Wednesday at UK Dementia Congress……

After a sleep wake sleep wake night, I finally fell asleep as my alarm went off at 6🙄… was an e x h a u s t I n g few hours yesterday at Congress so goodness knows what I was going to make of a whole day… head had been partying all night and all I really wanted to do was snuggle, but loads on the agenda today……it was a lovely cold crisp autumn morning as I walked from the annexe …

It started off with an early breakfast………Rachel, Dory and Agnes were already there and Aimee joined us, having arrived at midnight!😳…….we made our way to the racecourse and set ourselves up behind the DEEP stall

Lots of people came for hugs and hellos …….and then it was time to go into the main hall and set up for the plenary…..we redesigned the stage 😂 as we wanted to sit in a chat circle instead of behind tables, but the sound man happily moved the main tables, brought 3 chairs and gave us hand mikes……..

After the initial introductions it was our turn. Jeremy Hughes was caught up in rail delays so Prof Dawn Brookner stepped in to introduce the 3 of us….and be chair for the plenary session……..

We spoke about ‘Technology and how it can benefit us in the rights hands, however………’

Agnes played Michael Parkinson and chatted to me and Ron, about 3 important points……Alexa, social media and companies involving us from the start when developing products for us……

Ron said on Alexa, “Alexa ASKS me if I taken medication, she doesn’t tell me”

It went well………and Agnes ended by saying

We don’t have all the answers, but we all agree the best hands to control technology are our hands”

Next up was 2 people from the TIDE carers network……..they spoke of the importance of connections. The power of meeting others in a similar situation ……needed by us all and sooo important me thinks…..

I’ve always said supporters and people living with dementia live parallel lives, rarely meeting but our individual needs are equally important……

The final speaker, lost me, he spoke too fast for my slowing brain………he too spoke of technology to monitor health care and general well being –Which  highlights the deviations from that persons normal behaviour……..…… I went to the loo, had a wander, as I was looking for my friend Prof Pat Sikes who was sneaking in for a hug……. and was told by the organisers not to disappear too far…………

Because…….at the end of the plenary I was given an award…Jeremy Hughes had finally arrived after train delays and he presented me with the award….but I asked if I could say a few words,,,,,asked all my playmates in the audience to stand up and dedicated my award to them as they’re ALL exceptional in my eyes…..

It was very humbling being surrounded by people wanting to give me hugs and congratulations but I then had the lovely surprise of Prof Pat bringing someone to meet me – her Thom!!! All the way from Canada! ❤️….

So many hugs, so many hellos afterwards….but I had to whisk my way to the next session which was Minds and Voices running a group upstairs……we knew not many people would come, but we also knew that we simply were pleased to be altogether ….

I’d made new badges for everyone from the badges kindly donated by WH Smith’s Trust……..

We started by sitting in a circle with all our visitors and going round the circle saying who we were………

We then went onto a conversation about relationships…….about the various thoughts on the words ‘Carer’…… ‘carer’ implies a one way contract when it should be a two way process as any partnership……someone said how sometimes we have to put a different coat on and accept that society demands we have a label……but Rachel said:

if we continue to secumb to ‘what society demands’ we will never change the labels it gives us…….”

Chris said…….“We’re all carers’ and care for people, caring for our fellow humans…….”

We went onto new members and how daunting it can be to join a group……I told the story of playmate Elaine, who joined and didn’t speak for months and then suddenly during a discussion on what we should name ourselves, and Elaine spoke her first words, `”Minds and Voices”……and now we can’t shut her up 😂🤣😂

She said…….“Minds and Voices brought my life back…”

I went from feeling useless to useful”…..said Chris……….

That’s the power of peer support……..❤️

It went so well and now time for lunch ………..I was exhausted, as were so many other playmates… I simply sat at the DEEP stand and chatted to people who came up to chat…..

Philly managed to drive here in the end, even with her dodgy back…and we all sat amicably but exhausted….

I decided I wouldn’t go to the evening meal as I’d eaten at lunchtime so had had my fuel for the day……so Philly drove me back to the hotel around 5ish for me to hibernate for the evening…….

Another wonderful day meeting lots of wonderful people and lots of Twitter pals….but now needed to recharge for the final day…….

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. 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.

8 thoughts on “Wednesday at UK Dementia Congress……

  1. Wendy you inspire me everyday with all you do. I’d like to share some exciting news with you: with the support of our dementia support worker, who is sadly leaving the Alzheimer’s society, we have just set up a Young onset meeting which will be held In an evening, once a month at local pubs, where we can all share our knowledge & support one another & most of all have fun! X

    Liked by 1 person

  2. Congrats on your well deserved award Wendy! You make such a difference in peoples lives, and I stand in awe of your positive enthusiasm and your resilience. Thank you for that.
    Every day I read about your adventures and challenges you face and it makes me more aware of what we are NOT doing to support our friends with Dementia. I know that your voice and others like you that advocate will eventually be heard.

    Hope you get to have a lovely day.

    Kind regards from a very cold Calgary.

    Liked by 1 person

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