When Adil Butt’s body started to ache, he immediately isolated himself in a small bedroom for a month to keep his young family safe from COVID-19.
The 42-year-old lives in Thorncliffe Park, a tightly knit community of apartment buildings in Toronto’s east end. Neighbours have been hit hard by the coronavirus.
Butt phoned to inquire about testing at a local pop-up site on Saturday, Dec. 5, got tested and received his positive result the following Monday.
He went above and beyond public health guidelines to avoid passing on the virus to his wife and children, ages 10, seven, six and three.”Nobody got it,” he said. “It was very hard, especially [for] my small kid.”
This week marks the one-year anniversary of the first quarantine measures to control COVID-19. When CBC News canvassed some doctors and scientists across Canada on what’s fundamentally changed in health care during the pandemic, what stood out was the need for more collaborative care similar to what Butt received.
Primary care providers help prevent people from coming to hospital with damaging and costly complications of diabetes or infections.
Deaths and policy failures
Dr. Andrew Boozary, executive director of social medicine at Toronto’s University Health Network, said community health centres such as where Butt was tested offer a one-stop shop of services, including prescription medications, healthy foods and connections to housing and jobs for people living on the margins across Canada.
“There’s actually systemic discrimination in the way we pay for primary care and the way we fund our health-care system,” he said.
Boozary said the pandemic has exposed public policy failures, not only in long-term care homes but also in neighbourhoods where essential workers, many who are racialized, bear a disproportionate burden.
“Our failure or lack of policy has really determined who lives and who dies,” Boozary said. “When you go back to look at things like primary care, if you put the map of where primary care funding was and the map of where COVID was, there’s a complete mismatch.”
Boozary draws hope from community health centres, which he said have been a leader for decades in gaining patients’ trust by working with them regularly where they are.
Caring for all to stop coronavirus
Cheryl Prescod, executive director of Black Creek Community Health Centre in the city’s northwest, said their service is priceless and underestimated.
“Throughout this past year, I believe we saw our value,” she said.
Asked about the need for stable funding beyond the pandemic, Prescod said, “We feel invisible compared to larger hospitals or larger health-care institutions. The small community health centres are the distant cousins.”
But the coronavirus that causes COVID-19 will not discriminate between someone who earns a high income and someone who doesn’t.
WATCH | Community volunteers ease vaccine roll out:
Several community and religious groups in British Columbia are armed with computers and phones, ready to help local seniors sign up for COVID-19 vaccinations. 2:03
“The virus will not be stopped unless we take care of everybody,” Prescod said.
Paulina Aghedo works as one of the centre’s community ambassadors, sharing safety tips to stop the spread in her neighbourhood.
Now, Aghedo hands out flyers and sparks conversation, all to raise awareness of testing sites in apartment complexes, lobbies and parking lots. It’s home to many personal support workers and grocery clerks who work long hours and may still struggle to make ends meet.
She recalled knocking on doors in her crowded building to distribute flyers when a friend called to say someone needed to know about testing right away.
“She is just coughing in her working place and they told her if she doesn’t bring that COVID-19 test [result] she shouldn’t come back to work,” Aghedo said.
The flyer reached the woman, who tested negative and no longer feared losing her job.
“I was very happy I could help someone,” Aghedo said.
For his part, Butt gave up his job as an Uber driver during COVID-19. He temporarily lost his sense of smell, even for perfume that was pungent to his wife, as well as sense of taste.
During self-isolation, the food delivery volunteer relied on friends from his neighbourhood to return the gesture. For Butt, seeing neighbours helping each other to cope and recover resembles how doctors and nurses care for patients in hospitals.
“He [a friend] was bringing the food for me and leaving it outside my door and this is how we survived,” Butt said of his neighbour.
Butt’s fever broke after a few days and he’s fully recovered.
Ten months into the COVID-19 pandemic, inspectors were still catching Ontario long-term care homes violating crucial infection prevention and control measures.
A CBC News data investigation has found 1 in 12 long-term care facilities in the province were caught breaking COVID-specific government directives between June 2020 and January 2021. Many infractions occurred during or after outbreaks.
“To have egregious infractions in terms of not following standard operating procedure for things like infection prevention and control, these operators need to be held to account,” said Dr. Nathan Stall, a geriatrician at Mount Sinai Hospital in Toronto.
The COVID-19 death toll in Ontario’s long-term care homes was 3,743 residents as of Feb. 26, 2021, according to the province. Of those deaths, 1,848 occurred before Aug. 31, 2020, which means the second spike in long-term care homes was even deadlier than the first.
Improper screening was a frequent issue at homes. Many were cited for not asking staff members or visitors questions or taking their temperatures, and failing to ensure they were wearing masks as they entered or left the premises.
Some of the reports from provincial inspectors also detail long lists of infection control issues. While other companies are reflected in the data, the number of Caressant Care-owned homes with inspection violations of COVID-19 directives is high relative to the number of homes owned by the company.
WATCH | Several Ontario nursing homes broke rules meant to prevent COVID-19 outbreaks:
A CBC News investigation has revealed that multiple Ontario long-term care homes didn’t follow infection prevention rules meant to prevent COVID-19 outbreaks with some breaking the rules during or after an outbreak. 2:50
At Caressant Care Listowel Nursing Home west of Toronto, where an outbreak infected nearly every resident of the home in January, an inspector found 12 major infection control violations during the outbreak.
“That probably explains quite a bit about how [COVID-19] got through so quickly,” said Alycia Houchen, whose grandfather, Edwin Rutherford, was one of 13 residents who died in the home, which has room for 45 people.
In all, 43 residents and 26 staff were infected during the winter outbreak at the home.
The violations included staff not being aware of the correct personal protective equipment to wear and not cleaning their hands after taking care of residents; staff working with both COVID-19 positive and negative residents; and hand sanitizer not being available in all areas of the home.
Houchen, herself a personal support worker at a different retirement home, says the inspection report findings are “disturbing and disgusting.”
“They have had plenty of time to prepare and to do whatever they needed to do, and they obviously didn’t do it.”
Caressant Care owns 15 homes in Ontario. Four of those facilities were caught breaking COVID-19 safety directives during inspections. Like the location in Listowel, two others were found to be in violation of the infection control rules during outbreaks in December or January.
The company declined to comment for this story.
Big operator accounts for more than 20% of violations
Extendicare, one of Ontario’s largest long-term care operators, which owns or manages 69 facilities in the province, was cited for the most violations of infection control and prevention directives.
Homes owned by the company accounted for 13 per cent of the provincial total of 60 violations. When homes the company manages are included, that increases to 22 per cent of the violations.
Other big chains such as Sienna Senior Living and Revera accounted for three and five per cent, respectively.
Inspection citations against Ontario’s long-term care homes hardly ever come with any consequences. Homes are asked to fix the problem, but even if an inspector returns and finds the same issue, there are no fines or penalties. In very rare cases, homes are barred from accepting new residents.
Extendicare says inspectors visited its owned and managed homes almost 200 times in the past six months.
“While some inspections do report issues related to COVID directives that require attention, these represent a small minority of the visits,” Extendicare said in a statement to CBC News. “While our goal is to have no issues, it’s important to note that in 93 per cent of the inspections, there were no COVID-related compliance issues.”
For-profit long-term care homes received 70 per cent of the violation citations despite accounting for 56 per cent of the homes in the province. An additional eight per cent of the violations were found in non-profit homes managed by for-profit companies.
That for-profit operators are over-represented in the findings isn’t surprising to Tamara Daly, the director of York University’s Centre for Aging Research and Education. She has been studying the differences between for-profit and non-profit care for years.
“I think, at the end of the day, the working conditions and the caring conditions have been shown to be worse at for-profit facilities and the research data backs this up, both pre-pandemic and during the pandemic,” she said.
CBC News sent the Ontario Ministry of Long-Term Care its findings from the inspection reports. It responded with a statement that said inspectors monitor for the health, safety and quality of care of residents.
“Repeated non-compliance is a serious concern and can result in escalated measures and sanctions by the ministry,” the statement says.
Inspectors spot infection control issues during outbreaks
Of the infection control and prevention violations, 52 per cent occurred in homes either during or after an outbreak.
The fact that inspectors were finding repeated violations in the same home, or violations after an outbreak, is very concerning, said Daly.
“To get those reports indicating that there’s still improper use of PPE after an incident, that concerns me greatly, because where is the learning?”
Ten homes were cited for denying entry to essential caregivers. Short staffing in homes has been well documented, and restricting family access means residents often don’t get the care they need, said Daly.
It’s also a quality of life issue, she said.
“Being in long-term care is very different than being in a hospital bed,” she said. “You’re there to live. And I think what we essentially did is we removed that part of their care, the living part, the part that makes life worthwhile.”
Infection control important after vaccinations
Even as residents at Ontario nursing homes get vaccinated, the number of infection control violations is still concerning, said Stall, the geriatrician at Mount Sinai Hospital.
“Vaccine euphoria is a good thing. We should all be excited about this,” he said.
However, he said, we don’t know definitively that the vaccines prevent transmission.
The vaccine supply didn’t make it in time to help at Caressant Care Listowel.
For Houchen, the tragedy was hard to watch from the outside.
She didn’t get to say goodbye to her grandfather, and as a personal support worker, not being able to help him in his final days made it worse, she said.
“I followed it with my heart breaking,” she said. “Every time [the deaths] climbed up, my heart was just breaking more because there’s nothing you can do, there’s nothing you can do to help.”
Lucy Fernandez volunteered in a long-term care home for 20 years.
Although she saw first-hand how much of an effort staff and her fellow volunteers made to keep the residents happy, she also saw many seniors languishing in their rooms.
“While she was still, you know, fairly cognizant, [she] expressed her desire of not wanting to go to a long-term care facility,” her daughter, Laura Fernandez, said.
Lucy, now 85, suffers from advanced Alzheimer’s disease, with limited ability to speak and move. Because she’s one of 850 people in Ontario’s High Intensity Supports at Home program,announced by the provincial government in December, personal support workers come in for several hours a day — in addition to others who work with her on cognitive development — allowing Laura Fernandez to keep her mother at home in Toronto.
“She is in her own environment, she’s happy,” Fernandez said. “Just knowing that I’m there, I know is giving her comfort.”
That’s the level and quality of home care that should be much more widely available to seniors, according to several health policy advocates, including the National Institute on Ageing and the Ontario Community Support Association.
In addition, they say, it would ultimately save governments money by keeping more seniors out of long-term care facilities, which are expensive both to build and run.
COVID-19 put spotlight on home care
The benefit of increased home-care investment in Canada is getting long-overdue attention, now that COVID-19 has torn through long-term care homes, killing thousands of residents and exposing lethal weaknesses in the system, said Dr. Samir Sinha, head of geriatrics at Mount Sinai and University Health Network hospitals in Toronto.
“Long-term care is at a crossroads,” said Sinha, who is also the director of health policy research for the National Institute on Ageing.
“People are thinking about their futures more than ever before and saying, ‘When I age, you know, am I going to be able to age with independence? Will I have to go into one of these homes? You know, how do I actually stay in my home for as long as possible?'”
WATCH | Laura Fernandez’s mother volunteered in a long-term care home:
Laura Fernandez describes the difference it makes for her mother, who has advanced Alzheimer’s disease, to receive the care that allows her to stay at home. 1:15
Not only do most seniors want to live at home for as long as possible, more of them actually could, according to a report released by the Canadian Institute for Health Information (CIHI) in August 2020.
After reviewing the health status of people admitted in long-term care facilities in several provinces over the course of a year, CIHI concluded that across Canada, about one in nine new admissions “could potentially have been cared for at home, provided they had access to ongoing home-care services and supports.”
In Ontario, where people admitted to long-term care facilities are often quite frail or suffer serious cognitive impairment, including dementia, CIHI estimated that one in 12 new admissions could still potentially have remained at home if sufficient care were provided.
“One of the greatest reasons why people end up in nursing homes in Canada is because we don’t have enough publicly funded home care and supports … available,” Sinha said.
Although the Ontario government (under both Liberal and Conservative leadership) has increased its investment in home care and community services over the last decade, those investments haven’t kept pace with the needs of an aging population, according to the Ontario Community Support Association, which represents more than 200 not-for-profit organizations that provide home care and community support.
While long-term care homes have been struggling during the pandemic, the home-care sector could have helped lessen their load if it were funded appropriately, said Deborah Simon, the association’s CEO.
Home care has also proven to be a safer option during COVID-19, Simon said, because seniors could more easily isolate in their own homes than in the congregate living setting of a long-term care facility. In addition, home-care workers use “the full gamut” of personal protective equipment.
“Care can be safely provided to people in the community who have COVID, using those very, very stringent practices around infection control,” Simon said.
“Home care is what people want, and they want it even more because of the pandemic,” Health Minister Christian Dubé said at a news conference in Montreal in November.
In a statement, Ontario’s Ministry of Health said it provided about $ 2.88 billion in funding to home care in the 2019-20 fiscal year. No estimate was given for the 2020-21 fiscal year.
On Tuesday evening, a ministry spokesperson told CBC News in an email that “the government continues to make investments in our home-care sector for 2021-22,” citing an “additional” $ 111 million for the High Intensity Supports at Home program to help people with high needs — including Lucy Fernandez — transition out of hospital to home.
The spokesperson also cited last October’s announcement of a $ 461 million “temporary wage increase” for personal support workers in both home-care and long-term care settings during COVID-19.
In a separate statement, a spokesperson for the Ministry of Long-Term Care said it was investing up to $ 20 million for a community paramedicine program to provide services to seniors in their homes while they wait for a bed in long-term care.
But both the National Institute on Ageing and the Ontario Community Support Association say government funding should be prioritized so that home care is the end goal, rather than just an interim solution until seniors get a space in long-term care.
The Ontario Community Support Association has submitted a pre-budget consultation report to the provincial government, advocating for an investment of $ 595 million in the 2021 budget to make that happen.
The National Institute on Ageing has also submitted a proposal, co-authored by Sinha, to prioritize home care.
WATCH | Doctor says most Canadians want to age at home for as long as possible:
Geriatrics specialist Dr. Samir Sinha says boosting the level of home care and sending fewer people to long-term care facilities is both cost-effective and the right thing to do. 0:33
Both reports estimate the cost of home care to be significantly less expensive than long-term care. They also point to the Ontario government’s own estimate that about 38,000 people are currently on the waiting list for a long-term care bed.
To address that, the Ontario government has pledged to build 15,000 new long-term care beds and update 15,000 more.
That will cost billions of dollars that could be better invested — at a lower cost — in building a robust home-care system, Sinha said.
“By finding that better balance with those future investments we’re looking to make, I think we’re actually going to allow more people to age in the places of their choice, which frankly allows everybody — the taxpayers and individuals and governments — to win.”
Jody Vance said her heart skipped a beat when she got an unexpected phone call from the long-term care facility where her elderly father lives.
She braced herself for bad news, but instead the voice on the other end told her something so many Canadians would love to hear: a dose of the Pfizer-BionTech COVID-19 vaccine was being set aside for her.
“It was kind of was a little bit surreal,” she said. “It felt like hope.”
Vance got the shot because staff at the long-term care facility in Delta, B.C., declared her an “essential” visitor for her 82-year-old father. Driving him to emergency cancer surgeries during the pandemic made her eligible for such status.
To Vance, the main benefit of being vaccinated is that her dad won’t need to be isolated from her for his own protection.
B.C. is one of the few provinces — Ontario and Nova Scotia are taking a similar approach — ushering essential visitors to the front of the vaccine line as a priority group. It’s up to the discretion of each facility to determine who is considered essential.
There is no cap in B.C. on the number of approved essential visitors, but only one will be allowed at a time with exceptions made for end-of-life care.
Those left to wait say they are also left to wonder if the delay could ultimately be too long.
A frustrating process
“I don’t know how long she’ll be with us,” said Niovi Patsicakis, speaking about her 98-year-old mother, who lives at Evergreen Long-Term Care in White Rock.
Patsicakis said her mom has been mostly confined to her room in the facility for nearly three months, and Patsicakis hasn’t been able to visit since before Christmas. She said she fears the lack of in-person mother-daughter visits has affected her mom’s health.
But unlike Vance, Patsicakis said she has not been deemed essential by her mom’s long-term care facility.
According to the B.C. Centre for Disease Control (BCCDC), essential visits include those for compassionate care reasons such as critical illness, hospice care, end of life and medical assistance in dying. They can also include visits by a person who assists with feeding, mobility and communication needs.
WATCH | British Columbians with loved ones in long-term care talk about their experiences trying to get vaccine priority:
As the vaccine rolls out in long-term care homes across the country, some provinces, including British Columbia, are also prioritizing essential caregivers for a shot to benefit residents and staff. But there’s some inconsistency about who qualifies as essential. 2:03
The B.C. Health Ministry has also said a clergy member can be designated as an essential visitor.
Health authority and facility staff, in collaboration with the long-term care resident, determine who gets essential visitor status, according to BCCDC in guidelines published on Jan. 7.
Patsicakis’ visits in the past have tended to be social in nature, but Patsicakis said her mother’s health seems to be deteriorating since their loss of contact.
“I can see a huge difference in how mom has gotten much worse,” said Patsicakis. “Her language skills have weakened as well as her mood. Sometimes, she’s confused or doesn’t want to get out of bed.”
Trying to get an essential designation has been difficult and frustrating, she said.
Patsicakis said essential visitors to Evergreen are evaluated by a group that includes facility faculty and a representative from the local health authority, Fraser Health. She said she wrote Evergreen administration three times to plead her case and filed a complaint with an advocate at the health authority’s patient quality care office.
She said she requested Evergreen’s decision be sent to her in writing in November and never received it. As of Jan. 20, she said hadn’t heard anything from Fraser Health either.
“I know so many people are devastated,” she said, adding she is part of a social media group of others like herself who are supporting one another as best they can.
The National Institute on Ageing said families in British Columbia are enduring the most restrictive long-term care home visitation policies in the country.
B.C. Seniors Advocate Isobel Mackenzie said the lack of an association that represents residents and their families at the 300 care homes in B.C. means they don’t have a voice in policy discussions between the government and care-home operators.
She said care home operators seem to be arbitrarily deciding who qualifies as an essential or designated visitor.
Dr. Bonnie Henry, B.C.’s provincial health officer, provided the latest numbers of people who had qualified as essential visitors during a press event on Jan. 18.
Henry said about 8,000 people have met the criteria and will receive a vaccination during the province’s first phase of a four-phase immunization program, which is underway. There are approximately 30,000 people living in long-term care facilities
“The default, we believe, should be that every person, every resident who has a person who can care for them, should have a designated essential visitor, but that has been a challenge to operationalize,” said Henry.
Applications for essential status are available on the provincial health ministry’s website. There is an appeal process for people who do not like the initial decision.
One Abbotsford long-term care home operator said the more people who are designated essential, the better.
“Because of staffing levels, this gives us that extra layer of assistance — they are doing things like supporting their loved one with feeding or mobility,” said Dan Levitt, executive director of Tabor Village. “So they need that vaccine, and that’ll make a big difference for all of us.”
During a Friday press briefing, B.C. Health Minister Adrian Dix addressed the frustration felt by people disappointed to hear they are not considered essential.
“Everyone should feel that their participation, their social life, their visiting of their loved ones is essential,” he said.
Dix said vaccinating residents and staff in long-term care and assisted living facilities now could lead to eased restrictions around social visits by March, when all residents and staff are expected to have received both doses of their vaccines.
“It’s going to allow a lot of things to happen, including more visits from family members and loved ones and friends,” he said.
One of the largest operators of Canadian seniors’ residences and long-term care homes is calling for provinces to adopt widespread surveillance testing as part of an internal review set to be released on Monday.
The review for Revera was chaired by Dr. Bob Bell, former deputy health minister in Ontario and a former hospital CEO.
Bell was not paid to serve as chair of the review, which was carried out by international and national public health experts who volunteered their time.
Surveillance testing in Ontario involves testing symptomatic and asymptomatic staff, the frequency of which depends on where each community stands within Ontario’s provincial framework. Ontario also actively screens residents and staff.
“The most important factor depends on how much virus is in the community,” he said during an interview that aired on Rosemary Barton Live on Sunday.
“These folks unknowingly, in the best interest of their patients, come to work, and if they are not tested, [the risk] of them unknowingly bringing disease into the home during a time when they’re infected but asymptomatic is high.”
Bell said Ontario has adopted surveillance testing and has since been able to protect long-term care residents more effectively.
It has yet to be adopted elsewhere in Canada, where thousands of COVID-19 deaths have been reported at care homes.
“The government has not mandated mandatory testing,” Bell said. “Revera itself is actually contracting with private testing companies to actually do tests for their staff, and this is one of the most important things, our report says, to protect residents.”
WATCH | Dr. Bob Bell discusses some findings with Rosemary Barton prior to the report’s release on Monday:
A report looking into Revera’s response to the first wave of COVID-19 in long-term care homes will be made available to the public. Dr. Bob Bell, the chair of the review, says that the lessons from the first wave were being applied in the second. 2:03
Revera operates more than 70 long-term care homes in British Columbia, Alberta, Manitoba and Ontario, and more than 500 properties across North America and the United Kingdom. It also operates nearly 100 retirement residences in the same provinces, as well as in Saskatchewan.
From the start of the pandemic in Canada until Aug. 31, there were outbreaks at 87 Revera sites — meaning each of the affected properties, which included 55 long-term care homes and 32 retirement residences, reported at least one case of COVID-19.
The impact of the virus at Revera’s long-term care facilities was significant. There were 874 cases of COVID-19 and 266 deaths, which is a fatality rate of 30 per cent. In Revera’s retirement residences, 104 people were infected and 20 died.
Bell said there’s no question that as the second wave continues and as vaccines arrive, Canadians will continue to examine what has occurred in long-term care homes.
“The most important thing we can do right now is to be testing. In areas of high community spread, we should be testing every day,” he said.
Those tests should not involve deep nasopharyngeal swabs that are uncomfortable for staff, Bell said, but use saliva and other forms of testing.
A spokesperson with Ontario’s Ministry of Long-Term Care said proactive surveillance testing — including testing of all symptomatic and asymptomatic staff — continues to be done in all long-term care homes.
According to the spokesperson, testing in long-term care facilities in Ontario involves:
Testing residents at least twice daily for symptoms of COVID-19, and isolating and testing any residents with symptoms.
Screening all staff at least twice daily with symptom screening and temperature checks.
Adjusting how many times staff are tested based on the status of each individual community.
Frequency of staff testing aligns with the status of the community within Ontario’s provincial framework.
Ontario has also deployed COVID-19 rapid tests to screen staff in long-term care homes.
Dr. Brent Roussin, Manitoba’s chief public health officer, said the province was working on strategies to implement more routine testing at long-term care homes.
“We certainly don’t have enough rapid tests to do that regularly, but we are looking at an approach to do a pilot in these areas,” Roussin said during a press conference on Thursday.
Last week, Alberta announced it would soon begin piloting rapid testing at select sites across the province, including at various continuing care facilities.
British Columbia health officials said the province’s recommendation at present was to test asymptomatic individuals only in public health investigations of cases, clusters or outbreaks.
“This recommendation may differ from that of other provinces or countries, and other national or international health professional societies,” reads a statement from the province’s Health Ministry.
Bell said in his view, one of the most important starts of mandatory requirements across the country would be for all provinces to be testing staff.
“If the risk is as high as it currently is, for example, in Alberta or in communities like Toronto or Peel, to be testing every day,” he said.
“Because staff don’t want to be carrying disease in. They are unknowing that they’re infected. They should be given an easy way to test themselves.”
‘Absolutely horrifying’ experience at Calgary facility
Nanaimo, B.C., resident Renee Laboucane’s two parents were living at the McKenzie Towne Continuing Care Centre in Calgary when the Revera facility experienced a significant COVID-19 outbreak earlier this year.
Laboucane’s mother died as a result of COVID-19, and her father still resides at the facility. She called the experience “absolutely horrifying.”
“We had zero communication, zero knowledge of what was going on…. We know there wasn’t the resources in the initial few weeks needed to care for the residents at McKenzie Towne,” she said.
As of Sunday, 20 people have died of COVID-19 at McKenzie Towne, and more than 100 residents and staff tested positive for the virus. Laboucane said the experience has been heart-wrenching for family members and friends.
“We’re all dealing with the effects of COVID and how it’s dealing with our lives,” she said.
WATCH | Renee Laboucane discusses outbreak at Calgary long-term care home:
Nanaimo resident Renee Laboucane’s said her two parents were living at the McKenzie Towne Continuing Care Centre in Calgary when it experienced a significant COVID-19 outbreak earlier this year. 0:32
As those like Laboucane are mourning and searching for answers, other Canadian families are concerned about their loved ones living in facilities currently experiencing COVID-19 outbreaks.
Manitoba reported 16 additional deaths on Tuesday, a new daily high in a province that has been struggling with growing COVID-19 case numbers.
“This is a tragedy for all Manitobans,” Dr. Brent Roussin said Tuesday after reading a list with the ages and communities of those who died.
“We know that these are much more than numbers. These are people who are missed right now.”
Manitoba, which has seen a total of 328 deaths, reported 283 new COVID-19 cases on Tuesday — the first time in more than a week that the new case number in the province dropped below 300.
Roussin said that while numbers aren’t “climbing rapidly,” they still aren’t where the province needs them to be.
“These numbers are still too high for us to sustain.”
The province’s health-care capacity is “being pushed” he said, noting that hospitals are reaching capacity and health-care workers are overwhelmed.
As of Tuesday, there were 338 people hospitalized, with 48 in intensive care.
What’s happening across Canada
As of 11:20 a.m. ET on Wednesday, Canada’s COVID-19 case count stood at 386,716, with 66,834 of those considered active cases. A CBC News tally of deaths based on provincial reports, regional health information and CBC’s reporting stood at 12,287.
British Columbia also reported 16 additional deaths on Tuesday, bringing the provincial death toll to 457. Health officials in the province reported 656 new cases of COVID-19 and said there were 336 people in hospital, including 76 in intensive care.
Faced with rising case numbers, Provincial Health Officer Dr. Bonnie Henry and Health Minister Adrian Dix reiterated their plea for people to follow rules put in place to try and slow the spread of the virus.
“Without exception, follow the provincial health officer’s orders in place,” the pair said in a statement. “Remember that events, which refer to anything that gathers people together — whether on a one-time, regular or irregular basis — are not allowed for now.”
WATCH |COVID-19 returns to B.C. nursing homes, death toll rises:
British Columbia has seen more COVID-19 deaths over the past two weeks than the preceding two months because the virus has found its way back into nursing homes. And with long-term care workers exhausted and families frustrated, it’s not clear what can be done. 1:54
In Alberta, health officials announced 10 additional deaths and 1,307 new cases of COVID-19 on Tuesday. Hospitalizations stood at 479, with 97 people in intensive care.
Dr. Deena Hinshaw, the province’s chief medical officer of health, said a decision around what sort of restrictions will be in place over the holidays is expected later in the month.
“However, in the past we have seen holiday gatherings lead to increases in cases and outbreaks as one case spreads to many,” Hinshaw said, pointing to the ongoing impact of Thanksgiving gatherings.
“This is not going to be the year for in-person office parties,” she said. “This is not going to be the year for open houses, or large dinners with friends and extended family.”
In Saskatchewan, health officials reported 181 new cases of COVID-19 and four additional deaths, bringing the provincial death toll to 51.
The province’s minister of corrections said she doesn’t know how COVID-19 arrived in the Saskatoon Correctional Centre, which is dealing with a growing outbreak that has led to well over 100 cases among inmates, as well as several infections among staff.
Ontario on Wednesday reported 1,723 new cases of COVID-19, with 500 cases in Peel Region and 410 in Toronto. Health Minister Christine Elliott said in a tweet that 44,200 tests had been completed.
Health officials also reported 35 additional deaths, bringing the provincial death toll to 3,698.
Hospitalizations increased to 656, with 183 people in intensive care units, according to a provincial dashboard.
Hospitalizations increased to 740, with 99 patients being treated in intensive care units.
Premier François Legault warned Tuesday that the province’s plan to allow gatherings for four days around Christmas is at risk as the number of hospitalizations in the province reached their highest level since June.
“We’re not going in the right direction,” Legault said at a press conference in Quebec City. “If hospitalizations continue to increase, it will be difficult to take that risk.”
WATCH | What doctors are learning about COVID-19 ‘long-haulers’:
Researchers are learning more about why some people who get a mild case COVID-19 end up experiencing other symptoms for months. Doctors say these so-called known as long-haulers often have symptoms that resemble a common blood circulation disorder known as POTS. 4:10
In Atlantic Canada, Nova Scotia reported 10 new cases of COVID-19 on Tuesday, New Brunswick reported seven cases and Newfoundland and Labrador reported one new case. There were no new cases in Prince Edward Island.
There were 11 new cases of COVID-19 reported on Wednesday in Nunavut, which is at the end of a two-week lockdown period that covered the entire territory. All of the new cases were reported in Arviat, where tight public health restrictions are still in effect.
Nunavut reports 11 new cases of COVID-19, all in Arviat.<br><br>Meanwhile, the total number of active cases continues to drop, now down to 80.<br><br>GN to hold a news conference at the top of the hour. <a href=”https://t.co/hcz7NmmAs7″>pic.twitter.com/hcz7NmmAs7</a>
The Northwest Territories and Yukon had no new cases on Tuesday.
What’s happening around the world
From The Associated Press and Reuters, last updated at 9:55 a.m. ET
WATCH | COVID-19 vaccine rollout — What the experts say:
As of early Wednesday morning, there were nearly 64 million reported cases of COVID-19 worldwide with more than 41.1 million of those listed as recovered or resolved, according to a tracking tool maintained by U.S.-based Johns Hopkins University. The global death toll stood at more than 1.4 million.
In Europe, British regulators insisted that “no corners have been cut” during the assessment of the COVID-19 vaccine developed by American drugmaker Pfizer and Germany’s BioNTech, which was cleared for emergency use on Wednesday.
In a briefing after the U.K.’s Medicines and Healthcare Products Regulatory Agency became the first regulator worldwide to approve the vaccine, its chair, Dr. June Raine, said the public can be “absolutely confident” that its standards are equivalent to those anywhere around the world.
Regulators also revealed the order by which the vaccine will be rolled out across the country over the coming weeks and months, beginning next week. The U.K. has ordered around 40 million doses of the vaccine, which can potentially immunize 20 million people as two doses are required.
Residents in nursing homes and their care givers will be offered the vaccine first, followed by those 80 and over and front-line health- and social- care workers. From there, the priority plan largely follows age groups.
According to Munir Pirmohamed, chair of a medicines panel, immunity begins seven days after the second dose.
British lawmakers approved new coronavirus restrictions in England that take effect Wednesday but many Conservative lawmakers are unhappy about the economic consequences.
Russia and Germany both reported record numbers of daily coronavirus deaths, with 580 deaths reported in Russia and 487 in Germany.
With more than 2.3 million infections, Russia has the fourth-largest number of COVID-19 cases in the world behind the United States, India and Brazil.
President Vladimir Putin ordered Russian authorities on Wednesday to begin mass voluntary vaccinations against COVID-19 next week as Russia recorded 589 new daily deaths from the coronavirus. Russia will have produced two million vaccine doses within the next few days, Putin said.
In the Asia-Pacific region, South Korean officials are urging people to remain at home if possible and cancel gatherings large and small as around half a million students prepared for a crucial national college exam.
Vice Education Minister Park Baeg-beom says the 490,000 applicants so far include 35 virus carriers who will take exams Thursday at hospitals or treatment shelters. Education authorities have also prepared separate venues for some 400 applicants currently under self-quarantine.
Applicants will be required to wear masks and maintain distance from each other. They will be screened for fever and take exams separately if they have symptoms.
Pakistan reported 75 new COVID-19 deaths Wednesday, one of the highest fatalities from coronavirus in recent months, prompting government to launch a week-long campaign beginning Saturday to urge people to wear masks.
The government, however, has ruled out re-imposing a nationwide lockdown to contain the spread of the virus, which has killed 8,166 people and infected 403,311 in Pakistan.
Pakistan flattened the curve in August but currently it is facing a lethal new surge of infections.
In the Americas, U.S. health officials are pleading with Americans to follow their recommendations.
In Colorado, Gov. Jared Polis joined the nation’s top infectious disease expert Tuesday and urged people to wear masks and physically distance to help prevent stay-at-home orders and overwhelmed hospitals as cases of the coronavirus surge during the holidays.
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases and a member of the White House’s coronavirus task force, warned during a virtual news conference that Colorado is not alone in seeing a spike in cases and pleaded with people not to travel or gather in large groups.
“If you look across the United States, we are really in a public health crisis right now because we are having a surge the likes of which is worse than the surges that we all saw in the late winter, early spring,” Fauci said.
He noted that “we are likely going to see a surge upon a surge” of cases, based on the number of people who travelled and gathered for Thanksgiving and on those who are expected to shop and attend holiday parties before celebrating Christmas and New Year’s in large groups.
Colorado has been hit with a substantial spike in COVID-19 cases, with one in 41 residents believed to be contagious.
Indigenous people, health workers and those aged 75 years and older will be at the front of the line to be vaccinated, Brazil’s Health Ministry said as it unveiled a four-stage preliminary plan for national immunization.
In Mexico, the government was expected to sign a contract on Wednesday with pharmaceutical company Pfizer for the delivery of its vaccine.
In Africa, South Africa’s reported COVID-19 case numbers stood at more than 792,000 on Wednesday. The country, which has seen more reported cases than any other nation in Africa, has seen more than 21,000 deaths.
Iran, the hardest-hit nation in the Middle East, was approaching 990,000 cases of COVID-19 and 49,000 deaths.
Seven residents have died at a Scarborough, Ont., long-term care home in the midst of a COVID-19 outbreak, while 136 other residents and 66 staff members have tested positive for the virus, said the company that owns and operates the facility.
Sienna Senior Living said on its website that the current outbreak at Rockcliffe Care Community, 3015 Lawrence Avenue E., west of McCowan Road, began on Nov. 2. The home has 204 beds. It confirmed the deaths and latest case numbers in an email on Saturday.
“We are grateful to our partners and team members who are working very hard to protect the health of our residents during the second wave of the pandemic. The safety of everyone in our residences is our highest priority as the province experiences unprecedented rates of COVID-19,” Nadia Daniell-Colarossi, manager of media relations for Sienna, said in the email.
Daniell-Colarossi provided no details of the deaths, but expressed condolences to relatives.
The home is working with Toronto Public Health, Scarborough Health Network and Sienna’s physician experts, Dr. Andrea Moser, chief medical officer, and Dr. Allison McGeer, chief infection prevention and control consultant, to respond to the outbreak, Daniell-Colarossi said.
Measures to reduce further spread of the virus at Rockcliffe include:
Full contact and droplet precautions throughout the building.
Residents must remain in their rooms, including for meals.
Residents may only leave Rockcliffe for essential medical appointments.
Group programming is paused until further notice.
Only essential caregivers are permitted in the residence.
Team members are working in cohorts so they only provide care to a specific group of residents.
“Many lessons were taken from the beginning of the pandemic and in preparing for this second wave, our focus was to enhance our expertise, grow our personal protective equipment (PPE) supply, reinforce our infection prevention and control practices, invest in our residences, support the frontlines, and strengthen communications with residents and families,” Daniell-Colarossi said.
She said staff members are communicating with families through virtual town halls, telephone, email and newsletter updates to keep them up-to-date about measures being implemented to control the outbreak.
The home is located across the street from Scarborough General Hospital.
“Rockcliffe opened its doors in 1972 and, because of the cultural diversity of the 204 residents, is often referred to as Sienna’s very own ‘United Nations,'” its website said.
WATCH | How long-term care homes are battling the second wave of COVID-19:
Long-term care homes are battling this second wave of COVID-19 — which is proving difficult. Ninety-three long-term care homes across Ontario are reporting outbreaks with hundreds of residents infected with the virus. Ali Chiasson has more. 2:35
Dr. Vinita Dubey, associate medical officer of health for Toronto Public Health (TPH), said in an email on Saturday that the public health unit was notified of the first case at Rockcliffe Care Community on Oct. 30.
She said TPH took action immediately to make sure “outbreak measures” were put in place to protect residents and staff. The public health unit is continuing to investigate.
To prevent further spread of COVID-19 at the facility, TPH has worked with the long-term care home to implement the following:
Ensure twice a day screening of residents and staff remains in place to monitor for COVID-19 symptoms and to identify new infections as early as possible.
Implement physical distancing measures and cancel all group activities.
Enhancing cleaning, particularly for frequently touched surfaces.
Work to make sure that personal protective equipment (PPE) continues to be used appropriately to minimize health risks.
Restrict staff from working on more than one unit within the facility.
“TPH works with all institutions when cases are identified to ensure that prevention measures are in place to prevent further virus spread and assesses the potential for ongoing risk of transmission to staff and vulnerable residents in these settings,” Dubey said.
She said all cases and their close contacts are also told to go into isolation for 14 days.
“We are very concerned about all COVID-19 outbreaks in long-term care homes (LTCH), and their potentially devastating impact on our parents, our grandparents and our loved ones,” she said.
“We know that any infectious disease can spread easier and faster in congregate settings, but LTCHs are especially concerning for COVID-19 because these residents are generally older, more vulnerable to infection due to compromised immune systems, or chronic health conditions.”
Vulnerable people at risk when virus spreads, doctor says
Earlier this week, Dr. Eileen de Villa, Toronto’s medical officer of health, had warned that the city must take more steps to prevent people, including those in long-term care homes, from getting sick and dying due to COVID-19. Community transmission can lead to further spread in institutions, she said.
“If action is not taken we can expect to see even more cases of COVID-19, which means more illness and more death. These infections could easily spread further through the health care system, to the long-term care system, to schools and to workplaces,” De Villa said on Tuesday.
“To everyone in Toronto, I want to warn you in the plainest possible terms that COVID-19 is out there at levels we have not seen before. You should assume it is everywhere and that without proper precautions and protections, you are at risk of infection,” she continued.
“We can’t guarantee what the course of illness looks like. We can’t predict what the long-term effects might be. People recover from it who you wouldn’t expect to live through it. And people you’d think would come through it can die instead.”
Home inspected due to complaints, critical incidents
Rockcliffe Care Community is one of 100 long-term care homes in Ontario and one of 26 in Toronto with an active COVID-19 outbreak as of Saturday.
Inspectors with the Ontario long-term care ministry inspected the home due to complaints and critical incidents on July 21, Feb. 21, Jan. 20 and Jan. 7 this year.
Toronto has had a cumulative total of 34,222 COVID-19 cases as of Friday at 2 p.m., with 28,450 marked as recovered, A total of 1,448 people have died of the virus in Toronto, while 164 are currently in hospital.
The antiviral drug remdesivir should not be used as a routine treatment for COVID-19 patients in critical care wards, the head of one of the world’s top bodies representing intensive care doctors said, in a blow to the drug developed by U.S. firm Gilead.
Remdesivir, also known as Veklury, and the steroid dexamethasone are the only drugs authorized to treat COVID-19 patients across the world.
In light of the new interim data from the WHO’s Solidarity trial, “remdesivir is now classified as a drug you should not use routinely in COVID-19 patients,” the president of the European Society of Intensive Care Medicine (ESICM), Jozef Kesecioglu, said in an interview with Reuters.
Gilead contests findings
Kesecioglu said the recommendation would be discussed in a scientific paper on COVID-19 therapies that ESICM is preparing with the Society of Critical Care Medicine, another intensive care body, expected to be published by January.
The first version of the paper, released in March, said there was not enough information to recommend the use of remdesivir and other antivirals in critically ill COVID-19 patients.
Gilead, which has questioned the WHO’s findings, said in an emailed statement: “We are confident that doctors on the front lines recognize the clinical benefit of Veklury based on robust evidence from multiple randomized, controlled studies.”
ESICM represents thousands of anesthesiologists, respiratory physicians, nurses and other critical care professionals in more than 120 countries.
While doctors and hospitals are not obliged to follow its advice, its recommendation could curb the use of remdesivir.
At the end of October, Gilead cut its 2020 revenue forecast, citing lower-than-expected demand and difficulty in predicting sales of remdesivir.
The drug remains, however, widely used in hospitals. It is authorized or approved for use in more than 50 countries and was one of the medicines administered to U.S. President Donald Trump when he tested positive for coronavirus in October.
The European Union signed a one billion euro ($ 1.55 billion Cdn) deal with Gilead for 500,000 courses of remdesivir at 2,070 euros ($ 3,220 Cdn) each, days before the Solidarity results.
The deal does not oblige European countries to buy remdesivir, but governments decided to place large orders even after the Solidarity results, with Germany buying a big stock in November, saying the drug was useful, especially early in the course of the disease.
WATCH | Remdesivir does little to help COVID-19 patients, WHO study says:
A clinical trial by the World Health Organization finds that antiviral medication remdesivir has little or no effect on length of hospital stay or mortality in COVID-19 patients. Dr. Srinivas Murthy weighs in on what this could mean for treating the virus going forward. 2:04
Kesecioglu said there was not enough data available about when remdesivir might be effective or for which patients, leading to the decision to discourage its routine use in intensive care.
This means doctors should use remdesivir only occasionally and not as a standard treatment for COVID-19 patients.
Because of remdesivir’s unclear benefits, the critical care department at the University Medical Center of Utrecht in the Netherlands, where Kesecioglu works, has not used it to treat COVID-19 patients, he said.
Possible side effects
Ten months into the pandemic, a debate continues to rage in the medical industry about which drugs are best to treat hospitalized COVID-19 patients.
Remdesivir has potential side effects on the kidneys, according to data shared by Gilead with the European Medicines Agency, which is assessing its possible toxicity.
Arnaud Hot, head of medicine at Edouard Herriot hospital in Lyon, France, told Reuters that some patients at his hospital had experienced kidney injury and so it was no longer using remdesivir, except in rare cases.
Kesecioglu said convalescent plasma, which is also experimentally administered to some COVID-19 patients despite not having been approved, was also not recommended by ESICM for routine intensive care use, as its benefits were unclear.
He said the potential side effects of convalescent plasma — the liquid part of blood extracted from COVID-19 patients — were also not clear
In contrast, Kesecioglu said dexamethasone was recommended for use in hospitalised patients because there was sufficient information on its efficacy.
While living in long-term care for nearly four years, Chyanne says she’s seen bruises and injuries on her fellow residents.
She alleges poorly-trained, stretched-thin staff struggle with routine tasks like safely moving patients.
And she’s photographed her home’s rotation of food to show how bland it is — some of the dishes in styrofoam trays feature fried meat; others include pre-packed fruit cups and muffins, with a single hard-boiled egg.
There’s also “a lot of death,” added Chyanne, whose identity CBC News is protecting for her privacy and safety.
“The person who’d ask what I did for the day, what movie I watched. They were like my grandmas and grandpas — 299 of them,” she said in a recent interview.
“I remember all the residents that die,” Chyanne added. “Because I’m young.”
Chyanne is 28 years old.
Soft-spoken with a sharp wit, the Toronto resident suffered a spinal injury four years ago. She has been living at Midland Gardens Community Care in Scarborough since 2017.
Not by choice, she says, though she knows her unusual circumstances give her a window into a system rarely seen up-close by anyone beyond staff and residents who are mostly elderly.
That makes it the home with the most violations in Toronto — the third-highest in all of Ontario, behind Hogarth Riverview Manor in Thunder Bay and Earl’s Court Village in London.
Chyanne wasn’t surprised by the findings.
“I’ve been trying to get out of there since 2017,” she said.
85% of Ontario homes repeat offenders
On a damp, overcast afternoon, Chyanne has parked her electric wheelchair on a paved pathway in a park near the home, hoping for a bit more privacy than her bedroom provides.
She explains how someone so young wound up in long-term care: Chyanne grew up in the child welfare system, without family support. Then, in 2016 at the age of 23, she injured her spinal cord when the TTC bus she was on crashed, sending her flying.
Her injury, coupled with a previous epilepsy diagnosis, means she not only needs a wheelchair, but also extra support for daily tasks like bathing.
That support, she says, isn’t always available at Midland Gardens, where she alleges staffing shortages and neglect were often the norm in recent years.
Marketplace‘s analysis found that between 2015 and 2019, the home had various repeat violations of the LTCHA, which sets out minimum safety standards that every care home in Ontario must meet.
Those repeat violations included infection control issues, injuries due to falls, medication errors or storage issues, abuse, and neglect.
But Midland Gardens has never faced any consequences from the province.
The full Marketplace review looked at 10,000 inspection reports, and found more than 30,000 “written notices,” or violations of the act.
It also revealed that of the 632 homes in the Ontario database, 538 — or 85 per cent — were repeat offenders, but there are virtually no consequences for homes that break that law repeatedly.
Home has taken ‘critical steps’ to improve, company says
Sienna Senior Living, the company that operates Midland Gardens and owns more than 40 other long-term care homes in Ontario and British Columbia, maintains “critical steps” have been taken to improve operations and ensure residents and staff are as safe and healthy as possible.
Those efforts include enhancing staff expertise, growing a personal protective equipment supply, and reinforcing infection prevention and control practices, noted spokesperson Swaraj Mann in a statement provided to CBC News.
“As an added measure, we continue to meet weekly to review all areas of compliance and we have assigned a compliance lead who is collaborating closely with the Ministry,” Mann said in an email.
Those preparations, taken over the past few months, were meant to get ready for the second wave of COVID-19.
While the Marketplace analysis looked at violation data up until the end of 2019, the start of this year marked the beginning of the pandemic, and the arrival of the new coronavirus in hundreds of long-term care facilities.
42 resident COVID-19 deaths
Midland Gardens experienced 42 resident deaths in the first wave, according to Ontario’s figures.
“When it first came into the home, I felt like I was in a fishbowl, waiting,” Chyanne recalled. “I knew I was going to get it.”
And she did.
In early May, Chyanne said she lost her sense of smell and taste — early warning signs of the disease. But she alleges staff didn’t take it seriously at the time, and weren’t adequately equipped with personal protective gear.
On May 17, she had a fever that spiked to more than 38 degrees, prompting a nurse on-site to call an ambulance.
Chyanne wound up in a hospital for several weeks, including a stint in an intensive care unit, hooked up on oxygen but, to her relief, never a ventilator. She was discharged on June 10th.
Now, months later, she’s still coping with breathing issues, and the day-to-day challenges of living in a home marked by so much death.
When asked by CBC News about Chyanne’s concerns over staffing, protective equipment, food options, and an overall lack of proper care at the home, Mann said Midland Gardens is “fully staffed” with adequate levels of personal protective equipment, makes a wide variety of meal choices available to residents, and has remained out of an outbreak situation since July 17.
‘No tolerance’ for abuse: LTC minister
According to Dr. Samir Sinha, director of geriatrics at Sinai Health, part of Toronto’s University Health Network, longstanding issues in the long-term care system go far beyond any individual home.
“Before this pandemic, long-term care was really struggling in Ontario, in the sense that it’s a really underfunded system,” he said.
While the homes are “highly regulated,” they’ve long struggled with staffing shortages, Sinha said, and the challenges of caring for elderly residents with complex needs, including dementia.
He also said there has been criticism of the provincial inspection process for years, both before and after Ontario scaled back from having at least one thorough annual inspection to a largely complaints-based approach in 2018.
Marketplace host David Common called into a news conference with Ontario Minister of Long-Term Care Merrilee Fullerton earlier this week to ask her to speak to the fact that despite orders that are available to inspectors, homes still appear to commit the same violations repeatedly.
“There’s no tolerance whatsoever for negligence or abuse,” she said, noting that she feels her government is prioritizing serious offences in their inspections.
“They must be dealt with in a fulsome way.”
Chyanne isn’t sure that’s happening.
Bundled up in a blanket, with her face mask pulled down to take a sip of Starbucks strawberry-coconut drink, she reflected on her unique journey from being an accident victim, to a 28-year-old long-term care resident, to a whistleblower trying to call attention to what she sees as abuse and neglect.
She’s desperately hoping to leave Midland Gardens, and is stuck on a waiting list for another home better suited to her needs — and age.
In the meantime, Chyanne plans to keep fighting for “accountability.”
“I’ve been tasked with something that is so hard to accomplish,” she said. “The government has known for decades about the problems in these homes.”
It’s a sunny fall day but there’s a chill in the air, so Laura Meffen grabs an extra layer before she and her son head to their van, smiling and balancing bags full of toys and snacks. They’re off to see Meffen’s 22-year-old daughter Emily, who lives in a care facility a few kilometres away.
The home recently allowed outdoor visits, for about an hour each time. Meffen chases away the thought of how quickly that time goes by.
“I try not to think of the ending,” Meffen says, her eyes watering. “I think of the joy, the laughter, the fun we have. I always make the visits fun for her. And we just try not to think of the end.”
Like many families and caregivers with family members in care settings, the pandemic has taken an emotional toll on Meffen. From full lockdowns to the more recent restricted visits, many like Meffen have spent the entire pandemic desperately trying to get closer to the ones they love.
WATCH | The feature about trauma caused by having family members in long-term care, Sunday Oct. 18 on The National at 9 p.m. ET on CBC News Network and 10 p.m. local time on your CBC television station. You can also catch The National online on CBC Gem.
Emily has lived at Participation House in Markham, Ont., for the past two years. Participation House is a care setting for adults with severe disabilities. Emily has a neuro-degenerative disease and requires round-the-clock care.
When the pandemic hit the home in April, Emily got infected and so did Meffen. They’ve recovered, although Meffen still battles fatigue and a cough.
Her bigger fight now is against the agonizing uncertainty of what comes next.
“We went through a lot with COVID, it was traumatic. It really was. So I understand not being able to go in, but I need to be with my daughter. I need to make sure she’s OK. I need to have her know that I’m there, that I haven’t abandoned her.”
Emily squeals in delight as a staff member wheels her out to meet with her mother and brother under a gazebo on the home’s grounds. She has limited verbal skills, but there’s no mistaking her joy — and her confusion, too, as she reaches out for a hug and no one leans in. Meffen has to keep her distance.
And it’s tearing her apart.
“It’s the hardest thing I’ve ever had to do, not being there with her and being able to comfort her like a mother can only comfort a daughter. It just, it devastates me.”
‘She needed love and attention’
For Marla DiGiacomo, the pandemic has been an exhausting battle. DiGiacomo helped organize one protest after another in front of Extendicare Guildwood, a long-term care facility in Toronto where her 86-year-old mother Helen, who has dementia, has lived for the past nine years.
DiGiacomo’s mother also got COVID-19 but had no symptoms, although she was weak.
DiGiacomo fought hard for the right to see her mother, and two months after the lockdown, she finally did. It was a window visit, and the sight of her mother devastated her.
“When we first saw her, she was in such terrible condition,” DiGiacomo says. “She had lost 30 pounds. She was unresponsive.”
DiGiacomo went back to the home the day after that first window visit during mealtime, and saw a staff member leave a tray of food at her mother’s bedside. Her mother struggled to get to it.
“I was outside the window and she was trying to get the food with her hands. That’s when I just lost it. I realized she hadn’t been fed — nobody was helping her, assisting her. She was incapable of feeding herself.”
DiGiacomo says she immediately started to advocate for better care, and to be allowed inside to be with her mother. She argued her mother needed not only nutrition, but was starving for affection too.
“I approached them and said look, my mother is lacking human contact. She needs affection, attention, and touch. That’s what she needed as much as food. She needed love and attention.”
It took weeks of relentless pressure before DiGiacomo was finally allowed inside in August.
Since then, Ontario has issued a directive clarifying that essential visitors include caregivers. But directives can change, and DiGiacomo is afraid of being shut out again.
The impact on her mental health, she says, has been enormous. She says she cries often, can’t sleep and feels a constant sense of dread. There’s a raw agony in her voice, even now.
“It’s taken a large toll. I’ve aged, you know? And I’m scared. I’m scared that she’ll get it again. I’m scared of what will happen there.”
Ensuring caregiver rights
The trauma caregivers have experienced and the toll taken on them has been eclipsed by the brunt of illness and deaths in long-term care settings since the pandemic, but that doesn’t make it any less concerning.
“Over my 10 years of studying caregiving, I’ve never seen anything like this kind of burden or trauma placed on caregivers,” says Vivian Stamatopoulos, an associate teaching professor at Ontario Tech University who specializes in family caregiving.
“It’s tantamount to a form of post-traumatic stress caused from forced helplessness.”
Stamatopoulos is an outspoken critic of systemic failings in long-term care, especially chronic staff shortages. She says prior to the pandemic, families filled gaps in care, often visiting during mealtimes to make sure their loved ones were eating and to make sure they were safe. It’s why Stamatopoulos says it was so hard for them to be forced out by COVID-19.
“That kind of trauma — of knowing that you can help, and you’re available to help and you want to help, and you had been helping for God knows how long before the pandemic struck, however long that loved one was in care. That is the story that really hasn’t been out there, and which should get out there, because it’s a very serious level of trauma.”
Restrictions in most care settings have eased since the initial pandemic lockdown, but policies vary from home to home and the fear is that the access won’t last.
Stamatopoulos’s outspokenness has turned her into an accidental advocate, she says. Dozens of families have reached out to her on Twitter, and she’s supporting them as they pressure the Ontario government to pass legislation that would guarantee caregivers access at all times. Bill 203, the More Than a Visitor Act, has been referred to the Ontario Standing Committee on Social Policy.
Families across the country are rallying for similar laws.
“We really need to get ahead of this and have this in law,” says Stamatopoulos. “Ontario right now is so close to setting the precedent. I think it will really push the needle forward in terms of caregiver rights.”
A law would clear the uncertainty, and give caregivers the peace of mind of knowing what to expect even as pandemic conditions change.
Back in Markham, Laura Meffen’s visit with her daughter Emily is winding down. She packs away the toys she brought with her and tries to sound cheery as Emily grows quiet, as she does at the end of every visit. Emily’s home hasn’t guaranteed indoor visits when it gets too cold to meet outside. With COVID-19 cases on the rise again, Meffen is afraid of more restrictions. Afraid every visit could be the last one for some time.
The hardest part for Meffen is when Emily wants to know when her mother will come back.
“And I can’t tell her. I don’t know when I will be able to see her again. I don’t know when I’m going to be able to give her a hug again, and be in the same room with her, and be able to take her home. And that is heartbreaking. It’s heart wrenching.”