Dementia Diaries meet up – Day 1……

Last Thursday saw me travelling to my least favourite station of Birmingham for a 2 day meet up for Dementia Diaries.

The morning started off with trauma as my shower door came off its rollers 😳and then I had a power cut – all within 5 minutes of getting up😱 I ddidn’t know whether it was something I’d done or the street had gone out..
I was going up and down the stairs saying ‘oh my goodness’ to myself not knowing what to do……when it came to me……….make a cuppa tea………😊
The phone suddenly whirred into action signalling the electric was back on – all in the world was straight again…..

I couldn’t face having a suitcase on my least favourite train line – Cross Country, especially in August – so I became the bag lady…….at least then I could have it with me.

It was the most gorgeous morning, after the torrential rain of late.The taxi was nice and early and the first train was on time. Philly Hare had posted some amazing pictures of the venue on Twitter and some people had arrived the day before. Agnes Houston and George Rook were already there waiting with several others.

The wind farm looked lovely surrounded by blue sky as we trundled on our way….

The Cross Country train at Doncaster was the chaos I was expecting. Thank goodness I was a bag lady as suitcases were piled high with no room anywhere. The train was chocca but luckily no one was in my seat……..

Rachel Niblock txt me with instructions of where to meet when I got to Birmingham, which was a wonderful idea. She also txt everyone to check they were ok – Gold star earned ⭐️ and was there waiting with Teresa Davies, nickname Dory. Jo Bennett and hubby met up with us and we all got a taxi to the venue.
I had a lovely hug from Philly and then Agnes, out in the garden.
George Rook earned the first brownie of the day by immediately getting me a cuppa tea  😊👍

The venue looked amazing from the grounds. It was a Quaker Centre very close to Burnsville village.

We were all meeting up with Philly and Rachel to look at the dementia diaries project as Innovations has been given funding to develop further over the next 3 years and will be relaunched in the Autumn.

After lunch and meeting everyone, we piled into a wonderful room ready for the afternoon session and started off with a wonderful song by Paul Hitchmough. There were 17 of us in all from Scotland, England, Ireland and Wales – wonderful.

Dementia diaries enables us to give random views on whatever comes into our mind and is such a valuable resource for us but also for professionals, journalists and anyone who wants to hear what people with dementia think.

We set our ground rules first. With the help of our yellow cards and some chattering teeth Philly and Rachel had given us all to encourage us to keep talking – doubt if that will be a problem!

As a way of getting to know each other we all had to talk to the person next to us and find something remarkable – Mine was…..that I’m doing a Firewalk for Dove House Hopsice in October, but that deserves a blog all of its own soon…….☺️ turns out I was sat with a group of truly remarkable people, but then I already knew that……

First up was talking about our experiences so far as it’s been going for 2 years.
It was started by a couple of wonderful journalists who had a mission to help those who’s voices aren’t often heard. They set it up with DEEP from the beginning. We use our On our radar contraptions to record whatever we wanted to say and the web site allows people to hear our voice.

So now Innovations have taken over Dementia Diaries from On Our Radar.
We spoke about what had worked and what hadn’t. For some, it was used very often. However, for others, who didn’t use it often, it became something of an alien so it’s key to improve the experience.

What came out of it is that we have to have a variety of methods – some find the everyday phone good, others the contraption. I mentioned about needing to be able to send in text if you find the phone difficult 🙄

After a much needed cuppa, we started up again. Rachel had already filled reeks of flip chart paper.

We talked about what support we need to do our report. We could be the buddy’s of new people within DEEP groups

We had an interesting discussion about whether supporters should be allowed to post a recorded message. There were many different views, some in favour and some feeling uncomfortable. We always say that our needs run in parallel but whether this is the right medium is yet to be seen and agreed. There are many pros but also many cons……

Last session of the day after another cuppa……was to hear our views about consent and keeping people safe etc and the ground rules for what is acceptable to say. Again, soooo much discussion and issues highlighted.

After tea, 4 of us went with Philly for a lovely through the grounds with many photo opportunities and once again, much laughter and hilarity followed before it was time for bed.

Agnes, Dory and Jo in a “See no evil, hear no evil, speak no evil’ pose…….😊

The final day tomorrow…….

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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