My playmates at Minds and Voices have been helping me with the writing of my second book (very weird saying that 😳). I was determined this time to have the voices of others, quotes from playmates on each topic within the book. Each week, me and Anna, my partner in writing, have been setting them their ‘homework’ 😂ready for our weekly meeting via Zoom on a Monday morning. We’ve had such wonderful discussions and I think they’ve enjoyed it as much as I have. I transcribe each chat so I can send Anna some thoughts to include …. We’ve also had a handful of other playmates helping, but in the main it was easier to ask Minds and Voices….
Well the final section was all around ‘Attitude’ and we had a really good discussion. The attitude of ourselves, of others of professionals and how they’ve changed since diagnosis.
In the main, we all shared similarities; how we’d been devastated at the beginning, then after meeting other playmates, we’d realised there was a life still to be lived. Some significant others in our lives had gone through the same process with the same outcome, but others had remained detached, some even becoming invisible and out of our lives.
The part which took me by surprise was from one of my playmates and his sister. They’d we chatted about my questions in the morning before we met on zoom about what he remembered about his diagnosis and he doesn’t remember when he was diagnosed. What was interesting was that after diagnosis he was put in touch with 3 different services – the farm he goes to, Age UK and Minds and Voices. In his recollection it was Minds and Voices that coincided with his diagnosis, because the other services didn’t focus on dementia. The man from Age Uk was a befriender so they went out for a coffee, went out for a walk, but Minds and Voices was the point he was labelled with dementia. So Minds and Voices created that label.
It wasn’t a word he’d come across or was familiar with and it was only through the constant reference to it through Minds and voices that he got the label
Damian, our able enabler added that he often thinks the very fact that we speak to people with dementia is rubbing it in. But that’s a great case for ‘normalising’ dementia so that we don’t need specific groups.
We should all be accepted in our community and there shouldn’t be a need for a niche group and the fact that we have, reinforces what my playmate said. If I’d been diagnosed with any other condition. I doubt it would have restricted me as dementia does in society. As our other able enabler, Anna said, if we were in a wheelchair, a community group would provide a ramp or a way to allow us to join, but because dementia is an invisible disability it doesn’t work like that.
It such an interesting thought. There shouldn’t be a need for our groups really as we should be able to mix, talk and be understand by anyone but the fact that we have to have these groups at this moment in time is more powerful than we imagine.
One playmate would love to join ordinary groups, art groups, WI etc, but they don’t understand how to accept her and what support she may need so she feels isolated. I remember joining a choir where the leader insisted everyone learnt the words and didn’t read them. I loved the choir and singing new songs, I just couldn’t remember the words if I hadn’t sang them in the past. She refused to allow me to sing with the words in front of me, making me feel very different and foolish so I had to leave.
Maybe that’s why many groups, including ours find it hard to get new members because they would feel labelled? But the community can isolate people with dementia from ordinary groups by not accepting, not understanding, so they can be left with nothing. If only there was a compromise to be had….but sadly in many cases there isn’t…..
Should we be asking if we perpetuating labelling ourselves? I’d never considered how DEEP groups and many like them can be adding to the problem, but until society changes its’ attitude this is how it will be, this is how it has to be as we have no alternative.
We ended our session with a beautiful classical recital from our playmate Monica as we do every week….displaying her talent beautifully…as I’m always saying, “We all had talents before a diagnosis, we don’t suddenly lose them overnight when we receive a diagnosis..” and Monica displays this beautifully every week….
By the time you read this me and Anna will have hopefully finished my book and sent it off to our publishers, Bloomsbury, to see if they think it’s rubbish or clapping their hands. But such is the slowness of the publishing world that it’s not due out until early next year……I’ve also given up trying to remember what I’m allowed to say and what I can’t say so I’ll either be ok or get my wrist slapped 🤣I hope you’ll think it’s worth waiting for….