Alberta’s wicked continuing-care system must be reformed

I was waiting for the results of a COVID-19 test when the long-term care home called to say my mom didn’t have long to live.

It was April 2020, about a month after pandemic restrictions began. Back then, it could take days to get test results back.

So, while my mom’s life ebbed away, I was trapped in my home. She was five minutes away by car, but a world away. So near, but so far.

My mom, Shirly Inigo-Jones, was in the late stages of dementia. She couldn’t talk. I don’t think she understood what anyone was saying any more, but she loved being with people.

If I held her hand while she was falling asleep, her smile would light up the room. When I pushed her around in her wheelchair, she’d wave and smile at everyone we passed. The wonderful staff at the Carewest Colonel Belcher facility said she waved like the Queen. They’d stop, give her a hug and a kiss and call her “Mama.”

Shirley Inigo-Jones. 

That was before the pandemic. Before the virus swept through continuing-care homes and took far too many lives.

Mom didn’t die directly from COVID-19, but I believe her death was indirectly due to the virus.

Before the pandemic, mom had visitors every day. I was with her three or four times a week. My wife, my brother and his girlfriend would visit. But when the restrictions came, all visits stopped immediately.

Front-line staff were overworked before the pandemic, but as they fought to care for those who got sick, their workload became unimaginably tough. There was simply no time.

For the first month, I’d go to the ground-floor window of mom’s room to look for her. She wouldn’t have recognized me through the window, but seeing her would, at least, give me some comfort.

She was almost always in bed when I called around, not out and about in the facility. Alone in her room for endless hours, my mom died of loneliness.

She hung on longer that expected. A nurse called me and said: “She’s waiting for you.” Mom didn’t want to go without seeing me. I felt like I had betrayed her when she needed me the most.

Thankfully, my brother and wife were able to take turns with her. My brother held her hand as she breathed her last breath. I wonder how many passed away without even that little bit of comfort.

I had to say goodbye to my non-verbal mom on the phone. “It’s OK mom. You can go now. Go and be with Granny and Gramps. I love you.”

That is not a conversation you want to have over the phone.

I can live with that pain, even though it swells up and threatens to overwhelm me from time to time. What causes me more pain and anger is seeing us learn nothing from the pandemic.

For a long time, it has been obvious to anyone who has had a loved-one in continuing care that the system is broken.

My mother was moved five times in five years, which is terrible for someone with dementia. Each facility would accept mom – until her condition declined. At that point caring for her became too expensive and inconvenient and she was booted out. Then there would be a scramble to find a new place, pack and move her, try to get her settled in unfamiliar and frightening surroundings.

The profit motive at corporate-run continuing care facilities and the need to cut costs at private non-profit facilities always overrode the need for mom to have stable care. We only found that stability when mom ended up in a publicly run home, the Colonel Belcher.

Research, including this report from the Parkland Institute at the University of Alberta, has shown that residents get more hours of care in public facilities than in private for-profit or not-for-profit ones.

The corporate presence in continuing care is so great that it has become the model for how all homes operate. In their striving to cut costs and boost profits (which go to shareholders and executive bonuses), they have created a wicked staffing model.

Yes, wicked. I choose that word deliberately. Staffing in long-term care means that very few front-line workers get full-time hours or decent benefits. In fact, the shortage of hours and low wages force many of these dedicated caregivers to hold down two or three part-time jobs.

Staff turnover, particularly in private facilities, is often high, which leads to lower levels of care. Low wages, poor benefits, lack of sick days, lack of job security, exhaustion from working multiple jobs – all these are the result of the current staffing model.

What else can it be but wicked when it’s clear that this model leads to inferior care? To pursue a course that you know will hurt frail patients is abuse. To treat workers with that kind of contempt while calling them heroes is abuse.

Yet, Alberta’s UCP government has decided that despite the blatantly obvious failings of continuing care before and during the pandemic, it will continue with this approach. Sadly, the NDP did the same when elected back in 2015.

Come the next provincial election, Albertans should demand that reforming continuing care is a top priority. The only reform that will work is to bring all continuing care under the public umbrella. It’s the only way to ensure decent standards  for our elders and for workers.

When it’s your turn to be old and frail, you’ll pray that we got this right.