Kenroy Foxe leaves his basement apartment in north Brampton, hops into his beat-up Honda and drives south for an afternoon shift at the nursing home where he will inevitably get punched in the head.
Kenroy is tired of being a human punching bag, taking jabs from residents. It’s a job hazard, for sure, but as he weaves his car through traffic, Kenroy starts thinking about the visiting dementia guru from England. His ideas seemed subversive at first but now Kenroy wonders, could they work?
By the time he arrives at the dementia unit, Kenroy has a plan for Fred, the 89-year-old whose fists hit hard. Kenroy does something that could get him fired in another home. It works so well that word of his success grabs the attention of the home’s senior medical director, upending his long-held notions of care.
Kenroy’s epiphany is one of hundreds of small but momentous changes inside the Redstone unit at Peel Region’s Malton Village long-term care home. They could transform the way Ontario cares for its aging population, proving that a warm, lively nursing home is not that difficult to create.
Odds are that anyone of a certain age with serious cognitive or medical decline will end up in long-term care.
Ontario’s 630 homes are controlled by 300 provincial regulations that keep staff focused on the tasks of feeding, scheduling and cleaning, all documented for government collection. It’s a detached, antiseptic end to life. Some call it a culture of malignancy. It is the not-so-distant destination for the great mass of Boomers, who are all hurtling toward their fragile years.
In Peel Region, a couple of bureaucrats decided to take a risk on a care model that promotes, well, love. Now, Kenroy’s unit is shoving aside the old clinical ways, with plans for laughter, friendship, energy, tenderness, freedom and hope. Try collecting data on that, health ministry.
From inside Peel’s year-long experiment in nursing home radicalism, here’s how it all went down.
Every day Inga Cherry sits for hours at the end of a long hallway in a locked dementia unit and stares at the cars speeding along Mississauga’s Derry Rd.
“I’m in a cage,” she says, “In a cage.”
Watching the traffic makes her feel like it’s the 1970s and she’s sliding onto the red leather seats of her Chevy Vega, silk scarf tied under her chin, driving with her daughter on a Manhattan getaway or north to Algonquin Park.
Inga’s memories tease with freedom past. She clings to those days, still dressing in her black leather pants, clutching a ruby red purse that swells with pocket mirrors, lipstick, pink nail polish and pictures of herself from 1942.
“How old am I now?” Inga asks. “Ninety-four? I never imagined it. Ninety-four! Never thought I’d make it to 50.”
Outside, the early spring sun is warm but Inga doesn’t feel it. She lives in Malton’s Redstone unit, where every day is 22 C, as required by provincial rules.
Every day, residents are awakened on schedule. Their faces washed, diapers changed, dentures inserted, in time for 8 a.m. breakfast. Inga eats quickly, delicately scraping the final spoonful of cereal from her bowl before 8:30 a.m., when the plates must be cleared.
This will be her final home, shared by 25 people in serious neurological decline, losing language, balance, or bladder control, in unique stages, as the brain slowly stops functioning.
People who once ran companies, created art or taught science are now forced to wake, wash, eat and defecate on schedule.
Peter, once a nuclear researcher in Russia, who has lost all his languages except for Polish, sits in the dining room. The Scottish lady who dyes her hair gold is sitting at a table nearby, slamming wooden blocks through the slot of a box. “No idea what I’m doing,” she says sharply, to no one.
Every 15 minutes, Fred Smith shuffles past, on his endless loop around the corridor. His cheeks sink into empty gums and he doesn’t speak, not much anyway, but say hello and his eyes shine with such warmth it’s startling.
He rounds the corner and ambles up to the Professor, a tiny man with tufts of white hair and extends his arm, palm open, hoping for a game of let’s-shake-hands. “Go away!” the Professor says. The Engineer in the hallway waves him off, turning his back. So Fred wanders, down the corridor, into a bedroom. From inside, a staffer says, “Fred this is not your room. You need to leave.”
Fred finds a chair in the TV lounge and sits, head slumped. Three people in wheelchairs have been left in the middle of the room, facing CP24’s daily mash-up of Toronto crime, politics and car accidents. Their faces are blank, eyes unfocused.
Soon they sleep, chins resting on chests, as the days merge and, outside, spring flows into summer.
Right now in Ontario, most of the 78,000 people in long-term care live this way.
In November 2016, when David Sheard, the nursing home specialist from England, was invited by Peel Region officials to assess the dementia unit where Inga and Fred live, he declared it empty of kindness, laughter or any semblance of hominess.
The Peel region bureaucrats who officially hired him in March 2017 have a plan to do something unusual, possibly even extraordinary. Some would call it a revolution.
It has the potential to be so transformative that Peel’s long-term care leaders speak about the possibilities with tears in their eyes.
Inga, Fred, the Professor, the retired engineer, the Toronto cop and the hospital orderly are part of an experiment: Let people live, before they die.
Kenroy has always been told to follow the rules, stay on schedule and focus on tasks. Keep people fed, clean, safe and quiet. Document every hour on the hour. Every day, when he arrives for his 3 p.m. shift, Kenroy first heads upstairs to the staff room. He sticks his lunch — today it’s rice and beans — in the fridge, punches in by flashing his middle finger at the scanner on the biometric punch clock and goes down to Redstone where, at some point, Fred’s fist will catch him, usually on the cheekbone.
All Fred knows is that a stranger is trying to pull down his pants and he doesn’t like it. Kenroy knows he has 11 people to be toileted, served snacks, moved from the lounge to dining room, spoon-fed dinner, returned to the lounge, offered juice, walked to rooms, washed, toileted, and put in bed.
Every day, at least 60 minutes out of Kenroy’s eight-hour shift is spent filing ministry updates on residents. It has to be done on an hourly schedule, so Kenroy is constantly rushing to meet the deadline.
In the late afternoon, he sits, his back to three residents, facing the touch-screen computer mounted to the dining room wall. He’s racing to finish his documentation before the screen turns pink for ‘late.’ Green screens mean Kenroy finished his documentation on schedule. Nobody wants pink.
Kenroy has always been told to follow the rules, stay on schedule and focus on tasks. Keep people fed, clean, safe and quiet. Document every hour on the hour. Every day, when he arrives for his 3 p.m. shift, Kenroy first heads upstairs to the staff room. He sticks his lunch — today it’s rice and beans — in the fridge, punches in by flashing his middle finger at the scanner on the biometric punch clock and goes down to Redstone where, at some point, Fred’s fist will catch him, usually on the cheekbone.
All Fred knows is that a stranger is trying to pull down his pants and he doesn’t like it. Kenroy knows he has 11 people to be toileted, served snacks, moved from the lounge to dining room, spoon-fed dinner, returned to the lounge, offered juice, walked to rooms, washed, toileted, and put in bed.
Every day, at least 60 minutes out of Kenroy’s eight-hour shift is spent filing ministry updates on residents. It has to be done on an hourly schedule, so Kenroy is constantly rushing to meet the deadline.
In the late afternoon, he sits, his back to three residents, facing the touch-screen computer mounted to the dining room wall. He’s racing to finish his documentation before the screen turns pink for ‘late.’ Green screens mean Kenroy finished his documentation on schedule. Nobody wants pink.
Kenroy has always been told to follow the rules, stay on schedule and focus on tasks. Keep people fed, clean, safe and quiet. Document every hour on the hour. Every day, when he arrives for his 3 p.m. shift, Kenroy first heads upstairs to the staff room. He sticks his lunch — today it’s rice and beans — in the fridge, punches in by flashing his middle finger at the scanner on the biometric punch clock and goes down to Redstone where, at some point, Fred’s fist will catch him, usually on the cheekbone.
All Fred knows is that a stranger is trying to pull down his pants and he doesn’t like it. Kenroy knows he has 11 people to be toileted, served snacks, moved from the lounge to dining room, spoon-fed dinner, returned to the lounge, offered juice, walked to rooms, washed, toileted, and put in bed.
Every day, at least 60 minutes out of Kenroy’s eight-hour shift is spent filing ministry updates on residents. It has to be done on an hourly schedule, so Kenroy is constantly rushing to meet the deadline.
In the late afternoon, he sits, his back to three residents, facing the touch-screen computer mounted to the dining room wall. He’s racing to finish his documentation before the screen turns pink for ‘late.’ Green screens mean Kenroy finished his documentation on schedule. Nobody wants pink.
Kenroy has always been told to follow the rules, stay on schedule and focus on tasks. Keep people fed, clean, safe and quiet. Document every hour on the hour. Every day, when he arrives for his 3 p.m. shift, Kenroy first heads upstairs to the staff room. He sticks his lunch — today it’s rice and beans — in the fridge, punches in by flashing his middle finger at the scanner on the biometric punch clock and goes down to Redstone where, at some point, Fred’s fist will catch him, usually on the cheekbone.
All Fred knows is that a stranger is trying to pull down his pants and he doesn’t like it. Kenroy knows he has 11 people to be toileted, served snacks, moved from the lounge to dining room, spoon-fed dinner, returned to the lounge, offered juice, walked to rooms, washed, toileted, and put in bed.
Every day, at least 60 minutes out of Kenroy’s eight-hour shift is spent filing ministry updates on residents. It has to be done on an hourly schedule, so Kenroy is constantly rushing to meet the deadline.
In the late afternoon, he sits, his back to three residents, facing the touch-screen computer mounted to the dining room wall. He’s racing to finish his documentation before the screen turns pink for ‘late.’ Green screens mean Kenroy finished his documentation on schedule. Nobody wants pink.
Kenroy taps icons for mood, mobility, meals and bowel movements, all to be compiled as ministry data. There are no icons for laughter, conversation, human touch or sense of purpose.
Across Ontario, nursing home staff tap the government-issued computers, every hour, every day.
It’s a model of efficiency that fits the homes’ interpretation of ministry rules and the operators’ bottom line.
Fun is scheduled, sometimes three nights a week between 6:30 and 7 p.m.
On the east side of Toronto, inside another dementia unit, the schedule for socializing is pinned to the bulletin board in the dining room. After dinner, a worker sings lyrics streaming across a television screen. Some residents join her, others sit, heads low, until singing time ends and they all sit in silence.
This is how the system operates.
It’s a world that David Sheard wants to obliterate.
“Our mission is to prove that dementia care could be very different from (the current) containment model, from a model that is just about physical safety and a model that is about sedating people in order to respond to their behaviours,” Sheard says.
The new model is a place where “we get love back into care,” he says.
“We give staff permission to stop being detached. It’s a place where people with dementia are busy, in their own ways that we don’t always understand, but you know it’s linked to something in their past. And to be busy you need a place full of the stuff of life — not an empty building called long-term care.”
In a conservative industry, Sheard is a cardigan-wearing disruptor with a degree in social studies and an honourary doctorate from England’s University of Surrey for his innovation in nursing home and dementia care. His company has 37 “Butterfly” homes and projects across the United Kingdom and Ireland, six in Alberta (one private nursing home and five assisted-living homes) five in Australia and one in the United States.
Sheard promises staff jobs of immense personal satisfaction, saying they will build deep friendships with the people who live in the homes.Kenroy’s industry is risk-averse, but the Redstone dementia unit is about to turn itself upside down.
Kenroy’s industry is risk-averse, but the Redstone dementia unit is about to turn itself upside down.
Ron Starr is the nasty guy on Peel Regional council, the businessman-turned-politician known for his ruthless denial of budget requests.
Sitting at the council table, Starr bristles, shoulders hunched, eyes narrowing, voice hard.
Today, March 30, 2017, he’s pushing his chair back, avoiding eye contact with Sheard, the 59-year-old former social worker with chubby, youthful cheeks and a chipper British accent.
Sheard knows he has a tough job, persuading Starr and his fellow councillors to accept change in a Peel nursing home, along with his $100,000 fee for the 12-month program.
He’s upped his game today, ditching the cardigan for a striped dress shirt and tartan tie. It was an easier crowd four months ago, in November 2016, when he spoke of transformation to Peel nursing home managers. The region’s long-term care leader, Nancy Polsinelli, listened with eyes glistening. Staff at her table looked at each other sideways to see who was tearing up. They all were, except Peel’s senior medical director of long-term care, Dr. Sudip Saha. He sat upright, in a crisp dark suit, listening.
Now, Peel councillors will decide. The chambers are packed, and silent.
“We bring the world so close that … you are not an empty soul …,” Sheard says. “And what happens is, people with dementia start to come alive again in ways that we could never have dreamt. Yes, they still have a degenerative condition, but they start to live.”
These conclusions, says Sheard, come from 750 audits of nursing and retirement homes, which look at minute-by-minute interactions between staff and residents. Sheard and his company, Dementia Care Matters, audit the homes three times, once to get a baseline assessment and twice during the year-long program to monitor the changes in care.
Butterfly’s findings mirror those of the Green House Project, an emotion-based model started by New York State geriatrician Dr. Bill Thomas. It is used by 246 homes in 33 states. Both programs show: happier residents, fewer falls, diminished violence, lessened antipsychotic medication and lower staff turnover.
Sheard tells the story of a resident named Bill, a violent 82-year-old Englishman who was kicked out of multiple homes because he and his cane could “take down anyone half his age.” When Bill arrived at a Butterfly home, Sheard says staff endured six weeks of bruising before suggesting the life-long farmer collect hardboiled eggs in the courtyard before tea. It tapped into his past, and the job clicked.
“He did that every day for two-and-a-half years until he died and he was a lovely man who wouldn’t have dreamt of raising his stick at us,” Sheard says.
Neuroscience research shows that one of the last regions of the brain to deteriorate is the part that holds deep, primal emotion, so when dementia robs a mother of her intellect and reasoning, she lives with vivid scenes from the past, he says.
“When everything else goes, you will 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.”
Imagine, he says, living with those memories in a place where no one ever reaches out to comfort.
Without improvements, this will be the lonely existence for hundreds of thousands of Canadians. An estimated 564,000 Canadians are living with dementia, according to the Alzheimer Society of Canada, with annual costs to the health care system and family expenses reaching roughly $10.4 billion. By 2031, the number of people with some form of dementia is expected to hit 937,000 people, with annual costs of $16.6 billion.
The odds of developing dementia double every five years after the age of 65. And that, Sheard tells the councillors, means Canadians need to demand nursing home change.
“We want families to want this. We want families to realize, yes, you have been losing your relative to dementia, yes, it is painful, but there is a bridge you can cross and if you cross the bridge into the person with dementia’s reality… you can learn to re-love them as they are now.
“And if you do, you will be left with positive loving memories after they’ve gone. 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 a love, that is different.”
Councillors give Sheard a standing ovation.
“As you say, they relate back to their previous visceral memories and emotions,” Crombie says. “What she enjoyed doing was singing Polish songs and playing Polish card games from her childhood.”Mississauga Mayor Bonnie Crombie dabs tears from her eyes with a white tissue, describing her grandmother’s experience with dementia.
Caledon Mayor Allan Thompson says, “If it’s genetic, then I’m really screwed.” He speaks of his wife’s exhaustion, caring for her mother who has dementia. “This is a new reality,” he says. Councillor after councillor speaks about personal experience with the disease.
Throughout the meeting, Councillor Starr has looked emotionally checked out. His face seems tight, hard to read.
The session is nearly finished when Starr leans into his microphone. In an unexpectedly soft voice he speaks of his wife and the Alzheimer’s disease she developed in her 50s. Elaine Starr died at the age of 69 on Nov. 21, 2013.
“Elaine was in long-term care in her last year. But it was a warehouse. It truly was a warehouse. The home just gave them anti-depressants … put them in the wheelchair because staff aren’t trained to deal with this.”
His voice cracks.
“A program like this should spread like wildfire, it really should.”
For one full day, in November of 2016, David Sheard watched the interaction between residents and staff, minute by minute. Sheard gave Redstone his lowest rating ever, out of the 750 audits he has conducted on homes throughout Britain, Alberta and Australia.
He gave it a nine out of 10, one step away from calling police to report neglect, he says. There was no social or emotional interaction between staff and residents in Redstone. No laughing, no jokes, games, conversation or a hand held. Just workers rushing to finish tasks.
Residents spent the day “parked” in chairs “like non-people,” he wrote in his report. Staff, when present, talked to each other over the heads of residents, as if they did not exist.
Sheard shared his audit with Peel and Malton Village managers. They listened in shocked, weepy silence as he explained that their long-held beliefs about caring for the elderly, keeping them clean, fed, and safely tucked away, are destroying lives.
By Ontario’s standards, Redstone gives pretty good care. There were problems in 2017 after a Redstone resident was twice hospitalized for dehydration but it generally does well in ministry inspections. Malton Village’s most recent overall inspection (it has six units that house the aged and people with disabilities) found issues, but Peel staff say none were related to the Butterfly program.
Inspectors focus on 300 government regulations so by Ontario’s standards, Redstone unit wasn’t doing too badly. Sheard’s comments cut deep.
“We were upset,” says Cathy Granger, Peel Region’s director of long-term care. “But we weren’t surprised because we knew we had never been assessed by this type of tool before and knew we needed to do some work.
“We could have just continued with the assessments from the ministry, but we wanted more. I think that’s the key point: we hadn’t been working (in Sheard’s model) before. That’s why we call this transformation — it’s going to push us to look at things in a completely different way.”
People who work in long-term care typically do not like outsiders’ criticism — even if the outsider is paid to give observations. It’s a cautious, defensive industry, fearful of government inspectors and weary of media reports on vulnerable residents.
For the past 15 years, the Star has published many stories on nursing homes, exposing daily miseries: neglect, abuse, urine-soaked sheets, loneliness or rushed, angry words. A 2003 investigation into abuse and neglect led to new legislation that ultimately created the current rigid model of care. Those rules, which seemed an improvement after years of lax oversight, are now interpreted with such anxiety that the needs of the residents come second to compliance.
And nothing really changes. Negative stories lower expectations, says Dr. Bill Thomas, founder of the U.S. Green House Project. Thomas says it’s time to put governments and nursing home operators on notice, by showing that long term care can be fixed.
“The story you are working on right now, that’s the most dangerous story you can tell.”
What inspectors found in Ontario nursing homes
1.When a resident asked for assistance going to the bathroom, the nurse responded, “You have your diaper.” The resident did not get changed until an hour later.
2. A pest control company found a cockroach infestation in the nursing home’s kitchen and some residents’ rooms. For more than a year, the home ignored the exterminator’s instructions to keep the area clean. The director of food services denied there was a bug problem.
3. A caregiver berated a resident for soiling the bed, reducing the resident to tears. A resident who shared the room saw the abuse. The roommate had also been incontinent but was now too afraid to ask for help.
4. There were not enough personal support workers scheduled for the morning shift so several residents who needed assistance eating sat waiting for an hour before someone came to help.
5. A resident rang the call bell to get a bedpan for a bowel movement. The caregiver turned off the bell and said it was meal time and the resident would have to wait. A second caregiver later found the resident upset, lying in a soiled bed.
6. A caregiver threw a bed sheet over a resident’s head, laughing while saying it was practice — as if the resident was dead. The same staff member slapped another resident, who had severe dementia, in the genitals. The caregiver was fired.
7. A resident was accidentally left on the toilet for nearly two hours. Another resident complained that staff routinely takes 15 to 20 minutes to respond to call bells from the bathroom.
8. A government inspector watched as a caregiver shovelled food into a resident’s mouth before shuttling the person off to an activity. The caregiver told the inspector that the dining room was crowded and the spot was needed so someone else could eat.
9. A resident complained about not receiving a bath for nine days. They are supposed to be bathed twice a week.
10. A nursing home charged a family $30 per hour to give their loved one an extra bath each week. The home’s administration said the payment was necessary to cover the labour costs of a “private duty nursing” service. Inspectors found the home was charging residents extra for things like additional walks, playing cards and companionship.
11. A nursing home charged a family $30 per hour to give their loved one an extra bath each week. The home’s administration said the payment was necessary to cover the labour costs of a “private duty nursing” service. Inspectors found the home was charging residents extra for things like additional walks, playing cards and companionship.
Once Peel Regional Council approves the Butterfly program in late March 2017, the changes begin. The Malton Village boardroom becomes a classroom. Frontline workers arrive for training focused on emotional intelligence, part of a complex process asking staff to tap into their own emotions, to better empathize with residents.
At first, workers look at each other with skepticism. But in Sheard’s world, if you can’t connect with emotions, you had better look for another job. If staff can feel their own traumas, he says, they’ll be in a better position to understand residents’ anxiety and fear.
“Those emotional memories will come (every few) seconds with dementia,” he says. “Imagine no one knowing them and no one reaching out to you.”
For some workers, that’s a lot to ask, uncovering pain long tucked away, like a death of a beloved or a beating by a spouse. Some leave the room in tears. Most stay. No one said change would be easy. Or fast.
A few months after the March 30 launch, some families are grumbling because they don’t see a difference. Visually, it looks the same: beige walls, beige corridors, beige floors, beige ceilings.
But by early August, the smallest signs of change begin. The walls become vivid sections of bright retro colours, chosen by Sonja Hidas, curator and educator with the Peel Art Gallery, Museum and Archives.
Hidas’s mother was recently diagnosed with dementia, so the project becomes personal. “Programs like this might help my mom one day, or in the future, maybe myself,” she says.
The walls needed blocks of colour to boost the mood and help residents with spatial problems navigate hallways that, in beige, look like endless, confusing tunnels.
Hidas learned about the people who live in Redstone, the countries they came from, and studied the interior designs that were popular in the decades when they were raising families or working. She went to Peel’s archives and pulled magazines from the 1930’s, 40’s and 50’s, like Chatelaine or Better Homes and Gardens, studying advertisements that showed pinks, minty greens, orange and yellows.
“Brilliant colours are key. They’re bright and happy,” Hidas says. “They’re the colours that children love, like yellow. It’s that gorgeous state of being a child and enjoying the moment. When you go forward to being a senior, colours come back to us. It’s part of being in the present and just enjoying.”
As the painters prime, then paint, Inga, wearing her dangly earrings, flirts with one young man until his cheeks blaze. He speaks with managers, seeking respite. “She could be my grandmother,” he says, scandalized.
“Inga doesn’t realize she’s 94,” managers tell him. “She thinks she’s young and she likes conversation.” The painter learns something new. By mid-August, he and Inga chat, usually about her home in Germany or her job in England after the war.
Inga stops staring out the window at cars.
Inga’s daughter is a regular visitor. Fred is lucky too. His family visits every night. His son, Ron, puts his dad to bed three times a week. Settling Fred in a chair in front of the washroom sink, Ron slowly shaves his father’s face, wiping away leftover shaving cream with a white towel, gently slapping on Old Spice.
Even with family visits, there are a lot of empty hours in a day.
People who are lonely or bored become frustrated and sometimes, very angry. The industry calls this “responsive behaviours,” saying it’s an outcome of dementia or other neurological problems. Sheard disagrees. He says it’s the result of frustration, loneliness and boredom, created by cold, clinical care.
On a late June day, the residents are once again sitting in the lounge, staring at the floor. Nobody watches TV, except maybe Roger, who sits in his wheelchair, raising one eyebrow when a visitor arrives. He once worked in the construction industry. Now, he doesn’t move.
Say hello to Inga or Fred and their eyes switch on. They smile, reaching out to hold a hand, thirsty for touch or conversation.
A male resident in baggy pants starts bickering with another resident, the lady whose hair is dyed gold. There’s nothing else to do, so words escalate. They appear to be in disagreement over the care of a third resident, a woman, in a wheelchair.
Golden-haired lady: “It’s not my job.”
Man: “Just shut up.”
Lady: “Leave her there.”
Man: “Be quiet. You have a big mouth.”
Lady: “You have no right to take her out.”
Man: “You assaulted me you bitch. Bitch.”
Lady: “Where do you think you are going with her?”
Man: “You are a funny lady.”
The woman they are fighting over sleeps through the entire exchange.
In the hallway, a tiny man holds hands with a woman in a striped top, wordlessly marching around the still-beige corridor, an endless loop for pent-up energy.
A few minutes later, the marching couple passes the lounge, eyes down. En masse, staff herd the residents into the dining room. Lunch is a choice of pulled pork on a bun or a cheddar cheese and fruit plate. Inga shares a table with Peter. “I’ve seen better days,” she says.
In mid-summer of 2017, a small piano keyboard arrives and the Professor flips through song sheets, taking requests, playing, “Pack Up Your Troubles in Your Old Kit Bag” and “It’s a Long Way to Tipperary.” On the days that he doesn’t play old war tunes, he dives into church hymns and sometimes Tessa, the home’s director of care, sits with him as they sing praises, voices rising in crescendo.
When the Professor sings hymns with a worker named Princess, another resident, a man known for crankiness, begins weeping. He seems calmer, after the tears. Music taps into deep emotions.
The manic walkers rarely pace the halls now. One of the walkers is assembling blocks at a dining room table. His former marching partner tends to her doll.
In the dining room, Paul Anka’s voice emerges from a white CD player, “Oh pleeease stay, Diana.” The CD segues into Doris Day, “Que sera sera, whatever will be will be…” Christophe Altenor, whose daughter, Jessica, is the administrator of Malton Village, sits in his wheelchair and sings along, his eyes shining. He knows every word. His falsetto rises, in a perfect, soaring pitch.
The residents who can’t move, whose expressions never change, have been getting hand massages and ever so slowly, the staff say they’re seeing changes. Not a big reveal, no dancing in the hallways, but subtle improvements, like eyes that seem aware.
One day, a worker from the dietary department helps Roger eat his dessert of peaches. She leans close and talks about her childhood memories of visiting peach groves in Niagara Region. His eyes are bright and she realizes… he’s listening. Roger eats all of his dessert. That’s the point. Talk about food, smell it or touch it, so people will build an appetite and eat. Well-fed people are healthier, less prone to dehydration and even skin breakdown.
There’s now a mini-fridge in the dining room, stocked with milk for tea, bread, butter and marmalade. It’s self-serve, any time of day. “I can’t believe I’m allowed to do this by myself,” says Inga. “Can I have another piece of toast?” Holding her red purse close, she carefully butters a slice and shares it with another resident, a man in a Tam O’Shanter cap. They sit and chat, over marmalade toast and tea.
Peel is still waiting for the fire department to sign off on renovations that would split the unit in half. One side is for people who are still active and the other, for those whose dementia is advanced. Ideally, 10 or 12 people will live in each home. In Butterfly, and similar programs like the U.S. Green House Project, small homes are key. In Ontario, most nursing homes are built to house 32 people in each unit, an arbitrary number chosen years ago in the belief that bigger is better, particularly for operational efficiencies.
When he meets with families at the start of the program, in late March 2017, Sheard said the separation is non-negotiable.
“The whole point of this is, you don’t put a whole bunch of people with dementia all together at different stages because they become frightened of each other. And they say things, ‘Get Out! Get out!’” he says. “They are scared. People in the earlier stages will bully those who are farther along in their decline,” he adds. Not all families are convinced.
By September 2017, the old solarium on what will be the slow, calm side of Redstone is filling up with hats, dolls, feathery boas, pictures, pillows and soft velvety blankets. Audrey, a worker, sits beside a man in a wheelchair, instead of standing over him like she would have in the past. She rubs his hands, and asks if he’s thirsty. Before, she’d hold a cup to his lips while he took little bird sips, his hands lying flat on his knees. Now, he grabs the sippy cup and takes a long drink.
Audrey’s eyes grow wide when she talks about the changes. “A few months ago, he couldn’t move,” she says. “Now, he’s even washing his neck in the shower.”
Kenroy is one of the first to drop his scrubs. Now, he wears jeans and red Polo sneakers of leather and suede. Sheard welcomes Kenroy’s decision, although he’d prefer if staff wore feathers and sequins. Some workers are slow to adapt, not ready to let go of their identity as health care workers. They’ll be given time to adapt. Street clothes are a job requirement.
In the music lounge on the active side, Fred sits at a little table, with paper and pencils. He holds the paper and studies it, turning it over, not quite sure what to do, but he seems focused, calm, no longer endlessly walking.
One night, when his son Ron comes, Fred sits with him in the activity room. He finishes stacking a set of foam blocks but seems restless, so Ron leaves the room and returns with a black-haired doll.
Ron passes it gently to his dad, whose eyes get misty as he looks down at the baby in his arms. He kisses its cheek and rocks it gently. Then Fred, the man who has barely spoken a full sentence in years, whispers softly to the doll in Urdu, “Ya meri jan hi.” You are my life.
I ask Ron if he thinks his dad just had one of those moments that Sheard describes, when a person with dementia finds joy by connecting with their past: “Maybe he thinks he’s with one of his children?”
Ron smiles. “Your guess is as good as mine.”
If an elderly woman with dementia thinks she’s 10 years old and is calling for her mother, what do you tell her?
Kenroy Foxe’s hand shoots up to answer the question. He’s about to get a lesson in the Noble Lie.
“Your mother is dead, you’re 84 and you’re in a nursing home,” Kenroy blurts out.
Redstone’s two Butterfly teachers stop speaking and stare at their front-row pupil. There’s a pause in the chatter of the room. Thirteen other personal support workers, mostly women, start shifting in their chairs, ready to correct him.
Kenroy’s shoulders stiffen.
“Why would you tell her that?” a worker calls from the back row.
“Just let her be at peace! Let her believe her mother is busy but she’ll come soon. Then you can distract her, and she’ll move on to something else but at least you won’t shock her.”
The more animated his colleagues become, the more their comments pile on, the lower Kenroy sinks in his chair. By the time the trainers regain control, his forehead is on the desk.
If there was anyone left in the room who doesn’t understand the need to let residents live in their moments, thanks to Kenroy’s bout of honesty, they now do.
Butterfly’s David Sheard says people with dementia can’t directly explain their emotions. They can’t say, “I’m lonely,” or “I’m scared.” He says their needs are best understood through metaphor. If the elderly woman is calling for her mother, what is she really seeking? It’s probably comfort, love, or reassurance, so the Butterfly program says give that to her, instead of the truth.
For Kenroy, lying to an old lady requires a dramatic shift in thinking.
He was trained in the old ways that dominate long-term care, focusing on systems and processes, not people.
Butterfly relies on emotional intelligence, the ability to understand another person’s feelings and respond with compassion. Some staffers naturally possess it, others want it and some don’t.
In March 2017, when Sheard first met with staff and talked about taking time for conversation or hand holding, some were thrilled while others wondered: Seriously?
How exactly are we going to have time to chat with Mrs. Jones when the call bells are flashing in three different rooms? How can we possibly get everyone ready for bed if one worker has to stop and listen to a story about 1942? Or, why should we wear street clothes, even pajamas at night, when we have earned the right to wear health care uniforms?
Complaints about demands on time and emotion are raised with the union, whose leaders say they can’t get proper details on the program or staffing increases from Peel Region. The Canadian Union of Public Employees files grievances, concerned that Redstone employees are being asked to do too much, some without extra training and possibly, extra pay.
“They want more money to show compassion?” Sheard asks, incredulously, when he returns for his six-month audit in late September.
“We are not asking for a raise,” says CUPE’s Jennifer Mizerovsky, in an interview. She says the union wants job “re-evaluations” that might result in more money but only if workers are bumped to a higher category based on increased job demands.
Kenroy just doesn’t want to get hit. The fastest jab belongs to Fred, who doesn’t understand why Kenroy wants to pull down his pants and change his briefs. He gets scared and defensive. His tough side emerges, maybe from his years as a civilian mechanic with the Pakistani military, and he punches Kenroy.
Kenroy has been listening and learning. He decides there’s a better way. So one day in late August, he does what his original training forbids.
He hugs Fred. A big bear hug. Fred hugs him back. “Let’s go to the toilet Fred,” he says. They walk down the hallway, arm in arm.
“He hasn’t hit me since,” Kenroy says.
In September, before a council meeting, Peel’s long-term care director Cathy Granger shows a note describing Kenroy’s hugging solution to Dr. Sudip Saha, Peel’s senior medical director of its five long term care homes. Dr. Saha also holds senior positions within the William Osler Health System, including medical director, division chief of seniors and senior medical director of long-term care.
He was the only person to sit through Sheard’s presentations without crying.
“I’d prefer to wait until I see what the data shows,” he had said after the first council meeting, his eyes wary. “I need evidence.”
Now, Cathy watches Dr. Saha as she reads aloud from the note about Kenroy’s story. His face shifts. The next day, Saha tells her that the Kenroy-and-Fred solution could help people with dementia in Peel’s other homes and hospitals.
“I was pleased,” he says later, smiling. “Very, very pleased.”
On Monday, Aug. 21, 2017 the door to the dementia unit is officially unlocked.
That’s unheard of, giving people the freedom to leave, even if it’s just into the hallway. Wanderers, like Fred, wear an electronic wristband that automatically locks the door when he ambles past, but Inga could take a walk if she wished.
It seems like it’s taking forever but the long negotiations with the fire department are ending and Redstone’s two smaller units, one for active residents and the other for slower people with severe cognitive decline, will soon take shape. Already, on the active side, a game of cards is underway. One gentleman, laughing and laughing, is taking advantage of another player’s catnaps to win each hand.
In the side for people with advanced dementia, Roger, the former construction worker, is listening to ABBA on shiny white headphones. Before Butterfly, he seemed locked inside his body, never moving, never smiling, never speaking. Today, he’s dancing in his wheelchair, shaking a maraca and belting out lyrics, in his own way, to “Dancing Queen.”
“He’s loving it,” Audrey, the personal support worker, says with a grin.
In late September 2017, Sheard arrives to conduct his audit of the home, six months after the program began. He sees hallways in colours of “vibrancy and energy.” The lounge is brighter and cosier, filled with comfier chairs, scarves, blankets, purple feathery boas, hats, a table with a circa 1980 typewriter, paper, pens, magazines, books, a hutch with English bone china teacups and a piano keyboard with sheet music from the 1930s, ’40s and ’50s.
Sheard promises to share his audit with families, who are waiting in a meeting room. It will be their second meeting. Chairs quickly fill with relatives and friends as Sheard begins to speak, giving the results of his “observational” audit, performed a day earlier.
Accepting that staff were on their best behaviour, the audit pushed Redstone up by at least four levels in the ratings scale. Sheard says it’s the biggest six-month jump he has seen. It’s not rated as an exceptional “level one” home yet, but Redstone has surpassed the “malignant” stage when people were “parked like cars” in front of the TV, a critique confirmed by Peel’s long-term care leaders. It still hasn’t reached the required level for certification as an official Butterfly home.
The audit says workers are engaged in their jobs and residents give “numerous indications of well-being.” Still, Redstone is only 25 per cent full of the “stuff” that makes it homey, he says. “If you live in a sterile environment, it will kill your soul.”
Sheard’s critique of Redstone’s shortfalls remains blunt. Activities are still too scripted, without a natural flow toward individual interests. People are still arriving en masse for breakfast, when they should have the freedom to sleep beyond 7 and eat leisurely until 10:30 a.m.
Food remains the biggest problem. There is no activity to stimulate the appetite, like eating tiny snacks or peeling carrots. And people still aren’t getting involved in a meal’s regular activities of life, such as setting tables, serving food or clearing dishes.
Sheard asks the families for questions.
One woman is worried that people moved to the slower side will get less attention. “My biggest problem,” she says, “is when you separate people … that it doesn’t prevent (staff) from caring about them, talking to them.”
The woman’s husband will live on the active side, but she’s voicing the concerns shared by two women whose mothers will live on the slow side and they are upset about the separation, worried their mothers will miss out on activities.
Sheard has already told the crowd, “People with dementia can’t process noise and too many people. Separate homes stop all the stress of a massive institution.”
Now, he tells the woman, “I’m here to prove to you that it is not acceptable to live with 27 people.”
Large nursing home units (many Ontario homes have 32 people living together) lead to bullying and violence, Sheard says, particularly when those in early stages of dementia grow annoyed by the behaviour of those in later stages.
He reminds the woman that Redstone started with the second-lowest rating. “I would have said its care was shocking. So why were you not outraged a year ago?”
Sheard turns and addresses the room.
“I’ve heard some families are resisting this. Some are even angry. This may be one of the most resistant homes I’ve ever seen,” he says. “I have a very simple message. Why wouldn’t you want this? Why wouldn’t you want to go with staff on this journey?”
Before the meeting, the two daughters huddled on a bench outside the front door, speaking in loud voices. Their vibe seemed angry.
Inside the meeting, the younger woman, with curly dark hair, begins to speak. She asks if Sheard verifies if staff training works. “I am here, every day,” she says. “When I see management on the floor, everyone is hugging and kissing. But on the weekend when management is not here, there’s nothing,” she says. “ It breaks my heart.”
The managers in the room look stricken.
“Eventually staff like that will stick out like a sore thumb,” Sheard says. (Managers would deal with her concern by adding extra workers.)
Inga’s daughter, Rhonda, interjects, saying she’s happy with Butterfly. “It’s a journey,” says Rhonda. “I think in the long run it’s going to be wonderful.”
A man whose father lives here says, “My father, for us, he’s still a living being, he’s still my father, a friend. Your theory gives us some acceptance. They’re not dead inside, they just can’t express themselves. Coming here now, this is more exciting than going to a place that is clinical.”
Another woman speaks. “There’s an energy I am seeing and feeling now. People seem more vital.”
The meeting is winding down, but Sheard is not. For a man who talks openly about his struggle with heart disease, and the trauma he suffered as a child when his father’s heart stopped for good, Sheard embraces surprisingly high emotion.
“I am a disruptor,” he says, eyes flashing. “I am here to disrupt the long-term care sector.”
Before the meeting ends, he turns to the angry daughters.
“If you don’t want this,” he says, “What on earth do you want?”
Kenroy is taking his time, listening to the Professor, who is demanding a defined description of his role, “as an officer of this organization.”
They’re standing in the dining room, the Professor, ramrod straight, in black slippers.
“I am finding out if I’m needed, if I’m here for a purpose,” he says.
“You are needed,” says Kenroy, “you live here.”
“No I don’t!” the Professor says.
Aha. A moment for the Noble Lie.
“Well, it’s your second home,” Kenroy says, thinking quickly before the mood shifts, “and it wouldn’t be the same without you.”
The Professor’s shoulders relax.
At dinnertime, on the active side of Redstone, Fred sits, holding his doll. He’s eating mashed potatoes, with gravy. Inga walks in, wearing a tiger-striped blouse and black leather pants, her red purse gripped tight. A lady in a wheelchair points to Inga’s purse. “What have you got in there? It looks like it weighs a tonne!”
Inga laughs. “The kitchen sink — but no money!”
After dinner, Inga ends up sitting at the puzzle table. Malton Village’s administrator, Jessica Altenor, is here tonight spending the evening with her father, Christophe, 85, who has dementia along with Parkinson’s disease and lives on Redstone’s active side. Christophe can sing in perfect pitch with every Elvis or Tom Jones song ever recorded. Peter, Inga’s tablemate, is organizing wooden pieces of a puzzle on the table.
“We’ve got a group effort going on here,” Jessica says. She pulls down a laundry basket and passes it to a lady who just finished folding tea towels. “Would you mind doing a few more?” The lady does not mind.
“Inga does not do manual labour,” Jessica says, smiling.
Inga laughs. “Bitch, bitch, bitch,” she says.
“People are going to think you don’t like me,” says Jessica.
“They don’t know what’s in my heart,” Inga says.
Inga is putting puzzle pieces together, with subtle nudges from Jessica. “See how smart I am!” Inga says.
A plate of chocolate wafer cookies is added to the table and Inga helps herself. “It’s one hundred bucks!” teases Jessica.
Fred’s wife and daughter-in-law arrive and he sees them in the reflection of the dining room window, his hand shooting up in salutation as he greets their mirror image. He’s having his blood pressure taken, still holding his doll.
Inga is telling Jessica that she forgets things because she had a brain tumour.
“Well, it’s a good thing you found out, now you are healthy,” Jessica says.
“You know,” says Inga, “I’m not going to make it to 50.” She eats four chocolate biscuits.
Jessica leaves to put her father to bed, calling out, “Until we meet again!” Inga stays, showing Peter a new soft plastic toy that feels bubbly to the touch.
In a few minutes, it’s bedtime. Inga walks down the hallway. Peter follows. He’s speaking Polish, she’s speaking English. He stops, gallantly, just past her room. “Goodnight,” she says, and closes the door.
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 Police. 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 of 2017, they were told Maxwell had severe dementia. When they met him, he sat, head down, a lump in a chair.
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.” When Dave pulls out the Appleton’s, Maxwell leans forward in his chair and shouts “Ahhh!”
In late February 2018, Lonny sits with Maxwell, holding his hand, rhyming off names of Black Toronto police officers, men who might have inspired Maxwell along the way. “Do you remember Larry McLarty?” McLarty, Toronto’s first Black officer, died in 2016 at the age of 87.
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.”
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 rain boots 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 and work here. There’s Inga, grinning over Peter’s shoulder. Fred is sporting a cowboy hat. And here’s the Professor, in the piano lounge, where he plays Amazing Grace, always in different octaves so everyone can sing.
“Oh 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 with the company 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 or return to the old ways. And, if they think it’s worth the extra money, the councillors will also decide whether to expand Butterfly to all five of Peel’s long-term care homes.
Staff hadn’t known when to expect Sheard’s auditor, who arrived three weeks earlier to conduct the surprise final inspection. This audit would decide whether Redstone would be accredited as a “Butterfly Home.”
The first audit, in November 2016, gave Redstone Butterfly’s second-lowest possible 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. But Sheard didn’t look at completion of tasks and documentation. He 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 asks the day-shift workers, Audrey, Princess, Geva, Violet and Chelsea to meet in the hall near the nursing home entrance. Chocolate macaroons, two-bite 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.
Jessica speaks first, telling workers how proud she is of their efforts over the past year. Peel’s director of long-term care, Cathy Granger, thanks staff for the changes they’ve made to residents’ lives. The auditor from England’s Dementia Care Matters stands and talks about the movement toward emotional care and the importance of having staff and residents share the day as if they are part of a family.
The two-bite brownies are disappearing as staff nervously await the news. Redstone, the auditor says, is now an accredited Butterfly home, having jumped seven levels from the second lowest to the second highest rating. It’s not perfect, not until it adds more cosy spaces to the dining room and outside courtyard. But this is the biggest increase she’s seen in a home, the auditor says, calling it a place of “engagement and love.”
Audrey’s eyes shine. Violet beams.
A few weeks later, in mid-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 in his wheelchair, 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 may grow so weak it can’t protect itself from illnesses like 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 year. 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. The estate was originally built by Charles Digby Harrod, of the famed London department store. “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 on the lightly-floured board 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 whether they will cancel Redstone’s Butterfly program or, if they deem the expense worthy, add it to dementia units in its four other nursing homes.
Inga’s daughter is scheduled to speak to Peel councillors but staff are unsure if she will appear.
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. When the meeting begins, she walks into the council chambers with Malton’s administrator, Jessica Altenor. Good luck, someone says. 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. She had a TV and a telephone and she 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 beliefs in how to deal with people with dementia and Alzheimer’s. It has been a wonderful program. Wonderful. For her (funeral) service and the reception afterwards, 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 non-verbal 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?’ Some even progressed to sentences.
“I think this program is amazing. Where has it been all these years? Where has it been?”
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 create cost savings for homes and the health care system.
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 emotion-centred 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, council hears, the annual costs in each unit will be $400,000, which includes $7,000 for Butterfly program accreditation and the rest to pay 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.”
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