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Caring for an aging mother with severe dementia is both a physically and emotionally daunting task in the most ordinary of circumstances.
Add a global pandemic, and the task also becomes an extremely lonely one.
This is what Aimee Roberto discovered when she found herself caring for her 82-year-old mother alone in March when the COVID-19 pandemic emerged. Within weeks, Roberto’s mother lost her personal support worker, who usually cared for her a few hours each day. She also lost her private support worker, who had to juggle another job at a long-term-care facility.
Roberto suddenly became the primary caregiver for her mother, while also parenting two teenagers and working a full-time job in human resources.
“It was very strenuous,” Roberto said. “At a certain point I fell into a little bit of a depression because I felt like I was being pulled in so many different directions.”
“I felt like I was the only one going through all of this.”
A new report out of the Ontario Caregivers Organization (OCO) reveals Roberto is not alone in struggling with an onslaught of caregiving duties with minimal support amidst the pandemic. More than half of caregivers surveyed in Ontario, or 52 per cent, said they’ve found it stressful to manage their own emotions as they cared for their loved ones.
The OCO report, released Wednesday, also revealed the pandemic has left the onus on caregivers to provide emotional support for those they’re caring for, which has led to the neglect of their own mental health. Physical distancing measures have meant caregivers aren’t able to receive social and emotional support elsewhere, and half of caregivers said they are in dire need of a break.
The results were obtained by surveying 825 caregivers in Ontario, aged 16 or older from Sept. 10 to 25. There are more than 3.3 million caregivers across the province — defined as people who provide support to loved ones without pay for many reasons, including frailty, palliative care, long-term illness, physical or mental disability or age-related conditions.
Amy Coupal, CEO of the Ontario Caregiver Organization, said COVID-19 has created unprecedented stress for caregivers across the province, as it has forced them to navigate a fuller plate of responsibilities with fewer supports.
“Caregivers are concerned about infection control, keeping themselves safe and the person they’re caring for safe,” Coupal said. “They’re also adapting to availability of programs and services, and how that may have evolved.”
Nearly half of caregivers surveyed, or 48 per cent, were also either born outside of Canada, or their parents were born outside of Canada, forcing them to navigate caregiving resources in the country for the first time. This includes Roberto, who lives in Ajax but whose mother is originally from the Philippines.
Like many, the strain of Roberto’s caregiving duties was felt early on in the pandemic. Her mornings included a tricky balance between preparing breakfast for her mother and checking her mother’s blood pressure and sugar, all before logging on to her work from home.
Roberto did this through ongoing self-doubt over whether she was qualified to care for her mother full-time.
“By April I was completely lost,” she said.
This prompted her to search for caregiver support services online, where she found a peer support group through the OCO. It was the first time she was able to connect with others in a similar situation and validate the struggles she had been feeling, she said.
But Roberto was still forced to take a three-month leave from work to care for her mother, as her job in human resources for a condo development company was deemed an essential service. Upon returning to work, Roberto said she wasn’t able to find a personal support worker for her mother through the province due to a shortage.
She only recently was able to afford a private live-in caregiver for her mother — the cost of which can average around $800 a week, far exceeding the benefits available for seniors like Roberto’s mother.
Financial barriers have added to the strain of Ontario caregivers over the course of the pandemic, according to the OCO’s report. Around 40 per cent feel more financial hardship, compared to 32 per cent who reported the same in 2019. A majority of caregivers — 80 per cent — are fully responsible for covering the expenses of the person for whom they are caring.
Coupal said the goal of the report — the third annual report of its kind — is to shine a spotlight on these challenges, especially as it is anticipated the number of caregivers across the province will grow as a result of the pandemic, and also due to Canada’s aging population.
As more Canadians are expected to step into the role of caregivers in the near future, Coupal said the hope is to make them aware of available resources. This includes access to a 24/7 helpline offered by the OCO, weekly support groups and mentorship programs.
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For Roberto, the journey of caring for her mother through the pandemic has been an emotional one. Seeing her mother struggle through isolation, she said, has been just as emotionally straining as the scramble to juggle her caregiving responsibilities.
She is left with the realization that more personal support workers are desperately needed to help meet the needs of aging Canadians. Without that, Roberto said caregivers could benefit from more financial support to care for their loved ones.
“I don’t think people realize (these struggles) until they’re already in a crisis situation,” Roberto said. People should be prepared, she added, because they could one day find themselves in her shoes.
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