I’m so happy our course has taken off in some areas. Even my own area in the East Riding commissioned one to start the other week, making it their 3rd in a year, so small steps making a big difference to many diagnosed. A course designed by people with dementia and delivered by people with dementia in my support group, Minds and Voices, to those recently diagnosed. We’re not naïve enough to think we can do it all on our own as we’d get in a pickle, get side tracked and chat amongst ourselves 🤣 so we have our able enabler Damian to keep us on track.
It was a glorious morning but I knew I mustn’t be tempted to go out. Typically the day before, when I was home, was grey and rainy 🙄….
Me and playmate Barbara were due to be the tutors this week. We give all my playmates in Minds and Voices a chance to be a tutor if they would like to be.
I was getting my things together, talking to myself as I did, checking things off out loud as today I wouldn’t need a coat and so much usually goes in my coat pockets 😂…..then the ping came on my phone to tell me my taxi had arrived. The taxi driver was a chatty fellow and had obviously been listening to the news on the radio, so the short drive was taken up by him telling me of the nonsensical mess politician make of things; how illogical and complicated they made things. Between us we came up with the answers for the topics of the day and as we pulled into Saturday market square, we’d put the world to rights by using simple common sense🤣 and the sun was shining…
The bus ride was a joy in the sunshine. The town cows were leading one another through the buttercups to their first resting place on the Westwood as the bus trundled by…
I got lost in some other writing and before I knew it we were in York. The journey that takes over an hour gone in a flash. As I crossed the river I looked longingly at the footpath besides but took a piccie instead of the oarsman getting ready for their mornings training
Damian picked me up opposite the station and we headed towards Lidget Grove. This course has been funded by the local CCG. We were expecting 8 people but 2 had rung in not very well. So we were down to 6. People started to arrive and we were soon laughing and chattering. The lovely Irish Alice arrived with her crack and filled the room with her tiny presence. The lady next to me, Helen, suddenly asked me where she’d seen me before….there followed the most gentle conversation that made my day. She looked all serious, and said…
“You helped me so much, 2 years ago I think, when I saw you in a magazine and read your book . I’ve seen you everywhere! I can go home and tell people I know Wendy…….” Her eyes were alight with joy and so must mine have been. People don’t realise that when they say things like that it makes my day too.
By the time everyone arrived we numbered far more than the 6 we expected – Damian had forgotten who was coming 🤣…he’s been working with us far too long 😂…
After so much chatter and laughter we finally started and gained some order of some kind. We went round the table and introduced ourselves finding out how people had heard about the course. One was from the memory clinic, which was one more than last time, so progress is being made.
One said “ I never had any blood tests or any tests which I found disappointing – the nurse who visited the house just said, ‘You have dementia’…..so I felt disappointed and coming here today you might be able to wave your magic wand and tell me all about it – it’s only what one nurse said” he accepted what she said but afterwards, she just kept on walking and said nothing else, no explanation…….whether he’d forgotten any other people or any other tests is irrelevant as that one occasion is the one that stuck….
Damian was very good at continuing this conversation. How it must be very difficult to understand and accept there’s something wrong when you feel as you did. It’s often others who notice the problems.
“ One thing I like about having dementia is we’ve met some really nice people” said one lady.
My double act partner for the session, Barbara, said the first time she came to Minds and Voices, she told her husband she wasn’t staying and was only going once. She came out of the first meeting and said to Colin:
“I’m coming back next week. It was like getting a whole new family. My older friends moved away, but that’s not how it should be”
At first one person was told it was Parkinson’s – that was 3 years ago, then a few months or so ago, was told it was Lewy Bodies dementia. This lovely lady heard about our course from Sarah the researcher who works with Dr Chris, clinical psychologist, who me and Damian are working with in a research project to prove this very course works!
Just fabulous stories. Who’s best to learn from, than others with dementia. Clinicians are rushed and simply don’t have time. They have a clinical view of dementia which is very negative and they come over negative. Then someone said it’s what’s you read. One playmate read all the books she could about dementia and she threw them all away because they were doom and gloom and then mine came along…☺️
It was a wonderful start and the tea break was full of conversation, huddles of people chatting, getting to know one another, sharing stories and making new friends. Just wonderful nuggets of ‘champagne moments’ as Damian calls them.
One said Boots the chemist opticians had a sign with the sunflower lanyard on saying if you see anyone wearing this they may need extra help. They then went onto say:
“we didn’t’ get any help but at least they had the sign’ 🙄
Goes back to what we say about our invisible disability.
We finally finished by going round the room asking everyone how they found the meeting. Well……it started with chatter and laughter and ended with chatter and laughter
“You’ll have the kettle on next week won’t you Damian?” Said a newbie……
Such a good session. Some had entered the room not knowing what to expect, a tad apprehensive, fearful, some said, but the apprehension and fear was nowhere in sight as they all left the room as though they had known one another for years…..
After Damian dropped me off back where we started, at the station, I’d just missed a bus and Damian asked if he should chase along to get ahead of it. But I declined his kind offer and instead, ambled around this once, what I thought was my forever home of York, until dementia came along, deep in my own thoughts, every now and then looking up and taking a snap of my own ‘champagne sights’