Pandemic has made years of inadequate care worse, says extended care resident's sister

All Agnes Cayer wants to do is hug her brother Irek. And in this pandemic year, she's frustrated that she can't do more than visit from outside the window of his care home.

Irek Wegiel, 48, has amyotrophic lateral sclerosis or ALS. Since 2008, he has been a resident at the George Pearson Centre in Vancouver, an extended care facility built in 1952 for people with complex physical and health conditions. The outdated site is scheduled for redevelopment over the next several years, and the residents will be moved into new supportive housing.

For Cayer and her parents Andrzej and Grazyna Wegiel, relocating their son and brother can't come soon enough. But until that happens, the family is fighting to improve the quality of his care at George Pearson, which Cayer describes as "inadequate."

She believes that COVID-19 pandemic has exacerbated Irek's situation.

"In the first two months of the lockdown, when visits were restricted, my brother got three serious infections that put him in the hospital," she said. "ALS is already such a hard disease and to see your loved one and your family going through this struggle, with anxiety, stress, pressure, especially at this time, it's heartbreaking."

Long before the pandemic, though, the family has repeatedly identified ongoing issues surrounding care. Cayer alleges that her brother is often improperly positioned in his bed and wheelchair, resulting in pain and discomfort and his call-button — his only lifeline — is frequently out of his reach.

And at times, she alleges, inadequate care has resulted in injury.

Centre acknowledges care was not the 'best possible'

In 2015, Irek Wegiel's hand was burned by what may have been a faulty wire in his call-button. And although a subsequent investigation into this incident didn't conclusively come to a decision as to what happened, the centre did acknowledge that he "did not receive the best possible care for this particular incident".

Cayer says their situation isn't unique. For years, families of George Pearson residents have fought for better care for their loved ones. And it's been a long and frustrating battle.

"We had meetings with social workers once a month with all the other families," she said. "It was extremely hard because every time we tried to improve the care, we got resistance. Nothing ever got better, no matter how many times we complained."

Her fight hasn't stopped.

She's taken her concerns to George Pearson management, Vancouver Coastal Health, the Patient Care Quality office, local MLA Michael Lee, and the B.C. Ombudsperson. And she's frustrated by years of what she sees as indifference. 

Feeling she had no other option, Cayer turned to B.C. Minister of Health Adrian Dix. She and two other families of George Pearson residents met virtually with the minister on Aug. 21.

"We told him what my family and other families are facing daily. We cried with desperation, asking for help, for change, " Cayer said. "It's beyond frustrating."

Although Cayer has not heard anything from the Ministry of Health directly, she did receive notice less than a week after the Aug. 21 meeting that the Patient Care Quality Review Board had reopened her file. But so far, nothing has been resolved. 

Accountability 'very difficult' to find, advocate says

The Ministry of Health and Vancouver Coastal Health did not respond to repeated requests for comment on whether any progress has been made since the meeting with the minister.

Christine Gordon understands the families' frustration. She's a policy and program consultant with Disability Alliance B.C. and she has worked closely with the Community and Residents Mentors Association at George Pearson for more than 20 years.

"The problem is that they're caught in a structure that all of us are finding extremely challenging right now," she said.  "It's very difficult to get accountability around all of the measures that have been put in place to protect people."

She added that increased public awareness would help further the families' cause. 

"What advocates hope for is consciousness raising with the general public, and a call for accountability from people who may not have a relative in long-term care, but who care nonetheless," she said. 

The pandemic has now touched George Pearson directly.

On Nov. 18, the families received a notification from Vancouver Coastal Health that the centre has been placed on enhanced surveillance, following confirmed cases of COVID-19 there. No residents are affected, and no outbreak has been declared. And so far, aside from a directive on the use of goggles or visors, as well as masks as an additional precaution, there has been no further news.

Irek's parents are still able to visit — as they have for several months now — as essential visitors. Agnes, an active paramedic, continues to visit from outside, at the window or via Skype. 

It's a new source of anxiety for Cayer and her parents, who worry about Irek Wegiel's precarious health.  

"Change needs to be done at George Pearson and needs to be done soon, for my mom, my brother and my dad — for families like mine," she said. 

"I want my brother to be safe." 

To hear the CBC's Cathy Browne speak more about this story on The Early Edition, tap the audio link below: