A Hopeful Reckoning

In the Irish indie film Once, two ­struggling musicians write a song called “Falling Slowly,” an appeal of sorts to “raise your hopeful voice.” Glen Hansard and Markéta Irglová didn’t have nursing homes in mind, of course, but when I set out to investigate the best in long-term care, those lyrics, that sentiment, followed me.

It travelled with me across Canada, the United States, and the Netherlands, where I visited seniors’ communities that aspired for more. In these homes, residents were not shut up indoors, confined to the TV room, but lived with freedom and purpose. How energizing it was to witness the inclusion of people with dementia in everyday activities, to see the embrace of daily walks and dance parties. These places offered the familiarity of small households, where residents could tend the garden or roast marshmallows over the firepit. So‑called dementia villages had plans to mix generations by incorporating daycares, libraries, and cafés. Each one rejected the industry standard of boredom over risk.

Still, this idea of pushing for change by examining the positive was not immediately apparent — at least not to an investigative reporter. I’ve spent nearly twenty years at the Toronto Star focusing on nursing home abuse and neglect. These are the articles that made people cry, including a former Ontario health minister, who promised a revolution. Some stories led to incremental change, even new legislation. Yet tips on troubled facilities kept coming.

In 2018, I wrote a story called “The Fix” about a dementia unit that had transformed itself from an institution into a community. Half an hour outside Toronto, Malton Village Long-Term Care had freed staff from the traditional task-focused system to allow them to emotionally connect with residents. When the piece ran, granddaughters emailed with exclamation marks of joy. Sons and daughters called, looking for homes for loved ones that offered life, not solitude. This reaction, the outpouring of elation, was the inspiration for my book.

Not long ago, a retired city councillor told me that to transform ideas, one must first plant the seeds of new thinking. “Change is glacially slow until the philosophy and principles become embedded in the culture of the organization,” he said, after reading one of my stories. “Keep leading the charge.” If “The Fix” was my contribution to the seed, then now, with a pandemic forcing a reckoning in seniors’ living arrangements, it’s time to grow the idea of relationship-focused care. It fits right in with current calls to create national standards, address funding issues, and establish minimum hours of daily care.

The musician Jann Arden has written eloquently about her mother’s experience with dementia, and when she read my book, she said that it “managed to give hope to something that for the most part seems hopeless.” These words take me back to a group of women I met at a retirement community in North Carolina. They had all spent careers in positions of power — one member had worked as a high-level bureaucrat in the U.S. Department of State — and they were now coming to terms with cognitive decline. One woman confessed that she struggled to remember names, but rather than feel embarrassed, she chose to greet everyone with a simple “Hi!” They spoke about dignity and choice. They spoke about family, music, and the detailed reminders they had to keep in order to access their voice mail. They laughed. They were honest. And while memory loss is devastating, it was clear that they were still living because their humanity was nurtured.

It might seem strange to publish a book with a positive outlook during a pandemic that has ravaged nursing homes. It’s true that COVID‑19 has exposed the terrible, systemic flaws in long-term care. It’s also true that these problems existed before the virus arrived and, if we’re not careful, they will remain after it’s brought under control. The reality is that our population is aging. There isn’t much time to transform senior care before vast numbers of us will need it.

When “Falling Slowly” won an Oscar, the previously unknown songwriter Markéta Irglová told the crowd, “Hope at the end of the day connects us all, no matter how different we are.” Now is the moment to raise our voices and demand a better way forward. Old age should be a privilege, not a punishment.