Caregivers of elderly face stress, tears with scant support

The case of a Montreal man sentenced to two years in jail for killing his wife, who had Alzheimer's disease, has laid bare the need for better supports for caregivers, many of whom struggle to cope and often don't know where to turn, advocates say.

"They feel alone. They feel depressed. They feel distressed," said Mlanie Perroux, co-ordinator of the Regroupement des aidants naturels du Qubec, an organization that works with caregivers.

Michel Cadotte, 58, was found guilty of manslaughter in the death of Jocelyne Lizotte, 60, at a Montreal long-term care facility in 2017. During the trial, Cadotte testified he smothered Lizotte with a pillow because he could no longer stand to see her suffer.

The court heard that Cadotte had asked aboutabout medical assistance in dying for hiswife in 2014. He was told Lizotte would not qualifybecause her death was not imminent, and she was not coherent enough to consent.

In delivering her sentence Tuesday, Quebec Superior Court Justice Hlne Di Salvo characterized Cadotte as "a man in love who was exhausted and couldn't stand to see his wife suffering any longer."

Di Salvo acknowledged the case had given rise to heated debate within Quebec society. She said that, as citizens, "we can only hope that the cries of alarm about the difficulties of caregivers as well as the problems of the growing number of people with Alzheimer's disease will have been heard."

Perroux testified during sentencing arguments about the pressures on caregivers, explaining how the lack of support took a toll. Some caregivers put in more than 30 hours of work each week "without being supported by the health-care system and without being asked how they feel, and how they deal with it," she said in an interview.

Burnout a real risk

Claire Webster, whose own mother died after a lengthy struggle with Alzheimer's, hopes the discussion around the Cadotte trial will lead to changes.

When Webster's mother was diagnosed, she recalls leaving the doctor's office with little information about the disease, or what to expect.

"I burst into tears. I didn't even know what to do, where to go," said Webster, who now works as a Montreal-based consultant with families struggling to care for an ailing loved one.

The next 12 years were filled with stress, sadness and anger, as she attempted to navigate the health-care system, care for her mother and raise her young family.

"If you're not prepared, you know, you're going to blink and all of a sudden you're going to be completely overwhelmed by the changes in your loved one and not knowing how to respond to what's going on," she said.

Webster said she sees many caregivers have thoughts of suicide. She reached that low too.

The key, Webster said, is to know you can't do it alone and that you don't have to.

"If families are properly given the right information, the proper education, taught from the very beginning: This is a disease. This is how it's going to progress This would help prevent caregiver burnout."

She would like doctors to give family members of those diagnosed with dementia or Alzheimer's a prescription for care, outlining what to expect in the years to come, and where they can turn to for information, and support.

Province prepares new policy

A recenteditorial in the Canadian Medical Association Journal called on federal and provincial governments to provide more financial support to informal caregivers.

More than one in four Canadians aged 15 and olderprovidecare for family members andfriends with chronic illnesses or disabilities, according to Statistics Canada.

Perroux said she's heartened the Quebec government is working on a new policy to support caregivers. Last year, it held a public forum to get input from those affected.

"It's a start," she said.

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Marguerite Blais, the province's seniors' minister, said Wednesday that the policy will include ensuring there is a medical file for the caregiver as well as the person who is sick.

"Every caregiver that is desperate needs to have at least information, [training] and respite. It's going to be my goal for the time I will be in politics," Blais said at the National Assembly.

Premier Franois Legault said the government needs to do more for caregivers in Quebec.

"I know it's a drama, and we'll take action," Legault said.

A first draft of the policy is expected in the fall, with a final version by the end of the year.