'She should be coming home with me': N.L. caregivers face tough choices due to home support woes

The new CBC seriesConcerning Caretakesa closer look at home and respite care in Newfoundland and Labrador whichhas Canada's oldest population. It focuses on a shortage of workers, the emotional and financial toll of loved ones providing care to family members, and issues that homecare workers themselves face.

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When Kelly Piercey's parents, Hayward and Sylvia Smith, got sick and needed help to stay in their house in Norman's Cove, she tried everything she could to make that happen.

Sitting at thedining tablein her parents' house on a warm Julyday, going through photos and keepsakes, Piercey reflects on the rocky journeybehind them onefilled with love and dedication, but also strugglesand, at times, desperation.

"I was drainedbut I was in this survivor mode,"said Piercey.

"You focus on, 'I want to keep my parents here. I want them in their house.' And that's not the way life works."

It began in August2020,when Piercey tried to get palliative care for herfather, Hayward, who was losing his battle with skin cancer.

"That's when it all started. I had no idea that there was such a shortage of home support workers," said Piercey.

The workerthey got supported the family until Hayward had to be admitted to the Miller Centre in St. John's, where he died in October 2020.

Same cycle, different parent

For Piercey, the search for support startedover this time for her mother, Sylvia.

"Mom's dementia really got out of control then because she lost her husband of 55 years," said Piercey."The shock of Dad's passing really put her in a spin."

Many things Sylvia had beenable to do on her own, like getting dressed, doing her hair or controlling the TV, suddenly became unmanageable.

"Mom was a very big knitter. All of a sudden she had two needles in her hand and she just couldn't put it together," said Piercey.

All typical signs ofdementia, which, according to the provincial Alzheimer Society, is an umbrella termfor a set of symptoms, including memory loss, issues with cognition,language and daily tasks,or mood and personality changes.

Provincially, about 10,100 people live with dementia. By 2030, that number is expected to rise by more than 40 per cent to 14,500.

While Piercey immediately received home support hours for her mother, she saidthe home support agency she had hired struggled to offer continuous coverage of the needed shifts pointing to people choosing unemployment benefits over work as well as to a shrinking working-age population in small rural communities.

"I finally got on the phone and said, 'You don't have anybody, do you?' And they didn't. Sothat's when I really just became my own advocate," said Piercey.

"I got the phone book out in the community and I started phoning people:'I need a worker for Mom. I need home support. Are you interested?'"

WhenPierceyfinallyfounda worker,shesoonneeded a secondanda third which still didn'tmatch Sylvia'scare needs.

SoPierceycontinued to step up travellingback and forth between her mother's and her own homein Brigus Junction, about 45 kilometres away.

"I said to my father before he died, 'I will do whatever I can and keep her home as long as I can'. Because that's what you want for your parents," she said.

The commitment kept Piercey, who had been between jobs when she started caring for her mother, from getting full-time employment. Butshe was told by Eastern Health that she wasn't eligible for compensation as caregiver, either.

"What theytold me was, because I didn't quit a job to stay home and take care of [my mother], because I was already taking care of her, there was nothing they could do for me," she said.

"Had I received some kind of supplement, it would have definitely helped the situation. It wouldn't have given me another worker because I still would have needed two more."

'Who can pay salaries for two people?'

While Eastern Health didn't comment on Piercey's specific situation, a spokesperson provided CBC News with a link to a website, which outlines that there are several requirements for someone to be eligible as paid family caregiver under the Provincial Home Support Program.

Generally, any family member except for spouses or common-law partners can be a paid caregiver under the home support program. Piercey's mother, however, was enrolled in the Community SupportProgram.

While the health authority supplements partof the home support cost, funding isbasedon a person's income. For Piercey and her two brothers, who live outside the province, that meant they had to pay a large portion themselves.

"For me to keep her home, I would have needed another two workers, which then we would have had to pay out of our own pocket. I mean, who can pay salaries for two people?" said Piercey.

Eventually, the situation wasn't longer feasible for the family. Sylvia's name was put on thewait list for a long-term care bed.

As of Sept. 22, there were 414 people on such a list, according to the provincial Health Department 188 in the Eastern Health region, 113 in Central Health, 99 in Western Health and 14 in Labrador-Grenfell Health.

Reducing thewait as well as finding solutions to the support worker shortage are two of the desperately needed improvements to provincial home and long-term care, saidPiercey.

"[Eastern Health is] promoting keeping people in their houses but they make it very difficult to do so," she said.

Then, after seven months the call. A bed at long-term care facility Pleasant View Towers in St. John's was available.

For Piercey, it was arelief and still,a decision that came with guilt.

"Until you sit out in that parking lot and you realize that, I'm not taking her home today, I'm leaving her here. It's not a good feeling," said Piercey.

"Months after she was at the home, every time I go visit her, I'd cry the whole way home. I'd pull over on the Trans-Canadaand I would just, 'I can't be doing this. That's my mother. She should be coming home with me.'"

Eight months later, at her parents' dining table, Pierceychooses to also remember the positives.

"Before he passed, [Dad] said, 'I had a good life', he said. 'My kids are happy. My wife was good to me,'" said Piercey.

"That meant a lot to hear that."

Over the next few weeks,Concerning Carewill tell the stories of the people introduced here, along with others, on various platforms including onHere and Now, the CBC N.L. website and on the radio.

If you have a story to share, contact us atcare-struggles@cbc.ca.

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