Support us at commonspodcast.com

In the final episode in our series about the COVID-19 pandemic and the crisis in long-term care, we’re going to tell you a different kind of story. A story of hope. About how the people we treat as disposable, can have lives of joy and dignity. And about one place where they were given exactly that.

 

COMMONS: Pandemic is currently focusing on how COVID-19 is affecting long-term care in Canada.

Featured in this episode: Moira Welsh (Toronto Star), Mary Connell 

 

To learn more:

“The Fix” by Moira Welsh in The Toronto Star

“To Fix Long-Term Care, Homes Must See Residents As People, Not Patients” by Sherina Harris in HuffPost

“We Must Do More To Protect People With Dementia” by André Picard in The Globe and Mail

 

Additional music from Audio Network

I Am a Man Who Will Fight for Your Honor” by Chris Zabriskie, adapted.

 

TRANSCRIPT:

 

EPISODE 12 – “THE MOST DANGEROUS STORY”

 

COLD OPEN

[ARSHY MANN]

It’s Glasgow, 1941, the middle of the Blitz. An eight-year-old boy is walking down the street. The boy is on his way to his grandmother’s house for lunch when he hears the sounds. 

The air raid sirens blaring, the whirring and clanging of planes in the sky, and the crashing of bombs in the distance. He’s terrified, more terrified than he’s ever been before. He knows he needs to get somewhere safe. To his Granny’s door.   

So the boy starts to walk faster, trying to reach his grandmother’s house as quick as he can. He goes by door after door. They all look somehow… wrong. He doesn’t even recognize where he is. And his legs aren’t moving like they should. He’s slow, stumbling. But all he can do is put one foot in front of another, keep moving forward.

He passes more doors, and they all look like the ones before. He can’t remember how long he’s been walking, but he can still hear the sounds as sharply as before. The sirens. The planes. The bombs. The need to find his grandmother’s door, to be safe, is rising inside of him until it’s the most urgent thing he’s ever felt.

He walks forward and sees a door to his side. That’s not the one. So he walks even further, until the next door. Not it. He turns, and he sees another door. It’s just the same as before. He hears those terrifying sounds in the distance. He keeps going. 

He walks forward and sees a door to his side. That’s not the one. So he walks even further, until the next door. Not it. He walks forward and sees a door to his side. He turns, and he sees another door. Not it. It’s just the same as before. He passes more doors, and they all look like… He hears those terrifying sounds in the distance. It’s not the one. He walks forward and sees a door to his side. Not it. He knows he needs to get somewhere safe… Slow, stumbling. To Granny’s door. That’s not the one. He turns and sees another door. Not it. It’s just the same as before. He walks forward and sees a door to his side. He keeps going.

 

That’s the terrifying scene that Mary Connell thinks was playing out in her father’s head every day. 

 

[MARY CONNELL]

So, my name is Mary Connell. I’m a registered nurse and I am the dementia advisor for the regional municipality of Peel. My father had had dementia for 16 years, but he got to a point where no matter how hard we tried, we weren’t able to keep him at home. 

 

[ARSHY]

Eventually, Mary’s family had to send him to a long-term care facility. And there, he did the same thing, all day, every day. He would walk. He walked in a circuit inside the home, past all of the doors, looking for… something.

 

[CONNELL]

During the war when they bombed Glasgow, my dad got caught on the way home from school at lunch in the bombing. And, very often with dementia, some of the memories that are the strongest are the most traumatic. So my father used to walk all day looking for my grandmother’s front door.

 

[ARSHY]

From the outside, he would have looked like an elderly man shuffling around, walking to nowhere. But inside his head, Mary’s father was living through one of the scariest moments of his life, over and over again, day after day.

Most people in long-term care end up there because of dementia. And the way the system is built now, they’re often condemned to relive their worst experiences without any comfort or affection.

But this isn’t going to be another story about how broken the long-term care system is. For our last episode of this season of Commons, we’re going to give you something different: A story of hope, about how things can change. And about one place where they changed for the better.

I’m Arshy Mann and from CANADALAND, this is Commons.

 

PART ONE

[ARSHY]

Some 9,000 people have died in Canada during the first wave of this pandemic. The vast majority died in long-term care. 

So what happens now? Yes, we need to brace for a possible second wave. But how do we transform this system? How do we honour the lives of those thousands of human beings? 

Too many Canadians now know about the hardships and horrors that staff and residents faced even before the COVID-19 pandemic. We can’t go back to the way things were. Given what we’ve learned making this series, there are some obvious next steps. First, we need to invest heavily in homecare. We need to stop building new facilities and begin the process of deinstitutionalization. People need to be allowed to stay in their homes and still have access to the resources and supports that they require.

But as we do that, we need to think about the needs of people who, for one reason or another, will continue to live in long-term care for the foreseeable future. What can we do for them?

Moira Welsh is a veteran investigative reporter for the Toronto Star. 

 

[MOIRA WELSH]

And I have written about long-term care for almost 20 years now.

 

[ARSHY]

After her first blockbuster report exposed the appalling conditions in Ontario nursing homes in 2003, politicians said that this was unacceptable. They promised a revolution. 

 

[WELSH]

There was no revolution. The problem is that, over time, people get busy with other issues. And they do some work and they, you know, create some legislation, and it all sounds good. But then everyone goes away. And that is what has happened time and time again with this issue. 

 

[ARSHY]

Moira and her colleagues at the Toronto Star have continued writing similar stories, year after year. But it was a few years ago that she embarked on a different kind of project. One of the first people she spoke to for it was Bill Thomas, a long-term care reformer in the United States.

Here he is, speaking to Moira in a mini-doc made by the Star in 2018.

 

[BILL THOMAS]

The Toronto Star could do a story, a terrible, terrible, heart-wrenching story about long-term care, 365 days a year.

That’s actually not the most dangerous story. What’s most dangerous to the status quo is reporting that shows that it can be different, that there can be joy, that there can be love, that there can be dignity, that there can be privacy, that older people don’t have to be denied those things just because they’re living in this particular building.

 

[WELSH]

Write the positive story and you will actually create more change. It was just one of those moments where you… Somebody just says something and it makes you see the world completely differently. 

 

[ARSHY]

And for Moira, telling that story, that dangerous story, started with a single unit, in a single long-term care home outside of Toronto: the Redstone unit at Malton Village. Redstone is a dementia ward and, on paper, it’s a perfectly good long-term care facility. It did well on its inspections, the staff were trained professionals and the facilities were modern. 

Here’s Mary Connell again. 

 

[CONNELL]

So when you first went into Redstone, I think probably most families that visited other homes would be impressed by thethe physical appearance because it was modern looking and very clean, and had lots of natural light. 

 

[ARSHY]

All of the residents were given three meals a day, at the same time every day. They were provided with medical care. There were scheduled activities. Sometimes friends or family would come to visit and to help care for them. 

Redstone was an efficient and professional place. And they had the documentation to prove it.

 

[WELSH]

And what I saw was from the Ministry of Health inspection reports on the actual home, Malton Village. It was a pretty good home. They had some issues, but generally speaking, it would have been considered probably one of the better homes in Ontario.

 

[ARSHY]

But when a man named David Sheard came to assess Redstone in 2016, he saw something completely different. Sheard’s team did an audit that looked at the level of quality social and emotional interactions between staff and residents. How often did a staff member stop to chat with a resident? Did they joke around or have a cup of tea together? 

In other words, they were trying to quantify something we’d normally think of as kind of mushy and un-medical. Namely, if the residents were being treated like human beings.

Here’s David Sheard on TVO’s The Agenda talking about what he found at Redstone.

 

[DAVID SHEARD]

I found what I found in most long-term care homes in most countries: That the staff have got lost in process, policies, procedures, systems. They tap away on computers. They’re busy. They’re working their socks off, but they’ve lost the plot of why we’re all here.

 

[ARSHY]

Sheard’s scale would rank homes from 1 to 10, with one being the best, and ten being so bad that it would qualify as abuse and neglect. Redstone was at a 9. According to Sheard, if Redstone had been any worse, he would have felt compelled to call the police. 

 

[CONNELL]

When you went in, it was very sterile. The walls are painted that magnolia that everybody paints their walls. You know, the dining room just had tables that were separated. You could smell steamed food. There was certainly the smell of urine or stool.

 

[ARSHY]

It was a cold, colourless place. But, most importantly, the staff were constantly rushing from spot to spot, from one problem to another. The only time they stopped was when they would head over to a computer to document what they’ve been doing, their backs turned to the residents.

And this wasn’t because they were heartless. This is how the system is designed. 

 

[CONNELL]

They would see people in distress and they couldn’t do anything about it because they had tasks to complete. They had to get on to the next task,

 

[ARSHY]

The residents were left to languish. Residents like Inga Cherry.

 

[WELSH]

Enga was quite a lady. She was a real fashionista in her day. She would sit at the end of this long beige corridor and stare out the window and watch the cars drive by. This was her existence. 

And then she would basically hide out in her bedroom and then she would come for lunch or dinner, always at the same time, on schedule. Inga was just a larger-than-life woman, and I remember speaking to her grandson, and he and his mom… They were quite sad to see her sitting in this chair, staring out the window for most of her days.

He felt like she was looking out at the cars, driving along the road, imagining herself going for a long drive because she used to take her car and go down, um, shopping for clothes in New York City. Uh, or she would drive her daughter up to Algonquin Park and they would go hiking. And he was really thinking that she was just, sort of, yearning for her freedom. 

Because, she used to say… She would tell everyone, “I’m in a cage. I’m in a cage.” 

 

[ARSHY]

Other residents would spend all day sitting in a chair at the end of a long hallway, or watching TV by themselves in a little room, or just absently staring at the floor. Four of the residents simply walked in a circuit through the home, past every door, for hours on end. 

And that monotony, that boredom, led to their cognitive decline getting worse. 

 

[WELSH]

And this is where people… They start to… They decline. But they also become frustrated. And who wouldn’t be? I would grow frustrated as well. And that’s where they have what the system traditionally calls “behaviors.”

Experts now say that the lashing out, or that, you know, the violence that might erupt, or the sort of endless walking in circles… Those are the result of lives of boredom, with absolutely no meaning. So we saw all that in what was considered by many to be a really good Ontario home.

 

[ARSHY]

After that devastating audit, Peel Region decided that they wanted to try something different. They were going to turn Redstone into an experiment. In this one unit, in one long-term care home, they would try an approach that put the feelings of the residents before everything else. 

Sheard is a pioneer in something called emotion-first care. And his particular model, which he called “Butterfly,” had caught the eye of Peel’s long-term care administrators. But this pilot project would require more money, and they had to go to the Peel Regional Council.

So, on March 30th, 2017, David Sheard spoke to the councillors. 

 

[SHEARD]

People with dementia are not remembering their memories. They’re living their past memories, but they’re living them like that. Their past emotional memories are coming in seconds.

Neuroscience has proved that our emotional memories are still deepest in the brain and, therefore, dementia gets them last. So, when everything else goes, and you don’t know the name of this anymore, you’ll know the tough moment you miscarried, the moment you were fearful your husband might hit you, the moment you actually felt your daughter disappear from your life. Those emotional memories will come in seconds with dementia. And imagine not knowing them and no one reaching you.

 

[ARSHY]

And then Sheard made the case for his alternative.

 

[SHEARD]

What does the Butterfly model take it to? A dream where people with dementia are loved and we get love back into care. We give staff permission again to stop being detached, when people are busy in their own ways that you don’t always understand. But, you know it’s linked to something in their past. But to be busy, you need a place full of the stuff of life, not an empty building called long-term care. 

We want families to realize, yes, you have been losing your relative to dementia. Yes, that is painful. But there is a bridge you could cross. And if you cross the bridge into the person’s dementia reality, it will be hard to lose them as they were. But you can learn to relive them as they are again now. And if you do, you will be left with positive, loving memories after they’ve gone. And that is a choice. We have to be able to offer families to say “There is a way through this pain. There is a way to be left with the love that was different in reaching your family member.”

Putting being loving is at the center of everything in the Butterfly movement. And I’m honored that the region of Peel is going to pioneer this first in Ontario. Thank you. 

[attendees applaud]

 

[ARSHY]

Moira Welsh was at the meeting that day, watching how the councillors would react. She was studying one councillor in particular: Ron Starr, who had a reputation for voting “no” on any new expenditures.

 

[WELSH]

He was reserved. He was very reserved. He had been leaning back in his chair and sort of, in a sense, distancing himself from this whole meeting and these discussions. And then he leaned forward and he started to speak and the room went silent.

 

[RON STARR]

I was in the fortunate position, I was able to have my wife at home for five years, six years, 24/7, 24/7. I don’t know what people do when they can’t have that type of care.

 

[WELSH]

And he spoke about his experience with his wife, who had cognitive decline, and she lived in a Peel Region home.

 

[STARR]

And, uh, I was fortunate, uh, that, uh, close to home was Sheridan Villa, where I live. and my wife was there for the last year of her life, and, uh… But it was a warehouse. It truly was a warehouse.

 

[WELSH]

At the end of his talk, Ron Starr looked at the room and said…

 

[STARR]

This should spread like wildfire. I mean, it really should.

 

[WELSH]

…  “This should spread like wildfire.”

 

[ARSHY]

The Peel Regional Board approved the expenditure unanimously. The work was about to begin.

 

[PART TWO]

 

[ARSHY]

When Mary Connell was brought in to help begin the transformation at Peel, she had never worked in long-term care before. But her father, who had been a little boy in Glasgow during the Blitz, had recently been placed in a nursing home. 

 

[CONNELL]

It is funny that the universe very often offers you these opportunities. 

 

[ARSHY]

Residents of Redstone might all have cognitive decline, but they were hardly a monolith. There was a Kremlin-trained physicist… 

 

[CONNELL]

I think this guy probably knew some amazing secrets, but he used to laugh when I used to ask him to share things

 

[ARSHY]

…a human rights lawyer…

 

[CONNELL]

Brilliant guy, very curmudgeonly. Those are the type I like the best.

 

[ARSHY]

…an Italian homemaker…

 

[CONNELL]

She had a very large family. Early riser, cooking, baking all day. That was for joy.

 

[ARSHY]

…but all of them were struggling in Redstone. 

The physicist was used to being busy. He’d go around begging the staff to give him a job to do. The human rights lawyer would become angry every morning when he was woken up for breakfast. Meanwhile, the Italian homemaker was up at 5:30am and wandering into other residents’ rooms. 

And then, there was Fred Smith.

 

[WELSH]

I have never seen anyone whose eyes were so warm and just so loving to people. If you smiled at Fred, he would clasp your hand in his hands and give you this smile that was… It was just something to behold. 

 

[ARSHY]

Fred was 89. And his dementia had progressed to the point where he was mostly non-verbal. But it was clear he craved human connection.

 

[WELSH]

The impression that I had was that, for a while, Fred was a bit of a lonely figure there.

 

[ARSHY]

When he tried to extend an arm to another resident for a handshake, they would yell at him to go away.  So Fred would spend much of his time sitting by himself or aimlessly wandering the hallways, doing a loop every fifteen minutes. 

Kenroy Foxe, one of the personal support workers at Redstone, thought he had a good relationship with Fred. But he had a big problem. Though he had warm eyes and a frail body, Fred Smith had been a soldier in his native Pakistan. And his martial training would often kick in.

 

[WELSH]

But when it came time to helping Fred toilet, he didn’t like that. And he didn’t understand why Kenroy was coming in and trying to help him, you know, change his pants and, you know, take him to the washroom. And Fred, like most people did not appreciate that sort of invasion of his privacy. It seemed… It just seemed wrong to him, I guess.

And so, he would lash out and, and punch Kenroy, which was a normal thing to do under the circumstances, if you look at it from Fred’s perspective.

 

[ARSHY]

Kenroy was tired of being hit in the head every day at work. He knew that something had to change. So when David Sheard and Mary Connell arrived, promising a new way to do things, Kenroy was ready.

 

[WELSH]

I think he was one of the first people to say, “Yes, I’m going all in on this.”

 

[ARSHY]

And the first step was the training. All of the staff would be required to go through intensive sessions, in which they would relearn how they do their jobs. And that didn’t just mean nurses and personal support workers. That included the kitchen staff and the cleaners. The goal was to try to get the staff to empathize with the residents. Not in an abstract way. This was intense, and personal. 

The workers were asked to speak about some of their most painful experiences. 

 

[WELSH]

Many people with cognitive decline will relive, in a sense, their traumas from the past. And so if nobody understands what you might be dealing with, or can even empathize with you, then that’s a really lonely place to be.

 

[ARSHY]

Imagine sitting in a room with your work colleagues and being asked to talk about the most difficult day you’ve ever had, a day where you felt totally vulnerable. That’s not easy stuff. But this was purposeful exposure. 

The residents they were charged with caring for were so often experiencing their most difficult moments, over and over again: The death of a loved one, a miscarriage, being a scared boy wandering a dangerous street. By making themselves more vulnerable, the staff were breaching all kinds of professional taboos. 

 

[CONNELL]

I know as a nurse, I was always told that that is unprofessional to overshare, to share things about yourself. Well, how can you have a relationship with someone if you don’t share anything? 

 

[ARSHY]

Instead of moving quickly from problem to problem, the Butterfly model was going to ask something different of staff: To make their priority spending quality time with residents, to stop to chat for a few minutes, to have a cup of tea, to hold someone’s hand. 

 

[CONNELL]

And there was a real fear to translate that knowledge into practice, because that’s not how they’d been evaluated or their performance measured in the past. Actually, that’s always been discouraged.

 

[ARSHY]

In a typical long-term care home, each worker is evaluated based on their specific role. You’re a good nurse if your residents get their proper medication. You’re a good personal support worker if you’re residents eat three meals a day, and on time. You’re a good cook if the food gets made, and you’re a good cleaner if the facility is tidy. And there’s always more work to do, so you better look busy. 

In this new model, this emotion-first model, success would look different. It would mean getting to know the residents on a deeply personal level, even those who couldn’t speak, and to try to understand what they needed most. Not as patients, but as human beings.

And one of the first things that needed to go were the uniforms. The  staff were asked to come in their normal street clothes. Uniforms are for institutions. They have no place in a home.

That was a difficult transition for a lot of the staff. These were professionals. They worked hard, and many of them had studied for years to get to where they were. To them, a uniform is a sign of their accomplishments, that they deserve respect.

But Kenroy Foxe was ready for change. 

 

[WELSH]

Kenroy came in from the start and he embraced it. And he stopped wearing his uniform. He came dressed in street clothes 

 

[ARSHY]

Under the old model, Kenroy had always been a good personal support worker. On a typical day, he had to feed, toilet and otherwise care for 11 people, and document every moment of it. For every eight-hour shift, one hour was spent just punching things into a computer. 

But Kenroy knew that, every day he came to work, he’d be physically attacked. Every day, he’d have to take Fred Smith, the 89-year-old man with the warm eyes and the mean right hook, to the bathroom. And every day, Fred was going to be scared and confused, and lash out at Kenroy.

 

[WELSH]

And Kenroy just grew tired of getting hit. It usually caught him, sort of, on the cheekbone.

 

[ARSHY]

All of the new training they were getting said that they had to approach residents on their own terms, that they had to put their feelings first, and ditch the medicalized way of doing things.

 

[WELSH]

So, one day, he came to work and he just decided to do it completely differently.

 

[ARSHY]

When it was time to take Fred Smith to the bathroom, Kenroy did something that could have gotten him fired from any other long-term care home. He spread his arms wide and wrapped them around Fred in a massive bear hug. 

 

[WELSH]

And Fred gave him a hug back. And they… According to Kenroy, they walked arm in arm down the hallway to Fred’s private room.

And what Kenroy realized was that, that’s what Fred needed. He needed that reassurance, that friendship. And then he was calm. And according to Kenroy, Fred did not ever punch him again.

 

[CONNELL]

I always call it the “Mr. Smith moment.” That’s when I knew that the training was beginning to stick. It was not only did he think, “Well, hey, maybe there’s another reason for this,” but he had the courage to try it. It’s not about popping a pill or giving an injection. It’s about seeing Mr. Smith as a human being and he’s acting in this way because his needs aren’t being met.

 

[PART THREE]

[ARSHY]

The Mr. Smith moment was a breakthrough, but there was still a lot of hard work ahead. 

During the training sessions, staff members would have all kinds of ideas of how to help specific residents, how to make them feel more at home. And then, when it came to time to work, everyone acted like they always did. 

Getting the administrators to model that behaviour was an important first step.

 

[CONNELL]

Because then if you see your boss sitting, having a cup of tea with someone or playing the piano with someone, that gives you permission to do the same thing. 

 

[WELSH]

You could start seeing workers coming out and having the ability, um, and the freedom just to spend a little bit more time with residents, holding their hands, just talking to them. But, still, the walls were beige. Nothing was really changing. And so, you know, after a certain point, we were wondering what’s going on here now?

 

[ARSHY]

But if there’s one moment that kicked everything into high gear, it’s when the painters arrived. Beige was to be banished for good. Instead, the walls would be big blocks of colour. Sunflower yellow and tangerine orange, lime green, lavender and sea-foam blue.

The colours weren’t there just to make things pretty. People with dementia can have their eyesights impacted and get tunnel vision. They can get lost just walking down a hallway.

 

[CONNELL]

Those white walls, it’s just like a snowstorm. And they have no bearing or way of seeing that they’ve already been at this spot. So they would walk for hours thinking they were never going to get to the end of their journey.

 

[ARSHY]

Like Mary Connell’s father, there were four residents at Redstone who would walk that circuit every day. 

But once that bright paint dried on the walls, something changed. The walls were no longer all the same. There was a differentiation. A resident would walk past the se-foam blue section and into the sunflower yellow area, where they’re room was. 

 

[CONNELL]

So these four people that walked all the time, when those colors were finished, they stopped walking. Because they could see there was an end.

 

[ARSHY]

The paint changed something for Inga Cherry too. The former fashionista, who used to cry aloud that she was in a cage, had already started venturing out from her room. And once the painters arrived, Inga put on her best earrings and came out to chat to the handsome young men working in the hall. And that chatting quickly turned into full-on flirting. 

One of the painters was so scandalized, he went to the administrators. But they told him to just take some time to talk to her. Let her tell her stories. And even flirt a little. Within weeks, they were talking all the time. 

 

[WELSH]

She just really came back to life from that experience. 

 

[ARSHY]

Inga wasn’t staring out the window anymore. She stopped crying out that she was in a cage. 

 

[WELSH]

She just she started to enjoy life again, and she just became this sort of social… A bit of a social butterfly. She would have fun with people. Her repartee was amazing. You wouldn’t know if you just looked at her in that moment that she had any kind of cognitive decline.

 

[ARSHY]

The paint going up was like a starting gun for the rest of the staff. They became more comfortable spending time with the residents. And a lot else was changing around them.

 

[WELSH]

Ever so slowly, they tried to fill it up with what they called “the stuff of life,” essentially, bringing in things that you would have had in your home, but kind of magnified and amplified in a sense.

 

[ARSHY]

Cushions and blankets and throw pillows begin to proliferate. There were cowboy hats and feather boas to put on, and musical instruments to play. The walls filled up with photos and art. Soon, residents were setting up putting greens for a round of mini golf or gently rocking a baby doll to sleep. 

But the transformation was hardly complete. Half a year into the pilot program, residents were still eating in the same way they did before.

 

[WELSH]

And I know that when, um, David Sheard and the people from Butterfly came back to do a six-month evaluation, he was not pleased that the dining room, still, was so spare and just looked like a really empty sort of cafeteria approach to it.

 

[ARSHY]

Changing the way meals are served is one of the most fundamental parts of the Butterfly model.

 

[WELSH]

Food is everything to people. Almost every culture, the family life revolves around food. 

 

[ARSHY]

But getting residents properly fed is one of the most beguiling problems in long-term care. People with dementia often don’t have an appetite. And if they start to lose weight, they’re more susceptible to pressure ulcers, one of the most common and serious health problems in nursing homes.

Over time, the entire dining experience changed at Redstone.

 

[WELSH]

It now has a long family-style table where, before COVID began, um, people would sit together and they would pass around bowls of food and chat, and the workers would sit with the residents, and everyone would eat and just converse like a family.

 

[ARSHY]

And the incredibly regimented dining schedule went out the door. 

 

[WELSH]

So if you want to have ice cream for dinner and your dinner is at 8:00 p.m. that night, then you can have your ice cream for dinner. If you want to eat breakfast at 11:30, you can eat it and you can go into the dining room and make your own toast and jam and tea, um, various other snacks throughout the day. And it’s about the resident first. It’s not about the home and the home schedule.

 

[ARSHY]

And the residents got involved in the meals themselves. 

 

[WELSH]

In some homes, people will help cook meals. People will bake bread. Residents and staff will work together to do this. In Butterfly, people started initially with cleaning carrots and helping prepare vegetables that could be part of the meal or just could be part of a later meal.

But it gets you thinking about food. It gets you sort of smelling food, an awareness of food. I mean, the smell of home-baked bread is pretty wonderful, for all of us. And if you’re living in a long-term care home, it’s especially so, because it’s a smell that you don’t usually get to experience in the old ways.

 

[ARSHY]

Months and months of hard work at Redstone started to pay off. What was once a sterile place was now full of life. There was music and laughter and gossip. And all of those residents who had clearly been living in despair began to open up, in their own individual ways.

The Russian physicist who used to beg staff for something to do? He was back to being his busy self. 

 

[CONNELL]

When the housekeepers came in to clean up after breakfast, they’d get him to help sweep. We would fill spray bottles with blue water and he would wash the windows.

 

[ARSHY]

Then there’s the human rights lawyer, who would become enraged when he was woken for breakfast at 8am. They talked to his family and found out that he was used to staying up, reading case law until two or three in the morning, having a late breakfast, and then not eating again until dinner. 

They contacted their legal department and brought in old reference books. They gave him a desk and a lamp, so that he could read at night. And they let him get up and eat when he was ready.

 

[CONNELL]

Now, before, we would never let someone do this, they’d have to follow the meal guide set out by the ministry. He’d have to eat three meals a day and two snacks. But this isn’t how this guy rolled. We let him we let him do it, and he was a much happier person. He was no longer physically upset with staff. 

 

[ARSHY]

And there’s the case of the Italian homemaker who would wander into people’s rooms at 5:30 in the morning. The solution for her came from Ruan, one of the cooks. He simply asked her to help him in the kitchen.

 

[CONNELL]

He’d go down and meet this woman and he’d get her started on the breakfast, setting the table. We bought a hot plate so she would start doing bacon. And in the summer, they’d go out and pick tomatoes in our garden. So what would traditionally happen is that someone like this woman would be given medication so she would sleep longer. Well, that doesn’t benefit her and it doesn’t meet her needs emotionally.

 

[ARSHY]

She had purpose. She had a reason to be there. And she had joy in her life once again. 

 

[CONNELL]

She didn’t have a lot of English. She’d hold her heart like this and she’d say, “I love. I love.” And she’d point to the table.

 

[ARSHY]

And she started to make friends, to develop real relationships with the people around her. 

 

[WELSH]

There’s a whole group of ladies there who hang out together at the end of the table and she cooks and another woman stands with her and talks about her life. Then one might be doing some knitting, and another holds the ball of yarn. And there just seems to have organically become this little ladies club there. And they do their thing, and that’s friendship.

 

[ARSHY]

The staff were happier. Sick days went down and the workers reported being more satisfied with their jobs. For so long, they’d had to hustle as quick as they could. 

And even when residents were suffering, there was little they could do. Now they had the time and the tools to make a difference.

And the residents were healthier. They were less medicated, and for some, their cognitive state actually improved. They had more moments of lucidity.

But most importantly, they were happier. They smiled and laughed. They had real human connections. For the ones who didn’t have family to come visit, the new way of doing things meant that they could experience tender human touch again. Someone holding their hand, or giving them a hug.

Moira Welsh remembers being at Redstone one day with Fred Smith, the Pakistani man with warm eyes.

 

[WELSH]

I was with his son and his family and they were having a really nice visit with their dad, but Fred just was kind of growing a little bit agitated. And so his son went out and brought back this doll and he put it in Fred’s arms.

 

[ARSHY]

Fred cradled the doll gently, and gazed at it, his eyes full of tenderness. And then Fred did something he hadn’t done in years. He spoke a full sentence. 

 

[WELSH]

The look on his face… He just looked down at this doll and he said in Urdu, he said, “You are my life.”

 

[ARSHY]

Ya meri jaan hai. “You are my life.”

 

[WELSH]

And, you know, his son looked at me and I looked at him and it was… It was a really special moment.

 

[ARSHY]

Fred Smith died in 2018. And by all accounts, those last months of his life in Redstone, they were happy ones.  

On May 10th, 2018, the Peel Regional Council was set to meet once again. The question in front of them was whether to make the Butterfly pilot permanent, and expand it to Peel’s other municipally run long-term care homes. 

David Sheard spoke.

 

[SHEARD]

Thank you, chair and councilors, for the honor of returning from the UK, back to the region of Peel. In November 2016, I presented to you that this home was at Level Nine on our graph.

Homes are rated from Level 1, where Level 1 is the highest, and Level 10 is a home in such a malignant state of a culture of care that my reply would often be to a manager of a level 10 home, “See you in court.”

And I want to qualify that with staff who were doing their best, staff only knew what they knew. So the Level 9 was about being locked in a malignant culture of care, where staff equally feel disempowered, where staff equally feel that there’s nothing other than caring for people’s bodies.

I’m delighted to announce that Sally Knocker from Dementia Care Matters, who came here a month ago, awarded Redstone a Level 2 Butterfly household accreditation. That means that the home went up seven levels from Level 9 to Level 2.

In the history of Dementia Care Matters, in twenty-two years, we have never had a Level 9 home go seven levels to Level 2.

[attendees applaud]

 

The outcomes are not what I call the wallpaper. Although you see the lime green and the orange, and you see all the stuff of life, and the prams… whatever. That’s really just the dressing. The major, major change is a change of emotional intelligence. It requires resources, it requires hard work, it requires sustainability.

So a massive congratulations from everyone involved, particularly to the people living with dementia, who have proved to me time and time again, and for the first time in Ontario, that actually they have much to teach us about living in the moment. All we have is now to transform long-term care.

 

[ARSHY]

Ronda McLoughlin, Inga Cherry’s daughter, came to speak too. Inga Cherry had died just five days before. 

 

[RONDA MCLOUGHLIN]

I thought it very important that I’d be here today to speak to you, because that’s how much I believe in this home. My mother at 94 still wore leather pants, carried her red leather purse and had a smile and an attitude, and you would not have known she was 94.

My mother, being very independent and a very private person, spent most of her time in her room initially, with the door closed. She had a TV and a phone and she kind of stayed there.

As the Butterfly program progressed, I noticed that she was out of her room more and doing more things with the staff. And the staff were changing. Not the people, but the attitudes and the beliefs and how to deal with people with dementia and Alzheimer’s.

 

[ARSHY]

Ronda said that one of the things she’s the most thankful for is that now she has pictures of her mother in her last months, doing the things she loved to do. Pictures of her smiling, being happy.

 

[MCLOUGHLIN]

And it has been a wonderful program. I think that this program is amazing. Where has it been all these years? Where has it been? I think it needs to spread throughout the region and not just the region. I think every home… Every home should be like this. It is truly amazing.

 

OUTRO

[ARSHY]

Moira Welsh has written a lot of stories about long-term care over nearly two decades. But when she published her feature about the Redstone Unit and Butterfly in the Toronto Star, she says she got an unprecedented response. 

 

[WELSH]

It really did have an impact on people, once it was published. You know, I’ve had a lot of calls over the years from stories, but I haven’t had this kind of excitement from people. And I think the point of doing this story is not to make the world focus on the Butterfly model, but it was to raise a conversation and to create these sort of… Elevate these ideas that things can be better, that we don’t have to accept these old sterile medicalized ways of living for older people. That it’s incredibly age, and that people can flourish as they grow older, just in different ways, and that they can live lives of purpose, that we should not just shut them up in a home and expect they’re going to die anyway, so it doesn’t matter.

 

[ARSHY]

Over the last few months, Redstone has been forced to return to doing things the old way because of the lockdown. Mary Connell says that if there’s a second wave, she’s going to fight harder to ensure that proper infection control doesn’t mean residents have to live cold, clinical lives once again. 

The COVID-19 pandemic has revealed the cruelty and callousness of our long-term care system, the ways in which we treat older people and disabled people as disposable.

But it also may be our best opportunity to turn it all around.. 

 

[WELSH]

I am very much aware that I have been excited about the possibility for change over the years and nothing truly has unfolded. But this time seems that there is potential for something different. And if we don’t do it now through this incredibly terrible crisis that COVID has created, then we just simply never will.

 

CREDITS

[ARSHY]

That’s your episode of Commons for the week.

If you want to support us, click on the link in your show notes or go to commonspodcast.com

This episode relied on reporting from Moira Welsh and Randy Risling at the Toronto Star. If you liked this episode, I urge you to go read Moira Welsh’s reporting on the Redstone unit. The article is called “The Fix” and it is one of the most affecting pieces of journalism I have ever come across. Please read it, and watch the accompanying documentary. You won’t regret it.

And Moira will soon be releasing a book about emotion-first care. Look out for it. 

This is the last episode in our emergency season about the COVID-19 pandemic and the crisis in long-term care. I want to sincerely thank the literally dozens of people who spoke to us over the last few months and the numerous reporters and advocates whose work we depended on. I especially want to shout out Aaron Derfel, Jane Meadus, Nora Loreto, Breanne Sinclair, Shauna Parks, Emma Paling, Sherina Harris, Jennifer Henderson, Joel Concepcion, Natalie Mehra, Tracey Rowley, Nathan Stall, Innis Ingram, Aimee Louw, Kitra and Ronnie Cahana, Jonathan Marchand, and so, so many others.

And I want to sincerely thank you all for sticking with us. I know this past season hasn’t made for easy listening. But these are urgent, important stories. And both Jordan and I are so grateful that you let us tell them to you. 

And we’ll be back soon with a brand new season of Commons for you to listen to. 

If you want to get in touch with us, you can tweet at us at @COMMONSpod.

You can also email me, [email protected]

This episode was produced by me and Jordan Cornish, with additional production by Tiffany Lam. Our managing editor is Andréa Schmidt, and our music is by Nathan Burley. 

If you like what we do, please, please help us make this show. Click on the link in your show notes or go to commonspodcast.com.

I think you should be getting our newsletter

Get a weekly note about our top stories.

This is a good thing that we do. You'll like this.