Navigating the Maze
Calgarian Lynne Kearns shares the story of her husband, Bill, and his challenging health-care journey
The journey from a dementia diagnosis into a full-time residential care facility is never an easy one on either the person living with dementia or their care partner. When Lynne Kearns’s husband, Bill, was diagnosed with dementia she was devastated, but Bill’s decline ended up being far more difficult and heartbreaking than she could ever have imagined.
The dementia caused severe changes in Bill’s behaviour, which made it impossible for him to transition into a nursing home. Bill’s journey reveals many gaps in our health-care system, and Lynne hopes that, by sharing his story, she can raise awareness and help advocate for better end-of-life care for people living with difficult-to-manage, complex dementia.\
Lynne met her husband, Bill Kearns, when they were both just teenagers — she remembers him as a charismatic and fun-loving young man with dreams of becoming a dentist. After Lynne finished university, while Bill was still in dental school, the two married and went on to have three children and seven spirited grandsons. Highly personable and extraordinarily generous, Bill had an ability to make people feel at ease. He was adored by his family and appreciated by his friends, neighbours and patients, and pretty much everyone else who had the opportunity to get to know him.
“He was lovely. He was a wonderful partner, and we had a very good life together.” Lynne says, reflecting on their marriage of 52 years. “He had a special facility to communicate easily and a great ability to diffuse tension. He was just a great guy.”
As they reached their senior years, Bill and Lynne pursued their passion for travel, exploring destinations around the world, and spending time with their growing brood of grandsons in between trips. Lynne lights up when she looks at photos of Bill on their travels. But those days of adventure were cut short in 2010 when, after experiencing some other health issues resulting in open-heart surgery, Bill was diagnosed with dementia. Lynne cared for him at home for six years, but as his symptoms increased, keeping him at home became difficult. Ultimately, it was more than she could handle.
“His behaviour was very challenging,” Lynne says. “He didn’t just fade away into the sweet night. In retrospect, there had been signs he had dementia before, but after the surgery, it was undeniable.”
“One of the behaviours that kept me in a high state of alert was that Bill, being very fit and recovering easily from the heart surgery, could run again, and run he did. He wouldn’t keep a locator bracelet or anklet on, and he would regularly disappear. I sometimes got my bike out, or took the car if I couldn’t locate him on foot, but when I found him he’d see me approaching and run faster in the opposite direction. Or he would take his bike, before I gave it away, and go long distances. Sometimes, in desperation, I would call the police to locate him. He also experienced a rapid loss of language, and being unable to communicate verbally was frustrating for him.”
Lynne reached a point where she was exhausted by those six years of caregiving, and it no longer felt safe to keep Bill at home. After careful consideration, she decided to place him in a private care facility. Things, unfortunately, did not go as planned.
“Before placement, I explained in detail what his symptoms were,” Lynne says. “And they said, ‘Oh, we can manage that.’ But they couldn’t, and he was only there for three nights.
“I hadn’t had any freedom for a very long time, and my sons and daughters-in-law encouraged me to attend a piano concert the third evening Bill was in care. Various family members stayed with him through supper and then made sure he was settled. I turned my phone off and enjoyed the music. When I turned it back on after the concert, there were several messages telling me to call immediately.
“Bill had some kind of an episode at the home. I still don’t know exactly what he did. He was fine when my kids left, but the staff said he became extremely agitated shortly after and, having zero tolerance for these types of behaviours, they turned him out at 9 p.m. that cold November night. Out of desperation, we took him to Rockyview Hospital, where he was eventually admitted to Unit 47, an acute-care ward. He didn’t leave Unit 47 until he died ten and a half months later.”
Bill’s placement at Rockyview was never intended to be permanent. After assessment, Lynne was eventually told the only placement option for Bill was the Managing Dementia with Expertise (MDE) Unit at Bethany Calgary. This became a catch-22, since the hospital environment aggravated his symptoms even more, and placement in the MDE Ward, for which there was a waiting list, became more and more elusive.
“Bill’s physician and the entire staff on Unit 47 were terrific, but properly caring for patients with complex dementia is really challenging in the best of circumstances, and almost impossible on an acute-care hospital ward,” Lynne says. “Imagine being terribly confused and then being trapped in a place where there are bells and whistles going off constantly and computers and stretchers cluttering the halls, which all lead to dead ends.”
Bill spent day after day in a small, poorly configured hospital room whose only window looked directly onto a brick wall. There were no windows to the outside world for Bill anywhere on Unit 47. The common space for the entire ward was being used as a hospital room for another difficult-to-place dementia patient, so no social or recreational space of any kind existed on the unit. Occupational, art or music therapy of any description was non-existent.
“The longer Bill remained in the hospital, the less likely he was going to be placed, because he was getting increasingly agitated. This resulted in him being restrained, both chemically and physically, which led to further decline,” Lynne says. “I can’t prove it, of course, but I think Bill went downhill more quickly in the hospital than he would have in a more appropriate placement. It was a miserable decline, and it was a miserable ending for a wonderful person who deserved so much better.”
After Bill had been in the hospital for about four months, Lynne wrote a letter to Alberta Health Services detailing the unsuitability of an acute-care ward for Bill and patients like him and identifying what was, in her words, “a gaping Alberta Health Services system failure.” But, despite Lynne’s efforts, no one did anything to improve Bill’s situation before he died. She doesn’t blame the staff at Rockyview or even the private care facility, but firmly believes that AHS must find better alternatives for caring for and housing people living with dementia who exhibit difficult behaviours.
“I don’t think the doctors and nurses liked the way things were,” Lynne says. “We had a terrific doctor. The staff was wonderful, but I felt utter frustration in not being able to enact any kind of positive change toward making Bill’s final days more humane.”
He passed away on Unit 47 on Sept. 27, 2017.
“It was heartbreaking, and it was unacceptable. And there was nothing I could do about it. It felt like I, too, was in a maze. I was shunted from one person to another within the Alberta health-care system over a long period of time, and, when months into this process, I was referred back to an employee I had spoken with much earlier and who hadn’t been of any assistance then, it became painfully obvious that the path I was on was hopeless. I couldn’t get answers anywhere, and it was clear that there was no possibility of a humane end of life for Bill. In spite of all my efforts, I couldn’t access a decision-maker. Something needs to change.”
The crux of the problem Lynne Kearns had in housing Bill was the unpredictability of his symptoms. Dr. Allen Power is an educator, public speaker and author whose life’s work has been promoting the idea that medical professionals look at people living with dementia as whole human beings.
While he doesn’t like the term “complex dementia,” Power does say that facilities need to shift their expectations surrounding “difficult” symptoms, rather than expecting residents with dementia to behave differently. Power suggests that care partners seek out care homes that approach residents as individuals.
When touring a care home, Power suggests noting these questions: Is staff respectful? Do they boss people around? Is there consistent staffing for personal care, or do “strangers” come in to provide intimate care every several weeks? Are the residents treated like adults, or children? Can they get outside daily? How do they refer to people’s distress and other expressions? What is their level of use of psych meds? [ ]