Eddie Calisto-Tavares took matters into her own hands so she could hold her father’s at the end of his life.
As a horrifying COVID-19 outbreak raged inside Maples Long Term Care Home last fall, she donned full-body personal protective equipment and became his designated caregiver.
She fought to get permission from the facility’s owners, but in truth it wasn’t like anyone at the catastrophically understaffed home was going to stop her.
Manuel dos Santos de Sousa Calisto died on Nov. 11 at the age of 88. He was one of 56 residents who died from the virus between Oct. 20 and Jan. 12 at the 200-bed facility. In the outbreak’s ghastly tally, 157 residents and 74 staff members were infected.
Calisto-Tavares is grateful that she was able hold and touch her father during his last days, but knew so many others were facing equally painful battles just a few paces away — entirely on their own.
"I wake up still and hear voices... asking for water and asking for help," she said.
"I know with my dad, I was there. That doesn’t haunt me; what haunts me is all the other people that were crying for help, all I could do was say help is coming — but I knew it wasn’t coming."
In the aftermath, the provincial government tapped Lynn Stevenson, a former associate deputy minister of health in British Columbia, to do an independent review of what happened at the for-profit care home operated by Ontario-based Revera, Inc.
Stevenson authored a 74-page report made public in February detailing the response to the outbreak at Maples by the operator, Revera Inc., the WRHA and the provincial government, following an external review which included interviews with care home staff, family and regional executives as well as reviews of planning and clinical documents.
She provided 17 recommendations to Revera, the WRHA, the health incident command structure and Manitoba Health, but that’s as far as it went.
"No one lost their jobs. No one got fired," Calisto-Tavares said last month.
"I will hold this government accountable. There was a breach of trust in so many levels, and I am going to hold Revera and the Maples (facility) accountable."
Enter the Families Voices Task Force.
"We are grieving, we are determined that our loved ones and their memories are not in vain. That what we went through — and we paid the ultimate price — was not in vain," Calisto-Tavares said.
The volunteer group has several demands for the province: ensure 70 per cent of care-home staff are full-time employees, train front-line staff to support patients with Alzheimer’s and dementia, increase direct, hands-on care from 3.6 to 4.1 hours.
The task force will also work to ensure Stevenson’s recommendations are implemented.
And they want the province to create a senior’s advocate, such as the one in B.C., whose role it is to monitor and analyze seniors’ services in that province and make recommendations to government and service providers to address systemic issues.
Calisto-Tavares said she is looking for care-home residents’ associations and residents’ families to join her.
"I want to make sure that we get this advocate in place, because we all need a place to go to and know that person, their mandate, is to do what’s best for seniors," she said.
An increase in direct-care staff hours — to which the government has so far refused to commit — could have helped Lisa Prost, whose father Murray Balagus, died of pneumonia at the Maples facility in January.
In the year prior to the COVID-19 outbreak, Prost said her father — a 91-year old Manitoba Hockey hall-of-famer — had gone from the "life of the party" at the home to a state of neglect that was so dire, he was no longer speaking English and had lost significant weight due to malnourishment.
During the pandemic, Prost visited her father regularly through the window or separated by two metres at a table inside. She saw other residents neglected, left in their rooms to watch TV while overworked staff scrambled.
"It was horrible. Watching my father like this was just breaking my heart," Prost said. "I still have nightmares every night about what I was witnessing, what I saw."
In January, Prost visited her father after dinner and found him facing a wall in his room choking and gurgling behind his mask.
He had trouble eating and drinking and had to be fed slowly. Prost said she was told he refused to eat dinner in the meal hall that night and been taken back to his room with his mask on.
He was rushed to hospital, and Prost was told he had aspirated and developed pneumonia. He died hours later.
"We don’t have enough people," she remembered being told by the care-home’s executive director about the lapses in care she witnessed. "We just don’t have enough people."
Prost said she’s advocating for further investigation into conditions at the home, and for executive members to be held accountable — and fired.
"They can’t sweep these problems that are happening under the table," she said. "My dad would want this fixed."
She wants to see documentation of what happened in the home, how many staff were around, a comprehensive review of Revera’s care practices compared with non-profit facilities in the province and a clear plan from the province.
"I will not be able to have closure with my father’s death until I find out what they’re going to do," she said. "That’s what my dad would want."
Larry Baillie’s father Glen had lived at Maples since February 2018. He died Nov. 11 at the age of 88.
"I tried so hard so my dad wouldn’t be a statistic," Baillie said. "At the end of the day, they didn’t listen to a word I said."
Baillie has maintained the quality of his father’s care deteriorated long before the COVID-19 outbreak. There were communication issues between Revera and family members; no one called him when his father tested positive for the virus in late October.
Baillie was consulted during Stevenson’s review. He said it fell short, sugar-coating longstanding problems at the care home, and robbed families of someone to blame, he said.
"Nothing has been learned. The government is still doing what the government is doing, they have not learned," Baillie said. "My dad died in vain."
Adria Penner counts her family among the lucky ones with relatives living at the Maples facility. Her mother Miranda, who has lived there for several years, contracted and recovered from COVID-19.
They were affected, nonetheless.
"It took a toll on her physically, and it took a toll on us as family members," Penner said. "We were scared that we were going to lose her because there were so many other residents who were dying. There was a heightened state of worry."
Penner remembers the breakdown in communication between Maples and residents’ families through the fall as she sat through conference calls and family updates, trying to advocate on behalf of her mother and the other residents.
Stevenson’s review, she said, missed an important mark.
"When we read the review looking at areas of deficiencies as to why there was such a toll on residents and staff and a shortage of proper care for our loved ones, there were lots of things identified. However there doesn’t seem to be a level of accountability as to who is responsible," said Penner.
"What seems to be missing the most is the urgency to act."
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Despite her tireless efforts, the fight has taken a toll on Calisto-Tavares, too.
She sees a clinical social worker to deal with the death of her dad and the anguish and pain she observed while supporting him in the home. She meets with her brothers, trying to sneak masked hugs and hold their hands to share in their collective grief.
It’s overwhelming, she said, but "right now I have nothing to lose."
Julia-Simone Rutgers Reporter
Julia-Simone Rutgers is a general-assignment reporter.
The outbreak at Maples Long Term Care Home quickly became one of the deadliest in the province — along with the outbreaks at Revera-owned Parkview Place and Charleswood Long Term Care Home — garnering significant public attention the weekend of Nov. 6 after a paramedic took to Reddit to blow the whistle on a tragic 48 hours in the home.
That weekend, 18 calls were made to 911 and the public looked on in horror as eight residents were taken from the care home’s doors wrapped in body bags.
Some had died as a result of COVID-19, Revera eventually told media, others of dehydration and other causes. The home was severely understaffed that night, Revera revealed after pressure from media, acknowledging just seven staff were working the night shift.
The response was swift: a preliminary Winnipeg Police Service investigation began that same weekend, an external review of the care home’s operations was commissioned by the province on Sunday, Nov. 8.
Ultimately the WPS opted not to continue with a full investigation, but the external review plodded on.
In February former associate deputy minister in the B.C. Ministry of Health, Lynn Stevenson presented a 74-page report — developed in consultation with families, the Winnipeg Regional Health Authority, the province and the care home — with 17 recommendations to address seniors’ care in the province.
The recommendations range from long-term goals that included funding a provincial health-care system response for pandemic outbreaks to short-term initiatives such as proper staffing and daily physician rounds in outbreak situations.
Health Minister Heather Stefanson has promised to implement all 17 recommendations. The first progress report from the provincial implementation team was released on March 5.