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Being diagnosed with dementia brought into my life two things which had never really been present before.
Firstly, a never-ending fear. Will I eventually lose all sense of who I am? Will I be unable to take care of myself? Will I forget how to speak?
Secondly, a frightening uncertainty. Am I repeating myself? Are my conversations reasonable? Are my actions ‘normal’?
Over the months that passed after receiving the diagnosis I found that I was most comfortable when I was alone. And yet there remained a certain sense of isolation and loneliness, particularly when it came to having someone to talk to about my condition – someone who might understand and be able empathise with what I was dealing with.
I looked online for groups supporting people living with dementia in NSW but I couldn’t find what I was looking for.
For that reason, in 2015 I established a public Facebook community page and a private online forum. The aim was to provide support for people living with progressive neurocognitive disorder and its associated conditions, as well as for carers, family members, friends and for those who simply want to be advocates for greater dementia awareness in the community.
The group name – ‘Joining the Dots for Dementia’ – relates to something that was said to me when I raised concerns with a clinician about my appalling test results on scores for memory and cognition. “Well, you join the dots Sarah,” they said. I didn’t. It took another’s eyes for the lines to be drawn and the picture to be filled in.
The community page and closed forum are regularly updated with research, information on brain health, diet, medication and any other topic that might be of use in relation to dementia. The closed forum also allows members to share their thoughts, fears, ideas and inspirations in an environment where privacy is considered a priority and where support is given freely.
While the main aim is to provide significant support to those located in NSW, those seeking the comfort and understanding of other people who are either travelling or assisting another on this path in life are most welcome to join, wherever they may live in the world.
On the page we value kindness and respect, our primary goal being to support our fellow travelers on this journey. The view is that life is difficult enough – the burden of life’s journey should not to be increased through thoughtless words. We can be found at facebook.com/groups/joining.the.dots.for.dementia.