By Cecilia Chan
I was at a dinner recently, when someone casually asked me about my profession.
When I explained my work with people living with dementia, he simply shrugged, saying: “Why should I bother? Why should anyone bother?”
That statement hit me hard. Why indeed should we be bothered about people living with dementia?
Is every person precious or only those who we think are fit to be human beings? What if they are different from us? What if they are old, repetitive, forgetful, slow, silent, seemingly from a different world? People are often too absorbed with their devices or screens to help those in unfamiliar settings.
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How often do we talk over them during procedures as if they do not exist? How often do we assume that it is OK not to seek their permission before touching them? And then we get puzzled when they express their displeasure. We may even label their reaction as BPSD (Behavioural and Psychological Symptoms in Dementia).
Would it be OK for people to touch us without our permission? Why is it we fail to recognise that, despite all their losses, they are still human beings? If someone is forgetful or slow, does that mean they are less human, that their lives are less valuable?
Someone dear to me has a wife living with dementia. Their children had long emigrated. She is the love of his life and still is after 60 long years. He is afraid of their future and he shared with me his wish to kill his wife before she becomes a ‘living dead’, a ‘zombie’.
I could not stop my tears from flowing. His poignant words felt like a slap on my face. How desperate must you be to want to kill someone you love because their future is so bleak to spare them the misery?
What does that say about our culture? Dementia, like old age, does not exist in a vacuum. We as a society make a huge difference.
We, as human beings, have a longing to be seen, understood and accepted for who we are. We all need people who would lovingly confront us when needed but also try to talk to us first, to understand where we are coming from and to support us.
Perhaps when we encounter someone living with dementia, it threatens our selfhood. Could it be that it triggers us to think of our future disgrace? It could be us in the future. We could be wearing diapers, forgetting how to use a spoon, begging for our mummies. So, we turn away, not me, not us, but Them, the disgraced them.
Being a human being is so complex, it is beyond just cognitive ability.
Maybe it is time for us to start by looking directly at our fear, by looking it squarely in the eye: what makes us human?
I’ll end with this well-known compassionate plea: “Be the change you wish to see in the world.”
Dr Cecilia Chan is a gerontologist, dementia advocate and activist
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