Walking into their beautiful home in southern Edmonton, it’s easy to get distracted by the plethora of family photos displayed throughout, emphasizing what a close-knit unit the whole group is. Honestly, Myrna and Wayne would be happy to tell you about how much their children and grandchildren mean to them for as long as you might listen. The centerpiece of it all is a large, gorgeous book full of photos and memories that Myrna’s eldest daughter put together as a 50th wedding anniversary present. As we also found out very quickly, Myrna and her family are quite open when discussing emotions, the past, and the future.
“How young do you want to go?” Myrna began with a chortle as we asked her to tell us about her life before her diagnosis. “I was blessed to be born into a family where I was a mistake. I was the only girl; my brothers were ten and twelve years older than I was, so I was cherished by my father and mum.”
She continued by telling us about her husband Wayne of 56 years, who was seated in the chair next to her, staring affectionately as Myrna told her story. You can see the sparkle in her eye as she recalled young love during her college days, and his car was amongst her most vivid memories. “I met Wayne at university. He drove this old Austin, painted bright blue, and one of my friends rode in it with him. We clicked it off and got married, and have had two wonderful daughters who have given us two great sons [in law], and 5 delightful grandchildren.”
“We’ve had a really good marriage. I mean, we’re still talking and all those good things!” Myrna said with a grin. They met in Vancouver, and they moved to Grande Prairie when Wayne was offered a three-year long job there. “He told me, ‘I found a house. I don’t know if I like the house, but I sure like the lady that [currently] lives in it! I think you need to get up here.’ When the three years were up, we decided we didn’t want to leave. We loved it there. We ended up staying in Grande Prairie for 38 years.”
“They kind of adopted us as we moved into a new community,” Wayne said of the couple they bought their home from. Myrna particularly appreciated it, as she found the community allowed her to give back more than in British Columbia. “[There were] opportunities to be involved in things like the Home for Battered Women. I was involved with that, and I was able to work with some of those women. I had opportunities I would never have had living in Vancouver, to do a lot of things. It expanded me. It did. People were always… they were kind. I think people are more cut off in a large city.”
“When you see people take control of their lives and walk away feeling like, ‘Yes, I can manage this,’ that’s a gift.”
Myrna started off as a teacher, before taking a career break to focus on family and being at home with her young children. “Both Wayne and I felt very strongly that that was important, and we were fortunate that financially we could do that. I didn’t work at all when the kids were young, so that allowed me to be involved in things with the kids.” As the children started growing up, Myrna’s desire to give back to the community continued to grow, though. “I had a friend who was really involved in the community and had a lot of connections. I started working for her. Then, because my interests had always been children – and I can’t remember how this all happened – but I ended up being a counsellor. I did take training, they didn’t just throw me in an office” she explained with a laugh. “I didn’t just work with kids – I did a lot with teenagers, and with families. I also did counselling with couples. I was very diverse with what I was doing, and I loved it. When you see people take control of their lives and walk away feeling like, ‘Yes, I can manage this,’ that’s a gift.”
She worked up until 2006, when her love of golf overtook her love for work. “I think [I played] five days a week. Then I started having some physical problems. I had to give up golfing, which I really mourned because I did love it. I didn’t really care how I golfed – I mean, I got excited if I hit it – but it was the social [aspect], and the being out there and just being with people. I loved that.”
They moved to Edmonton in 2011 to be closer to family, and although that has brought them great joy, they find they really miss that sense of community that they had in Grande Prarie. “I really miss it. Since I moved here I haven’t really made any connections to do that,” Myrna told us. Luckily for her, a neighbour across the street invited her to play bridge. “She got me involved in her bridge and golf groups. I’m unable to golf now, but we still play bridge, and we still meet the group for lunch twice a month.”
Myrna and Wayne can certainly appreciate how they’ve lost some of their social network, and are quite insightful when discussing their own mortality, and some of the inevitabilities of life. We can’t live forever, and with an aging population, developing heath problems becomes more of an expectation than an unfortunate outcome. Somehow, in a strange way, Myrna always felt that dementia was expected. “It’s been a while. I always have felt – because of my dad, and I don’t know why – it was going to happen to me. I think part of that is because I’ve always had memory difficulties, and it’s gotten worse, of course, with time. There were little indicators that told me, ‘I think this is going to happen, so just get ready for it, and live with it.’ That’s kind of where I’ve been for many, many years. Before it even became noticeable, I think. I wasn’t shocked. I was thankful it happened now, and not when my dad had it, because there really wasn’t a treatment. Actually, I don’t know if there’s a [good] treatment. There certainly was not the care or the support that there is now, though.”
Without prompting, as we began digging deeper into her cognition, Myrna’s defense for her autonomy – that is, her ability to make her own decisions as a capable adult – became very apparent. “I feel very strongly that I have the right to say when I go.”
She took a deep breath, and tears began to course down her cheeks.
Discussing Medical Assistance in Dying (MAiD) is a challenging subject for experts, let alone someone who it may personally affect. “I guess my thinking is they can have that law, but I don’t have to abide by it. I don’t know how I will be able to work around that, but I’ll think on it. I haven’t talked to Wayne about where the line in the sand is. I want it to be when I am still cognisant that I am saying, ‘This is now.’ I don’t want him to be saying that. I know my family will support me in anything I want, or need, or choose, because that’s how we are. That’s the kind of family we are.”
They have gone through many of the necessary legalities: power of attorney, living wills, and so on. Myrna has even casually mentioned it to her family doctor a couple of times. Wayne mentioned another document to compose: “The documentation of somebody’s wishes. They have no legal influence, but they do tell a story, and I don’t know what the courts are going to be like five or ten years from now.” From his understanding, the decision is up to the physicians. “They have to say, ‘Yeah, it’s the right thing.’ And of course, a lot of doctors won’t do it regardless. It’s an ethics thing really, no question about it. I’m just hopeful that as time progresses it’ll be less of a stigma in society. People have spent a lot of money to go to Switzerland, Belgium, whatever in Europe, and have it done. I don’t think that’s right.”
Myrna’s father had dementia, which has been a factor with her stance on the subject of MAiD. Wayne had only kind things to say about him. “He was one of the few gentlemen that I have met in my life.” Myrna continued “I have to tell you, my mother and father had a wonderful relationship. But back then, of course, my dad laid in the bed and he had never – I don’t think in their whole marriage – said a mean word to my mother, nor had he ever swore. But he would look at her and he would say, ‘I hate your fucking face. I wish you were dead.’ And she believed he always felt that way. No matter what we said to her, she couldn’t buy it, because my parents were both very honest people. If you said it, it was true, and it was what you meant. So, her last years were awful because he died, and then she lived with that. And I’m not doing that to my family. You should be able to choose when you go so you can leave with some dignity, and not laying there. Just, nothing. Those are my wishes.”
“I feel very strongly that I have the right to say when I go.”
Wayne has plenty of personal experience with dementia, and an abundant amount of wisdom that comes with that. He lost his sister-in-law quite quickly, but his friend is going through a different journey with his wife. “Myrna met her at university, and that’s what our connection was. He’s one of the guys that I have coffee with, have lunch with, and his wife has been in an institution or facility or whatever you call it, for seven years now. He’s my age. He goes every day. He’s never missed a day in seven years. I don’t think he understand why he should be so concerned for himself. Often a lot of the literature says the caregiver has to look after herself or himself, in order to be doing the job they’re doing, but he’s never done it. So, that’s how it touches you sometimes in your life. Not necessarily family, but now your friends.”
While reflecting on what has aided them on their journey, Wayne had a definite answer. “I find the most helpful, at this point anyways, has been the [Alzheimer’s] Society. Both of us are generally there on Thursdays, that’s our day. They call it ‘The Merry Makers,’ and it’s targeted at women in the early stages of the disease, and it’s kind of a social gathering, basically. There’s also a gathering [for] the caregivers. It’s basically sharing, in our cases, information about how they’re coping. It gives you a better understanding I think, perhaps of what may be down the road. Myrna’s social skills started to come out immediately, because there was someone there who Myrna [would] smile at and say something to, and she would get no reaction at all. Over time the person started finally smiling when Myrna smiled. She doesn’t give up!” Myrna finished the thought by saying “I’m a people person, and I think we all need that [interaction].”
Our interview brought moments of heartbreak and laughter, but Myrna and Wayne truly knew how to end it on a high note. Both of them have physical ailments now, leading to the necessity of a mobility aid – in their case, a walker. While graciously thanking us for our time, we were being guided out the door, with both of them trailing behind us in their walkers, and Myrna pushing the pace. “I’ve had my walker much longer than his, so I’m an expert with mine and [I’m] faster!” Myrna piped in, causing the room to fill with laughter yet again, as we imagined the races around the house that have ensued. You’ve got to have a sense of humor to get through life, I think 😊,”she concluded.
Age and disability may dampen your physical abilities, but as Myrna and Wayne showed us, it doesn’t have to dampen your spirit.
Background & Information
In February 2015, the Supreme Court of Canada unanimously ruled in the case of Carter VS Canada that it will no longer be a criminal offence in Canada for physicians to help someone end their life in certain circumstances. Effective June 2016, new legislation has been put into place to allow Medical Assistance in Dying (MAiD) when provided by physicians and nurse practitioners in Canada.
To be eligible the patient must: be at least 18 years of age; have the capacity to consent; have made a voluntary request; have a grievous, irremediable medical condition causing enduring suffering that is intolerable to the patient, that cannot be relieved under conditions the patient deems acceptable. The disease must be in an advanced state of decline, and death for the patient (from some cause) must be reasonably foreseeable. The condition causing the suffering does not need to be fatal or terminal.
A competent adult has the right to declare intolerable suffering, and it is up to the physician/nurse practitioner to determine whether their condition is “grievous and irremediable.” At this time, focus groups exist that are trying to determine 3 challenging cases: the mature minor (<18 y/o), psychiatric illnesses, and advanced directives (i.e. planning for when demented). Currently, advanced directives for MAiD when a person reaches a certain “stage” of dementia are not being honored.
For more information in Canada, please visit: https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html