Minds and Voices in York

Yesterday I was back in York for the monthly session of Minds and Voices. A magic group for people with dementia. It was an early start, but the sun was shining and the Westwood looked a picture as the bus sailed past.

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Damian kindly agreed to pick me up from the station and the daffodils around the wall were looking wonderful…

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We got to Lidgett Grove in time to find the lovely Emily Abbott all ready waiting and a cuppa tea ready to pour……perfect start……

Everyone started to arrive so the laughter and banter began………..

It was a full house. Lorraine was also there who worked with Emily on the choir and the garden project. Lorraine is our new admin person – keeping us all in order……….😳…….Well, she must be up for a challenge!

Damian filled us in on a Dementia Action Alliance meeting last week which the group were asked to lead and take over the agenda – and lead they did by all accounts! Janet Dean – chair of York DAA – asked for people with dementia to be at the heart of the meeting.

Statement about our group...
Statement about our group…

During the meeting Elaine and Eddy gave a speech about the difference dementia had made to their lives and the good effect the group has had on them and shared their  positive message. Janet wanted us there to challenge the negative understanding about dementia and so the group gave the real view. The audience was amazed at how we got on with our lives. We wanted to ‘normalise’ how we lived our lives. The audience was asked if anything the people with dementia had said had changed their view of people with dementia and they all said how surprised they were at our positivity.
We sang the praises of a local shop called ‘Barnitts’- which, on the surface is a muddle of a shop but actually, it’s their customer service which makes it such a people friendly place and people with dementia love it – it’s my own favourite shop, as my daughters would tell you…

The CCG were there with a representative – and she said “I’d like Minds and Voices to do Gp training in York” – well Damian certainly had that documented and will be chasing that to turn it into an action…..

His champagne comment of the day was Rita saying:

“Well we might all end up in the same care home!”

which caused much laughter – we all said ‘it would have to be a very special care home, with very special staff if we were all together’. It would have to be the best care home in the country.

Sounds like they did people with dementia proud😊 I wish I’d been there just to watch them!

It was then time for lunch which Emily and Lorraine had put together.

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We started the afternoon with the sun shining nice and bright outside.

Age UK are working with Innovations in Dementia and have asked several DEEP groups to be part of a national consultation around ‘what does living well mean?’ ‘What’s a good life?’ – not specifically with dementia, just ‘what do we define as living well’– and our group has been asked to be one of those groups. So we’re going to do that next month – 25th April.

We’ve also been invited to Hartrigg Oaks in York, which is a complex of properties, where everyone pays a fixed amount each year that allows you to take advantage of as much or as little extra ‘care’ as and when you need it. They also have a nursing home and sheltered accommodation as well. They know they have people with dementia who aren’t getting the support or knowledge that groups like ours exist. They were blown away by our positive attitude and think it would benefit all the residents in this complex. Sounds like a brilliant idea😊

We talked about dementia diaries and the little contraption we have to instantly record our thoughts and views.

A simple device to use like a phone and record a message.....
A simple device to use like a phone and record a message…..

You can hear lots of messages recorded by people with dementia on their web site http://www.dementiadiaries.org/

RICA –a consumer testing company have asked groups to test anything – they want to learn how to do consumer testing with people with dementia. How can they make it accessible for people with dementia to take part? They’re interested in the process of testing, not what we test. So Emily will sort something simple for us to test soon.

In no time at all 4 hours was over and it was time to go home. It’s a long day, but so worth going – the laughter itself is worth its’ weight in gold…….

 

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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