'A whole new kind of tired': Pandemic leaves many unpaid caregivers without help

Susan Larder's life is not her own. She eats, sleeps and relaxes when her mother, Bea, does.

Larder moved from her home to her mother's home six years ago to provide care as Bea's dementia worsened.

With assistancefrom her partner, Larderhelps her mother get dressed. She makes sure her mother's teeth are clean.

She is an unpaid caregiver, 24 hours a day, every day of the week. She said feels privileged to do it.

But the pandemic is exhausting her.

She and her partner even sleep in shifts to make sure Bea is looked after.

"There's a level of fatigue that I don't even know if I have words to put to it, truly," Larder said. "My mother, who is 92, looks younger and fresher than I do."

Larder is not alone.

No time off

Caregivers across the province are taking on the same responsibilities with almost no time off, according to Denise Peterson-Rafuse, executive director of Caregivers Nova Scotia. The group provides support services for family and friends who provide care,and advocates on their behalf.

"It's humanly impossible to continue to live your life like that," she said. "So now what's happening is, of course, we're seeing caregivers that are dealing with mental health issues, or physical issues, and they can't look after their loved one because they need someone to look after them.

"It's past the breaking point."

Since COVID-19 hit, Larder can barely get anyone to provide her some relief. Bea used to be in adult day programs, have in-facility respite care, go out for family dinnersand have home-care visits.

The pandemic shut all that down.

In an average week before COVID, Larder would be able to get about 32 hours off duty. Since the pandemic started, she might get eight.

"It's the most privileged work in the world, it was never meant to be this hard," said Larder."You can't name another job that anyone does 24 hours a day for nine months without reprieve ... and yet I'd still pick it given the alternative. Isn't that crazy?"

Finding people totake over some of those home-care duties is a problem across Nova Scotia, said Peterson-Rafuse.

Shortage of caregivers

She said safety concerns around COVIDare part of the problem and "the other is because of the lack of the number of caregivers that are available in our province."

She believes that the province needs to invest more in home care and caregiving.

She said the province could loosen restrictions around its caregiver benefit. The benefit gives unpaid caregivers of low-income adults $400 a month. She said the benefit should be increased and the rules to qualify should be expanded.

Some caregivers also receive money from the self-managed care program that allows them to hire their own home-care workers. But Peterson-Rafuse said it's extremely hard to find workers.

Right now, the rules don't allow that money to be used to pay a family member for helping with home care. Peterson-Rafuse said that should change, since it can be easier to recruit a family member to help than anyone else, especially during the pandemic.

Nova Scotia's Department of Health doesn't see it that way.

"Publicly funded programs in home care are expected to supplement care provided by family and community supports, so family are excluded from providing paid care under the current policy," said spokesperson Marla MacInnis in an email.

MacInnis said the department recognizes the challenges some unpaid caregivers may be facing and some exceptions can be made. She said those exceptions are usually approved on a short-term basis.

"We welcome feedback on our programs and would encourage people who need flexibility to work with their care co-ordinators to explore options," she said.

Larder thinks her options are limited, so she soldiers on waiting for the pandemic to end.

"I don't feel in a position to complain, if that makes sense, because I still have my mother," she said. "So many people have lost them.

"So when I look at what other families have had to go through in the pandemic all I can say is, 'I'm tired, I'm very tired. I'm a whole new kind of tired, and yet I'm still incredibly lucky.'"