Sister, home support worker fight to keep Bishop's Falls woman out of long-term care

CBC's seriesConcerning Caretakesa closer look at home and respite care in Newfoundland and Labrador, which hasCanada'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 home-care workers themselves face.

On a cold Friday morning, around 11 a.m., Denise Champion is sittingat the dining table in her Bishop's Falls home, when her home support worker,Mirjam Lahdeaho, comesout of the kitchen.

"We gotta put your bib on now," Lahdeahosaid.

Time for breakfast.

For the past seven years, Lahdeaho has been with58-year-old Champion supporting Champion's primary caregiver, her mother, Betty.

Betty died suddenly due to COVID-19 in July and just like that, Champion was left without any plans for her care.

Champion has an intellectual disability, cerebral palsy, seizures,sleep apnea and diabetes. She is also legally blind.

Yet, thanks to Lahdeaho,Champion still lives in herhome three months later. Not only that she wants to take Champion into her own home, acting as an alternate family care provider, which is when someone takes care of an unrelated adult with an intellectual disability in their own home, providing a family environment.

"It's very meaningful to me to be able to help somebody out," said Lahdeaho. "Makes me feel like I'm making a difference in somebody's life."

A Health Department manual for this type of care states, "When an adult with an intellectual disability can no longer reside with the natural family or with the family that he/she currently lives with, placement in the alternate family care program is the first and preferred option."

"I feel like I'm the one that knows her best after Betty. And I can take care of her the best after her mother," said Lahdeaho, her voice breaking.

"Sheknew that I cared about Denise and loved her just like she was my sister. I just feel so strongly about it."

Family on board, criticizes Central Health

About 400 kilometres awayin St. John's, Champion's sister, Lisa Marsh, and Marsh's husband, Craig, were onboard right away when Lahdeaho mentioned the idea. But they soon realizedCentral Healthisn't willing to pay Lahdeaho what the family thinks she deserves.

"Virtually, they want her to become Mom, only they don't want to pay for it," said Lisa Marsh.

"Mirjam knows Denise's needs, and I want it to stay that way. SoI've been trying to reason with them and get them to understand where we're coming from."

Central Health's offer, she said, would entail support froma second worker but substantially less than Lahdeaho's current salary.

Every day, Champion receives 16 hours of home care, which Lahdeaho shares with a second home support worker. For a night shift, Lahdeaho receives $34.60 in total.

In addition, Champion would receive money for her own expenses, such as food or medication. Lahdeahowould earn $2,500 monthly, tax-free, or about $30,000 yearly.

"It's just not enough for the amount of responsibility," said Lahdeaho. "I'm not in it for the money. That's not at all what I'm after. I just need to be able to live, be able to pay my bills without having to worry."

Even if a second worker covered40 hours a week, she said, Champion's care in the remaining 128 hours a week would makeworking a job too much.

"You'd be so tired and stressed out, it wouldn't make for a very good situation," said Lahdeaho.

The Marshes and Lahdeaho rejected Central Health's offer. Ever since, saidLisa Marsh, she has heard very little from the regional health authority.

'I was livid'

Central Health told CBC News it doesn't comment on individual cases but alsodidn't provide a statement on the funding of alternate family care homes as CBC News requested, several days before publication.

After Marshcontacted Children, Seniors and Social Develeopment Minister John Abbott and Health Minister Tom Osborne, she said she was told her request was passed on to the premier's office. According to Marsh, astaff membertold her on Nov. 9 that if Lahdeahodeclined theoffer, Champion would move into a personal-care home.

"I was livid," said Lisa Marsh."There's absolutely no way that this person making the decisions about my sister even knows who my sister is."

After contacting different personal-care homes, said, Marsh, her suspicions wereconfirmed they aren't suitable for Champion's complex needs.

While long-term care facilities have professional health and nursing services available, those servicesdon't exist in personal-care homes, whichhelp residents with personal care anddaily living activities.

Champion's care needs are extensive she needs someone to shower her andhelp her use the bathroom.She also needs assistance with walking.While she can eat on her own, she can't prepare food or even pour herself a drink.

Someone also needs to be with her at night multipleseizures put her at risk of falling out of bed. Since the seizures regularly cause her to wetthe bed, laundry is a daily task in her house.

Apart from these tasks, said Lahdeaho, Champion needs someone to spend time with her.

"She loves it for somebody to sit at the table with her. She loves to colour. She loves to read books," said Lahdeaho.

"She really wants to live a life. She wants to go out. She'll sit there and she'll say, 'Want to go out, want to go out.'She loves going out for drives in the car."

Long-term care is not an ideal solution, said Marsh, astheir social worker recommended a family setting as well. She is also worried byrecent reports ofprivacy breaches and the prospect of Champion ending upin an acute-care bed, joining hundreds of others on wait-lists.

The situation has been taking a toll on everyone involved,said Craig Marsh.

"The wear and tear on my wife and our family, and certainly on Mirjam, has been unbelievable. She has been a godsend to do what she's done for so long," said CraigMarsh."But you can only do that for so long and not know where you're going to go."

'I'm not going to walk away like that'

All they want, Lisa adds, is a 10-minute conversation with officials.

"If she has to go to a long-term care home, then they need to sit down with us and they need to tell me how that works," said Marsh.

"I'm going to fight until someone talks to me and explains to me why I have to take that risk with my sister's life."

ForLahdeaho, long-term care is unthinkable.

"She's still young enough to live a life, to go out to enjoy life," said Lahdeaho.

"She understands a lot more than what we can even understand. SoI'm not going to walk away like that."

Concerning Caretells the stories of the people introduced here, along with others, on various platforms including onHere & Now,CBC N.L.'s website and on the radio.

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

Read more from CBC Newfoundland and Labrador