We arrive at Gayla June’s assisted living facility and are met at the front entrance with a warm greeting from her daughter, Heather. After being lead down a couple of hallways, we ultimately arrive at a passcode protected door. Behind it, a secured unit known as an SL4-D (supportive living level 4 – dementia), a space designed for those with moderate to severe dementia who may have a risk of wandering or unpredictable behavior, but do not represent a safety risk to themselves or others. Immediately after entering, you’re drawn to the bright colors line the walls, with creative posters next to each door telling the personal story of every resident living there. Before you can even meet her, you learn that amongst other interests, like reading and dogs, Gayla’s June’s love of children is clear, especially her own. She’d be happy to tell you about it for hours.
“I only had three children,” Gayla said. “Some people… they’ve got too many kids. Everything they want to do they can’t do. I didn’t have that. I always thought you’re far better off having fewer children and doing a good job with the kids you have because you have enough time for each one. And some of them are a little reticent and pull away… mine didn’t do that.”
“Mom’s often said the best thing about being married was the fact that she had the kids she had,” said Heather. “She was a very present mother… She had expectations of her kids but nothing untoward. Then if we ever did get into trouble, she was there and supported us through whatever.”
Being a rural teacher, her own children were far from the only kids she taught. “[My students] were doing something they didn’t like – math probably – and then I’d say, ‘Okay guys. That’s enough of that. Put it away, we’re going outside to play ball.’ I always felt that kids should be happy in what they’re doing. So many kids come to school and they hate school. They hate school, and there’s no reason to hate school, not really.”
“I think mom was always an advocate for kids,” Heather added. “She always volunteered. All things that had to do with kids, and making things fun for them.” That truly showed after she joined the seminary and became a pastor, even though she knew it wouldn’t be easy work. “When I pastored, I went to some families, and I couldn’t believe the animosity. I tried to talk to some of the adults… I was just trying to help because I think the kids deserve that.”
She recalled charming stories and significant details from her professional past with impressive ease. Although her short term memory now suffers, Gayla June’s long term memory is clearly intact, a common feature in those persevering through the earlier and middle stages of Alzheimer’s. “Bear in mind, I have no dementia,” Gayla June quipped, adding a light-hearted touch as we tried to delve into the history of her cognitive difficulties. She prefers to call them ‘memory issues’ anyway. “Mom was always very meticulous about her money,” Heather explained. “She kept reams of books of what she owed when, and when she paid bills and that kind of thing. It was noticeable because it wasn’t that kept up.”
With these ‘memory issues’ already noticeable, in October of last year, Gayla June had an occipital stroke that caused a few days of significant confusion, as well as some lasting effects. “I still have a pretty good memory, [but] I don’t read as much as I used to anymore. At one time, I did a lot. I love reading,” Gayla said. Heather added about her mother’s passion “Since the stroke, because her vision is off, she really hasn’t been able to read. She has said, ‘You know, I could read the same chapter over and over and I wouldn’t remember it the next day.’ So, we kind of joke that she only needs one book and one movie, and it’s always a whole new thing everyday! I wish there was a good author out there that would write a good book for people with dementia. Because she wants that feeling of being in the middle of a good book that you can’t put down. But [with the available books] you can’t.”
Assisted living soon became part of Gayla June’s life, and with the vulnerability that comes with cognitive issues, there are always some worries. “Somebody had befriended mom. I just saw somebody’s business card up on her bulletin board, and I said, ‘Who is this person?’ And mom said, ‘Oh a lady that wants to have lunch with me.’ And so I thought, ‘That’s odd. Now, it could be a really nice lady or it could be anybody.’”
I was just trying to help because I think the kids deserve that
Once we moved to the subject of dementia care in Alberta, the fierce advocate in Heather was revealed. “I’ve turned into one of those kinds of families that all medical people kind of shudder at meeting, because I want to be an advocate, and I don’t want to let things slide because it’s easier on staff. I think it behooves every person who’s looking after a senior to treat them with respect.” One of the main points of contention for Heather revolves around the calibre of conversation. “Why not ask [persons with dementia] meaningful things? I’ve got this and this happening with my kid at home, how would you deal with that? She knows things! Just because she’s old, and demented, doesn’t mean she’s not a smart person, doesn’t have wisdom.” One of the recreational therapy staff members offers Gayla June a cup of coffee and tries to ask her opinion on things daily, which Heather finds is excellent. “I wouldn’t want to talk about the weather with 50 people in a day. That to me is not a meaningful day. One half hour conversation about ‘How are we going to solve this’ or ‘What’s your opinion about Donald Trump’ or whatever, that’s more meaningful.”
Heather continued by expressing how the ‘one-size-fits-all’ ideology too often at the root of North America dementia care could do better by considering more person-centered efforts, like those made famous by a “dementia village” in the Netherlands. “[In Canada], the commonality is you’re old and you have dementia. That’s it. There’s no interest in common. In the model in the Netherlands they put people in facilities that suit their socioeconomic status, suit their education, suit their types of people that they would interact with… Here, in these kinds of places, they take all the kinds of things that a person can do to have a meaningful activity in their life. Why do everything for the person, especially when the person can do things for themselves?”
“I understand that it’s important to be safe and that’s why mom’s in a secure unit. That is important. But, to take away the individuality of the person. To have dementia be this big huge sign, when it isn’t, it’s part of mom’s life story now but it’s not her. Or it shouldn’t have to be.”
Heather and Gayla June’s impassioned opinions about optimizing the environment for dementia care should not be mistaken for malicious ones. They just want to change the way we interact with those living with dementia. Maya Angelou once said, “People will forget what you said, and they will forget what you did, but they will never forget how you made them feel.” As a woman who dedicated her life to helping guide often troubled youths, Gayla June has always been about making the future a better place.
“Thank you so much for coming and talking to me today,” Gayla concluded as we prepared to leave her suite. Although she mentioned that the biggest challenge nowadays is “Finding purpose,” really, it’s Gayla June that we need to thank, for reminding us that wisdom and compassion are greater measures of human value than pure cognitive ability. The next time you hear someone mention they have dementia, ask them about a dilemma you’re currently going through. You might be surprised by how much you can learn.
Background & Information
Initially there were features of Alzheimer’s that affected Gayla June, such as early memory and executive functioning impairment. The cognitive changes accompanying the occipital stroke that came later would be classified as vascular dementia. When there are features of both Alzheimer’s and vascular dementia present, it is referred to as a mixed dementia, a subtype that is becoming increasingly recognized. A study focused on post-mortem brain pathology in individuals with dementia found that about 1/3 of patients diagnosed with vascular dementia will have pathologic features associated with Alzheimer’s on autopsy. Another study found that patients with clinical dementia are more likely to have combined pathology than either type in isolation.
Innovative programs to facilitate aging-in-place and promote person-centered care are present internationally, and efforts are being made locally and provincially as well. At Gayla June’s secure facility in Edmonton, staff members are encouraged to eat their meals with residents and converse with them, rather than having separate dining areas. Currently being constructed in Calgary, the Laneway Housing project is designed to keep frail elders safe and living in close proximity to family, while fostering independence when possible. Butterfly care homes are being developed internationally, which focus on dementia care training that emphasizes emotional connection and emotional intelligence. The Hogeway dementia village in the Netherlands, which Heather referenced, may be the gold standard of emphasizing this person centered care. It features over 200 “villagers,” who are trained nurses and caregivers dressed in street clothes. Although a secure site for those often with severe dementia, the structure allows residents to roam and explore, and encourages residents to help when they are capable.
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