Losing Lillian

Lillian’s journey highlights the gaps in care faced by those suffering cognitive decline

She was 66 when a headache sent her to the ER. It was the start of a hellish odyssey through a medical system ill-equipped to help as her husband watched the woman he loved slip away. Their heartbreaking ordeal is a cautionary tale for an aging society

The sight broke Stephen Nealon’s heart. A stroke had changed his vibrant, fun-loving wife years ago. But he never imagined it could come to this — Lillian, confused and alone, knees bleeding from crawling around a Toronto psychiatric unit. He took a photo and wants the world to see where Lillian’s journey through our health-care system has left her.

In Stephen Nealon’s photographs of his wife, he sees the image of her father on the day he was liberated, a wisp of bones emerging from Germany’s Bergen-Belsen concentration camp.

Kazimierz Klimek weighed 80 pounds on April 14, 1945, five years after he was arrested for political resistance and shunted through concentration camps with haunting names, from Dora-Mittelbau and Auschwitz to Ravensbruck and finally, Bergen-Belsen, where Anne Frank died.

Lillian Ashley weighed 90 pounds when Stephen photographed her, on April 17, 2023, stumbling in circles inside a room in the psychiatric unit at a Toronto hospital.

She, too, has been through five years of devastation, although a much different kind.

And while there are no guarantees that Ontario’s health-care system could have fixed Lillian, Stephen believes its institutional approach to care means people with severe cognitive decline or other conditions that make them difficult to manage often don’t get the help they need.

Lillian entered the system on Jan. 4, 2018, at age 66, after a hemorrhagic stroke in the left side of her brain, which controls speech.

Her subsequent confusion, inability to find words, her anxiety and fear led to aggression that sent her to hospitals, a nursing home and more hospitals.

In some ways, it’s a mystery how Lillian, who loved dancing, yoga and hiking in British Columbia’s old-growth forests, ended up this way — the kind of patient who would lash out at hospital staff with punches or kicks. Sometimes she spat. Once, she swung a chair at a nurse.

The medical world calls the hitting, kicking and shouting “responsive behaviours,” and in hospitals or long-term-care homes it’s an ongoing struggle for patients, their families and the staff who bear its brunt. It’s an issue that’s likely to become more prevalent as Canada’s population ages.

As more older adults turn to the health system with unique challenges, what care will they find?

Neurologists say there is often nothing they can point to in an individual’s past that determines who becomes aggressive while living with significant cognitive decline.

Stephen believes the answer mostly lies in the way the system treats people, stripping their surroundings of life, music, movement and connection. He’s not alone. There’s a growing belief among geriatricians and nurses who offer slow, gentle care that people act out because of the institutional setting. Crowded spaces, loud noises, rushed staff or empty days create turmoil among those whose inner world is already confusing.

Try bouncing from one unfamiliar hospital to the next, Stephen says, and ingesting an ever-shifting mix of antipsychotic drugs with limited rehabilitation and see if you don’t end up reacting in perceived selfdefence.

Before the stroke that changed her life, Lillian was, by all accounts, healthy, fit and a lot of fun. She and Stephen once lived for Toronto’s music scene at the Montreal Bistro, Silver Dollar Room and the Senator, all long gone now.

So is Lillian. She can no longer speak for herself. It is Stephen, standing fast these past five years, filling notebooks with details of her trek through Canada’s medical system, who is left to tell the sad saga of Ms. Lillian Klimek Ashley.

On April 17 this year, when Stephen peered through the window into Lillian’s room in a psychiatric ward, the sight of her legs, little spindles, really, left him with a catch in his throat.

He stepped inside and started shooting pictures, images that made him think of black and white photos taken in 1945.

“It just really struck me in that moment when I saw her that this is really no different than what her father must have looked like when he came out of that concentration camp.”

The backstory

A few years after he was liberated, Lillian’s father arrived in Canada, joining fellow Europeans who settled in Ontario’s North. Mining jobs in Sudbury gave him a new shot at life.

Kazimierz Klimek worked hard for his family, Stephen says. Like many fathers of Lillian’s friends from postwar Europe, Kazimierz was a heavy drinker. Still, Lillian grew up believing she was the apple of her father’s eye, and Kazimierz’s beaming indulgence enabled her easy exit from more than a few teenage scrapes.

In high school, she wanted adventure, away from the safety of home. Sometimes Lillian and her girlfriends hung out at a Sudbury nightclub called Inferno, performing as go-go dancers. It was, after all, the 1960s. Later, captivated by stories of the music scene in Yorkville, Lillian and her friends hitchhiked to Toronto, hanging out in the coffee houses where Neil Young and Joni Mitchell once played.

Life changes fast. At 18, Lillian became pregnant, and was pushed into marriage by her parents, Stephen says. Just before her 19th birthday, she gave birth to a daughter. She was living in Vancouver with her husband. He didn’t stay long.

Lillian returned with her daughter to Ontario. She studied photography at Fanshawe College, married a man who ran a Toronto photo lab and in 1979, gave birth to a boy. When that marriage ended, Lillian got her real-estate licence and settled into the flow of clients and dream houses.

At first sight

Thirty-six years ago, on Wednesday, June 24, 1987, to be precise, Stephen Nealon was hanging in the parking lot with his hot-rod buddies, fellow mechanics who stripped down and souped up classic cars, and would meet, Tims in hand, to talk engines for hours.

At 6:30 he announced his departure for Fanny’s, a sports bar across the street with a dance floor and a DJ predisposed to ’70s rock.

He remembers saying, “I think I’m going to meet somebody tonight.”

His buddies laughed, as Stephen dodged cars flying down Kingston Road.

Inside that bar was Lillian, celebrating a deal with a girlfriend, a real-estate colleague.

When Stephen walked through the door, his long hair windblown, she’d later tell him she said, “Here comes ‘Wild Wednesday.’ ”

Stephen downed a shot of vodka. Catching a glimpse of two women laughing, he asked the DJ to play Bob Seger’s “We’ve Got Tonight.”

Lillian watched him striding toward their table.

Stephen caught her eye as she smiled, and it took his breath away.

They danced. They talked music. Lillian loved rock and roll. Stephen was into jazz, piano, the blues, classical guitar and rock. Her friend read the room, or the table, and left.

Just back from years of work in California, Stephen was 31. Lillian was 35. He was transfixed by her eyes, her legs, the sound of her laughter.

They sat close for a few hours until Lillian, a single mom, had to leave. Stephen tucked her business card in his pocket.

The next day he called her office line. Stephen could hear her business partner, the woman from the night before, whisper, ‘It’s that guy!” He heard Lillian say, “Tell him to call back later.”

He did.

The rest, as they say, led to martinis, marriage and never-ending stories of adventure travel.

The prelude to disaster

Stephen and Lillian were flying back from Cuba on Jan. 3, 2018, when the first warning sign emerged.

“We were in the aircraft at 35,000 or 38,000 feet and she says, ‘I’ve got a headache and it’s bothering me.’ She continued to feel unwell after we landed, and I just wanted to get

our stuff and get home. I said to her, ‘Are you OK?’ And she said, ‘It’s just a bad headache.’ ”

The following morning, Stephen called Lillian’s family doctor. He told Stephen to get her to the hospital.

Those next minutes, when Lillian still seemed like Lillian, are locked in his memory.

He can see her, sitting in the red leather chair opposite her framed Janis Joplin poster on their living room wall. She wore jeans and a cream-coloured sweater, tanned from their week in the sun.

Beside her were ambulance attendants, asking questions, voices calm.

“Do you have chest pain?” they asked.

“I have a headache, and don’t feel very well.”

Stephen helped her down the front steps, past the icy perennial garden, climbing inside the ambulance. She lay on the stretcher. Stephen held her hand. As her face crumpled, he could tell she was frightened.

The closest hospital was Scarborough General. Nurses took Lillian for a CT scan. Roughly five hours later, Stephen says, doctors told him Lillian had suffered a brain hemorrhage. They transferred her for specialized care to Toronto Western Hospital, where doctors stabilized Lillian, but, over the next few days, it became clear to Stephen that his wife had changed.

Medical reports from Toronto Western said she had a large acute lobar hemorrhage within the left temporal lobe. A bleed. And while the brain is ever complex, the left temporal side controls speech.

Stephen watched as Lillian grew upset, unable to articulate words.

He tried to explain what happened, to calm her, although he didn’t know much about strokes.

She was restless. He tried to get her to sit up. A few days earlier, she had been doing yoga and now she couldn’t get out of her wheelchair.

Another hospital, then another …

Doctors at Toronto Western kept her a few weeks and told Stephen they were sending her back to Scarborough General.

Stephen protested. He remembered Lillian’s initial visit to Scarborough General, saying a doctor told him that they didn’t specialize in stroke patients like Toronto Western did. Stephen said he’d been under the impression Lillian could get rehabilitation and hopefully regain her speech.

On their way out the door, he recalls a kind nurse gave him a binder with details on strokes. Hemorrhagic strokes can be fatal, and Stephen was grateful Lillian survived.

A spokesperson for University Health Network’s Toronto Western says it is normal practice that, as patients stabilize, they return to their “home hospital” for ongoing care and decisions about next steps, such as rehabilitation, home or long-term care.

On Jan. 17, Lillian returned to Scarborough General, and 12 days later, an ambulance took her to Providence Healthcare, a Scarborough hospital specializing in rehabilitation.

Scarborough General’s discharge documents noted Lillian’s “behavioural” issues and delirium, a potentially devastating condition that research says is common among older adults in hospitals, often leading to extreme confusion.

Doctors said Lillian’s delirium had slowly improved, concluding it was likely a combination of her brain bleed and aphasia, a language disorder often caused by a stroke.

Stephen was unhappy with Lillian’s time at the Scarborough Health Network, saying he had wanted more speech rehabilitation.

SHN says: “Acute, inpatient units are not appropriate for every stroke patient, and we strive to make the transition to home, retirement home, rehabilitation, or other appropriate discharge options as easy and supportive as possible.”

Two years after Lillian’s visit, SHN opened a “Stroke Centre of Excellence” at Birchmount Hospital with, it says, “seamless stroke care including rehabilitation.”

After the stroke

In the beginning, Stephen had hope.

He believed, based on conversations he says he had with medical professionals, that Lillian’s stilted speech, her unsuccessful search for words, could improve through rehabilitation. He focused on finding a facility offering enough sessions to make a difference.

On Jan. 30, a Providence Healthcare doctor assessed Lillian and typed his observations in a letter to one of her physicians.

“She was alert but quite inattentive and had difficulty following commands,” he wrote, on Providence letterhead.

“She did not realize she was in the hospital, could not name the city … She was unaware that she has had a stroke.”

He noted she could not read the word “Pilates” in a magazine and while her speech was fluent, some replies were nonsensical. She could walk without assistance and her upper body showed “good bulk, tone and power.”

Dr. Morris Freedman, the head of the neurology division at Baycrest who would later treat Lillian through its Virtual Behavioural Medicine Program, explained the doctor’s diagnosis, with Stephen’s consent:

“In terms of the impact of the stroke in 2018, Ms. Ashley developed neurological problems after this stroke,” Freedman said, in an email. “As documented … these included aphasia, which is a medical term referring to neurological problems with speech and language.

“She also had cognitive problems. It was (the Providence doctor’s) opinion that the neurological problems were in part due to the stroke and superimposed delirium.”

At the time, for Stephen, it was overwhelming. Lillian grew angry, perhaps from fear or frustration at her inability to answer doctors’ questions. And the names of the drugs, Stephen says, from the antipsychotic haloperidol to the antidepressant trazodone, seemed to change with every new admission. Her smile was gone, he says. “She didn’t talk a lot. She wanted to mostly walk. I would take her outside, but it was still cold, so I’d take her to a coffee shop in the hospital. There wasn’t much of a conversation. She couldn’t retain anything.

“She was struggling inside, she knew something was different but couldn’t tell what it was. It was the worst thing that could have happened to her because she was a vibrant, outgoing person, she loved people.”

There was the one phrase Lillian could manage.

“Can I go home?”

A struggle to fit in

In mid-February 2018, Lillian got her wish. Providence discharged her to Stephen’s care for a few weeks before another facility could be found. She joined the Providence adult day program, but often refused to leave the house, fearing, Stephen says, that he would end their relationship if she was away. It wasn’t just fear but anger that now consumed Lillian. She raged at Stephen, verbally, never physically, he told doctors. Sometimes she became furious at the home care workers, refusing to let them take her into the shower.

Her time at the Providence day program ended quickly. Stephen says a man with memory loss, who always carried a robotic stuffed “comfort” cat, took a shine to Lillian and followed her, until she hit him.

The next day, Stephen says, a worker told him the program could not meet her needs.

Ultimately, Stephen says there weren’t enough rehab appointments to make a difference, and given Lillian’s fear of new settings, she wasn’t an easy patient.

Unity Health Toronto, which includes Providence, says it has been “working closely with the family member in this case to understand his concerns.

“We are committed to quality assurance and improvement,” which, its statement says, includes listening to patients and families to review processes. Providence patient-relations staff recently spoke to Stephen about his concerns.

In a March 2018 followup appointment with a Providence doctor, his notes described Lillian as a “lovely 66-year-old female” who insisted that she was doing well at home. Her responses to his ques

tions reflected her “expressive aphasia,” saying she would answer on a “completely irrelevant note.”

“She did, however, manage to say, ‘I lost a lot, and … I would like to get away with my husband.’

“She seems unable to appreciate,” he said, “the deficits in her functioning that make this almost impossible.”

The problem solver

If Stephen, who has a ponytail, plays guitar and seeks solace in the music of American jazz pianist Keith Jarrett, ever found himself in the corporate world, they’d call him “solutions driven.”

He worked for Canada Post downtown until 2015, the guy who calmly battled Bay Street traffic to deliver packages on time and with a smile. These days, at his neighbourhood haunt, the Birchcliff café, Stephen is known as the flower guy, bringing baristas perennials from his garden in re-used coffee cups.

Until the joints in his fingers grew stiff with arthritis, Stephen spent decades as a mechanic, specializing in Jaguars and Volvos although he also learned the dying art of “coachbuilding,” with specially made Packards and Bugattis.

He’ll break a problem into distinct pieces, find the source and fix it.

He’d been trying to solve Lillian’s problem by finding a rehabilitation centre, hospital or nursing home that understood she needed a calm and very slow, person-centred approach, enabling her to feel like she matters.

“People need to have stimulation, they need to have exercise,” he says. “They need to be engaged with things that are conducive to feeling better, whether it’s music or finding something that they can relate to, and feel like they’re a part of something.”

Ultimately, Lillian was diagnosed with vascular dementia. As it progressed, leaving her unable to manage daily needs, like toileting or dressing, Stephen took his wife from one psychiatric expert to the next.

Stephen knew Lillian lashed out at staff. He did not want staff to get hurt. He knew hospitals and nursing homes had a shortage of workers. But he believed she’d have been calmer if she had access to specialized rehabilitation and a different care philosophy, with an understanding of how to approach without scaring, or when it was time to change her briefs, slowly chatting to help her feel comfortable.

To manage the details of his life, Stephen started a journal in a thick, lined notebook. He would fill half a dozen, with precise capital letters. He documented when Lillian arrived at one institution, when she left and returned, such as Ontario Shores Centre for Mental Health Sciences in Whitby, where she would have multiple electroconvulsive therapy treatments that some geriatricians say can be helpful.

The professionals’ names in his notes changed as Lillian moved from hospital to nursing home to psych ward, but along the way Stephen encountered many people who met him with compassion, including a Providence Healthcare social worker, in the spring of 2018. “FRI APR 13 – NAVNEET CALLED @ ABOUT 3:30 JUST TO SEE HOW WE WERE DOING. SHE LISTENED TO ME TALKING AND CRYING FOR A GOOD HALF HOUR. SHE REALLY CARES AND TRIES TO HELP ANY WAY SHE CAN … SHE IS POSITIVE I AM DOING ALL I CAN AND LILLIAN WILL GET THE HELP SHE NEEDS.”

A few days later, Ontario Shores accepted Lillian as a short-term patient.

“APR 22 SUN 9:50 – SHE IS DOING REALLY WELL TODAY. HAD A SHOWER AND WASHED HER HAIR. FELT MUCH BETTER. CALLED BACK AT 4:45. SHE WAS BUMPING INTO WALLS. WAS IN A SPLIT SECOND AGGRESSIVE. PICKED UP A CHAIR AND HIT NURSE. (MARY) SHE WAS OKAY BUT LILLIAN WAS DARTING IN AND OUT OF ROOMS AND THEY HAD TO FOLLOW HER AND (WERE) EVENTUALLY ABLE TO GET HER TO LIE DOWN.

The following day, Stephen’s notes say he spoke to a psychiatrist who told him Lillian was healing well from the brain hemorrhage but struggling with cognitive issues.

But the doctor, he wrote, couldn’t advise him on how to advocate for long-stay care and rehab.

A nurse practitioner gave Stephen a straight talk about Lillian’s brain damage.

“This is when I started reading and trying to find out, OK, where are the support areas?

“And I find there’s really no place with one-on-one supports that will accept my wife as an inpatient. There were no other places I was aware of. There were just psych wards, which were not suitable,” he says.

It was Lillian’s need for purpose, music and close human contact that Stephen believed offered the greatest opportunity.

He saw how it calmed Lillian when he sat and quietly held her hand, or when he played the music she loved, rock and blues. Music can have a profoundly positive impact on the brain.

“I found the more caring I was with her, it had a calming effect.”

On Aug. 15, 2018, when Lillian’s time at Ontario Shores reached its end, Stephen ignored the recommendation that she go to another hospital.

He brought his wife home.

The spiral

As weeks turned to months, Stephen juggled the home-care staff, government-funded and private. They helped, but he did much of the caregiving. He took Lillian to the washroom. Helped her eat. And desperately tried to keep her from running down the street. He felt himself slipping.

A year later, on Oct. 17, 2019, Stephen noted in shaky letters: “SAW DR. CHAN. ANXIETY — STRESS. HE COULD SEE THAT I CANNOT CONTINUE THIS WAY I AM BURNT OUT AND HE SAID SHE NEEDS LTC.”

Stephen started looking for nursing homes with staff trained to anticipate residents’ needs. Always excited when he thought he’d found the right home, his energy drained when he got word that, after administrators read Lillian’s medical reports, none would accept her. Her records documented responsive behaviours and aggression.

“That’s the kiss of death,” says Dr. Samir Sinha, director of geriatrics at Sinai Health and the University Health Network.

“Nobody wants that because they don’t have the staffing,” Sinha says. “That’s exactly how you actually delay a person getting into long-term care. You mention that they have behavioural issues, better yet, significant behavioural issues. Nobody’s going to touch that person with a 10-foot pole.”

In late January 2020, Lillian moved into Fieldstone Commons, a Sienna Senior Living home in Scarborough, the only home that would accept her. It provided government-funded, one-on-one care throughout her stay.

Stephen says a Behavioural Supports Ontario worker at Fieldstone embraced Lillian’s care and created a biography of sorts, with photos, so staff could know the woman she had been.

That BSO report told workers about Lillian’s years of grieving over her son, Mark, a navy lieutenant killed by a drunk driver during a 2007 stopover in San Francisco en route to the Persian Gulf. Mark, Lillian and Stephen had been a tight little trio during his childhood, travelling around Europe, hiking together. His death, at 27, shook them.

Under the heading “TRIGGERS that increase responsive behaviours,” the report warned against loud talking and too many people. Being ignored is another trigger; so is being left alone.

It noted some success after drug changes in late 2021 (Lillian had recently started Baycrest’s Virtual Behavioural Medicine Program, offering expert advice virtually), saying Lillian was able to play cards, paint and colour. “At times, she has even engaged for almost an hour straight!”

Still, Lillian struggled. Stephen says the loud noises outside her room drove her to distraction.

It was the same in hospitals. Stephen started researching the impact of chronic noise, including a recent New York Times article that said unpleasant sound sets off the stress centre in the brain.

The pandemic hit and with government-imposed lockdowns blocking indoor visits, often for months, Stephen says Lillian started declining from isolation.

When the lockdown lifted, Stephen says Lillian’s teeth were starting to decay at the gum line.

Sienna Senior Living says: “We strive to ensure continuity of care by assigning a consistent group of caregivers who become familiar with each resident’s preferences and individual requirements. This commitment to personalized care was maintained throughout the challenging times posed by the pandemic.”

Sienna says it collaborates with outside medical teams, offering residents “various therapies and interventions” to reduce responsive behaviours, such as “recording the voice of a loved one, providing soothing messages to reduce agitation.”

Sienna’s chief medical officer, Dr. Hugh Boyd, says he reviewed the care Lillian received.

“I can say that the team implemented many individualized and person-centred strategies to support her,” Boyd says.

Not all residents experience relief and as a result, some may need more specialized care, he says.

“Unfortunately, long-term care is not always the most suitable environment for residents with highly specialized needs, and I have advocated for better access to specialized care that can be received such as that provided in specialized behavioural units.”

From her arrival at the nursing home in early 2020 to her departure in January 2023, Lillian was sent back and forth between Fieldstone, Ontario Shores and other east Toronto hospitals.

In 2022, at Ontario Shores, Stephen says Lillian had multiple electroconvulsive treatments. For a time, she grew calmer, although he wasn’t convinced the ECT’s were necessary, saying hands-on care made a difference, too.

Ontario Shores says the ECT is used for “treatment resistant behavioural and psychological symptoms of dementia including vascular dementia.”

The purpose, it says, is to provide some relief from “profound emotional distress” when other treatments, including medication, have not helped.

“Unfortunately, ECT effect is not a cure for these complex and persistent symptoms and the effects of ECT usually wanes within a few weeks, requiring repeated treatment.”

“People … need to be engaged with things that are conducive to feeling better, whether it’s music or finding something that they can relate to, and feel like they’re a part of something.

STEPHEN NEALON

The meltdown

On Jan. 25, 2023, it was time for another move.

Fieldstone, Stephen says, called to tell him they were sending Lillian to the hospital by ambulance, saying she was very agitated.

This time Lillian went to North York General’s psychiatric unit. Stephen says she weighed roughly 100 pounds on arrival, down from 125 before her stroke.

A few weeks later, Stephen says nurses began documenting her aggression. He says Lillian was soon kept in her room. Technically, Stephen says, the door wasn’t locked but she wasn’t able to manoeuvre the handle. North York General says when there is a safety risk it may close or lock doors at certain times of the day.

Stephen says a hospital official told him they didn’t have enough staff to risk losing workers to injuries, so at age 71, Lillian would be required to stay in that room with security guards beside her while workers changed her briefs.

The presence of men in dark uniforms while she was nearly naked triggered Lillian’s fear, he says.

“I couldn’t believe that this is how we treat people in this country,” Stephen says. “We can do better than this. I mean, this is not right.”

North York General says its use of security guards is rare.

“In exceptional cases, security may need to be present to prevent the patient from hurting themselves or others,” its statement says. “This is a last resort used to create a

safe environment to deliver care to the patient.”

In the next few years, North York General says it will build “one of Ontario’s largest” long-term-care homes with “private bedrooms and bathrooms for all residents and a continuum of dementia care and highly specialized support for people with responsive behaviours.”

Stephen believes that leaving Lillian in a room, alone, worsened her behaviour. Sometimes, he says, her knees had deep red scrapes from crawling on the floor, legs bare, leaving a trail of blood across the tiles.

Three more of her teeth fell out. In April of this year, Stephen was at peak advocacy. He was pushing hard for a bed in what he considered the Holy Grail of care, Baycrest’s behavioural neurology unit. That goal became his everything.

In mid-April, Stephen joined North York General staff — and, appearing online, Dr. Freedman, leader of Baycrest’s Virtual Behavioural Medicine Progfram — to discuss next steps.

A day or two later, Stephen walked to Lillian’s room and watched his wife through the small window.

Lillian wore a twisted Calvin Klein T-shirt wrapped over one shoulder and pull-up briefs that hung low, sagging on her hip bones. Stephen stepped inside.

The room had a bed. Nothing else. The floor was beige. The walls were beige. On the window were red heart cut-outs posted by Stephen to, hopefully, remind Lillian she was loved.

Lillian’s eyes never met his. “She really had this kind of blank look on her face,” Stephen says. “And she was so unkempt, you know, she just looked a mess, and she had nothing on, just the pullups (briefs) and this ratty old Tshirt.

“She looked like such a sad case. And her body was so frail — her legs were. That’s what struck me, because she had beautiful legs. I mean, she was an athlete. She took care of herself.”

It hit him then, how closely she must have resembled her father as he left Bergen-Belsen, nearly 80 years earlier.

“She had no muscle left. Everything had pretty much atrophied … because there was no exercise, she had no strength left in her arms or her legs, because they don’t do things like exercise.”

A few days later came a moment of reckoning.

Stephen doesn’t want staff to be injured by Lillian, but he was frustrated that the isolation may have increased her aggression. He says he protested the use of security guards in her most intimate moments. His voice was loud but, Stephen says, not threatening.

“I said, ‘You’re punishing my wife.’ I said, ‘How can you leave her alone in a room by herself? I had 24-hour care for her, at least, while she was in a long-term-care home. And you mean to tell me in a hospital that cares for people you can’t have more supports for her when she needs help?”

Staff, he says, called security to escort him out of the hospital.

“I thought that was way over the top because, you know, I didn’t threaten anybody. I didn’t get up in anybody’s face. I was just shocked and horrified that this could go on and nobody seemed to care.

“Well, even when the woman came up with the two security guards to get rid of me, I asked them, I said, ‘What do you think of this? Does this not have any effect on you?’ Like, the food that was all over the floor and in her bed and she was half-clothed, curled up in a ball on the bed.

“Is this really happening? Or am I living in a nightmare?”

A few days later, Lillian moved to Baycrest.

The problem, the fix

Five years after Lillian was shunted through at least a half-dozen hospitals along with the offices of numerous psychiatric experts, Stephen believes he has identified the gap in the system.

There are few options, he says, for people like Lillian whose brain damage leaves them extremely difficult to manage, particularly when there aren’t enough staff and those workers aren’t trained in personcentred care.

A solution, he believes, could be found in better access to specialized stroke rehabilitation for those who, increasingly frustrated, become challenging patients. He says hospitals and nursing homes need care that focuses on the individual, not rushed workers who startle patients, causing them to lash out, which labels them difficult. Stephen is right, says Dr. Sinha. “It breaks your heart when you hear stories like this, because you see a lot of missed opportunities,” says Sinha, director of health policy research at the National Institute on Ageing.

“She’s an incredibly complex patient who needs a more personcentred approach to her care, which takes time, which takes increased staffing. If you have workers who are well trained, who understand people who have dementia or other behavioural issues and have the time to give more specialized rehabilitation, there’s a chance that someone like (Lillian) could benefit to a certain extent.

“But the challenge is a lot of people don’t have the time. They’re rushed off their feet. They might not even have the training to recognize an opportunity to deliver more person-centred care.”

North York General is blunt about the impact of challenging patients.

“It’s well known that demographics are driving a rise in dementia rates along with responsive behaviours associated with neurological and other diseases and brain injuries,” its statement says.

“For example, we are seeing more adults with autism and diseases such as Huntington’s (which causes brain neurons to die) who are not responding to available treatments and developing, sometimes intractable, responsive behaviours. In severe situations, this can include violent behaviours like biting and hitting others and self-harm.

“There are gaps across health care for people with cognitive challenges and there is a great need to develop new tools to better support this patient population.

“The reality today,” the hospital says, “is that, despite the best efforts of health professionals, some patients fall through these gaps.”

Before, and after

On a dusty pink piece of paper, Lillian’s father, Kazimierz, told his story to the United Nations High Commission for Refugees. It was a 1962 application to the UNHCR’s postwar-World War Two Indemnification Fund, “for assistance to persons persecuted by reason of their nationality.”

It showed the date he was sent to a concentration camp, Sept. 13, 1940, and his “prisoner” number: 164080.

Lillian kept the original. His trauma formed her life, her nightmares, too. She was terrified that one day she’d recognize her father in a black and white photo, witnessing the moment that liberation brought him into the sunlight, and the camera’s eye. She didn’t want to see him as just skin and bones.

His record of imprisonment is found in the Arolsen Archives, an international centre that documents Nazi persecution.

There’s a line written in Kazimierz’s Displaced Persons record hinting at life before concentration camps, saying his “last permanent residence” was Biala Podlaska, an ancient Polish city along the Krzna River near the Belarusian border.

Lillian’s stay at Baycrest is temporary until she’s settled, behaviourally, and a bed in another institution is found.

Her last permanent residence was a brick house in Scarborough where she lived with a man who loved her and for a time, they filled their home with music.

“It breaks your heart when you hear stories like this, because you see a lot of missed opportunities.

DR. SAMIR SINHA NATIONAL INSTITUTE ON AGEING