Workshop with the National Rail Museum – York

Yesterday I was at the National Rail Museum in York with the lovely Emily Abbott delivering a workshop to staff.

Emily asked me ages ago if I would help her deliver the days session. Of course, I jumped at the chance. The museum had asked our dementia forum, Minds and Voices, to assess their facilities and lay out in the museum from the perspective of people with dementia. Emily had organised all these visits and today was our chance to meet some more of the staff and feedback but also to help them understand the full potential for the museum to be inclusive and what this would mean to them. We were also there to answer any questions or concerns they may have.

Due to having had such a long day at West Yorkshire Playhouse yesterday, I felt all typed out today and it wasn’t until Emily mentioned it that I realised I wasn’t typing any notes to write my blog, so this is from all the paperwork………

Emily started off the day with a ‘smartie’ activity. Chocolate always goes down well me finds……….and here was no different. We placed a box of smarties in front of each person and asked them not to eat before the exercise …..one person couldn’t resist and automatically started eating them before realising they were part of any exercise😳

They were each given a piece of paper with 3 circles. The question was:

“According to Yorks Health and Well Being board, there are 2700 in the city who have dementia – where are there?
and the aim was to distribute the smarties in the circle according to how many you thought were living at home with someone, living alone, or living in a care home.
The results were interesting. Below is one guess:

image

Emily then revealed that national figures show how there are roughly a third in each category.
It was then my turn to tell my story and relay my experience of my visit to the museum.

They were very receptive and asked questions. One person was a dementia champion and had delivered dementia friends to many staff at the museum.

They need to have ideas that will appeal to the higher powers so we focused on some of the financial benefits and how most adaptions would actually be beneficial for a much wider group of other people as well as people with dementia.
Signage came up as a big issue which needed to be right. We were told that architects and consultants were already working on plans for the future and asked at what stage should the public like ourselves be involved – NOW!! Involve people before they make any changes and definitely before they send any money to avoid wasting money. It is so important to seek advice at the planning stage, that way you know you’re on the right track and not going to put things in place simply ‘because they look nice’……..practicalities are so often forgotten …..

At the beginning of the day Emily had brought along a box in which they could place questions anonymously. Most of them openly asked questions but one touching one was:
“Do I feel despair at the prospect of the future”
My response, as always, was that I won’t hide the fact that I have bad days, because I do. But people tend not to see me on those days. However, I can’t do anything about the negative bits of dementia – I can’t make it go away. What I can influence is how I react to my circumstances and I always try and see the positive side to life. There’s usually solutions to problems. If I can’t change something, it’s wasted energy worrying about it. Today is the most important day, not what may happen in the future.

We were going to do a group activity to end the day but they were so animated in their discussion on solutions and possible things they could do at the museum that we let the conversation so continue.
It was so good to hear their enthusiasm and willingness to listen. I’m sure they’ll have a lot of challenges ahead but their willingness will bring about change.

Emily in full swing.......😊
Emily in full swing…….😊

Thank you so much to Emily for including me.😊

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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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