Speak out and be Counted
Paper given at the Alzheimer AGM
I remember so well that Friday morning late last year when Chris McGregor’s letter dropped through the mail box telling me I’d been chosen to go to the Toronto ADI as Alzheimer Scotland’s carer representative. I told no-one but you know how when you’re given a really special gift you tuck it away, and pull it out every now and then to enjoy it? Well, I felt like that all weekend … didn’t share the news with anyone … just savoured the sensation of closing my eyes and thinking ‘oh my goodness, have been chosen to go to Toronto’!
I live in a tiny hamlet called Portgower, in the Highlands of Scotland … with my husband Andrew and Lollipop – tamed wild cat – in an old croft with a big garden and wonderful views of the fields, the mountains and the sea. We retired there eleven years ago ready to do all the things we’d planned to do before we got too old to do them!
And then 6 years ago disaster struck. At age 58 my husband Andrew was diagnosed with Vascular Dementia. During those early years I was barely able to keep my head above water and the only reason I survived the journey was because right beside me every step of the way was an extraordinary woman, Sheila Murray, my Alzheimer Scotland support worker who guarded and guided me and taught me so much and was always there when I needed her.
So in August last year when she asked me if she could nominate me for Toronto, my first reaction was ‘goodness, NO, I couldn’t possibly do that.’ And her response was ‘why not? You’re a carer … you know more about what caring entails than anyone who is not a carer … so who better to go there and speak out about caring issues?’
She had hit the nail right on the head. If I was so adamant that people with dementia and their carers should not have to do this journey alone and that if as carers we knew from firsthand experience exactly what this lonely journey was all about, then surely who better to speak out for us but ourselves?? So I said yes …
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