'Terror awakened': Ontario long-term care residents describe pandemic's first wave

"Devastating, emotional."

"Terror awakened."

"Lonely, depressed."

"How long?"

"Muzzled and trapped."

"Broken-spirited and boredom."

Those are the words Ontario long-term care residents used to describe their lives over the past seven months, as the COVID-19 pandemic prompted the lockdown of their homes and killed more than 1,800 residents.

Ontario's Long-Term Care COVID-19 Commission interviewed the Ontario Association of Residents' Councils this week. Its board is made up of long-term care residents and they gave voice to people who haven't often been heard during the pandemic so far. Their remarks began with each giving a two-word description of what they experienced during the first wave.

"I have been in long-term care about ten years and never in my life have I experienced anything in my entire life that has terrified me more than this COVID-19 virus," said Barry Hickling, who chose the words, "terror awakened."

"The fear is a torment," he continued. "It elevates blood pressure. It elevates anxiety. The fear that we experience, it is all — all of it is exploding in the last six months. It hurts. We are isolated, alone, without family or friends to visit with us. I don't want to go through this ever in my life again. And I pray and hope that, by gosh, if there is another wave, let's deal with it adequately, appropriately, efficiently, and directly."

Virginia Parraga — who chose "muzzled and trapped" — spoke poetically.

"Long-term care homes have come to depict a prison for many residents at this time," she said. "Due to COVID-19, we no longer view these institutions as a safe haven to fall into as if on a cloud."

"Now when I see these dog cages on TV for stray animals, I see myself as one of these neglected, filthy, and starving for love and affection little critters," she said. "I now weep for our human race and mankind. Nobody cares, echoes my plight daily. Are we not in this boat called 'pandemic' all together?" she continued.

"I thank you for allowing me the opportunity to voice my feelings today. Up until now, I have tasted only the anger that comes from feeling and seeing my face muzzled and my hands and feet chained," she said, adding, "This has been the most fun I have had since March 3rd, 2020, seven months ago."

One resident, Devora Greenspon, was in a home with an outbreak. It was cohorted — she did not contract COVID-19 and was moved to a part of the home where there were no cases. She was moved to a room where another woman who was moved to the COVID-19 ward lived, whose belongings were covered in black trash bags. She had few of her own possessions.

"What troubled me the most was the lack of human contact," she said in written remarks that were read to the commissioners. "Each day I saw a PSW a couple of times, fully gowned, masked, gloved. No facial expression was to be seen. I was not permitted to leave that room for three and a half months. It was like being in jail."

Greenspon said seeing family on Zoom was a "mixed blessing."

"As much as I love my family and longed to see them, it felt like torture to see them but not be able to touch them, give or receive a hug, hold hands, nothing. It is very unnatural and very jarring," she said.

"Being alone in one room every day almost made me crazy," she said. "There were many days when I didn't want to get out of bed. I was very sad, very lonely, and afraid. When there is no information shared, your mind can take you to some scary places."

The residents said their fear and depression began when the province prohibited visitors in March in an effort to put an "iron ring" around long-term care homes and prevent the spread of the virus among vulnerable residents. As Ontario heads into the second wave, that policy isn't being repeated — while casual visits are being eliminated in hot spot areas, each resident will be allowed to designate two essential caregivers who can come into the home with proper training on the use of personal protective equipment.

At the same time as visits were banned, all of the normal aspects of social life within the home also stopped — no more conversations at mealtimes, birthday parties, scheduled activities and outings for fresh air and exercise, the residents said.

"The impact of the pandemic was as if the world had stopped and the nightmare had just begun," said Parraga.

Adding to that, the homes' chronic staffing shortages were aggravated when the government issued an order that workers had to choose only one home to limit the spread of the virus. The residents said that meant the personal support workers no longer had time to talk with them, or adequately care for them. They also spoke about being left in the dark by their homes' management teams and having no idea when the isolation would end.

Parraga said she's talked to the PSWs at her home about why they were unhappy. "First of all, they feel disrespected, and secondly, there is not enough of them to do all the work that is put in their path ... and I believe that these girls work hard. They have left homes and travelled a long distance to be here. And they put out sometimes $5,000 just to study PSW. And they are at the bottom of the totem pole."

Resident Murray Woodcock said long-term care home staff are underpaid and "scared stiff" about bringing the virus home to their families and he said something must be done about both of those problems immediately, noting that on the day of the interview a record 700 COVID-19 cases were announced in the province and an "army" of staff will be needed in the second wave.

"We have to have people to handle this in the future, and they can't wait around and say, 'We'll do it then and then and then,'" he said. "Then is now, as far as I am concerned."

The problems pre-existed the pandemic, with staff rarely having enough time for the residents before it struck. "The pandemic came along, and it was a disaster. People are left by themselves alone, depressed, crying their eyes out because nobody comes near them, nobody cares," he said. "Their family can't get in. Why am I here, and on and on and on."

Woodcock said he hopes the deaths in long-term care are a wake-up call that changes the system from one that warehouses people to one with an emphasis on "care." That's reflected in the food — he noted the nutrition budget is $9.75 per resident per day.

"At some point along the way, a check must come and get people jerked into reality that we in these long-term care homes are people," he said. "We are not objects to be brought in here and put to bed and got up in the morning and given some breakfast and shoved in front of the TV and given some lunch and put to bed and brought back out for supper and got to bed again, in the meantime fed with sub-standard food."

All of the residents who spoke to the commission said their particular homes were among the better ones but they know others aren't run as well.

"But I know this is not the case in a lot of long-term care homes," said Carolyn Snow, who said she'd enjoyed her time in long-term care prior to the pandemic. "My sister-in-law, point in fact, was in one that the local hospital had to take over, and she actually died of COVID while she was there."

One resident said something that seemed to alarm the others — the lack of funding early in the pandemic prompted his home's management to asking his residents' council to contribute funds for personal protective equipment. The council, which usually uses the funds at its own discretion on residents' behalf, gave the home's management $600 for PPE.

Jamie Ward said that giving that money made them feel like they were "in this together," but he agreed with his peers that it was highly inappropriate that the residents' fund was needed. "What it is is we were able to help provide that, but really the money should have been there for the more required materials," he said.

Woodcock, who had said an army of long-term care workers would be needed in the second wave, said it almost brought tears to his eyes that the Canadian army was needed in the first wave.

"The army and the hospitals are very effective, but it is an embarrassing — very, very embarrassing thing — for our government and our department of health who works for all of these homes to come to the point where we have to call in the Canadian Army to clean up a mess that should never have been there to start with, and which was created by the lack of oversight by decades of government people who were supposed to be doing their job and weren't doing it properly and all of a sudden it exploded," he said.

"And I just hope to God that it will never, ever happen again."