An interesting debate amongst playmates about ‘labelling’…..

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….

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.

23 thoughts on “An interesting debate amongst playmates about ‘labelling’…..

  1. A very powerful post. Thank you Wendy.
    I was a carer for my husband who was living with vascular dementia which progressed quickly. We too joined a choir. Not a “proper” one – but one for those who can’t sing. It became the highlight of our week! My husband joined in enthusiastically with all the songs he knew. And just listened to those he didn’t know- he was unable to follow printed words, which the rest of us used. I’m pleased to say that the group was most inclusive and welcoming and I have very fond memories of our participation. Music played a very important role in his life as his dementia progressed. I still go every week – but via zoom at the moment! I hope others find a place to enjoy those moments too, wherever you find it.

    Liked by 1 person

  2. This is such an important topic. We label everything, skin color, financial status, religion, and therefore separate ourselves into groups from which judgement and superiority spring and caste is born. Its a shame really that we are taught this from birth and it is hard to escape its prison.

    Liked by 1 person

  3. People seem to need groups. Think about it: the young moms crying over toilet training are probably the same ones disdaining/making fun of the elderly complaining over aches and pains. But someday…. groups can bring comfort and solace, and fun and togetherness. They don’t mean we can’t ALSO enjoy the world as individuals, or the world enjoy US as individuals. What a shame that that chorus leader was more interested in the appearance of the chorus than in including you with the music you need to see. If you were in a wheelchair would she also have excluded you?

    Groups are good when they are wholesome and positive. Nasty ones exist too, of course – I won’t go there today!

    Looking forward to your next book!!

    Liked by 1 person

  4. Very thoughtful question. But we label other conditions so I don’t think it’s so much what the label means to us, more what it means to other people who categorize us as being different. They don’t categorize people with arthritis, or diabetes etc. and make them so different the way they do to us. It’s about teaching them. They do this because they know nothing about our condition and how well we live with it. So just like you, Wendy we need to inform them and open their minds.

    Liked by 1 person

  5. Names can be very potent. I’m ashamed to recall how I shared in the practice among us kids of calling someone a ‘spastic’ if we wanted to insult them. It’s a word now that only ever describes symptoms not individuals.

    I think ‘dementia’ likewise, as a word registers only negatively with most people, failing to shed any good light on the condition but only conjures up the worst imaginings, so getting things off to a bad start. Some other unemotive label would help to get beyond the zone of ignorance and fear and into the realms of compassion, empathy and understanding, which is what we all need when we are unwell.

    Liked by 1 person

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