We are isolated, 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.
Barry Hickling, resident leader of a long-term-care home, about the impact of COVID-19.
The line in the sand for the coronavirus was drawn through shattered hourglasses and bell jars of isolation for our elderly in long-term care.
We seem almost to have forgotten already the seniors who found themselves on the front line of this global pandemic, casualties of incompetence and unpreparedness, dying in solitary.
More than 1,900 lives lost among residents of long-termcare (LTC) facilities, not counting the caregivers who were also struck by COVID-19.
If not the greatest generation, the most expendable one in 2020.
There were 450 outbreaks in Ontario’s LTC settings earlier on in the pandemic. As of Sunday, 49 LTC homes were now in outbreak and 31 retirement homes.
Those who survived, who either recovered or managed to evade contamination, have been traumatized. And they remain petrified as a second wave surges.
“I have been in long-term care about 10 years and never in my life have I experienced anything that has terrified me more than this COVID-19 virus. Speaking of our preparedness and dealing with the issue of this virus, the response has been weak, I am sure, in many places. There has been a lot of confusion. There has been a lot of anxiety where people are almost terrified, even scared to speak about the virus.
“It has been a horrible experience in long-term care. I hope that this will be a tremendous learning experience for all of us, but the pain will not go away. It will stay. It will torment us because of the potential for another wave or potential of someone bringing something into a long-term-care home.
“The fear is a torment. It elevates blood pressure. It elevates anxiety. The fear that we experience … all of it is exploding in the last six months. It hurts. We are isolated, 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.”
That is Barry Hickling speaking, resident of a Windsor LTC. Also a resident leader, a delegate board member with the Ontario Association of Residents’ Councils (OARC). Hickling was among a group of resident leaders who participated in a Zoom session a week ago with the Independent Long-Term Care COVID-19 Commission, chaired by Justice Frank Marrocco. Established by the province, the commission has been tasked with probing how COVID-19 spread like wildfire through the homes, how the residents were affected, whether control measures were effective — clearly, they were not — and how to do better.
Too few personal support workers, those who stayed on the job run off their feet, burned out, no time to provide the emotional buttressing that is crucial for well-being, especially when family can’t step foot on the premises; residents secluded in their rooms, denied not just comfort but information, nobody telling them what was going on. Insufficient personal protective equipment — at one home, at the request of management, residents came up with $600 to buy more PPE for staff.
Swamped by numbers, riven by sad stories, we have largely overlooked the fact that many of these seniors had led productive lives, were leaders and managers in their professional fields, had continued to find purpose and enjoyment in their existence — attended concerts and plays and other excursions, took day trips to casinos and museums, had a wealth of knowledge to share and were exacting in their care of others within the residences who were not able to get out, who perhaps had nobody left to love them.
“Residents were left in the dark and didn’t know what was happening to their peers, to their home, to their colleagues, to their staff members,” said Dee Lender, OARC executive director. Adding: “If you know that it is two weeks or three weeks or four weeks, you can brace yourself. You can rely more heavily on phone calls and just hunker down together and get through it. But when there was no end in sight and no foreseeable guidance around when visiting would be … reinstated, it just seemed like the hope, the hope was gone.”
So I will get out of the way now and leave it to these resident leaders to tell their own tales, in their own words, from the transcripts of the Zoom call, which were released last week. Because they have much to say and we need to listen.
Virginia Parraga: “I want you to take a peek through my eyes only. Long-term-care homes have come to depict a prison for many residents at this time. Due to COVID-19, we no longer view these institutions as a safe haven to fall into as if on a cloud.
“The majority of LTC residents have sold their own homes in order to afford the rest at some of these institutions. They seldom have any family or friends still living, and thus no place left to go. Where do we go after the cash flow dries up?
“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. I now weep for our human race and for mankind. Nobody cares, echoes my plight daily. Are we not in this boat called ‘pandemic’ all together?
“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 changed.”
Carolyn Snow: “It didn’t impact me until we got the notice that no visitors could come in. And then it hit that we really are isolated, and a lot of our other residents were saying it is just like being in prison, except that prisoners are treated better.
“I began to feel the same way. Up until that point, I have actually enjoyed my time in long-term care. I feel that we have a good home and that the staff are excellent. But I know this is not the case in a lot of long-term-care homes. My sister-in-law was in one that the local hospital had to take over and she actually died of COVID while she was there.
“So it went from not being too concerned to being devastated.”
Devora, 86 years old: “My home was in COVID-19 outbreak. I was cohorted to a different section of the building … into a room where the woman who lived there did have COVID. They covered all of her belongings with black garbage bags. I was in that room for over three months with very few personal belongings … I had no TV, only my computers. What troubled me the most was the lack of human contact. Each day I saw a PSW a couple of times, full 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.
“I enjoyed going out two to three times a week for lectures, outings with my kids, activities with the home. All that stopped all at once and I was all alone.
“Being alone in one room every day almost made me crazy. 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.”
Sharron Cooke: “The whole COVID situation was an emotional roller-coaster. Everything changed from day-to-day, nothing consistent … Isolation for residents not being able to socialize with their peers and families caused great depression, as well as having to stay in the rooms and eating alone. Hot meals no longer, just warm and soggy.
“Lack of activation caused non-stimulation and left residents dormant and sleeping all the time. What recreational activities that there were available was spent mostly with the dementia residents because they needed more one-to-one care. … There was no emotional interaction whatsoever. It was just, stay in the your room dear …
“The residents didn’t know what day it was, what time it was. They were looking for nighties at noon because they couldn’t figure out what time of day it was.”
Hickling: “The homes that were most successful were the homes that really addressed the team members (staff ) first, and knowing that my team members were cared for immediately, as soon as possible, was important for any home because if they are not being cared for, if they are not taking the swabs and being tested … that is our lives. This is where we live. They bring it in, they take it out.”
Murray Woodcock: “The biggest single concern that I had then and I still have now is how do we manage the staffing shortage in long-term care, which we weren’t managing well. We never had enough. The ratio of residents to staff in long-term-care homes is a crying shame, as everyone knows.
“If we are going to survive another pandemic, that is one of the issues that has to be addressed and addressed very, very seriously, or we are going to have a major, major problem.
“They are not paid enough money … The only thing that nobody seems to realize is that these long-term-care people we have now, they are all played out. They have been worked to death … They are scared stiff every day that they’ll pick it up and take it home to their kids and family. We are scared stiff that they are going to bring it back to us.
“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.
“The general attitude of the public and people who deal with long-term care must undergo a massive change. Instead of thinking right now that they are long-term warehouses, they should be longterm-care homes, with the emphasis on care.
“It is time we started being treated as people. Why are the prisoners in our justice system fed better that we are? Like, who are we? We are the people who worked all of our lives. We paid our taxes on everything, we all worked. And at the end of our life, we were entitled to some peace and some quiet and enjoyment.
“With our backs to the wall, we get nothing.”