Last Friday, my long week continued with a workshop in London at the Alzheimer’s Society Offices.
It was an early 6am start again but at least I would be travelling on one of the new Azuma trains from Hull, instead of the old rickety version we used to get so it should be comfortable…….
The taxi man arrived – the same one had picked me up all week so he was curious to know where I was going today …..
Trains behaved and were on time and once we got to Hull I settled into my seat for the trundle to London. A bird was flying with purpose along the waters edge
And the sheep were ambling along the shores finding their spot for the day……
All was right in the world when suddenly the proverbial “grumpy old men” appeared, who would be looking after us for the journey. They seemed to relish in the competition to see who could be the grumpiest. These two staff have often been on this train when I’ve travelled and are often grumpy….but today…..well maybe it was because it was Friday as they were particularly grumpy.
Never heard so many sighs when customers asked a question……🙄🙈 I was the last in the carriage and knew my request wouldn’t go down well…..so started off by saying…..
“Is it grumpy Friday?”
A half smile appeared on his face…….”I’ll cheer up later”………was his response, but at least I didn’t get a sigh……a smile really does cost nothing……
Anyway after that, the journey settled down and I got on with staring out of the window and enjoying the views…
I then promptly fell asleep and woke up at kings cross….😴😴 💤 it’s been a long week…🙄
I arrived at Tower Hill to find a lovely group of amazing thistles with the Shard in the background …
Arriving at Crutched Friars I went upstairs and immediately met my lovely friend Barbara Woodward Carlton and we trundled into the Kitwood room
We were here to find best ways to communicate the Research Network. After we all introduced ourselves Shirley gave us the amazing news that it was 12 years to the day that the Research Network was born………wow………
There were 8 of us, but sadly only me with dementia, not sure why. Maybe I’m the only one on the communications sub group.🤔 I always feel a little anxious when I’m the only person living with dementia at these sort of things……felt a bit out numbered…….maybe it was just my mood that day….
We currently have 322 Research Network Volunteers – 15% of people living with dementia, so we have to find better ways to communicate this amazing volunteering role and make it interesting and appeal to more
Anna -Louise Smith, Research Engagement Manager led the session along with Ciara Lihou.
We have to make people see how research can bring the future closer, how personal stories create a different view of research…..
We all went round to say what works for us and how we get invites to speak at events, the type of events where we talk about research. We all do a variety of things off our own back and some directly for the Society, others for other organisations and groups.
We all spoke of what has worked well and what hasn’t, where we think improvements could be made and what circumstances we could promote the research network further…..
After lunch, we had Gregor, the Business Manager for the Research section, working at strategic level but also with those who do the work on the ground. He was there to promote story telling as a different way of talking and encouraging others. He was an actor in his former life
How can we use story telling to better engage with the public and researchers. We tell stories to personalise and get over a message. I said how I used to use Mr Men stories to show my daughters how they weren’t alone when they had fears. We had sooo many of those books ☺️
We spoke about the difference between telling a story in the past tense and telling it in the present – e.g. I am a 5 year old boy or Once upon a time there was a 5 year old…….
We had to chat in couples, about what was unique about ourselves. Me and Monica struggled with that as we said the word was wrong, we’re only unique in our genetic make up but we all have ‘different’ stories…..
Emotional engagement is made easier through nuggets of story telling.
However, the day went very sad for me at this point…..Now I’m not writing this bit to beat anyone with a stick as Anna and Gregor are kind people, but today they got it wrong for me. Maybe someone else with dementia wouldn’t have found the next bit a problem but it couldn’t have been worse for me.
Gregor said he would relate a story and we had to pick up certain elements…..well for me after each word is spoken they float away. The detail gone and all that’s left is emotion. But the overriding emotion was one of inadequacy, of feeling stupid as it was such a short story.
What finished me off was him asking us next to write down words related to it and I find writing very difficult nowadays, the coordination of the flow of once beautiful script now gone and am now left with a scrawl, again making me feel stupid.
Some people may think it’s because I type all the time, but I also write everyday. I write my shopping lists, I write notes; some I can read, some I can’t; that’s how inconsistent my writing is.
None of it was intentional by any stretch of the imagination, they just hadn’t thought to check or thought through the exercise carefully.
I left the room as my eyes were filling up and I just needed to hide away for a while. I went back in and Anna offered to help by writing for me and talking it through but sadly the emotion just overtook me. Maybe a long week had left me feeling vulnerable. I can no longer feel annoyed or angry, jealousy – all those emotions, dementia has taken away from me – so all I’m left with is happy or sad, so sadness just overwhelmed me on this occasion.
Maybe if it had been the beginnng of the week I could have explained why and what they should have done. Maybe if other people with dementia had been present I would have felt they would understand. But today the emotion was too much for me and I had to leave early otherwise I would have disrupted everyone else with my tears and I didn’t want to do that.
Instead of going straight to the station, I went and sat by the river for a while enjoying the calmness and smiles of those around
It was a valuable session and Anna emailed me straight afterwards to ask for help in doing it better next time, so lessons were undoubtably learnt. As I’m saying I’m not writing this to criticise, but simply to make a point that when you’re including people with dementia in anything, please check that the content and methods will work for each and every one.