When diagnosed with dementia people can often disappear into a dark hole, having been offered no hope by many who diagnose……this is what happened to me, 5 years ago to this very day….July 31st 2014. I was given a sad look, a handshake and told there was nothing they could do. I felt abandoned and didn’t know where to turn…..
Now 5 years on and this is still obviously what can happen to people in York as those who diagnose have failed us yet again and failed the people they diagnose. Once again the local diagnostic service has felt unable to signpost people to our wonderful course. The course that can give them something they can’t…….HOPE…….all they do is hand out a pile of leaflet and our telephone number; no words of encouragement, no practical support. The mental health team told Damian they had too many numbers to deal with but that’s why they need to look at their system a different way……their role doesn’t end with a diagnosis……..
Well undeterred by their lack of foresight or support for our course, yesterday was session one of a new hope for the new class of 2019…….we want to try and give them that missing commodity – emotional and practical advice from the very people who have been there and got the T shirt. Because our course has been designed by and is delivered by people living with dementia – me and my playmates at Minds and Voices with our lovely abler enabler Damian.
It meant an early trundle on the first bus, changing at Pocklington. I looked at the weather forecast , a tad sceptic after it lied to me yesterday. It said dry and as I looked out of my back window, the sky looked promising….
I decided to believe the weatherman once more and went coatless…….🙄…..The taxi man was on time as was the bus and the town cows were busy grazing on the Westwood as we trundled by.
But it was the sky above the wolds that make me wonder if I’d been duped again…..but time will tell
I arrived in York to find a torrential downpour in full flow🙈 must stop watching the weather….
I eventually ambled to the station and was accosted outside by a woman who said she knew me…..😳….turns out it was Lola from Hexham who was coming to watch our course today. AND she’s been emailing me as I’m going to Hexham in September to meet their playmates ! People seem to know more about me than me……🤣😂
Damian arrived and we made our way to Lidgett Grove which gave me, Damian and Lola the opportunity for the obligatory selfie…
There were due to be 5 people living with dementia on the course and two with partners, so 7 in all and me Brian and Peter were this weeks tutors……
The first at session is a settling in session where we want people to feel at ease and in a non judgemental environment. Most of all we want to get it right and Damian was super organised……very unusual 🤣😂🤣……….but just shows how much he cares…
Everybody started to arrive…and we met some lovely new people…….all different ages, some with partners some alone…….
Damian started off the session. Welcoming everyone………we went round the table and said hello to everyone…….
Simone from Belgium was there again – he came to Minds and Voices last week……..
To some it’s all fairly new……their stories reflected so much of what we’ve heard before…….denial…negativity from healthcare professionals…..
The subject of driving came up and the loss felt at being told they couldn’t drive…..and travel insurance and assisted travel. One lady who is 58 and diagnosed, and didn’t like the fact that assisted travel meant you had to go in a wheel chair whereas I said yes, but it means you get on first…..😂🤣
One couple loved our cards
And wanted to take it home with them…..and the hubby said he’d be using it all the time to get a word in 🤣
Peter mentioned how it’s so important to help the families and it started a conversation around families feeling isolated and how services seem to think they’re totally separate but we’re always saying ‘when we got the diagnosis, so did those closest to us’. One new playmate said how families nowadays don’t always live close by which means some are all alone…😔
The diagnosis process came up and soooo many stories of length of time, horrible consultants, and simply left hanging, not knowing why you were experiencing strange symptoms………
All that people shared sat comfortably on each session of our course. Everything brought up is on one of the sessions…….👍 Often you can be offered courses but it’s not what you want or necessarily need. The difference is with ours, is that Minds and Voices chose the content because they were the very topics we wanted to know about when we were diagnosed, but were sadly missing from anywhere.
Tea break and stretch of legs time……..
We rounded up the last half hour collecting all the tick charts that people filled in at the beginning…….it was the HOPE scale……
Damian asked us as tutors: what we wanted to say to those newly diagnosed…….
Peter said. “Don’t give up, no matter how hard it gets”
I said, “Don’t think it’s the end, instead think of it as the start of a different life
As Brian said, “Death is permant ……enjoy the life you’ve got. We’re born with nothing and die with nothing and every thing in between is profit……….” priceless ..
The students were asked how they were feeling after the session……
“We’re not alone. We’ve all got something in common”…
“We’re who we are what we are, take us as we are. It could happen to anyone. Listening to people today I feel very lucky” said another
“I’m really happy……, was another “You can focus on what you can do not what you can’t…”
“Meeting people all in the same boat”……
“It’s all about trying to look forward and doing what you can….”
“I always find it useful to listen to other people…”
What a wonderful first session……..meeting wonderful new playmates and partners……..can’t wait for next week……❤️
How I wished I’d had a course like this 5 years ago….it would have saved a lot of heartache…….but that’s why I do what I do. I just wish professionals would look at the part they play in a different way too…..