Diane Gendron watches over her husband who has been suffering from Parkinson’s disease since 2015. Exhausted, natural caregiver wants to take one or two weeks of vacation per year. To redo the full energy. “But decent respite options are almost nonexistent,” she deplores.
Mme Gendron is a full -time natural help. A CLSC report to assess the needs of her husband mentions that the latter is “autonomous thanks to the constant presence of his spouse”. All this has a price: “I am extremely tired”, blows Mme Gendron, who cannot hold back his tears.
On this Monday morning when she receives The press In his house in Rosemont, the torrential rains of the day before flooded his basement. Another tile on the head of the Montrealer, who says he is “at the end of the roller”.
The state of her husband Mohamed*, with whom she has been married for 33 years, deteriorates quietly. His body is more and more rigid. His tremors, more and more pronounced. Cognitive losses are accentuated. Mme Gendron can sometimes be absent from the house, but never more than an hour. And not all the time. “The disease is fluctuating. It depends on the days, ”she says.
Once a week, Mohamed, an engineer by training, goes to a day center to do activities for a few hours. And a CLSC worker comes on Wednesday afternoons to take care of him. Mme Gendron takes the opportunity to go shopping or go to his medical appointments. But the load remains immense.
Last May, completely at the end of his strength, Mme Gendron turned to the Ciusss de l’Est-de-l’île-de-Montréal in an attempt to obtain a week’s respite. She wanted to have a vacation with her daughters aged 18 and 22.
Mohamed was offered a place at the CHSLD Champlain-Marie-Victorin, an establishment of nearly 270 beds in the east of the metropolis. But a place visit has cooled it. Mme Gendron describes tiny and toilet rooms, dirty and dilapidated units. She cannot resign herself to send her husband there. She fears that all her achievements are lost. Shocked, mme Gendron wrote an open letter in May to claim more places to respite in Quebec1.
Several gaps
The most recent visit report of the Ministry of Health at the CHSLD Champlain-Marie-Victorin, dated May 2024, noted several shortcomings in this establishment. We can read that “some staff members do not have a warm approach”, that the places “are not clean” and “are not well maintained” and that “individual and group activities are not offered on a daily basis”. “I wouldn’t even entrust my dog,” says Mr.me Gendron.
The spokesperson for the CIUSSS de l’Est-de-l’île-de-Montréal, Luc Fortin, ensures that “the care and services offered in this establishment are safe, adequate and well suited to the needs of accommodated users”. An “improvement plan” of the ministry shows that maintenance work has been carried out in the last months and that other steps are underway.
Photo François Roy, the press
Diane Gendron takes care of her full -time husband and denounces the lack of decent respite options.
The Champlain group, which operates the private-conventioned CHSLD Champlain-Marie-Victorin, recognizes that the establishment needs important renovations. “The situation is known to the ministry,” said spokeswoman Annie Gauthier, who ensures that the lack of heat of certain employees, noted in the ministerial visit report, is an isolated event.
The Ciusss de l’Est-de-l’île-de-Montréal, which takes care of the Mohamed file, adds that the 14 respite beds offered on its territory “make it possible to fully meet demand”. “No respite request from eligible users has been refused this year,” says email Luc Fortin.
1,5 million
This is the number of natural caregivers and caregivers in Quebec.
Source: Quebec Statistics Institute
Mme Gendron was offered another respite option for her husband in Montreal, on July 11, more than eight weeks after his first request.
Nathalie Déziel, director of the regrouping of caregivers and caregivers of Montreal, believes that long -term respite places are “rare” in the metropolis. And that too often, the places are inadequate. “You want to have a quiet head when you send a loved one in respite. But the CHSLD of respite are often mischievous, dilapidated, it lacks activities … People refuse to send their loved ones there, ”she says.
Helping with caregiver
Mme Gendron looked at other respite options for her husband. On the private side, the costs are prohibitive. It must be said that the last years have been very difficult for the philosophy teacher at Cégep: she had to put her career on break, in 2014, when she was detected an aggressive breast cancer with metastases. She recovered by thwarting all the forecasts.
But in 2015, it was her husband’s turn to have a diagnosis of Parkinson. “Since the start of my cancer, Mohamed has been my caregiver. He was super good. But little by little, the roles were reversed, ”she says.
Mme Gendron also turned to the Gilles-Carle houses. But the only house of this type in Montreal is currently closed. The nearest option is in… Cowansville.
Without adequate respite, I will have to consider placing my husband in CHSLD permanently. It costs the state $ 13,000 per month. It seems to me that it would be more economical to offer me two weeks of respite per year than having to watch out for my husband.
Diane Gendron, close caregiver
Founder of the Gilles-Carle houses, Chloé Ste-Marie says it is “completely false” to say that the number of places of respite is sufficient in Quebec. Mme Ste-Marie recalls that in 2018, the government has committed to opening 20 Gilles-Carle houses in Quebec. The province has already counted 11. But four have had to close in recent years, for lack of funding.
In 2024-2025, new funds of $ 30,000 per bed were granted to Gilles-Carle houses, Santé Québec said. An eight -seat house must also open in Montreal soon. Santé Québec mentions that several other investments have been made in recent years to improve response to caregivers, especially in day centers and for the long -term Baluchon respite service. And others are to come.
According to Mme Ste-Marie, the development of respite houses must accelerate now. “Caregivers can no longer help. It takes more respite houses. And it’s not just quantity. It also takes on quality. Who wants to go to respite in CHSLD? She asks.
Mme Ste-Marie recalls that many caregivers have no energy or time to claim more respite places. An opinion shared by Diane Gendron “People who need respite, but who are less comfortable with the network mazes or who just don’t have the energy to contest, what do they do?” She wonders.
* Mohamed preferred to silence his last name for fear of reprisals.
1. Read the open letter from Diane Gendron