Quebec is expanding a program that will allow more family caregivers to be paid for caring for loved ones at home — a move advocates say is long overdue. But for one woman from Sorel-Tracy who spent years pushing for the change, the announcement comes too late. Geneviève Coutu spent nearly four years caring full-time for her husband, Louis Lafrenière, after he was diagnosed with early-onset Alzheimer’s disease just three months after they were married in August 2020. Every morning, Coutu would play him a video slideshow set to music, hoping the familiar images would help jog his memory — snapshots of their relationship and the life they shared. “It was financially very stressful. Physically, very stressful, emotionally very stressful,” she said. Lafrenière was diagnosed in November 2020. Coutu said she made the decision early on to keep him at home rather than place him in long-term care, believing a familiar environment was best for him. But that choice came at a cost. “I had to stop working all the time, say to my boss, ‘I’m sorry, I have to find my husband,’” she said. Eventually, she quit her job altogether to care for him full-time. By August 2024, the couple’s savings had run out. “I went, not to beg for money, but I had my little table and my chair in grocery stores with my little box and asking for donations,” Coutu said. “People were flabbergasted. I was shy. I mean, I was embarrassed.” Coutu began sharing her story on TikTok, where it resonated widely. The support she received helped her launch a petition calling on the province to expand financial support for caregivers. This week, Quebec Health Minister Sonia Bélanger announced an expansion of a program aimed at keeping people in their homes longer. Part of the $107 million investment will go toward compensating family caregivers. Advocacy groups cautiously welcomed the move. “It’s a positive move filled with great intentions, obviously,” said Steven Laperrière of disability rights organization RAPLIQ. However, Laperrière said many details remain unclear. About 400,000 Quebecers currently receive health-care support at home, and with recent cuts in the sector, he says there are concerns about how the new funding will be implemented. “There are so many details that are yet to be communicated and explained,” he said. For Coutu, the announcement is bittersweet. Lafrenière has since died. He was 56 years old. “I wish that I would have had that salary,” she said. “The nights that I spent worrying that I would have to place him, not knowing if I would be able to make ends meet.” What she does have now are memories, including videos she shared online, like the moment she surprised her husband by appearing in her wedding dress. “He knew who I was until the end,” she said. “I thought I would be the first one he would forget because we hadn’t been together for so long. And he kept saying, ‘I will always remember you.’ And he did.” Coutu says caring for her husband meant spending every dollar they had, but she has no regrets -- she said it was worth every penny.
