The trauma will change you forever. COVID-19 has exposed problems in long-term care. Will the response fix it?
Cheryl Robinson could tell the man was dying.
The registered practical nurse called the man's son, who was still hopeful, and suggested he come to Peel Manor in Brampton, where 10 residents with COVID-19 were isolated in the space that was once the adult day program on the ground floor.
When the son appeared on the other side of the glass, she opened the bedside window, allowing his voice to flow in with the breeze. Just a screen separated father and son. The resident could no longer speak, but Robinson believes hearing is the last sense to go. After his son left, she told the man he was loved.
He did not die alone. A personal support worker was with him, holding his hand, speaking softly, until his breathing stopped. After Robinson called his son and waited for the coroner to pronounce the death, she started a new task, something now asked of Ontario's front-line workers: taking care of a body with COVID.
Robinson shaved his face, just to make him look pretty, she said. She put a name tag on his toe. "The way they do in crime shows on TV." She wrapped him in the white bedsheet, folding one side over the other before she and two colleagues lifted him onto the gurney, sliding him inside a white plastic body bag.
After closing the zipper, Robinson took a paper sticky tab and with a black pen wrote the word "COVID." She taped it to the body bag, which is officially called a "pouch," and pushed the gurney outside where the funeral home staff waited.
Robinson went home that night and cried. The next morning, her throat felt tight, from anxiety, she thought. Peel Manor, a Peel Region home, has had three COVID-related deaths, which does not compare to homes where dozens have died, but the trauma staff experience is real.
Across Canada, the emotional devastation from COVID-19 will impact a generation of adult children who could not say goodbye to their parents and the front-line workers who stood in for families, if they had time. Otherwise, women and men died alone.
"We are everything for them," Robinson said. "When they pass, we just talk to them about their families. And if they don't get to see them, we are glad to be with them, at the end."
There are many reasons why the long-term care system collapsed during the pandemic, among the most obvious is the fact many homes pay minimum wage and limit the workers to part-time hours with few benefits, forcing most to work in two or three homes. That is how a virus spreads.
Government and industry created this workforce of mostly women who are devalued by pay and position within the hierarchy of homes. Staff are expected to chase tasks: changing briefs; washing faces; pushing a wheelchair to dinner then whisking away the plates, all on schedule. They could make the same money in retail.
People in the industry say COVID can give a vicious death. For some, it involves the sensation of drowning as lungs fill up with a pus-like substance. Terrified it will come to her workplace, a registered practical nurse in the Hamilton area watches as it decimates homes nearby.
She said nurses in other homes describe residents drowning in mucus and to relieve their struggle for breath, even in a small way, staff position them upright in bed. Some are so weak they cannot stay up, so they are strapped in place, the nurse said. Then, staff sit with the resident, hold their hand and speak calmly, while they choke to death.
"The trauma from that will change you forever," the veteran nurse said. She asked that her name not be used, saying nursing home staff are fired for speaking out.
Even with non-COVID deaths, the little traditions that honour a life are gone. Now, death is dehumanized, she said. All residents' bodies are treated the same way under the official directives. Workers bring the gurney to the room, make sure the wheels are locked, the height is right and put the body inside the bag, which is a struggle. Once that is done, workers must wipe the flimsy bag with bleach, their resident inside.
"It scares me to think that COVID will come into the building and take these beautiful old souls that I am caring for," the nurse said.
"I am close to these people, I don't want to watch them suffer and die. And I don't want to wash them with bleach."
Most nursing home managers won't talk publicly about the suffering. "There's a fine line," said one long-term care leader.
Workers know. It's no surprise that homes are struggling to find staff willing to risk infection and the lasting mental images of COVID deaths, even with Premier Doug Ford's temporary $4-an-hour wage increase.
In Ontario, the consequences of a precarious workforce are affecting thousands of vulnerable seniors, including those living in privately operated retirement homes. By the Star's recent count, there are outbreaks in 196 nursing homes and nearly 70 retirement homes.
Before the pandemic, Doris Grinspun, president and CEO of the Registered Nurses' Association of Ontario, said she assumed all seniors living in retirement homes were healthy and strong. "I have learned my lesson on that," Grinspun said. Now, in morning telephone meetings with government officials and Ontario's chief medical officer of health, she advocates for seniors in all homes.
Sinai Health's Dr. Samir Sinha started counting retirement home deaths weeks ago, watching the numbers rise as he and researchers at the National Institute on Ageing tried to track COVID in both systems. Nursing and retirement homes are controlled by different legislation, but in reality, both care for seniors in the same state of fragility.
Many seniors are forced to pay for retirement homes because long-term care has no room. In February, the wait for a nursing-home bed was at least two years and probably closer to four, although, as one seniors' advocate observed, darkly, "There might not be a wait list when the pandemic is over."
Government inspection reports have long detailed systemic problems, providing boundless material for media, which led to stories on residents left in filthy briefs, pressure ulcers that didn't get proper care or people who died alone, strangled on restraints.
There's another layer of neglect that doesn't appear as an inspection report violation. The loneliness or uselessness of life in long-term care. Age does not change the need for purpose, to participate in life based on an individual's talents or interests, the reason why advocates believe emotion-focused care should be part of any new nursing home strategy.
Ontario has been too timid or uninterested to transform the old ways. Government licences for new long-term care homes still allow the big box version that places 30 or more people in one unit, more like a hospital than a home. That design can also enable the spread of a virus, through one large space.
COVID has created a new recognition of the failed system, which will now include trauma. For families, there's a lifetime of guilt in knowing that a mother died alone. Workers will have ingrained memories of COVID deaths or bagging the bodies of residents they loved.
If politicians don't act on this, advocates say, then we had all better be prepared for a future of misery.
Recently, Prime Minister Justin Trudeau said a few words on seniors at his daily briefing.
"We need to do better. Because we are failing our parents, our grandparents, our elders - the greatest generation, who built this country. We need to care for them properly," Trudeau said.
On April 25, four minutes into Premier Doug Ford's prepared statement, he dug into nursing homes.
"This crisis has clearly shown the deeply rooted, long-standing cracks in our long-term care system. We need to do better, and we will do better," Ford said.
"The federal government has been a tremendous partner to this point, but we really need them to step up. We need a sustained commitment on health care and long-term care from the federal government. We need them to do their part when it comes to protecting the most vulnerable in long-term care because we have a collective duty as a country, as a people, to protect the most vulnerable."
These words are both heartfelt and vague. Let's call them good intentions. The question is, will they disappear over time?
It may not be easy for them to just to slip away. Behind the scenes, advocacy groups, academics and doctors are collaborating to hold politicians to their word. "Policymakers will have their feet held to the fire on seniors' issues in a way that makes them take action," said Laura Tamblyn Watts, CEO of CanAge.
The conversation about a national long-term care act has gathered momentum since York University professor Pat Armstrong discussed it with reporters a few weeks ago.
Armstrong has previously written on the concept, but during the pandemic the idea of long-term care legislation is gaining traction.
"I think there is a lot more appetite for some kind of national program," Armstrong said.
Citing the Canada Health Act's universal medical care, Armstrong recommends legislation that creates a nationally funded long-term care sector. Federal money could be tied to specific requirements of homes. Staffing and wages, for example, could be part of a labour strategy included in the legislation, she said.
The key, she said, is the creation of a workforce that allows staff to flourish, with a living wage and enough workers to spend quality time with residents.
"I think we owe it to all those people who suffered and died from this to make it better."
Moira Welsh is a Toronto-based investigative reporter for the Star. Follow her on Twitter: @moirawelsh