Mum's last Christmas

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.

DC soul spirit & 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

Mum’s last Christmas

 

Save

Save

There are many ways for a person with dementia to stay connected

Welcome to Dementia Connections

Dementia can be a lonely, confusing and emotional journey for all affected – both the person living with dementia and the loved one wondering how best to support them.

Having walked this road with my mum for fifteen years, I am passionate about sharing the things that helped me to cope, and that kept Mum connected to life, love and meaning.

Through my Blog and Facebook page, Dementia Connections SA, I hope to build connections with inspiring people, information and resources. I live in Cape Town, South Africa (SA). Wherever you live, I hope you’ll share your experiences and ideas with the community.

Here are some of the themes we’ll be covering:

There are many ways for a person with dementia to stay connected

There are many ways for a person with dementia to stay connected

I’ll be blogging about these themes, and also sharing words of inspiration, hot tips, cool activities, and links to a global network of dementia advocates, researchers and supporters.

Here’s a taste of what you can look forward to:

  • Soul, spirit & sense of self: What is the ‘soul essence’ of your loved one with dementia? What meaningful and delightful activities can you enjoy together?
  • Loved ones & communication: When it’s hard to hold a conversation, how else can you communicate about what really matters?
  • Access to nature & community: How can we prevent people with dementia ending up trapped indoors and disconnected from life?
  • Healthy living & dementia prevention: Can we lower the risk of getting dementia? Can a healthy lifestyle help?
  • Research, design & technology: What are we discovering about dementia? Can design and technology improve the quality of life of people with dementia?
  • Support for care partners: How can care partners become more resilient and avoid burn-out? What support is available?

The dementia journey is hard – but it can also transform us. Just know that you don’t have to walk it alone.

With love and care

Alice

We all need to connect with people and nature

We all need to connect with people and nature

 

Save