So after a rubbish week, that I now believe has turned into the ‘norm’, I was back out and about yesterday. What I thought was simply a bad week, I now realise was dementia progressing. I’m trying hard not to think of the confusion and at least I can still type….so I’m very lucky.
I was trundling on the bus to York to meet up with playmates from Minds and Voices as Edinburgh University had asked us to be involved in one of their projects around peer support.
I must have got in a pickle booking the taxi as he thought he was taking me to the railway station but was happy to do a detour and drop me off at the bus station instead. The bus arrived and we were soon trundling past a sunny Westwood with happy dogs taking their owners for an early morning walk. The golden yellow fields my favourite sight this time of year stretching out for miles into the distance, the upstairs of the bus the perfect viewing point.
Damian was picking me up at the station and was there waiting when I arrived. Edinburgh liked the fact that we ran our own course and they have come up with their own which they want us to look at. The aim of their course is to look at the reasons people DON’T acccess services and their project is called “Beyond the Margin”……..
Julie arrived from Edinburgh and brought all the paperwork. I was saying how I can’t wait to get before ethics committees to change their view of consent forms as they can be soooo simple yet are sooooo complicated for people with dementia……..just the fact that we have to sign and not tick each box is extreme…….anyway……..rant over……that’s for another day.
Damian started off with Julie and we just said our hellos. We’re all advisors to this project…..and had to sign the usual forms…….
Paul said ‘We need you to sign an indemnity form in case you get as daft as we are’…..😂🤣 – magic 😍
They are looking at post diagnostic support and want to learn from our experience of running a course and how we actually came to attend the group, Minds and Voices. So finding the reason why people don’t come to peer support groups or why they do, who refers you etc.
Julie went round asking how we came to go to Minds and Voices, what was difficult, what we found good or what put us off.
We’d been asked to bring a photo but of course most forgot, so Damian drew some ‘likenesses’
I said how I was reluctant in the beginning as I had this image of ‘the end’ and people just sat around. As soon as I walked through the door I saw how wrong I was, as my playmates were chatting, putting the world to rights and best of all, laughing…….but it was so hard to walk through that door not knowing what was at the other side……..
Everyone else told their story. How partners and those closest to them helped them to get to the group.
Alison, who finds it hard to speak, did brilliantly, telling us how hard it was for her to get a diagnosis and how York missed it and specialists in London diagnosed her after 2 years. I asked her if she could type and she could, so I suggested it might help her to get her sentence down first by typing if it’s difficult to find the words speaking. She was going to give it a try
Stewart said that for him there’s an optimum number. Ours is small but perfectly formed and anything bigger would be overwhelming. A lot of us agreed with that. Sadly, although we want more playmates, too many playmates creates too much confusion and can often isolate the quiet ones. Some people like to hide in large numbers, others are stifled through large numbers.
It transpired that we were all here through pure luck. No professional told us about it – it was who we knew, that told us about it. Just luck…….how sad…
I said how it needs to start from the health professionals at the beginning, thinking differently. They always talk about how there’s nothing ‘they’ can do, but forgetting there is still so much ‘we’ can do…..
When I spoke today, I felt I was all over the place, it seemed much harder to string the sentence together yet here I am, typing, and I’m fluent…..😔
Eric said the most wonderful thing at the end to me…………
“Your book is the only book I’ve ever read in my life from start to finish, I couldn’t put it down’…….
I had to get up and give Eric a hug…………what a lovely way to finish the session….❤️
I’ve got the busy week that will hopefully help me, including me and Sarah live on ITVs ‘Lorraine’ programme on Thursday morning and an appearance at York Waterstones on Thursday evening.