In her new book, Moira Welsh envisions a brighter future for long-term care,
Amid bleak long-term-care headlines, an uplifting story about innovative thinking
In nursing-home dance parties, seniors twist and shout, gingerly, to songs of their youth.
A man who would otherwise be locked in a dementia unit walks daily in the forest surrounding his retirement community. And in the kitchen of her tiny nursing-home unit, a woman helps staff cook meals, finding comfort in the familiar.
It may sound strange to say in the midst of a pandemic that’s come straight for seniors, but there is a lot of hope for the future of long-term care.
In “Happily Ever Older: Revolutionary Approaches to Long-term Care,” Toronto Star investigative reporter Moira Welsh takes readers across North America and into Europe, telling stories of homes, communities and respite day programs that are continuously innovating, enabling people to live with freedom, purpose and vitality in their later years.
The Glenner Town Square officially opened on Aug. 13, 2018, augmenting the existing Glenner day programs operating throughout the San Diego area, including the Little Blue House.
For Scott Tarde, Lisa Tyburski and David Wallace, it felt like a first day at college or an exciting new job. They joined the staff, greeting families, introducing clients to the theatre, pointing out the sleek black Thunderbird, the pool hall and the fullservice diner with framed black-andwhite portraits of young Ingrid Bergman and Audrey Hepburn hanging on the walls.
Everyone settled in, except Susie. She had been diagnosed with Alzheimer’s in 2017 and now lived with her son Joey, the 37-year-old deputy sheriff with San Diego County. Susie and her two kids were a tight family unit.
Joey called his mom a “princess and a firecracker.” She had won beauty contests as a young woman and in the 1980s, after divorcing their father, worked as an office manager and accountant in two jobs, at a parachute company and a Travelodge.
Susie had never played team sports but was so determined to coach Joey’s Little League team that she memorized the rules by reading baseball books borrowed from the library.
“She’s the one who raised me,” Joey said. “She made me who I am today … the everyday grind. That was my mom.”
Eventually Susie had to stop working. She was not happy. Susie loved running the office, controlling the budgets, keeping order in her world. Joey and his sister, Sheri, tried day programs but found them barren, useless hours of bingo trying to pass for enriched programming. Susie started spending her days in Joey’s home — a frustrated, anxious, isolated existence.
It was a struggle for the whole family. Joey put exercise and career advancement on pause to share his mom’s care with his sister. He could see she was slipping. He wanted to offer more and spent most of his free time with his mom, yet he still felt a terrible guilt as she retreated further into her disease. As a police officer, he was accustomed to problem solving. Now, there was nothing he could do.
On that first day at Town Square, Susie stood outside the diner, clutching her son’s arm.
He watched the other caregivers leave, as their moms or dads got comfy in chairs for yoga in-thepark or settled into a front-row seat in the theatre for a singalong. Susie was having none of it.
Her hand tightened. David Wallace noticed Susie’s grip and walked over to chat.
“I guess this is what people feel like when they are dropping their child off at nursery school for the first day,” Joey said.
“Absolutely,” Wallace said, “and, you know … in those situations the teacher tells the parent to go.”
Wallace had worked with seniors for years. He was pretty sure he could handle this situation.
He saw Susie’s GrandPad, an electronic tablet that acted as a cellphone, dialling her kids if she tapped their picture on the screen. Susie had two photos linked to phone numbers, one picture of Sheri and a selfie that she and Joey took together.
“If she calls you, don’t pick up,” he told Joey. “Your mom will be fine.”
Joey told his mom he’d be back and left, wondering how the day would end. Susie was not pleased. For her, this was unfamiliar territory.
“What kind of a son would do this?” she said. Repeatedly. “What kind of son would just leave me here?”
Wallace tried to make conversation. He tried to empathize. To comfort. Susie tapped Joey’s picture. He didn’t pick up.
When Wallace stepped away, thinking she might want space, Susie dashed through an exit door, landing in a transition room that was designed for a few minutes of calm time before entering the lobby. Wallace joined her and they moved toward the entrance, a sunny space with big glass windows. Tarde arrived, speaking lightly, trying to make conversation. Susie ignored them. She tapped Joey’s picture. He didn’t pick up.
As the clock ticked toward noon, a worker strolled by and said, ever so casually, “Hi Susie, everyone is having lunch. Want to come?” Susie joined her in the diner. A minor victory.
Lunch ended at 1 p.m. and at 1:01, Joey’s phone started ringing again. His phone logged 100 missed calls.
“Where’s Joey?” Susie asked Wallace, as she sat in Glenner Park. “When is he coming back?”
Wallace decided he’d better let Joey know that his mom was struggling when, as he later said, “The thought popped into my head.” Susie used to do accounting. When they enrolled her at Glenner Town Square, Joey and Sheri described their mom’s work history, including her repeated desire to go back to an office, to find a job, to be busy. She constantly asked if she could work again. It was all in her file, which Wallace had read.
He ran upstairs to the administration offices. On the computer, he typed invoices. One was the gas bill. Another was the electric bill. A bill for pencils was $3. Computer costs were $100. Some included dates and money owed. Working fast to get the papers printed, he cut them in half and raced down the stairs, bursting into Town Square. Susie was still sitting in Glenner Park. In a loud voice, Wallace said, “Oh no. We just got off the phone with the Internal Revenue Service. We’re being audited. Does anybody know a good accountant?”
Susie looked up. “I’m an accountant.”
“Thank god,” he said, “I really need your help. Where should we go?”
Susie said, “Let’s go to my office.”
She took him to the Town Square’s replica of the Little Blue House, with a table and chairs, and Wallace gave her the invoices. He realized he needed more materials and ran back upstairs, returning with pencils and a paper tablet. Susie said, “OK, give me some time to work on this.”
He went to up to Tarde’s office, where he could see Susie through the window. For a long time, she had her head down, focused. Suddenly, she stood upright, holding her purse, marching toward the exit. Wallace raced down the stairs to meet her.
“Susie, are you leaving?” he asked, catching his breath. “No,” she said, “I was looking for you. I’m finished my work.”
They walked back to the Little Blue House. On the table, all the slips of paper were laid out in chronological order. The sums were written down on the paper. “Everything is good and checks out,” she told him.
“Thank you,” Wallace told her. “I am so glad that I met you.” Susie eyed him. “If you want me to keep doing this, just make sure that everything is dated properly. Some of these invoices aren’t dated, and I don’t work like that.”
Wallace nodded. “If you come back tomorrow, I will make sure everything is dated. Where would you like to set yourself up?”
She walked into the city hall, which had an office with a wooden desk, a filing cabinet and radio. She draped her sweater over the back of the chair.
“Susie, what would you like to do now? Would you like to go home?” Wallace asked, thinking he’d better stop while ahead. Susie shook her head. “No, I’m on my break right now and I am going to hang out with everyone else.” She went into the library and chatted with the others.
The next morning, as people streamed through the front door for their second day, Wallace was surprised to see Joey and Tarde — with glistening eyes.
He watched them, puzzled. A cop and a CEO, both kind of crying? He made a beeline, asking, “What’s wrong? Is Susie OK?”
Joey explained.
At 5:30 a.m., he awakened to see his mom standing over his bed, peering down at him. She was dressed in work clothes. She had her makeup on, her hair fixed,
“One of the biggest challenges that people with Alzheimer’s have is the feeling of being ignored or overlooked or not understood. And so, by taking the time … to really understand where they are in that moment, gives that person a sense of control.”
DAVID WALLACE
CEO OF SENIOR HELPERS SAN DIEGO WHICH PROVIDES STAFF TO GLENNER TOWN SQUARE
purse in hand. “Joey,” she said, “I can’t be late for work.”
He got up, stalling a bit, since Town Square didn’t open for another three-and-a-half hours. He took the long route to the industrial mall in Chula Vista. At one point, Susie insisted he pull over to buy a box of doughnuts for the people at work.
When Susie arrived at Town Square, she walked straight to city hall and, after hugging the caregivers, she fixed her sweater on the back of the chair. One of the staff invited her for coffee. Susie joined them.
Since that first day Susie has gone to Town Square’s day program, every day, five days a week. It costs $95 a day which includes meals, exercise, conversation or music programs, including singalongs with a guitarist who performs in Spanish and English.
Susie spent most of her time in the programs with the others. She sat at the same turquoise booth with the same three friends, every day for lunch and coffee breaks. They were in the moderate stages of dementia, higher-functioning than some others, still able to have conversations, share a story.
Wallace continued dropping by to say hello. Tarde negotiated the deal that he said would boost Glenner’s funding, by giving Senior Helpers the rights to sell the Town Square concept to new franchisees.
Handing off control to another company takes faith. Tarde said Glenner’s board chose Senior Helpers because “we have confidence in their franchising abilities and support for their franchisees.” In 2016, Senior Helpers was acquired by Altaris Capital Partners, a private equity firm with plans for expansion in health care. The care of senior citizens is a growth industry.
The staff that Wallace sends to Glenner Town Square are trained in occupational therapist Teepa Snow’s Gems program, which equates people with cognitive decline as gemstones, each representing a different range of abilities. On a good day, he said, Susie was a diamond, which means clear and sharp though stubborn and sometimes unwilling to accept change. On a slower day, she was an emerald, unsure and confused when things weren’t going her way.
As Wallace described it, the right training helps workers or families understand how the brain changes with the disease and the Gem designation is a good shorthand for where people are on the spectrum. Training makes it easier to predict some behaviour, and it can help identify an individual’s current abilities. With shared training and vocabulary, caregivers — families and workers — can communicate better and arrange activities that can bring comfort …
At Glenner Town Square, in the months that followed opening day, Susie was the one who decided how she would spend her day, not the staff. Maybe she’d join a yoga class or help Lisa Tyburski organize marketing material or coupons for supplies from Target or Walmart. Most days, when Wallace dropped by, Susie was chatting with her friends, listening to musicians or at her desk in city hall. Sometimes, when an elder walked past, Susie popped out, saying, “Can I help you?”
For Wallace, the decision to pull Susie into the program by asking for her assistance with accounting was a last resort, when all else failed. “In a moment of panic, the idea came to me of what her purpose could be,” he said.
In the seniors’ industry, a lot of good people have very different opinions about interactions with those who have memory loss. There are debates about safety versus the risk of independence, inclusiveness versus separation of people with dementia and truth versus the creation of a reality to meet an individual’s emotional needs.
A study published in the British peer-reviewed journal Aging and Mental Health in 2011 asked, “Do people with dementia find lies and deception acceptable?” The answer was complicated.
Researcher Ann M. Day and her team focused on 14 people with dementia, living at home with a spouse or in a nursing home. The study found that the “acceptability of lies and deception” in dementia care in many ways depended on whether it was in the person’s “best interests.”
Lying was considered negative, for example, when an individual was in the earlier stages of cognitive decline and the deception blocked coping skills they might have otherwise learned. Lying could be considered in the best interest when the individual was in the later stages of the disease and unlikely to recognize the falsehood. “Lying, therefore, became more acceptable if, on balance, it promoted the most beneficial outcome,” the researchers concluded.
When I mentioned Susie’s experience to Suellen Beatty of the Sherbrooke Community Centre in Saskatoon, she said lying to people with dementia can lead to a devastating loss of trust if that lie is ever discovered.
“He met (Susie’s) need by doing what he did, which is wonderful. It would have been great if it was met in a way that was not fabricated … because I think what happens sometimes is if somebody figures that out, then you’re really in trouble, man. They’ve lost trust. And trust is such a big deal,” said Beatty, who is widely known and respected for her groundbreaking work with seniors.
Instead, Beatty said she would validate the emotions of an individual in distress, by saying, for example, “‘You’re very angry, aren’t you? Yeah, I can see you’re angry.’ And then all of a sudden, somebody has empathy for you. And empathy is kind of a big key to get connected with someone with dementia.”
It was a bit of a shock to hear this opinion, if only because Susie’s story seemed inspiring. It is hard to know if any other approach would have worked with Susie that day. When faced with an extreme situation, Wallace created a scenario that made her feel comfortable.
I asked Wallace about Beatty’s perspective. He’s a thoughtful man, aware that there are strong opinions on truth telling. Some believe in telling the hard facts, always, even when an 89-year-old is calling for her mother. Others, like Beatty, rely on the validation of feelings rather than recitations of blunt facts, never, for example, telling a woman that her mother was dead, believing that the repeat discovery of such a loss would be torment.
For Wallace it’s a balance between full truth and finding a way that helps someone like Susie feel safe in her surroundings, to give her a sense of familiarity, of purpose.
“One of the biggest challenges that people with Alzheimer’s have is the feeling of being ignored or overlooked or not understood. And so, by taking the time, and slowing down and interacting with the person, to really understand where they are in that moment, gives that person a sense of control, a sense of being understood and that in itself can help reduce a lot of the anxiety,” he said.
“It was connecting to her sense of purpose. She was able to see where she fit in, and an environment that was unfamiliar became familiar to her. I gave her a puzzle that she could solve.”
When I asked Susie’s son, Joey, for his thoughts on the differing philosophies, he hadn’t considered those choices. He was quiet for a minute. Then he spoke.
“If there’s a need to make everything honest, how do you make it honest when she has Alzheimer’s? Her reality is already shattered. I’m just trying to make her quality of life better. If she thinks she’s the president, I’m fine with that. As long as she’s not aggressive or angry, that’s more important,” he said.
“Give her the right environment and she’s a joy to be around. So, saying a lie, or playing into the lie, I would say that creates the environment that she needs, that she creates, that she is building in her mind. That way, she can deal with life.”
It’s an interesting dilemma. How far do we go, ethically speaking, to offer people a sense of value, the ability to contribute, a reason to get up like the rest of us and greet the day?