When Michel Cadotte’s wife, Jocelyne Lizotte, began suffering from early-onset Alzheimer’s in 2006, he adjusted his life as best he could to become her full-time caregiver.Cadotte wanted to keep Lizotte at home for as long as possible. She had told him she never wanted to be hospitalized — she would rather die, she had made clear — and he had promised her he would always be the one to take care of her, even after she stopped recognizing him.At home, in the early mornings, he would dress her for the day, do her makeup, fix her hair and prepare her meals. Before leaving, he would lock the doors to make sure she wouldn’t wander from the house, unplug any dangerous appliances and hide all knives or toxic products.“To me, she always remained my wife,” Cadotte, 57, once told the court. “Even if some said she was just a shell (of herself).”But by 2013, he was out of options. Exhausted and stretched thin mentally and financially, he decided to have Lizotte hospitalized. Over the next four years, court testimony and documents show, he would continue to be worn down and burned out, increasingly frustrated by the care she was receiving.In February 2017, a year after a request for medical aid in dying he filed on her behalf was refused, Cadotte, as a judge once described, “reached his breaking point”: while visiting Lizotte at her long-term care facility, he pressed a pillow against her face until she stopped breathing.“I snapped,” he then posted to Facebook. “No one asked me how I was doing, but now you know.”On Saturday, a jury found Cadotte guilty of manslaughter after a month-long trial. Sentencing hearings will be held at a later date.His lawyers have described the case as the personal and intimate story of a man who was broken down by a decade of helplessly witnessing his wife deteriorate. A judge described him as an exhausted caregiver, and the killing as an “expression of physical, psychological and moral exhaustion.”In that regard, Cadotte’s case has resonated with a group that followed it closely: the thousands of unpaid caregivers in Quebec who find themselves struggling to balance their own lives with caring for a loved one.Though they don’t condone his actions, experts say the details of his story demonstrate how the entire support system in place for caregivers in Quebec, from health-care services to labour laws, is not only inadequate but severely lacking — at a time when an aging population is threatening to make it more important than ever.
Jocelyne Lizotte, right, and her sister Johanne Lizotte are seen in this undated handout photo provided by Quebec Superior Court.
THE CANADIAN PRESS
Caregivers forgotten by the systemIn Quebec, it’s estimated more than 1.6 million people — one-quarter of the population over the age of 15 — is taking care of a loved one in some fashion.The government acknowledges caregivers provide 85 per cent of the total help to seniors in the province, and studies suggest Quebec would need to spend between $4 and $10 billion yearly to replace the number of unpaid hours they provide.Yet still, they’re often overlooked by the very system they help prop up.For the last decade, the Regroupement des aidants naturels du Québec, which represents more than 21,000 caregivers across the province, has been calling for a new protocol that would have health centres open a file on the person identified as the main caregiver for patients battling chronic illnesses.The simple step, they argue, could prevent thousands of caregivers from reaching their breaking points by ensuring they know the services available to them and receive the early support they need.Without that support, said the RANQ’s Mélanie Perroux, it’s not only their own health they’re putting at risk, but also the health and security of the person they’re caring for.In Cadotte’s case, he was first diagnosed with major depression around the same time he finally had Lizotte hospitalized. The time he dedicated to Lizotte had invaded “every sphere of his life,” health records say. He had grown increasingly socially isolated and stressed as a result.As early as 2013, he told a social worker he was not only suicidal but he was also having homicidal thoughts — he couldn’t take seeing Lizotte in the state she was in anymore.Though she stressed there’s very little research on the topic, Perroux said it’s not uncommon for caregivers to get to that point.A 2016 study, conducted in Australia, concluded that homicidal thoughts are a “real and significant phenomenon” among caregivers looking after someone with dementia.Out of 21 caregivers who participated, the study found two had contemplated killing their loved one and four had hoped for their death in some way. Those who hadn’t at least understood how others had reached that point. Only one had spoken about it with someone.“It’s so taboo to even talk about,” Perroux said, “that it becomes very complicated for people to get the help they need.”The lack of flexibility in labour lawsWhen Cadotte first started taking care of Lizotte, he switched to night shifts at his printing plant job in order to be able to stay home with her during the day.When it became clear that plan wasn’t going to work — Lizotte began requiring too much assistance throughout the day to catch up on any sleep — he returned to working regular hours.But he soon found himself having to frequently leave work early for emergencies, or take an hour or two midday for meetings with doctors. In the fall of 2013, his employer had enough: the situation wasn’t sustainable, and Cadotte was fired.Without a steady income, the couple was forced to downsize, a move Cadotte insists was catastrophic for Lizotte. Already struggling with her bearings, the upheaval sent her in a downward spiral.Per Quebec’s statistics institute, the Institut de la statistique du Québec, nearly 60 per cent of caregivers are employed. Ten per cent of caregivers provide more than 20 hours of care weekly on top of their jobs.
The decision to have a loved one hospitalized after caring for them at home is one of the hardest a caregiver needs to make, experts say.
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Caregivers, Perroux said, face a two-pronged “constant impoverishment”: a rise in costs (updating the household, respite care fees) and a loss in income (unpaid leaves, reduced hours or outright job loss).The RANQ has long argued there’s a clear need for Quebec’s labour standards act to provide them with more protection and flexibility.The law, updated in June 2018, allows for two paid days a year for caregiver responsibilities and an additional eight unpaid days. The days can be divided into hours if an employer agrees to it, but caregivers still quickly burn through them.Perroux said awareness in the workplace is also crucial: only 30 per cent of employers know who is a caregiver among their employees.“Thirty-four per cent of caregivers never go on vacation, because they use those days to care for their loved one or catch up on everything else they’ve fallen behind on,” she said. “It’s all exhausting.”Better care needed, at home and in institutionsThe decision to have a loved one hospitalized after caring for them at home is one of the hardest a caregiver needs to make, experts say.After placing Lizotte at the Royal Victoria Hospital in March 2013, Cadotte quickly grew frustrated with what he perceived as sub-standard care at the hospital.He had always bathed Lizotte at home. Now he watched staff struggle to shower her and how aggressive she would become when they tried. He felt she was too often isolated in her room and too often strapped down. As her mandatary, he felt he should have been better informed of the decisions being made about her care.His complaints escalated to the point of asking Quebec’s ombudsman, in November 2013, to look into how Lizotte was being treated.The ombudsman made three recommendations to the hospital based on the complaint, including that it respect its own protocol on using restraint measures with patients and ensure it receives consent from their representatives before using the measures.By the time Lizotte was transferred to Centre d’hébergement Émilie-Gamelin in 2014, she could no longer walk, talk, eat or remember anyone. She was strapped to a chair or bed for the majority of each day.In 2015, Cadotte took courses on how to be an orderly so he could take better care of Lizotte during visits. He says it gave him a better understanding of the difficult workload hospital staff carry, but he still felt the care she was receiving was lacking.On Feb. 20, 2017, Cadotte walked into the nursing room and found Lizotte in her geriatric chair, her neck twisted and head crumpled on her shoulder. A specialized headrest she was supposed to have wasn’t there, something he had complained about a hundred times before.He brought her to her room to spoon-feed her lunch. When he moved her to her bed, he noticed the belt that usually strapped her down — to prevent her from writhing too much and worsening her bedsores — was also missing.He tried to place her in the bed, but her head and pillow kept sliding. He tried to adjust both but couldn’t.“This doesn’t make sense anymore,” he remembers thinking in the moments before suffocating her. “You can’t suffer like this.”Though an extreme example, the frustration Cadotte felt in the care Lizotte was receiving isn’t unique.A 2015 report by the province’s ombudsman detailed how years of government cutbacks have led to a “growing, crying need” to improve the province’s health care system in the face of an aging population.The report described a system plagued by reduced services and home support, the effects of which all trickle down to caregivers.In his decision to grant Cadotte bail in the summer of 2017, a judge said the conversation around his case had led to a “certain acknowledgement” of the “difficult and heartbreaking” plight of caregivers in the province.If nothing else, Perroux said, she hopes the widespread attention Cadotte’s case has received can increase awareness.She also spoke with cautious optimism. François Legault’s Coalition Avenir Québec government, elected last year, has promised it is working on the first-ever “national caregiver policy” in the province’s history.In a 31-page memoir prepared in 2018, the RANQ stressed the “urgent need to act” and called for the policy to provide, among other measures, more support, care services, employment incentives and financial compensation.“Without caregivers,” the document concluded, “offering quality and accessible care to Quebec’s population is a utopian task.”The government’s policy is expected to be presented next firstname.lastname@example.orgTwitter.com/jessefeithRelated