Yesterday it was the first meeting of the year for our support group, Minds and Voices in York. I’ve stayed connected with them as there isn’t anything like it in the East Riding, but I’m working on that……….
Damian kindly agreed to pick me up from the station, otherwise I wouldn’t have been able to get there. It was a full house and we had Laurence and Paul from Dementia Diaries for the morning from London as they’d come to see if we were interested in their project that’s supported by Comic Relief.
We had a couple of 2 new members – Pete and Peter which is always good to see.
We went round the table and introduced ourselves – some people said a bit about themselves as well.
“I was devastated when I got diagnosed but I have a lovely family and you just have to get on with it don’t you?” said Rita.
Pete started a rendition of “Always look on the bright side of life”, which got everyone singing…….
Elaine said “I’m not despondent”
We’re a very positive kind of group😊
Paul and Laurence then went on to talk about dementia diaries.
They’re based in London and are working on this project – they’re both journalists – “we’re interested in new technology and how much easier it is now to hear from people who are the experts rather than a journalist talking about it ”
They set up this organisation to hear from real people who have a real experience – the ‘experts’
They’ve been round lots of groups like ours and set them up with the simple phone that enables us to record our thoughts.
People need to be able to share their story – to hear from people living with dementia and the different ways that it might affect you each individual.
The project has been going for a year now. And there’s over a thousand stories on the web site now:
“This is about us supporting you to say what you want – No one can twist your words.”.
It’s aim is to boost public understanding and improve the way things are done or whatever people decide to tell us about – we want to make sure the right people hear what we say.
Some members of the group then gave their thoughts:
“Lots of people sit in their homes with dementia because they don’t know there’s things they can do in the community.
“I live for today – there’s no tomorrow for me” said Eddy
Joining the choir has had a double impact with Rita as she hasn’t been in hospital with her emphysema since she joined the choir.
“It’s a good job we all have a laugh”
Interestingly Peter asked “Are we becoming the victims of our own success?” Are we trying to fight nature ? – Because we’re living longer there’s more dementia. But that then makes it even more vital to show all those people how to live as best you can with dementia. Society needs to change their perspective on dementia.
They went round recording a message from each of us to get us use to the device.
To help everyone recover from hearing the sound of their own voice, it was then time to head off to a lovely lunch brought in by Emily
After lunch we all had another go at recording something to gain more confidence – and then listened again to our dulcet tones. My contribution was around living alone and how I hadn’t appreciated how hard it would be to become orientated in my new house – I’ve been busy taking photos of the inside of cupboards to stick on the doors………
Dementia diaries has provided an outlet for the experts in dementia – people like me, to express our views to the media, government, healthcare professionals and simply to air our frustrations. It’s also a good medium to simply say what having dementia means to us as everyone’s experience is different. Hearing one person relay their symptoms may comfort someone else going through a similar experience – they’ll realise they’re not alone.
The group all went away and I hope lots have the confidence to start recording their thoughts. Before he left Eddie added:
“If it wasn’t for people like you, we’d be lost – so thank you to you boys for starting this”
And that’s true – without the support of people like Emily and Damian who started our group, simply because one didn’t exist, and without people like Paul and Laurence, who start up such amazing projects, we wouldn’t have the voice that we do……………sadly we can’t do things on our own anymore and need their support, but their support is so valuable and much appreciated…….
Great meeting and well worth the early start and journey……..😊