Following on from my blog of yesterday – how I shortened my talk by just talking about symptoms and how I outwit dementia……I’m so glad I did.
I’m always thinking, ‘people must have heard all this before’ and am worried about repeating what they already know. But yesterday showed how so many people still aren’t aware.
After all, when you’re diagnosed, you have that clinical input of medication, if possible, but then what about the practicalities? No one, just no one, tells you what symptoms might affect you. Yes, we are all different, yet we all experience things in a different way, but there are common aspects, common traits, similarities…….so why aren’t we warned and told how we can adapt?
When I was first diagnosed and started to speak out, I naively thought that everyone knew our symptoms, the senses, visual peculiarities, gait – I could go on forever…..but I soon realised clinicians didn’t go through our symptoms because they didn’t know what they were!!! I remember being amazed and confused by their lack of detailed knowledge – I suppose I still am as there is so much they can do with that knowledge to help others….but sadly most healthcare professionals only understand the medical model and not the reality of dementia….
So now I always make a point of assuming no one knows anything and it’s surprising how many times that is the case……hence why healthcare professionals and family members were making notes yesterday….it was the first time they’d heard much of it…
They can offer us no cure so why not offer us adapting techniques?……..the simple cheap solutions that can make our life easier and calmer….yes, this goes away from the medical model of care and come under the social model of care….
Teach us about colour contrast, teach us about tips for when we hallucinate, the fact that our senses can be affected, teach us tips around the home……..all things that will help the whole family cope easier with dementia…..
Healthcare professionals can’t offer us any treatment, so why not offer learning opportunities. What better people to talk to than others with dementia who have leant tips and tricks on the way in this cruel game dementia plays with our brain…….just like we did at Minds and Voices with our 6 week course which the local mental health authority thought would never work……….mmmmm…