By Dr Cecilia Chan
Gerontologist, Dementia Advocate & Activist
I was at a dinner recently, and someone casually asked me about my profession and when I explained, he simply shrugged and said, “ 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 life precious or only those we think are fit to be qualified as a human being? What if they are different than us? What if they are old, repetitive, forgetful, slow, silent, seemingly from a different world?
I have lost count of how many times I’ve seen people being impatient staring at computer screens or their handphones rather than attending to an anxious and confused person in an unfamiliar environment. How often do we talk over them during procedures as if they do not exist? How often do we assume that it is okay not to seek their permission before touching them, and then get puzzled when they express their displeasure, we even label it as BPSD( Behavioral & Psychological Symptoms in Dementia). Would it be okay for people to touch us without our permission? Why is it that we fail to recognize that despite all their losses they are still human- beings? If someone is forgetful or slow- does that mean they are less than a human, that their lives are less valuable?
Someone dear to me has a wife living with dementia. Their children had long migrated overseas. 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. I felt that slap on my face. How desperate must one 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 come from and 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 to look at it squarely in the eyes, that is our own eyes. What makes us human?
I quote Mahatma Gandhi’s compassionate plea ,” Let us be the change we want to see”.
