Meeting my friends with dementia……

Yesterday saw me trundling to York for the monthly meeting of wonderful friends with dementia called Minds and Voices run by Emily and Damian.

I woke up to horrendous rain which continued until the taxi picked me up just after 7am and took me to Beverley, and then once on the bus, the sky looked deceptively friendly as we made our way out of Beverley.

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According to my notes, I’d missed last months group, having forgotten to book my taxi in time, so missing my bus. However, I must have set an alarm on that very day for this month as a reminder went off early last Friday telling me to book my taxi🙄

The bus journey takes over an hour but is a lovely ride, especially in the sunshine. The bus drivers on EYMS buses are nearly always helpful and smiley, so brownie point to them. I even have windmills on this journey too.

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But the friendly sky was turning decidedly grey and rainy and once I got to York the rain had arrived. I trundled over the bridge towards the station to meet Damian who had kindly agreed to pick me up.

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We were the first to arrive and Damian immediately put the kettle on😊
Emily soon arrived with all the paraphernalia of lunch and we set everything out ready for the crowd to arrive.

Tessa Hughes, a psychologist from Oldham, was due to visit along with some of her DEEP group and they arrived in time for a cuppa. The taxis were very tardy bringing everyone in but eventually everyone that was coming had arrived and we started with my 3rd cuppa in front of me……..☕

We all introduced ourselves and Damian chaired (or tried to chair the meeting 😂😂) – never the easiest of tasks……

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Oldham run a group for post diagnostic support once diagnosed.

Damian gave us an update of our local stuff before the main event with the folk from Oldham, which was to discuss post diagnostic support and what that meant.

When people get diagnosed in Oldham  in the memory service they get invited to a course run by the psychologists. There are 2500 people with dementia but only 40 people have accessed the course.. 😩
It’s for supporters and people with dementia and discusses the myths, detail of dementia and coping strategies whilst acknowledging individual needs amongst other things

We heard how some doctors are not very good at giving the news and often don’t know how to tell people they have dementia in the right way, so do it all wrong.

Knowing enables you to prepare – talking enables you to listen to others about how they cope.You’re all in the same boat.
If there’s no support around you start making up your own thoughts which could be really wrong……..
The message is you can carry on as normal but with scaffolding to help you adapt.
We all understand the importance of peer support – both for supporters and people with dementia. After all, no one gives you a manual when you’re diagnosed, so if you don’t access help, how are you suppose to understand, and how are supporters to learn how to best support you?

Damian called me the tea sponge………as I helped myself to my 4th or was it 5th cuppa and took another photo…….

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After a lovely lunch, I went early to give me time to get myself sorted and catch my bus home.

Oldham have about the same number of people with dementia as there are in York – we have about 2700, yet we have the same problem. Only 40 out of 2500 attend the course in Oldham and only a handful of people access Minds and Voices.
We discussed why this might be. Obviously groups are not for everyone, but the main reason appears to be fear. Fear of the unknown. Fear of dementia.

That’s why we have to normalise talking about dementia – to normalise will reduce the stigma and fear.
Still so much to do………

I do love my village but I miss living in York too……

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. 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.

4 thoughts on “Meeting my friends with dementia……

  1. My mother was so ashamed of her dementia and did not want to talk about it at all. I tried to gently help her see it was not her fault and that there was nothing to be ashamed of. I am happy to see the positive proactive peer directed programs you are are part of Wendy. Thank you for the major part you are playing in this arena. Because of people like you I think the new normal will eventually become acceptance and adaptation rather than shame and denial. It takes time to change the course of a ship. Thank you for leading the charge.

    Liked by 1 person

  2. Hi Wendy. I like your use of the word ‘scaffolding.’
    It makes me think of the Seamus Heaney poem:

    Scaffolding
    Masons, when they start upon a building,
    Are careful to test out the scaffolding;

    Make sure that planks won’t slip at busy points,
    Secure all ladders, tighten bolted joints.

    And yet all this comes down when the job’s done
    Showing off walls of sure and solid stone.

    So if, my dear, there sometimes seem to be
    Old bridges breaking between you and me

    Never fear. We may let the scaffolds fall
    Confident that we have built our wall.

    I think this is so true of life. We all need robust scaffolding in the first place, to sustain the cracks that later appear for all of us, in all sorts of ways, throughout life.

    Groups like Minds&Voices are helping build dementia scaffolding in our communities.

    Crikey – I’ve come over all high-falutin’ for a Thursday morning…!
    Was lovely to have you with us on Monday,
    Emily xx

    Liked by 1 person

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