A Day with New Playmates in London……

On Friday I ventured down to London. Still not feeling that good and certainly not firing on all cylinders but I thought it would be better than sitting as I seem to have done a lot of that this week…….🙄 and I was hoping I wasn’t infectious enough to give whatever to everyone else🤦‍♀️

Anyway, Rachel Niblock had invited me to join a gathering of playmates and others down in London. Tony Husband, the cartoonist would also be there. He’s a wonderful chappie and has written a lovely book called ‘Take Care Son…..The Sory of My Dad and his Dementia’
The cover is penned by Tony himself in his unique style

We became friends after he worked with the IDEAL Study and drew cartoons of us on our. ‘Out and About’ project.

I digress……..back to Friday……..

It was the silly o’clock train so the taxi driver came for me at 05.30 and drove to the station. They’ve finally given up the pen and paper and ‘gone computerised’, which must be a shock to the system for many. I’ve always paid £7 and the driver knew this, but suddenly, today, it came up on his new screen as £8.i jokingly asked if I was paying for the new system…..but he still charged me £7 and said he’d ask in the office. When we got there the mystery was solved. Apparently there was always an additional £1 added before 6am but they’d never charged me as it was aimed at the clubbers making their weary way home and they never thought that would be the case for me😂🤣😂🤣

Mystery solved I waited on the platform with the other early morning travellers. Everyone silent in their own thoughts or simply wishing they were still in bed. Thankfully the train was on time and we trundled our way through the dark……

I LOVE watching the world come to life at this time in a morning

Rachel had offered me a hotel for the night before but I’ve had enough of hotels for a little while and prefer my own bed, so my own choice for silly o’clock start.

Anyway I arrived to find a rainy London and ambled down to the lovely venue of St Mary Ward House. Rachel and Fran were setting up and some kind soul got me a cuppa tea…….People started to arrive and soon Tony Husband arrived along with his son Paul who would be taking photos of the day. George Rook also arrived. So many hugs and many catch ups….

George and Rachel were the chairs for the day. Once everyone had arrived ……..and it looked like the most people with dementia I’d ever seen in the same room……. George started off by talking about the aim of today was to meet and share our experiences and learn from one another. Most people there were part of a DEEP group – DEEP is simply a network of groups of people with dementia. The groups, just like Minds & Voices are safe places to talk……….

Rachel had slipped a page from Charles Dickens, Great expectations into our name badge (because todays meeting was in the Dickens Library)

We went round the room and simply said who we were and where we were from, but then we had to choose a word from our page……my word was ‘ideas’……..it was a lovely way to get to know everyone and give everyone a voice. It didn’t matter how long it took, as it meant everyone spoke. The first time you speak at a meeting is often the hardest for many so this gave them a chance to speak at the beginning which would hopefully give them the confidence to speak again – a genius idea by Rachel once more.

It was also interesting to hear the words people chose….

After a cuppa tea….Tony Husband took us through the story of his lovely book and his dad…..wonderful……❤️. He then drew 5 names out of the hat to win a copy of his book

Time for lunch and more cuppa teas……..during which Tony sketched a carton image of Billy for me and in return I bought his book

Over lunch I’d taken all the words…that we’d come up with earlier…. And created a poem that included them all and was asked to read it out…. I’ll publish it tomorrow……give me words and I come alive no matter how ill I feel….

After lunch it was Fran’s turn to interview me and George…..after which I drew the last name out of the hat to win a copy of my book….

We ended by going round the room and asking ‘what matters to me’…….some lovely comments and suggestions…..

Paul, Tonys son, went round taking piccies all day of the event…

I think the one thing I remember from today is a woman coming up to me and George and saying how glad she was that she’d come today. It took her 5 years to accept her diagnosis and now she’s discovered DEEP and doesn’t have to sit and watch the telly all day every day any more.

It was the most diverse group with people from many cultures and thanks to Rachels wonderful organisational skills and brilliant ideas, it went down a storm. There are only a handful of people I tryst to organise an event and know it will be perfect – Rachel is number 1 on that list…….they’re going to put together a booklet of piccies and include my poem……magic memories….

When 50 people with dementia arrived they were quiet, anxious, entering a room of unknown. When they left I had a banging head from the happy excited buzz ………such is the wonderful, wonderful wonderful power of peer support……

………..Until I got to the station and my train home was cancelled……🙈 meaning I had LOADS of time to take this piccie of the annual poppy in the station concourse….

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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