The second day in London……..

So after Wednesdays meeting with the Young Dementia Network, I stayed overnight, as yesterday I was with Dementia UK (Admiral Nurse people) as part of their LEAP team. I can never remember what acronyms stand for unless they’re obvious. I imagine the L and E stand for ‘Lived Experience’ but can’t remember the A and P…🤔

Young Dementia UK and Dementia UK have always shared the cost for my travel and hotel so I don’t have to go back home as they usually follow one another by pure chance.. It actually costs little more than a return train ticket for each so it makes perfect sense.

Anyway…..I woke up quite early and the television wasn’t working, so I went through the normal routine of scrabble and solitaire… was during the scrabble game that a pop up appeared on my ipad……

😳 weird…….it’s as though Big Brother knew it was me on line…..😂🤣

The meeting didn’t start until 10.45 so I stayed snug on Twitter and typing this before I left for Dementia UK offices in Aldgate at 10…….

I ambled to the tube, got out at Aldgate and looked up to the skyline……

I love the way the old and new sit side by side in London as you never know what you’re going to see. A friend of mine, always says, “never forget to look up” and he’s so right.

I arrived at Dementia UK to be met by the lovely Rachel and Toby….many people don’t know the connection between  Dementia UK and Admiral nurses. Dementia UK provides the training for Admiral nurses but the nurses can be commissioned and employed by a variety of services, including hospitals, local councils, memory services………any service can commission an Admiral Nurse in their area.

Playmates, George, Diane and Tracey were there already along with Suzy and Damian and soon everyone else arrived. So after hugs and chatter George and Suzy started off the meeting.

Suzy always does something to settle everyone in with postcards of  beautiful pictures. The Question she asked today was ‘how are you?’

I chose…….

Because whenever someone asks me to ‘choose’, my mind goes all over the place as I find it sooooo difficult to make a decision….so in that moment I chose the tangled mess……

It was lovely to see what picture people chose and why. How people were feeling about their life at that moment.

Found out what the A and P stands for …..Advisory Panel…….of course 🙄

George then took over….talking about how we can run this meeting better. We often get invited to meetings and they’re run as an ordinary meeting…….we easily get lost and if we fall behind we find it difficult to catch up. So today we’re going to have 2 or 3 parts where we break apart with people with dementia in one group and the rest in another.

Toby then gave a summary of what we’re going to do today ….

So to the first break out about the views around the membership of the LEAP group. We agreed that any papers would have a brief summary on the front. There are 5 of us living with dementia in this group and we represent a wide range of different aspects of dementia which is lovely and varied..

Damian then had a brilliant idea for a research project for where 2 DEEP group could join – North and South. Needless to say I got very excited about the prospect……….🤪

We went through the Influencing pack and the new layout. It’s basically in three section…..but I raised the issue of the scariness of ‘a pack’. I asked if the three sections could be colour coded or separated in some way.

We raised the issue of how do people know an Admiral exists or doesn’t exist in their area and how do people who live on their own know they exist as the perception is, they work with families?

We then came back together and each fed back the main points before a cuppa tea.

During the cuppa tea I had various messages on Twitter to say my name and book had been mentioned in relation to the Dementia storyline on the TV programme ‘Casualty’. So now the news is out I’ll write a blog on Monday about my involvement.

After a cuppa Rachel took us through the strategic aims of Dementia UK and how we need to promote more, especially the nurse led Helpline who can help anyone anywhere. The telephone number in the UK is:

0800 888 6678 or you can email helpline@dementiauk

We had Sarah from the Strategy department to ask how we would like to be consulted…

After lunch we filmed 3 supporters, Frank, Sarah and Susan, giving their views on the difference Admiral Nurses made to them. It was lovely listening to their totally different stories and what Admiral Nurses did for them.

As Susan said, “they gave us that valuable commodity of time”

They all told their story and showed superbly and sensitively the emotional strain placed on both the supporters and people living with dementia. But also the fights and loneliness felt, having to find worthwhile support of any sort.

If any story can stress the need for Admiral nurses, then those 3 varied stories showed it perfectly…….very emotional and very draining but sooooooo worthwhile. Of course they were difficult to listen to but nothing difficult was ever easy to hear. I always say, our lives run in parallel, both have equally important needs.

Commissioners need to be played the film we made of them and they couldn’t fail to see the need for Admiral nurses…..

Must have stopped typing at this point. It was a really good meeting.

On my way back to Kings Cross, the sun was shining and I ‘looked up’ once more.

A ‘future view’ in progress……

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.

7 thoughts on “The second day in London……..

  1. It is striking to me how many more dementia services are available in the UK than in the US. The Admiral Nurses seems a very good one. Great ideas about spreading awareness!

    Liked by 1 person

  2. I picked your book up at the airport on Thursday Wendy, the title and the cover caught my eye. I hadn’t heard about it before. I wish I had had this book 8 years ago when my Mum was beginning her dementia but it hadn’t been recognised, and I was in denial. So many insightful thoughts about the negative language we use, and then great coping ideas. So glad this is now available for us all. You are an inspiration. I wish you all the best on your journey. Thank you.

    Liked by 1 person

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