Dementia is a disease of the brain, not of the soul

Today’s Dementia Connections blog focuses on the topic: Soul, spirit and sense of self.

This is one of the most poignant articles I have read about dementia. It encourages us, as family members and friends of someone living with dementia, to connect soul-to-soul with our loved one.

It was written by Rayne Stroebel, the managing director of an elder care organisation in Cape Town called Geratec. I am hugely grateful to Rayne for permission to share his article with you.

Dementia is a disease of the brain, not of the soul. Dementia erodes our ability to reason, it does not erode our ability to feel. Our emotions are often amplified by the fact that the cognitive filtering is affected by the disease. We feel more, love more spontaneously, cry a lot easier and laugh more freely. We are often less inhibited, showing emotions that we would not dare show BD (before dementia). We are intensely vulnerable. We pick up on body language and facial expressions, even though we cannot respond in the way we used to. We know, yet we cannot express our intentions.

Dementia is a disease of the brain, not of the soul. Next time you decide to not visit us on Christmas Day, please think again. Even though I do not remember your name, I know who you are. I know what it feels like to have mothered you. I feel the love of a mother every time I see your face. And if I do not respond, that does not mean that I do not feel. My bond with you is not a cognitive one – it is an emotional, spiritual one.

I do not have to think to feel.

I know it is not easy for you. It is not easy for me either. You can escape to your ‘real’ world, I am trapped. You can go back to your family, cook them dinners and discuss how you hate visiting me. You can run, and drive your car, and shop. I am trapped. But I can feel …

So please think again before you say, “She is no longer our mother.” My being your mother will never change. Your face, your presence, affirm and validate my entire being. So please come and visit. Sit with me, be with me. You don’t have to talk. Or pretend that you enjoy being with me. Just be with me. Because dementia is a disease of the brain, not of the soul.

I am still here …

Mum’s last Christmas

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