, with his partner Manon, Daniel prepares sandwiches expertly. When his former neighbor is not there, he continues his work as part of other citizen projects dedicated to residents. “Knowing that there are people around who are there, who notice if they don't see us, is reassuring, it's reassuring,” judges Daniel. When you live alone, especially if you don't go out much, you better have people watching you.” Exactly, he mentions a neighbor who is experiencing difficulties and who is ill. It will come later. “With food assistance, we managed to see that people were not doing well.
We put so much forward during the pandemic,” he said. It also tells the story of Célia*. There are many more stories. Lives saved, others lost. “It happens regularly that we find someone,” he regrets. He tells how, since the pandemic, community organizations have been absent from the premises. “There has been no activity put forward, except those by citizens,” he mentions. The end of lockdown has not been able to bring these services back on site. “All the accesses we had before have been closed, despite the reopening”, continues Daniel. He points out that residents live in a desert of services. There is no clinic or pharmacy nearby, and the nearest supermarket is in Laval, across the bridge.
He denounces the fact that it is difficult to get help from health and social services, which are there for that. “It is a bureaucratic government machine. Even if you have problems today, call the CLSC, you will not have service tomorrow morning. The CLSCs are so bureaucratized that nothing works anymore,” laments the resident. Daniel also observes that few measures reach the people where they are. “You have to work in the field. It is on the ground that reality happens.”
It highlights the efforts and initiatives of the citizens of Habitations de la SHAPEM during the pandemic, which local CLSC staff were invited to discover during a meeting. The event left a big impression on him. “We managed to get them out of their offices. It was a great day,” he recalls. Daniel says that their guests themselves were happy to go out, and that they had to explain to their bosses why they were going there. “Getting them out of their offices was the deal of the century. However, it is outside their offices that business happens,” he argues. He hopes that this visit demonstrated how useful local services can be. “We, if we don't show innovation, imagination, and don't give a shit about each other, nothing will happen.” For 25 years, Daniel worked as a beneficiary attendant. He is critical of the health system, especially the lack of access. “The emergency is the gateway to the health system.
However, it's the last place you should land,” he said, hoping that people could get treatment before it was too late. He tells us how afraid his neighbours are to go to the hospital, because they fear not being listened to or taken seriously. “However, it is obvious that people need care.” In the meantime, he is doing the work himself. “I want us to train citizens so that we can have a 911 citizen. We call our world, at least we know what's going on around it. If there is not that, no one is going to do it here.”
Guilt, powerlessness, and frustration
Within the walls of SHAPEM, the offices of Paroles D'Exclues have been located for 15 years. The mission of the NPO is to promote citizen mobilization. It is in their premises that Manon and Daniel prepare food. Neighborhood residents can also come and chat, have coffee, get information, and offer ideas.
“There is a lot of listening to the needs to see if measures can be taken and lead to changes, as there is also a lot of referrals to resources”, explains Marie-Soleil Garzon, mobilization manager.
Since the organization does not offer services, staff sometimes find themselves stuck at the foot of the wall. “This is something that might not have happened,” assesses Christine*, a former mobilization officer, about the three deaths she witnessed. Another occurred just before he arrived at the station. How many people died alone on Montreal Island? Impossible to say, there is no data on this subject. “I know four, four too many,” summarizes Christine sadly.
In these circumstances, it is difficult to know the extent of the phenomenon elsewhere. She was the one who discovered Marcel's body after a neighbor told him that she could no longer hear his coming and going. “The neighbors said Marcel was not well,” she recalls. Same story for Célia. “How many times did we send her to the hospital before they discovered that she had a degenerative disease? ” she asks.
It is difficult to explain the death of Elzéar. “We lost him, we should not have lost him. I fought for him to have home care, he was an elderly person. I really put a red flag on her situation,” she said of the man who lived alone and took her in love. He called her often to thank her. The 60-year-old had no family. “There are several, people in Montréal-Nord, who are alone, who have no social network,” she recalls. Neighbors smelled and sounded the alarm.
Emergency services discovered his body in his home. Christine is not a social worker, rather she compares her former role to that of a neighborhood leader. “I can at least assess what the person needs,” she says. The mobilization officer contacted social services to obtain follow-ups. “I was knocking on the doors and I had no answer, it was complicated,” she said.
Many citizens did not dare to call 911 in case of emergency; they called Christine first, sometimes on Saturday at midnight. “I always answered the phone. I encouraged them to call 911, I told them what to say. “Yes, but they're going to be mad at us,” they said. I told them no,” illustrates Christine, who has since left her post. She testifies to the consequences that these unfortunate situations have had on citizens. “There are a lot of lonely people who see this and say to themselves: “This can happen to me.” I can fall into my apartment and no one is going to notice. This solitude is terrible.”
Her colleague Marie-Soleil Garzon agrees. “Guilt, powerlessness, frustration,” she lists to talk about residents' feelings. “Residents created a social safety net because they saw that, if they didn't, they could lose people.”
Get help
In Quebec, the mission of the Integrated University Health and Social Services Center (CIUSSS) is to help the population obtain the health and social services they need. The CIUSSS are divided by sector and supervise hospitals and local community service centers (CLSCs) in particular. Marie-Hélène Giguère, head of the population relations and public relations department at the CIUSSS du Nord-de-l'Île-Montréal, indicates that the government body is present in housing NPOs for seniors — of which SHAPEM is not a member, because the organization offers housing for all. The publicist affirms that the lack of access to services and the death of people alone at home were not mentioned at the Table de consultation des seniors in the sector, nor in the various programs and services of the CIUSSS.
“After checking with our community organization and public health team, I can confirm that community mobilization is particularly dynamic with seniors at the moment in Montréal-Nord,” says Ms. Giguère. She states that we can count on awareness teams, who go door to door, to prevent the deconditioning of elderly people, as well as on close collaboration with community partners and the regional public health department. That is not what the actors in the field observe. Marie-Soleil Garzon believes that citizens are left to themselves and have to look out for each other. “They are trying to alleviate the problem, but it is not up to them to do it. They don't have that responsibility. They already have to take care of themselves and their daily burden,” she says.
She asks that there be local services that reach people, because many have known health problems. “It takes proximity. Not everyone can afford to go to the CLSC, and it's intimidating for someone who doesn't feel confident,” she says. She believes that the current system is designed for those who are able to get to services, who are well treated from the beginning or who do not feel stigmatized. “Some people don't have phones to make appointments, others who don't know how to do it — it's thought for a certain population, it's still inaccessible to everyone,” summarizes Ms. Garzon.
Local health experiments were conducted on an ad hoc basis with residents. Ms. Garzon wants a long-term project to be put in place, with people who take the lead, who get to know the citizens and who are ready to make interventions or consultations. “It is a format that works well with residents, and it is one of the ways that allow them to confide and feel confident. It takes versatility, basically, and flexibility,” she believes. For example, in retirement homes, there are staff on site, like in a school, there is a nurse. “Once you have found help, you must also be able to keep it,” continues her former colleague Christine. “The CSLC works a lot on demand.
These people don't ask anymore,” she testifies. She suggests that street workers, such as those who work with young people, be sent to help seniors. “It would be interesting to identify single people, to assess their needs.” And, in the long term, follow-up should also be ensured on a regular basis. She believes that public health services need to make a U-turn and she hopes for better collaboration between them and community organizations. “What I can observe is that workers want to do local work — leave the CLSC, the hospital, and go out into the field,” says the woman who met with many stakeholders. This desire to act must go in a certain direction. “Public health is a big ship, we don't turn things around the way we want.”
Housing and isolation
If these deaths occurred in SHAPEM homes, Christine believes that the NPO is doing what it can. We contacted SHAPEM on this subject, but we did not get a response at the time of writing. “It is still an important player in social housing, an actor who is connected in his community,” says Marc-André Desrochers, former director of territorial mobilization at the organization. He explains that the NPO for social housing develops links with community organizations and social services, but does not offer such support to tenants. Housing people with different profiles poses all sorts of challenges for the organization. To obtain housing, citizens must go through the Office municipal d'habitation de Montréal to apply. He points out that social services lack resources, especially field workers. “An NPO cannot afford field workers.
It cannot be part of a team in place in an environment. It is not the role of the owner at the base,” he says. Mr. Desrochers is of the opinion that isolation is a social problem, which is less common at SHAPEM than elsewhere. “Seniors and isolated people are everywhere in our communities. But you can see the capacity, especially the desire to build relationships, which means that people are less alone than others,” he says. There is no point in naming culprits for the deaths. “The person may have cut themselves off from their environment for a variety of reasons, over which they are in control. A person may be isolated for any number of reasons.” According to him, many people don't want to be visited. So who helps the lonely and vulnerable people? To avoid the worst, resident Daniel Bissonnette wants everyone to develop the habit of getting to know their neighbours and those around them. “You have to continue, not stop, help. That's the point.”
*The first names of some of the people we met were voluntarily changed in order to preserve their anonymity.
With information from Julien Forest.