Happily Ever Older

Revolutionary Approaches to Long-Term Care

Moira Welsh

• Publisher: ECW Press
• Year: 2021
• ISBN:
  9781773056609
• Topic: Social Sciences
• Subtopic: Gerontology
• Index: Social Sciences

While Being Mortal (Atul Gawande) helped us understand disease and death, and Successful Aging (Daniel J. Levitin) showed us older years can be a time of joy and resilience, Happily Ever Older reveals how the right living arrangements can create a vibrancy that defies age or ability.

Reporter Moira Welsh has spent years investigating retirement homes and long-term care facilities and wants to tell the dangerous stories. Not the accounts of falls or bedsores or overmedication, but of seniors living with purpose and energy and love. Stories that could change the status quo.

Welsh takes readers across North America and into Europe on a whirlwind tour of facilities with novel approaches to community living, including a day program in a fake town out of the 1950s, a residence where seniors school their student roommates in beer pong, and an aging-in-place community in a forest where everyone seems to have a pet or a garden or both. The COVID-19 pandemic cruelly showed us that social isolation is debilitating, and Welsh tells stories of elders living with friendship, new and old, in their later years.

Happily Ever Older is a warm, inspiring blueprint for change, proof that instead of warehousing seniors, we can create a future with strong social connections and a reason to go on living.

Chapter One
The Butterfly Effect

David Sheard makes people cry.

With his spiky hair and enormous, youthful cheeks, Sheard works the stage at a downtown Toronto conference center, talking about emotional awakenings.

Sheard and his partner, Peter Preidnicks, began their journey to Toronto a few days earlier, starting with the hour-long train ride to London, England, from their home near Brighton, a seaside resort town with a laid-back breeziness from the ocean air. Tourists come for the beaches and the Palace Pier, a carnival of roller coasters and merry-go-rounds on a wharf shaped like a lollipop, built into the rolling water of the English Channel. Sheard’s business, Dementia Care Matters, is in an office building close to the summer frivolity, but his real work is done with people living inside long-term care homes in the United Kingdom, Australia, and Alberta, Canada.

Sheard boarded the airplane at Heathrow Airport and sat in his usual spot, the front row in economy, where he has a few extra inches of room to stretch his legs. After suffering a heart attack ten years earlier, his doctor wants him to keep the blood pumping to avoid the fate of his father, who died on the street when Sheard was a child.

Today, a Monday in late April 2016, Sheard is in a Toronto conference room, telling the 500 long-term care leaders that their system is killing elderly people. He’s got the face of a cherub and the delivery of a man who doesn’t give a damn who is offended. In Ontario’s conservative care industry, some react with antagonism to critiques. We could be innovative too, insiders say, if the rules here weren’t so regimented. Some lash out against change agents. You can be too dynamic, too radical, too entrepreneurial. It raises the question: Who is acting in the best interests of the vulnerable people living in nursing homes? At this conference that role is filled by AdvantAge Ontario, the non-profit seniors’ housing association whose leaders want innovation on the agenda and invited Sheard to speak. It’s the subtle art of the dance, adding the radical guy to the mix of speakers, hoping his ideas will inspire those seeking full-on change without infuriating the others.

Sheard already has quite a profile. Twenty-five years ago, he was the general manager of old-age psychiatry in a British National Health Service trust, who came home one day, looked at Peter Preidnicks and said, “That’s it, I’m out. I’m done warehousing people.” Like all good partners, Preidnicks started a conversation about possibilities, the work that could be accomplished if, perhaps, it was done differently. That led to a new partnership of sorts with a woman running an English care home, who shared Sheard’s ideas about coziness, color and, most importantly, deep emotional connections with the people who lived there.

Sheard worked with Anne Fretwell in her care home in the English town of Atherstone from 1996 to 1999, sowing the seeds for what would one day become the Butterfly Model. They inspired each other, appearing together in the 2009 BBC2 documentary show Can Gerry Robinson Fix Dementia Care Homes?, which created a major discussion about nursing home care in the United Kingdom.

Sheard went on to create the Butterfly Model, which focused on changing the way nursing homes care for people with dementia. In the U.K., and in Atlanta, Georgia, Butterfly runs a similar All Care Matters program for residents who are frail or sick but don’t have memory loss. It is his work with dementia that receives the most attention and the reason why he is speaking at the conference. Within eight years of the documentary’s release, Fretwell was diagnosed with dementia, eventually living as a resident in the care home she had run. Ten months after Sheard’s Toronto visit, her obituary would appear online with a request that no one attending her funeral wear black.

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Today in Toronto’s concrete-gray downtown, Sheard speaks into a microphone, telling the crowd that people who work in homes need to learn how to connect with the feelings of people living with cognitive decline.

If 88-year-old Mr. Jones thinks he is still a boy, let him have his moment, Sheard says. Don’t feel the need to tell him he’s an elderly man living in a nursing home. What if Mr. Jones can’t handle the truth? You’ll just scare him or, worse, he’ll lash out in panic and fear. Just let him live in his moment, meet him there, even if he’s locked in a memory from 1942.

Two women sit at the front of the room. One looks like she stepped out of a Vogue street-style photo montage. The other is tiny and wears wire-rimmed glasses. Both are long-term care executives from the Region of Peel, just west of Toronto, who have spent the last two years searching for another way.

Onstage, Sheard is promising joy, his voice rising and falling as he describes warehouses turned into homes where residents get on with living instead of dying. In his Butterfly program, uniforms are banned as symbols of one person’s authority over another. Hallways are painted in vivid blocks of tangerine, purple, green and blue to help people with visual problems navigate the tunnels created by long hallways.

He talks about filling homes with what he calls “the stuff of life,” teacups, boas, soft blankets, dolls, a desk, a typewriter, a piano, family photographs, all chosen to reflect the lives and interests of the people living in the home. Bring the world inside, he says, for people whose existence shrinks as dementia progresses.

All good speeches have a narrative thread, like a short story that drives home the overarching point, and for Sheard, that theme is leadership. Nothing on the front line changes without a cultural shift that is embraced, nourished and demanded, starting at the top. Without that shift, and it’s a dramatic one, transformation will not succeed.

The Peel Region women have been wiping away tears but now they are looking at one another. It’s a moment of shared epiphany. To them, Sheard is describing the missing piece, the reason why so many other well-meaning programs in Peel’s dementia units didn’t stick, why residents always ended up sitting alone, staring at the floor.

The two women have the power to push for change in Peel’s five municipally operated nursing homes. When his speech is finished, they walk to the stage and greet him.

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Six months later, in the Malton Village nursing home boardroom, the home’s director of care is sobbing. At the head of the table sits Nancy Polsinelli, one of the two Peel Region bureaucrats who had met Sheard at the Toronto conference. Sheard is also at the table, delivering the results of an observational audit on social interactions he has been asked to conduct in the Redstone dementia unit of this nursing home. Polsinelli is naturally poised but, locked in this moment of reckoning, she struggles to keep her face calm, worried about her staff. She watches the lines furrowed in Sheard’s forehead, the intensity in his eyes. The excitement, the exhilaration of her first meeting with him seems a long time ago.

All the women at the table are managers at Malton Village, except for Polsinelli, who works with her Butterfly co-conspirator Cathy Granger at the head office in Peel, the regional government that oversees the fast-growing cities of Mississauga and Brampton and the town of Caledon. Sheard tells the women that he reached his conclusions by watching staff with Redstone residents, monitoring their social and emotional interactions, in minute-by-minute intervals. He watched as two workers ignored residents like Maxwell McCoy, a long-retired cop, and spoke to each other as if the people in their care didn’t exist. He saw a 94-year-old lady named Inga Cherry sitting alone at the end of a long corridor, clutching her red leather purse, staring out the window. “I’m in a cage,” Inga told everyone. “In a cage.”

In the dining room, Sheard looked at the flat, bare tables. Touchscreen computers were attached to the wall. With backs turned to the people in their care, workers filled out the government-mandated documentation, tapping icons that denote food eaten and bodily functions taken. Mr. Jones ate breakfast. Click. He had a bowel movement. Click. His mood was agitated. Click.

Meals were the most exciting time of the day. Residents lined up at least half an hour early, hovering. When it was time to eat, they sat obediently at tables as workers served food, cajoling some to eat, then whisking away plates, on schedule. Most residents spent the afternoon in the TV room, sitting, with the local CP24 news and crime running in the background.

“People are parked liked cars in a parking lot,” he tells the managers.

Scattered across the boardroom table are copies of his report that hold one sliver of good news: there are no signs of intentional abuse. That is a relief, except the report goes on to say that the odds of actually committing abuse are limited by the fact that there are next-to-no interactions at all. Polsinelli knows that neutral care is a form of abuse, emotional neglect, even if it isn’t intentional. She is struck by the way Sheard speaks. He is powerful, but there is no drama, none of the emotion he exudes at his stage presentations. Sheard reads from the report. He gives Redstone his second lowest rating, a nine.

Except for the sobbing, Polsinelli and her managers are silent, stunned. Ontario government inspectors usually found few problems within the nursing home, at least by ministry standards. For a moment, she wonders why he gave the home such a bad rating, but reality hits quickly as she realizes that every negative observation is true. People living there might be clean and safe, but they were lonely and bored, left with meaningless activities, month after month after month. She knows it isn’t the workers’ fault. They follow the schedule, are trained to keep up with the set tasks, always rushing from one to the next. She knows the activity board offers a thin gruel of entertainment. Lunch is always a chore to get everyone fed on schedule. And the big, ugly medication cart is pushed around the dining room during meals with drugs dispensed like a hospital, not a home. Redstone has never been evaluated on emotion-based care, so this territory is painfully new. Polsinelli realizes that Sheard is making her see reality through the eyes of the people who live in the home.

Sheard asks for comments. The room is silent.

Polsinelli speaks.

“We can’t go back,” she says. “Now that we know, we’re not going back.”

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Around the same time that the leaders at Malton Village were being handed the worst review of their careers, I was having a debate with my editor. I’ve known Kevin Donovan for as long as I’ve worked at the Star, more than 25 years. We became friends after working together on a few stories, and later he became my editor, a hierarchical shift that did not preclude creative disagreements.

This time we were debating a story idea. It was related to the case of the registered nurse who had killed eight long-term care residents in southern Ontario and got away with it until she confessed. In October 2016, I got a late afternoon call from a health-care source who told me the Ontario Provincial Police would hold a press conference the next morning, announcing a murder investigation into the nurse for the seniors’ deaths. I pulled together a story that night on deadline. Now, as the media frenzy lessened, Donovan wanted me to look at the big picture by examining the Ontario inspection reports for all 629 nursing homes.

I’ve done that story at least 30 times over the past decade, I told him. It’s the same, horrible story every time. Soiled briefs. Abuse. Bedsores. And, most frustrating, nothing ever changes.

“Then find a good home,” he said and walked away.

An unusual suggestion. Especially from a man known for his ruthless investigative reporting. I started making calls. There were nice stories out there. One home allowed residents to eat meals on a flexible schedule. Another let residents tinker on the decommissioned engine of an old van or fold laundry to keep busy. It was all lovely, but nothing jumped out as the subject matter for an in-depth story until Debbie Humphreys from AdvantAge Ontario called with a tip.

“Have you heard of David Sheard?” I had not. She sent me his email address, and within hours, Sheard and I were messaging back and forth across the time zones. It’s a coincidence, Sheard wrote from his home in England, I’m going to be speaking in Peel Region next week. Maybe you should ask if you can come.

Polsinelli and Granger, the two Peel Region bureaucrats who had met Sheard months ago, were less than thrilled at the idea of the Toronto Star’s negative nursing-home reporter tagging along. But they said yes.

It’s intriguing, the ripple effect that one forward-thinking person can create. Most communications staff are exceedingly cautious. They ask reporters for questions in advance and respond in writing, often offering a lot of words that say little.

There’s always an outlier. On Twitter, Peel Region’s Janet Eagleson calls herself, “Strategist. Fixer. Connector. Listener.” She manages the occasional calamity, answering reporters’ calls in off hours, while trail riding on her mountain bike or hammering shingles on the roof of her backyard shed. Eagleson doesn’t read from a script, she talks bluntly, often with a digression in which she will “bastardize” the words of a long-dead philosopher or a trendy podcaster. She once paraphrased French-American historian Jacques Barzun (who published what was considered his greatest work at age 93) telling a reporter, “Compassion is not a lost art, but the regard for it is a lost tradition.”

So when Peel’s long-term care leaders pushed for change in the Redstone dementia home but recoiled, in understandable horror, at a reporter’s request to cover the transformation, Eagleson challenged her bosses with a new idea: use the power of journalism to show other nursing homes that bold ideas are possible, that vulnerable, fragile people can live in happiness. Be an advocate for change.

“You can only feed one thing — courage or fear,” Eagleson told them.

And that’s how we know Inga Cherry blossomed in her final year of life.

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In leather pants and a tiger-striped blouse clasped at the neck with a gold brooch, 94-year-old Inga saunters, carefully, into the dining room of the Redstone dementia unit, her red leather purse held tight, swollen with lipstick, pots of powder and photographs.

“What have you got in there? It looks like it weighs a ton!” says a lady in a wheelchair, pointing to the bag.

“The kitchen sink — but no money!” Inga says. She laughs quickly, although Inga has been known to rage at workers who mistakenly touch her purse. She excuses herself, sliding into the chair at the window table she shares with Peter, the former nuclear technician who once worked in Russia. She speaks English. He speaks Polish. They chat, politely and in different languages, as she places the napkin on her lap, awaiting dinner served by support workers who float around the dining room, trying to get residents settled.

When painters arrived five months into the Butterfly pilot program, young men in T-shirts and white pants, Inga got her energy back. Instead of sleeping in her room or sitting alone at the end of a hallway in a narrow doctor’s office chair, Inga grew curious. She began flirting with a dark-haired man until his cheeks burned, and he sought out Redstone management for advice.

“She doesn’t realize she’s 94,” the manager told him. “She just wants to talk.” The young man started to listen. Inga told stories of the bombs in the Second World War, working as a butleress on an estate in England after the war and later, living in Canada, driving her white Chevy Vega to New York City or the forests of northern Ontario.

Her stories sounded so fresh, alive with detail, as if her adventures were new. “It’s funny,” Inga says, “I can remember what happened decades ago but I can’t remember what happened yesterday.”

As summer turns into fall, Inga feels free, not from the nursing home, but from the structured rules that had forced everyone to awaken, eat and even watch TV at a certain time. Now Inga chooses. Sometimes she bakes bread with Chelsea, a Redstone worker. Inga kneads the dough, her purse clutched at her side. Later, after a mini fridge arrives in the fall of 2017, she’ll walk into the dining room and peer into the glass door of the fridge. The Butterfly project manager, Mary Connell, insisted that Peel Region’s money managers free up the cash for a fridge with glass, so residents could see the milk and jam. “Otherwise,” Connell says, “no one would know what’s inside, and they’ll never open the door.”

Bread,...

Table of contents

• Contents
• Dedication
• Prologue
• Introduction
• Chapter One
• Chapter Two
• Chapter Three
• Chapter Four
• Chapter Five
• Chapter Six
• Chapter Seven
• Chapter Eight
• Chapter Nine
• Epilogue
• Acknowledgments
• Notes
• Index
• About the Author
• Copyright