Recently, Nina Lee — one of Dying With Dignity Canada's monthly donors — offered to share her powerful perspective with us. As an employee at a long-term care facility who works primarily with individuals living with Alzheimer's, Nina (not her real name) has been confronted by the tragedy of Alzheimer's disease time and time again. Now, she's using her heartbreaking experiences to speak out in support of advance consent.
When people ask me to describe my job, I usually say, “It’s a wild place, but I love it,” or “It can be pretty challenging, but we have a lot of fun.” All of this is accurate, but I tend to sugarcoat reality in casual conversation. Why? My feelings toward my work are incredibly complicated.
I have worked full-time as a recreation provider in a long-term care facility for almost seven years. We don’t use the language anymore, but I work on the “Alzheimer’s Ward.” I run programming in the mornings and afternoons, and assist with mealtime assistance and feeding every lunch. Throughout the years, I have seen it all. I tell people I sometimes get 10 hugs a day. I tell funny anecdotes about what the residents have said to me. I share pictures of the crafts and baking we do. People think this is all wonderful. My job is wonderful, and I love doing it.
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However, I’ve been the recipient of repeated physical aggression. There are days when more than half of the hugs I get daily are from weeping residents, who can’t figure out where they are, why they can’t find their infant children or parents, or what is going on around them. I’ve watched numerous residents slowly starve to death. I’ve had residents confess to me that they are now hallucinating, and it scares them. I have been told “I want to die” many, many times. And you know what? I get it.
To be really good at recreation with this population, you have to be a bit of a glutton for punishment. They respond best to me when I approach them as an old friend, so while they might not know me, I appear to know them. I do more than work with them — we befriend each other. I work exhaustingly hard to build a successful therapeutic relationship with them. I learn everything I can about their past, their interests, and their life experiences. I grow to care for them as individuals, then watch them each as individuals begin to waste away until each one succumbs to death. Then, a new resident moves in a few days later, and lather, rinse, repeat.
“Don’t get too attached,” they tell us. Well, it’s just not that easy. To be sincerely interested in answering the same questions and hearing the same stories all day every day with more than 40 residents, I have to care.
Some folks move in, feeling relatively content. They may maintain that feeling for a few years, but ultimately every person does eventually decline and, in so many ways, they suffer. What I have seen in the last seven years is something I carry in my heart every day. I spend so much of my daily energy redirecting and reassuring people, but the anxiety will often persist. The lack of proper drugs to treat the disease means that many end up on anti-psychotics that affect their quality of life in other ways. There is very little that is pleasant about the way things progress.
Once someone loses their faculties, they make so few choices for themselves, which is a never-ending stream of theft of self-worth. Giving people with dementia the right to consent to assisted dying in advance while they are still of sound mind allows them to exist with increased dignity because they will be able to control how their life plays out in the end.
When residents pass away, I seldom cry. I see, for many, that it was their time. They told me they wanted to die, so I am relieved for them. When a tear does come to my eye, it’s because of the everyday occurrences.
It’s watching them fall for the third time this month.
It’s seeing a resident rolled up in a ball in a chair rocking back and forth crying, clutching his hair, and alternating between saying the words “my head, my head” and his wife’s name.
It’s seeing the spouse of a resident weeping in his car after his wife said she didn’t recognize him despite 50 years of marriage.
It’s being unable to redirect the resident who has been wandering four hours straight, because she just “can’t sit down.” It’s seeing her the next day, crying in bed because her back, legs and feet are so sore, but she has no idea why. And it’s knowing she will be up, doing the same thing the next day — stuck in this perpetual loop of wandering and physically aching.
It’s having a resident tell me that she “just…can’t” when you refer to the plate of food in front of her, and realizing it’s not that she doesn’t want to eat, but that she just doesn’t know how to. And then, having that resident refuse to let you help her, and knowing that this is how her life will end.
These reasons and more are why I support advance consent. It’s not about ending lives, it’s about ending suffering.
Dying With Dignity Canada is immensely grateful to Nina Lee for using her powerful voice to advocate for advance consent.