MONTREAL, July 31, 2025 — Diane Gendron, an exhausted caregiver, is struggling to find adequate respite options for her husband, Mohamed, who has been living with Parkinson’s disease since 2015. “Decent respite options are almost nonexistent,” she laments.
Diane Gendron dedicates her life to caring for her husband, Mohamed, who has Parkinson’s disease. A CLSC report notes that Mohamed is “autonomous thanks to the constant presence of his spouse.” This constant care, however, takes a toll. “I am extremely tired,” Gendron shared, her voice thick with emotion. Her home in Rosemont recently dealt with a flooded basement, adding to her burdens. She admits she’s “at the end of the roller.”
Mohamed, married to Diane for 33 years, experiences increasing physical rigidity, pronounced tremors, and cognitive decline. While Diane can occasionally leave their home, her absences are limited to about an hour at a time. “The disease is fluctuating. It depends on the days,” she explained.
Once a week, Mohamed, a trained engineer, attends a day center for activities. A CLSC worker also visits on Wednesday afternoons. These are crucial moments for Diane to manage errands or attend her own medical appointments. Yet, the overall caregiving load remains immense.
Diane Gendron takes care of her full-time husband and denounces the lack of decent respite options.
Last May, at her breaking point, Gendron sought a week of respite from the Ciusss de l’Est-de-l’île-de-Montréal, hoping for a vacation with her daughters, aged 18 and 22. Mohamed was offered a spot at the CHSLD Champlain-Marie-Victorin, a 270-bed facility. However, a visit left her dismayed. She described the rooms as tiny, the toilets as shared, and the units as dirty and dilapidated. Fearing her husband would regress, she refused to send him there. Shocked by the conditions, Gendron penned an open letter in May, calling for more respite options in Quebec.
Deteriorating Conditions and Official Responses
A May 2024 Ministry of Health report on CHSLD Champlain-Marie-Victorin highlighted significant issues. It noted that “some staff members do not have a warm approach,” that the “places are not clean” and “not well maintained,” and that “individual and group activities are not offered on a daily basis.” Gendron stated, “I wouldn’t even entrust my dog.”
Luc Fortin, a spokesperson for the CIUSSS de l’Est-de-l’île-de-Montréal, asserted that the care and services at the establishment are “safe, adequate and well suited to the needs of accommodated users.” An “improvement plan” indicates ongoing maintenance work and planned upgrades.
Annie Gauthier, a spokeswoman for the Champlain group, which manages the CHSLD Champlain-Marie-Victorin, acknowledged the need for renovations, adding, “The situation is known to the ministry.” She described the lack of warmth from some staff, noted in the report, as an isolated incident.
The CIUSSS de l’Est-de-l’île-de-Montréal also stated that the 14 respite beds available in its territory “make it possible to fully meet demand.” Fortin added via email, “No respite request from eligible users has been refused this year.”
1.5 million
This is the number of unpaid caregivers in Quebec.
Source: Quebec Statistics Institute
Gendron received another respite placement offer for Mohamed on July 11, over eight weeks after her initial request.
Nathalie Déziel, director of a Montreal caregiver support group, described long-term respite spaces as “rare” and often inadequate. “You want to have a quiet head when you send a loved one in respite,” she said. “But the CHSLDs of respite are often mischievous, dilapidated, it lacks activities… People refuse to send their loved ones there.”
The Personal Cost of Caregiving
Gendron explored other respite options, but private care proved prohibitively expensive. Her own health journey has been challenging. The philosophy teacher at Cégep took a career break in 2014 after being diagnosed with aggressive breast cancer with metastases, from which she surprisingly recovered.
In 2015, her husband Mohamed was diagnosed with Parkinson’s. “Since the start of my cancer, Mohamed has been my caregiver. He was super good. But little by little, the roles were reversed,” she recounted.
Gendron also sought options at Gilles-Carle houses, but the sole Montreal location was closed, with the nearest facility 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
Chloé Ste-Marie, founder of the Gilles-Carle houses, stated that claims of sufficient respite options in Quebec are “completely false.” She recalled a 2018 government commitment to open 20 such houses, but only 11 were established, with four closing due to funding issues.
For 2024-2025, new funding of $30,000 per bed has been allocated to Gilles-Carle houses, according to Santé Québec. An eight-bed house is expected to open in Montreal soon. Santé Québec also mentioned recent investments in day centers and the Baluchon respite service, with more planned.
Ste-Marie emphasized the need to accelerate the development of quality respite houses. “Caregivers can no longer help,” she stated. “It takes more respite houses. And it’s not just quantity. It also takes on quality.”
Many caregivers, Ste-Marie noted, lack the energy to advocate for more respite options. Gendron echoed this sentiment: “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?”
*Mohamed requested his last name be withheld for fear of reprisals.
1. Read the open letter from Diane Gendron
