“Enhancing Lives” Conference……

I was contacted ages ago and asked if I would be happy to speak at a conference in Wiltshire. At the time they apologised as I would probably never have heard of the place…….it was Trowbridge; a place I lived for a couple of years eons ago – ha! I even still visit as I have friends living there. So I was more than happy to accept the offer as it meant I could stay with my friends.

My journey took about 8 hours 😳🙈 so I went a couple of days before just to have a rest day. I’d come armed with a suitcase of 25 books but luckily really kind people helped me on and off the trains as I struggled to lift it🙄
My day off was taken up by my annual visit to a local garden centre near Lacock that holds a wonderful Christmas display. I wasn’t disappointed and came back laden with a snowman and huge Christmas village 🙄 I got back and suddenly asked the question, how was I going to get them home😱 so it was vital that I had to sell some books to make room🙄

Pam and Kirsty kindly picked me up on a very cold frosty morning and we trundled to the venue at the Civic centre. I was met by David Sheard and Babs from Alzheimers Support. They’d got me a packet of Yorkshire tea just for the occasion 😇

Alzheimers Support’ has the contract in Wiltshire for Dementia services.

I was so thrilled to be tapped on the shoulder by my dear dear friends, Christopher and Veronica Devas. Christopher has trouble speaking now so often sits happily silent but read my badge and said ‘wendy’ which made my day………

David Sheard, the founder of Dementia Care  Matters, was up first. His speech was around the family. He asked us to take a moment to say what we thought of the word ‘family’. I said it does not have to mean related. My 2 daughters are the most important people in my life but I also have a ‘family of people with dementia’ It’s people you feel close to.

Today there is a diversity of families……In his presentation he spoke about ‘feelings’and their importance for people with dementia.
“Person centred care’ is difficult to find as the ‘love’ part of Kitwoods flower has become forgotten.

I’ve often said that good dementia care isn’t about the practicalities of care, it’s about, feeling safe, feeling happy, feeling human again.

It’s important to remember that a residential establishment is someone’s home……
Here’s the link to the film

He spoke how the Care Home system needs to change – it needs disruption 👍

Family and Love need to come back into care.

He finished playing the song “We are Family’ and everyone just getting up dancing and singing..

Next up was me……. I followed on from Davids talk speaking about the importance of the diagnosis not being just for the person but also all those around the. Everyone needs support. One bit I said was

“I have a problem with the phrase ‘living well’ it was a good idea some years back as there was nothing else but I’ve since realised from meeting other people that it sets such a high standard that not everyone can reach, so it ends up having a negative instead of positive effect as it makes some feel inadequate. So instead I prefer living as well as you can. It’s so important to revisit language every so often. No, it doesn’t trip off the tongue as easily or fit into slide presentations quite as neatly but it helps so many not to feel inadequate when they’re struggling…… “

It was time for a cuppa and lots of people came and chatted. Pam kindly stood with my books and they were gone in seconds with lots of disappointed people as I only managed to take 25 but could have sold a lot more.

During the tea break I also made 2 new friends


What goes down has to get back up again and 2 people had to help me back up😂

After tea break we heard from a lovely carer, Caroline, who said that since becoming involved in a support group their life had changed for the better. Their group is at a farm and allows them to enjoy the outdoors.
“Being in such good company has enhanced our lives after being isolated and scared.” “It’s opened up a whole new chapter in our lives”

Then a wonderful film showed made by the group.

The Laverstock Memory Group were up next. This is the group attended by my lovely playmates Veronica and Christopher. They meet in someone’s home and people with dementia meet in one room and supporters in another. They questioned whether a dementia awareness session made businesses dementia friendly and decided not.They were given a pot of money by DEEP to go round local places that they chose to assess how good they were. They then hand out a certificate to good establishments.

Wonderful to hear a local group and all that they’re doing.

Up next was Tony Whitney who supports his wife Donna who is living with late stage dementia of the PCA variety, which is more about visual special issues rather than memory. He spoke of the ‘sparkle’ disappearing in the beginning due to lack of support. Other conditions added to the complexity. The difficult decision of choosing a care home was made more difficult by the inconsistency of care. Many were Institutionalised but he thankfully found one where Donna was made part of a family. Her sparkle returned through good support and good care and she has ‘reconnected’ with the outside world.

Psychological hurdles and barriers can hinder and prevent us from doing things that are normal. New issues demand new solutions…….”………a wonderful talk by a wonderful man about his wonderful wife.

Finally before lunch Babs and Kirsty from Alzheimers support launched Wiltshires Dementia Roadmap. They called these virtual team members. It was designed with the help of people with dementia…..and looks very simple to follow on the slides.
The one page that stood out was the one that said:

“You are not alone”

You can take a look here:

http://www.dementiaroadmap.org

http://www.thesupportvillage.org

Time for lunch as I was now starting to flag…….lots more wonderful things in the afternoon but I just wanted to sit and enjoy as brain disappearing fast so no more typed….EXCEPT the first speaker was a GP who showed the slides of Alistair Burns and spoke of Living well…..the one phrase I spoke against this morning. I didn’t agree with lots of what he said, but then I’m not surprised……..and he, in a room with many people living with dementia, said Donezepil doesn’t work 🙄 …….but was luckily contradicted by the next speaker, Professor of Research, who said how it delayed declined which they’ve proved……..

After yesterday blog, the last workshop, Dr Simon Manchip restored my faith in Consultants in Old Age Psychiatry. A wonderful talk with humour and challenging current views and practices. I sat through it twice to finish on a high.

Really finished now…

Wonderful event and so glad I was invited.lots of good things happening in Wiltshire…..

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.

10 thoughts on ““Enhancing Lives” Conference……

  1. Thank you so much for your thought provoking and inspiring talk Wendy, It was lovely to meet you (I’m the lady who lives opposite the friends you stayed with who came over and said hello). The event was fab, but you and David were definitely my favourites x

    Liked by 1 person

      1. Ps i bought your book on kindle last night and am on chapter 6 already! (A coach trip to london enabled me to read so much at once!) I’m really enjoying it, so insightful and honest.. you truly are an inspiration x

        Liked by 1 person

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