My wish list if I were to have Dementia

Dec 21, 2024

Dancing with Dementia - Dr Cecilia Chan
Last night, I watched the movie Out Of My Mind which touched me so immensely that it made me sob. I felt a sharp pain deep in my being, the pain for Melody, for her parents, and for the people around her who simply were unable to see her and acknowledge her as a person. The movie is about the life of a girl named Melody Brooks. Melody has cerebral palsy, a condition that makes simple things like eating, moving and even talking extremely difficult. Melody has a voice but no one can hear it. She is curious to learn, interested in her world, pining for connections with girls (and boys) her age, and has so much to say which makes it painfully frustrating for her because she is unable to communicate. It is as though she does not exist and her feelings and emotions are completely disregarded.

However, she is blessed to have a family that fiercely supports her and believes in her ability. The movie ends with her brilliantly profound message telling us that if we feel uncomfortable looking at her disability and feel disgusted because she looks different, that is OUR problem, not hers. She advised that we had better deal with it. I am tearing up as I type this; it resonates with my work.

People living with dementia face the same treatments as Melody daily. Yesterday I sat with our member ( let’s call her Mary) living with a diagnosis of dementia. Mary has an MMSE score (a test used for scoring dementia) of 14. Mary has minimal vocabulary and because of this, all her friends and relatives deserted her. I saw her waving at the dark clouds and making noises that we would label as nonsensical.

So, I went and sat beside her, and joined her staring at the clouds while she muttered on. We connected with our eyes. She began to hum a familiar Hokkien song and I joined her. Her joy was contagious because, in no time, I felt the simple joy in my heart. I felt honoured to share that moment with her, to play a part in her unhurried dance in her world. Watching her I did not see her as the victim of a debilitating disease but, rather, as an inspired messenger creating moments of joy. She was so absorbed in the moment – full of unfettered pure playfulness. When was the last time since I’d stopped to celebrate a moment so exuberantly? When was the last time I was mindfully aware of the beautiful gifts I am surrounded with? I am glad that I joined in and hummed and danced with her… This was one of the most intense and delightful connections I had ever had. Deeply touched, I thanked her for the wisdom she had offered me – reminding me in my crazy, hectic life, to remember to savour the precious gift of each moment. And I realised that…like the movie if I succumbed to my fear I would have missed this amazing gift entirely.

Joanne Koenig Coste who wrote Learning To Speak Alzheimer’s, puts the case succinctly as follows: “It isn’t Alzheimer’s that takes away a person’s dignity, it’s other people’s reactions that do it.” Having dementia then becomes a matter of how a person is perceived as a citizen.

What may be almost as difficult as living with dementia is living within the negative impressions our society has created. We tend to fixate on what people with dementia have lost, rather than the abilities they still have. Their families and friends often feel ashamed by the condition, as if it’s something to hide. It is so tempting to want to tuck them away so that their deficiencies won’t disturb and annoy anyone.

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 you 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 from us?

The world as it is in 2024 does not offer a cure for dementia, so we must focus on care. Dementia does not discriminate; it can happen to us. If it were to happen to us, what do we want? I know for sure that if I were to have dementia, I would want my life to be meaningful. I would want to connect with my world, which would include other human beings. I would want to laugh, to have fun, and to connect with others, however fleeting those emotions will be. I would want to know that there are people out there who would support me and allow me to enjoy my life to the end.

What would you want if YOU were diagnosed with dementia?

“The quality of a society, I mean of a civilisation, is also judged by how it treats elderly people and by the place it gives them in community life.” --Pope Francis

(Dr Cecilia Chan is a Gerontologist and Dementia Advocate and Activist. She can be contacted via WhatsApp (013-4384388).)