PROVIDING CARE IN ‘A COMPLETELY DIFFERENT WAY’
In the Peel nursing-home pilot project, staff get rid of their scrubs and try a new approach
It’s early evening and the long, beige hallway in Malton Village’s Redstone dementia unit is empty, except for one tiny man.
The Professor. He stops a visitor, face tilted up, huge blue eyes peering above wire spectacles.
“I’m a bit out of sorts today,” he announces.
“I’ve got nothing to do,” he says, looking around. “I want to be busy. I want to be helpful. To do something.”
It’s mid-June 2017 and behind the scenes, staff are getting empathy training in the Butterfly program, but so far, life in the nursing home remains the same.
The TV room is dark. Same with the dining room. No opportunity for conversation.
When Butterfly Program founder David Sheard first audited Redstone he found emptiness.
In November of 2016, he rated the activity in the home, watching the interaction between residents and staff, minute by minute, for one full day. Sheard gave Redstone his lowest rating, out of 750 audits done on homes throughout Britain, Alberta and Australia. There was no social or emotional interaction between staff and residents. No laughing, no jokes, games, conversations or hands held. Just workers rushing to finish tasks.
Sheard shared the results of his audit with Peel and Malton Village managers in the home’s boardroom. They listened in shocked, weepy silence as he laid out his findings, explaining that their long-held beliefs about caring for the elderly, keeping them clean, fed and safely tucked away, are destroying lives.
By Ontario standards, the Redstone unit generally gives good care, so 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 health 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.
Over the past 15 years the Star has published many stories on nursing homes, exposing grinding miseries of life: neglect, abuse, urine-soaked sheets, loneliness or rushed, angry words. A 2003 investigation into 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 fear that the needs of the residents come second to compliance. And nothing really changes. No wonder, says Dr. Bill Thomas, founder of the U.S. Green House Project, which creates small, intimate nursing homes. He says dreary stories lower expectations when operators could be put 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.”
Once Peel Regional Council approves the Butterfly program in late March 2017, the Malton Village boardroom becomes a classroom. Frontline workers arrive for training focused on emotional intelligence, a complex process asking staff to tap into their 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’d better look for another job. If staff can feel their own traumas, he believes they’ll be in a better position to understand residents’ anxiety and fear.
For some workers, that’s a lot to ask, uncovering pain long tucked away, like the 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.
Afew months after the 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, signs of change begin. The walls become vivid sections of 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 confusing tunnels.
“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 Cherry, 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 growing up 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 Smith 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.
Say hello to Inga or Fred and their eyes switch on. They smile, reaching out to hold a hand, thirsty for touch or conversation.
People who are lonely or bored become frustrated and sometimes, very angry. The industry calls this “responsive behaviours,” saying it’s an outcome of Alzheimer’s or dementia. Sheard says it’s the result of frustration, loneliness and boredom, created by cold, clinical care.
One day in June 2017, 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. 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.
A few minutes later, 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 songsheets, 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 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, the former construction worker, eat his dessert of peach- es. 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 is 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 met 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 said. “They are scared. People in the earlier stages will bully those who are farther along in their decline,” he added. Not all families are convinced.
By September 2017, the old solarium on the slow, calm side, for people with advanced dementia, 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, but 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 studies the paper, not quite sure what to do with it, but seems focused, calm, no longer endlessly walking.
One night, when his son Ron comes, Fred sits with him in the activity room. Fred 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.”