Margaret* was someone.

Someone who loved music. Someone who was a precious and valued mother and grandmother, adored by many. Someone who was once a foster child, and then became a foster parent to dozens of vulnerable children. Someone who welcomed single moms and their babies — some for years at a time — into her Scarborough home.

To Margaret, family included anyone who was in need.

And she was someone who did not deserve to live and suffer her last few months locked away in a long-term care home, separated from her family and denied basic care.

That’s how her daughter, Elizabeth, describes her mother — the woman she cared for since she was 18 years old, with whom she shared her home, while raising her own family.

But now Margaret is a statistic, along with hundreds of others of Canada’s elderly. While she did not die from COVID-19, Elizabeth firmly believes the decline in her mother’s health since last March and eventual death on Sept. 15, at age 92, was due to minimal and over-worked staff at her Eastern-Ontario long-term care home, a lack of prompt medical assessment and treatment, and the emotional toll of the home’s isolation policies, which barred Elizabeth — her essential care partner and legal Power of Attorney (POA) for personal care — from visiting, advocating and caring for her.

There were 30 residents in Margaret’s wing, and only one or two personal support workers assigned at a time.

“Our residents rights and my POA for care were thrown out the window,” says Elizabeth. “Locking us out led to reduced care and caused irreparable damage physically and emotionally to the residents and the families that love them.”

She realises the issues are complex. Lock-downs were necessary to keep residents safe from the virus, she says. But, she maintains, at least one essential family member/POA should have been allowed to visit — and with proper staffing, set standards of care, and proper pandemic planning and procedures, the isolation policies would not have been so devastating.

“It’s essential to life to have something to look forward to. Life and family is what makes you want to be alive,” she continues.”We will never forget the difficulties that we and our mother endured during this pandemic and the experience of being isolated, ill and denied access. My mother’s death was not brought on by natural causes.“

Since the spring, almost 2,000 residents (and eight staff) in Ontario long-term care homes died from COVID-19, amounting to 75 per cent of all coronavirus deaths in the province, and just over half of all care homes experienced an outbreak.    

Unfortunately, a repeat of the first wave of outbreaks, lock-downs and deaths is now happening as the province endures a second wave of COVID-19. As of Oct. 25, there were 82 Ontario long-term care homes with outbreaks.

This is the story of Margaret and Elizabeth, from a recent interview with JOURNEY Magazine:

Margaret entered her long-term care home eight years ago. Elizabeth gave musical performances regularly at the home, visited her mother often, and was heavily involved in her day-to-day life.

When COVID-19 hit, Margaret, like others, was locked in her room, unable to receive visitors. At no time have there been any cases of COVID-19 at the home.

“So, it was very painful to be blocked from being so involved in her life and she in ours when COVID hit,” said Elizabeth. “It was the only thing she lived for. Her family was the most important thing in her life.”

Maragaret’s mind was good and she had a phone, which was a real blessing, said Elizabeth, as many residents do not. When Elizabeth could not visit, she started documenting through phone calls and live chats what Margaret was eating, the pills she was taking, and when she was getting showered, among other things.

Soon, however, she started noticing a decline in Margaret’s’s health, and over the course of five months things got steadily worse. There were painful sores and infected blisters on her feet because she wasn’t receiving the normal foot care for which her family paid extra. Elizabeth noticed her mom’s legs were numb and she had difficulty standing — the only walking she was doing was from her reclining chair (where she sat and slept due to pain) to the toilet. She also realised she was not receiving the proper amount of pain medication. At one point, Margaret was crying in pain on the phone for two hours. When Elizabeth called the nursing station to try and get help, she said they told her they were too busy with other residents and hung up.

There were 30 residents in Margaret’s wing, and only one or two personal support workers assigned at a time.

“I was becoming undone. I couldn’t trust what they were telling me and I couldn’t help.“

“I was trying to show she was in distress and needed help,” said Elizabeth. “If I hadn’t been able to call her, I would have lost my mind. I was becoming undone. I couldn’t trust what they were telling me and I couldn’t help. This law that kept me from her was inhumane. It was beyond my understanding.”

By June, Elizabeth was informed that her mother was refusing to shower. She couldn’t figure out why, until she discovered that her mom had been left sitting in the cold in the shower, needing assistance to get out, but not knowing when a worker was coming to fetch her. Refusing to shower was her way of making sure it wouldn’t happen again.

“I asked for a medical assessment, a care conference, and numerous telephone conferences with admin,” said Elizabeth. “I advocated consistently for her. I called every government department and any agency that I thought might be able to help.”

From January to June, Margaret had not seen a doctor, said Elizabeth. Finally on June 10, she had an appointment with the doctor employed by the home, but Elizabeth was not allowed to be present or listen via speaker phone. The doctor even told her mother not to answer the phone during the appointment, she said, and the home and doctor denied there was anything wrong with her feet or pain regimen.

As her mother got sicker and sicker, Elizabeth ended up taking her to the Peterborough Regional Health Centre where she was diagnosed with chronic renal failure and a urinary tract infection. All in all, Elizabeth took her three times to the hospital. Throughout her mom’s stay there, Elizabeth was allowed to be with her, since the hospital recognised her POA for care, she said. On Aug. 15, they celebrated her 92nd birthday, sharing their love of music.

“She was so happy we were there together. She was in isolation with chronic renal failure — but she was with her daughter,” said Elizabeth.

It was at that point that Elizabeth made the decision that Margaret would not be returning to her long-term care home unless Elizabeth received written access to her room to assist in her care. This was not granted, so Elizabeth gave up her long-term room and started making plans to bring Margaret to her own home. One day before she was set to arrive, though, Margaret died in hospital.

“I got to have hours and hours with her and to comfort her in the hospital, which we wouldn’t have had in the home. I never did get access to the long-term care home.”

Numerous advocates, including Elizabeth, are calling for the following government-mandated changes in long-term care homes in Ontario:

• increased ratio of personal support workers and nurses to residents
• job security, access to full-time work, and better pay with benefits for personal support workers and other care workers
• increased standards of care for all care homes: four hours of hands-on care per resident, per day (see Time to Care Act below)
• care plans that include and allow admittance to essential care partners, especially POA for care.
• whistle blower protection for employees
• accountability when care is not provided
• prioritizing of virus testing and results for long-term care homes, creation of a dedicated infection control lead, enhancement of inspections and compliance with infection control measures.

“I will not forgive or forget this, and I pray everyday for those in positions of authority to mandate changes,” said Elizabeth. “Without there being laws, we’re not protecting people.”

The government didn’t think to anticipate the problems caused by the pandemic, explained Elizabeth. They didn’t realise how much ‘family’ was needed and the role they played helping to provide care, she said. Before the pandemic, the same issues were there – the staff was over-worked and under-staffed — but it wasn’t as obvious. Once the families were no longer allowed in, the situation rapidly deteriorated.

“It wasn’t apparent when we were helping. The volunteers and families were making it function. It’s a huge work force that came in every day and helped with feeding and changing. When they blocked all those people, care declined,” she said.

She said she filed a complaint with the Ministry of Long-Term Care in the spring regarding her mother’s care, but, as yet, has not received a reply. She notes that many residents and families don’t complain, because of fear of reprisals from the homes.

“It’s just all wrong. My mind and soul will never be the same.”

“I know my mom is out of pain. My family wold like me to let all this go, but I don’t feel like I can. My natural reactions of grief are frozen because it’s not over or resolved. Caring for people was a thing that my mom believed in, and she would have wanted me to speak up. She wouldn’t want me to stay silent.”

“It’s just all wrong. My mind and soul will never be the same.”

*Names have been changed to protect identity, due to fear of reprisals.

Time to Care Act:

On Oct. 28, Bill 13, the Time to Care Act, will go to second reading in the Ontario legislature. It would legislate an average of four hours of hands-on care per resident per day in long-term care. But help is needed to ensure it passes second reading. Go to cupe.on.ca/passbill13/. On this page you will find a tool to connect you directly with your MPP, including a draft script that you can use for reference.  People from across the province are needed to make calls and put pressure on all MPPs to vote in favour of Bill 13 at second reading. The crisis in long-term care has never been more dire, but the power is in our hands to improve conditions for residents, as well as front line workers. (https://cupe.on.ca/passbill13)

By Melodie McCullough

Photo credit: Bruce Tang (unsplash.com)

Dedicated to the memory of Maybelle Boyd McCullough, 1924 – 1993, who died while a resident in an Ottawa, Ontario, long-term care home, at the age of 69.