THE BUTTERFLY EFFECT
A Mississauga nursing home’s program to help dementia patients reconnect with their past passions undergoes a last audit,
On Tuesdays, with Maxwell, the cops gather in the nursing home. “Hey Max buddy, do you remember your chiefs? Jack Ackroyd or Bill McCormack? What about Dave Boothby — did you work for him?”
Retired Peel Police sergeant Lonny Blackett is visiting the Redstone dementia unit, talking to Maxwell McCoy, once a police officer in Jamaica, later a Green Hornet parking officer for Toronto po- lice. Maxwell developed dementia years ago. He’s 71 now and has spent the past few years in silence.
Last fall, Redstone’s managers called Peel Regional Police, seeking volunteers who might connect with Maxwell’s past. It’s part of the Butterfly program — help people relive a career or passion through visitors from the outside world. When Lonny and his partner-in-voluntering, retired Peel constable Dave McLellan first arrived in November 2017, they were told Maxwell had severe dementia. When they met him, he sat, head down, in a chair.
“Why can’t all facilities be like this?” RHONDA MCLOUGHLIN WHOSE MOTHER SPENT HER LAST YEARS AT REDSTONE
Dave brought in an old pair of police patrol pants, dark blue with a red stripe down the side. “Hey, Maxwell, do you remember pants like these?” Maxwell grabbed the pants as Dave put them on his lap. For the next 20 minutes, his fingers rubbed the thick stripe. When Lonny and Dave tried to leave, Maxwell wouldn’t let go of the pants. They looked at each other, eyes wide, amazed at Maxwell’s reaction.
“I’ll bring them back next time, Max,” Dave said.
Next time, became every other Tuesday at 10 a.m.
Sometimes Lonny and Dave bring him a bottle of Appleton Rum, imported from Jamaica, where Maxwell was born in 1947. With the doctor’s permission, they give Maxwell a teaspoon of “the good stuff.” The next visit, when Dave pulls out the Appleton’s, Maxwell leans forward and shouts, “Ahhh!”
In late February 2018, Lonny sits with Maxwell, holding his hand, rhyming off names of Toronto police officers, Black men who might have inspired Maxwell along the way. “Do you remember Larry McLarty? (He was Toronto’s first Black officer.)
Maxwell’s legs start vibrating. He grabs on tight to Lonny’s hand, squeezing it. “See!” says Lonny, “He’s in there.” Lonny holds his hand and eventually, Maxwell sleeps.
“I’ve learned so much since I started coming here,” Lonny says. “I always thought these guys were just vegetables taking up space, waiting for the grim reaper to show up. But they’re alive in there. They’re listening.”
Butterfly founder David Sheard walks through Redstone’s front door.
It’s been seven months since his last visit and now, in early May 2018, he’s a bit nervous. He’s never sure if a home will rise to the challenge of transformation.
Inside, his eyes alight on children’s shiny rainboots with polka-dot flowers, balanced on a little white bench. A child’s yellow raincoat hangs on a hook nearby.
Along the wall are bristol board posters, with snapshots of the people who live here. There’s Inga Cherry, grinning over Peter’s shoulder. Fred Smith is sporting a cowboy hat. And here’s the Professor, in the piano lounge.
This looks like a friendly place, Sheard thinks as he walks inside.
That’s the impression he wants. “It’s not an institution. It shouts familiarity. It’s not scary, it’s like a hallway, at home.”
Sheard sold his company, Dementia Care Matters, a few months earlier to Australia’s Salvation Army Aged Care Plus, giving it charitable status. He says the Salvation Army’s plan is to expand the Butterfly program internationally, including in Canada. Sheard is staying on a two-year contract.
In a few days, on May 10, he’ll present the results of Butterfly’s final audit of Redstone to Peel Regional council. The politicians will then decide if they’ll pay to keep the new Redstone and expand it to Peel’s four other nursing homes, or return to the old ways.
Staff hadn’t known when to expect Sheard’s auditor, who visited three weeks earlier to conduct the surprise final inspection that would decide whether Redstone would be accredited as a “Butterfly Home.”
The first audit, in November 2016, gave Redstone Butterfly’s second-lowest rating and left the home’s leaders flatlined from Sheard’s blunt words. Ontario’s inspection system had generally given the Redstone unit good reports for keeping people clean and safe. Unlike Ontario, Sheard looked for emotional connections between residents and staff. He didn’t find any.
Now, Butterfly’s one-year pilot has ended. After the final audit, Malton Village administrator Jessica Altenor invites the day-shift workers, Audrey, Princess, Geva, Violet and Chelsea, to a meeting. Chocolate macaroons, twobite brownies and pineapple chunks are served, with coffee and tea.
Staff still have no idea how their work is rated. Along the way, they celebrated residents’ recovered words, golf swings and tie-knotting skills, immersed in the moments. Today, they wait to hear if Redstone passed its audit.
The auditor, from England’s Dementia Care Matters, stands and talks about the movement toward emotion-based care and the importance of staff and residents sharing the day, as a family.
The two-bite brownies are disappearing as staff nervously await the news. Redstone, she says, is now an accredited Butterfly home, having jumped seven levels from the second-lowest possible rating to the second-highest. It’s not perfect, not until it adds more cosy spaces to the dining room and outside courtyard. But Redstone, the auditor says, is now a place of “engagement and love.” Audrey’s eyes shine. Violet beams. Afew weeks later, in May, Sheard walks through Redstone’s corridors, along walls of yellow, purple, green and tangerine, past a display of men’s suit jackets, and tries to see the changes through the eyes of outsiders. He worries that politicians or managers from other nursing homes won’t see past the decor.
“My anxiety is always that people just see the wallpaper and think, ‘Oh, if we just get paint and if we just get some vinyl to cover the doors and put in some stuff then it will be a Butterfly home.’ Then my message is, ‘You don’t get it at all.’ This is only an impression but you can still have malignant care within this impression.
“The key is actually what I have felt here in the days I’ve been back — that the staff are freed up. You can feel it in them. They are freed up inside. They’ve got permission, they can be. They don’t have to race around. They don’t have to prove they are doing their job. They know what we are looking for is a one-to-one connection. And that takes the change of a culture rather than environment.”
Audrey Sinclair takes her scheduled morning break with Roger, holding his hand, while he quietly dies.
Audrey works with residents on Redstone’s advanced dementia side. This morning, his door closed, Audrey sits inside Roger’s room, gently rubbing his hands, talking softly, just like she did these last months when his eyes were aware.
“I don’t want him to be alone,” she says, stepping into the hall for a moment.
Roger is 73 years old and once worked in construction, but early dementia left him motionless, until Butterfly-trained workers gave him headphones and a disco playlist. In his final months, Roger danced in his chair to the songs of his youth. Audrey would watch over him, her smile wide.
Decline is inevitable. Alzheimer’s disease and other forms of dementia are degenerative. In the end stages, the body will stop functioning or it may grow so weak it can’t protect itself from illnesses such as pneumonia.
For Audrey, and the other workers, the closer they grow to the people who live here, the more keenly they feel the absence when death comes. Still, it feels better knowing there were good moments in their final months. Fred Smith died in hospital in February and even now, Kenroy gets a twinge when he walks past his old room. “Smithy!” Kenroy says. “I miss him.”
Kenroy, 58, never wants to go back to the old, detached ways. “Now, we get to talk to people,” he says, “we get to know them and understand who they are. They’re not just here in a chair, getting medicine and sleeping.”
The other day, in the dining room, he looked at an empty place setting, at the table Inga and Peter shared.
“My first thought was, Inga!” He puts his hand over his heart.
In her final year, Inga Cherry’s memories played out in episodes fit for television.
As a young woman during the Second World War, her German town of Essen was bombed by Allies, trying to destroy the Krupp steel factory. “My mother was disabled,” Inga said, “and when the bombs came down, she was in a chair and she would say, ‘Go, you are young, leave me here.’ I couldn’t leave her, she was my mother.”
After the war, when Inga was in her 20s, she worked for the Rothwell family at Morebath Manor, in southwest England, a Downton Abbey existence. “I was the butleress,” she said. “They let me live in a little cottage and ride a horse. I should have stayed there longer, but I wanted to travel the world.” In Brampton, in the 1960s, she was all
Mad Men, in heels and wide skirts and red lips. In photographs, Inga posed with her arm outstretched, holding a cigarette between long painted fingernails.
“Funny how the brain works, I can’t remember what happened yesterday, but I can remember everything from the war.”
She never, ever, uttered the word dementia. She blamed her memory loss on all her years of glamour-smoking or a brain tumour she says was caused by strenuous sit-ups. “It’s my own fault,” she said, jabbing her finger into the side of her head.
In her final year, Inga left her room more often. She made herself toast in the kitchen and chatted over tea, telling stories, always ready with a quip, always clutching her purse. Sometimes, she kneaded bread dough, flipping it over and over before it baked to a soft, golden brown.
It smelled like home.
It’s May 10, and Peel Regional council has set aside the morning to decide Butterfly’s future.
Five days earlier, as Inga’s life was ending, Rhonda stayed with her mother overnight in hospital. Friday became Saturday morning. Rhonda held her mother’s hand, no longer bejewelled with rings. As the hours passed, Inga slowly lost her ability to speak although she kept trying, shifting from a whisper to silent, mouthed words. Inga died at 9:15 a.m. on Saturday, May 5, five weeks before her 95th birthday. As she used to say, “Never thought I’d make it to 50.”
Outside Peel’s council chambers, Redstone staff gather, with the blessing of CUPE, whose reps say they now trust in the plans for Butterfly. David Sheard is here, talking to long-term-care leaders, Nancy Polsinelli and Cathy Granger, who first heard him speak two years ago and knew, at that moment, they had found the answer.
Inga’s daughter Rhonda arrives. Staff surround her. Good luck, someone says, as she walks into council chambers. She grins, ready to go. “I’m wearing my mom’s shoes today.”
When her name is called out, Rhonda slides into the chair at the speakers’ table. She talks, without notes.
“I thought it very important that I be here today to speak to you because that is how much I believe in this home,” she says. “When she first came to Malton Village ... it was very institutional. My mother, being very independent and a very private person, spent most of her time in her room with the door closed.
“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 beliefs in how to deal with people with dementia and Alzheimer’s. It has been a wonderful program. Wonderful. For her (funeral) service I had pictures of her from Malton Village because she was smiling and happy at the end of her life.
“I can tell you that other residents in the home, I observed change throughout that time too. People who were nonverbal or who had progressed back to their first language were starting to speak English again. Even if it was just ‘Hello, hi, how are you?’
“I think this program is amazing. Where has it been all these years? ” She pauses, and looks at the politicians. “It’s a bit of a selfish reason why I am here. Because it could be me when I am older. It could be any of us when we are older. To live in a place that is more like a home and a family, is where we really want to be. “Why can’t all facilities be like this?” There’s only a year of data so far, but Peel Region says staff sick days are down, fewer residents are falling, antipsychotic drug use is lower and social engagement is higher, all of which save money.
Peel council votes unanimously to keep funding Butterfly in Redstone and add it to a second dementia unit in the Malton Village, where families and staff have been hoping for their turn. Councillors are not done yet. They vote to add the program to one dementia unit in Peel’s four other nursing homes. And, they approve a motion that requires Peel staff take the unusual step of becoming advocates for change, leading the charge to get emotioncentred care picked up in nursing homes across Ontario.
All told, Redstone’s start-up costs were a one-time $100,000 for the Butterfly program and another $100,000 for renovations and paint. Moving forward, the annual costs in each unit will be $400,000, including $7,000 for the Butterfly program accreditation; the rest pays for five new full-time workers.
None of this fazes Councillor Ron Starr, infamous for his rigid oversight of Peel’s budget. His wife, Elaine, died from dementia nearly five years ago. Now, Starr says he wants the program adopted by the provincial government, with federal funding, and expanded throughout all Ontario nursing homes.
“Let’s just do it.”