A Course delivered by people with dementia…..

Yesterday was day 1 of the our ‘Good Life with Dementia’Course in York, created by people with dementia, run by people with dementia, for people with dementia (supported lots by Damian)……….It’s been a long time coming as the local mental Health Team have been less than helpful to say the least, in fact disappointingly so, as they are the ones who diagnose and could easily signpost people in our direction………but for some reason they felt it not worth the effort or appropriate ……..🤦‍♀️

Anyway……..we were determined that the course was going ahead no matter what and Damian has worked so hard with others to find us a few people to start with. Hopefully, then the mental health team will see what a wonderful opportunity they missed. It’s even being properly assessed to prove if it’s beneficial. So anyway, let’s just see. Me and my playmates at Minds and Voices were thrilled to be involved and 3 of us were attending each of the 6 sessions so we didn’t frighten the people to death with our banter………..🤣

The day began with an early taxi ride into town to catch the silly o’clock bus to York. I wasn’t hoping for much of a nice day as the weather had already said it was going to be a wash out………🙈 and it didn’t disappoint as the rain was heaving down as the taxi pulled up. But I had a lovely smiley cheerful driver who chatted happily on the short journey into town.

The bus was on time and instead of going upstairs, where the windows would be rainy and steamed up, I sat by the driver and had his windscreen wipers to clear my view – ooooo and his view as well!

The driver even went round a puddle at one point to avoid turning a pedestrians day into a worse day as he walked at the side of an enormous puddle in the road…..#smallrandomactof kindness…..

Talks started in May 2017 with the local mental health team. There was so much lethargy and the Doctor in question had referred to already ‘only having an hour to cover LPA, driving issues, support for carers , and of course ‘breaking the bad news’………Aaaaargh!!!!!! If all that is thrown at people when ‘breaking the bad news’, then why is it any wonder that people sink into depression …….I feel like screaming that so little is understood by these so called ‘experts’ that people find themselves in the care of……

We cover all that from a practical and realistic point of view in our 6 week course in a relaxed atmosphere with time to ask questions, with time to ask people already living with dementia ……..

Our course isn’t under minding the medical diagnosis. It’s giving people a comfort blanket for however long they want after being discharged by the medical profession. I wish such a course had been available when I was diagnosed as it wasn’t until I found Minds and Voices that stopped feeling alone and abandoned…….

I was recently helping to deliver a session talking to clinical staff and it became apparent that when clinicians hear the word ‘refer’, they interpret the word differently….They take responsibility for that ‘referral’ and if something goes wrong, they think they could be liable and think of complaints and backlash.
Instead ‘signpost’ offers no such trepidation……it relinquishes them from all responsibility….

I’m not excusing the mental health team whatsoever, but maybe that thought was running through their heads….

We have two referrals from Dementia forward and one from the ‘Journey through dementia’ research project. They are not exactly recently diagnosed but hopefully will still benefit from the programme and the positive message – and the fun! Another two are also joining the course. So 5 people altogether

No-one yet from the mental health team…………….shame on them……..

Anyway, Damian picked me up in the pouring rain and we arrived and set up everything, me being in charge of the tea……..and Damian putting the poster up.

We decided the first session should be just chatting so that people could have a chance to relax and settle so a very chilled agenda.

First student to arrive was Barbara, followed by Peter, one of the ‘Tutors’…………followed by students Eileen and husband Leslie,who was a University lecturer, Ken and wife Margaret, followed quickly by Elisabeth who is the trainee clinical psychologist evaluating the course.

2 other people, Clive and Tony, are also joining the course in a couple of weeks.

We started off by introducing each other and then Damian started by saying how the course came about.
Peter said “a diagnosis is the start of something new”

The newbies then told us their story. We had a former dance tutor, lecturer and retailer in a shop I used to live near in York!

We spoke about good days and bad days…..Leslie said, “every day is a good day as it’s another day I’m here………” His wife asked how she should get Leslie to accept he forgets and Leslie immediately became defensive saying he never forgets…….We highlighted that family dynamics and the issues that may arise will be covered in one of the sessions on Living alone versus being in a couple.

Kenneth started talking about research and asking about the research out there and how he’s changed his diet……….we told him Clive from Join Dementia Research would be here in the Market Place session allowing him to join up to JDR if he was interested. I said I’d been involved in lots of research.

We talked of the difference between factual and emotional memory.

Leslie recited a poem from GK Chesterton out of the blue and then Barbara recited a poem she wrote at school, showing how our long term memory is so much better than our short term…..

We spoke about relationship adapting and accepting, driving and fear……so much of what they chatted about, we’ve included in our course, which was very comforting…….all their fears have been our fears …..

During a cuppa break I chatted to Eileen and Leslie and it turned out me and Eileen had been in the same Halls of Residence at Coventry College😳, just in a different decade….. and Ken and Margaret lived near where I used to live in York😳 small world syndrome at large again………

After a cuppa, the 3 of us from Minds and Voices told our stories to finish off, which brought out more fascinating stories of time gone by in York…………….we ended with saying how being with other people with dementia made you feel less alone, we don’t judge each other and so what if we forget things, we’re they’re for one another………….
This is why we put this course together in a non judgemental envirnment………

Damian finished off by asking each person what they felt about how the first session had gone …….
Leslie said he will bring another poem next week….so we’ll call him our ‘resident poet’
Kenneth said he’d learnt so much……….
And finally, Barbara said she felt much happier now as she’d been depressed before….

It was a wonderful start to our course…………..obviously we couldn’t do it without Damian, but what better course to have for people with dementia than one put together and delivered by people with dementia…………

I’d decided before everyone arrived that I wouldn’t take photos today as I didn’t want to frighten everyone away, but Damian dropped me off at the station and I couldn’t resist taking one final piccie of the daffodils by the walls

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.

16 thoughts on “A Course delivered by people with dementia…..

  1. Well done. If it is authing as helpful and life giving as your book was gor me Im sure it was amazong. Wish we had something similar happening in London.

    Liked by 1 person

  2. Wendy this sounds amazing! I do wish I could access something like this. I was diagnosed over the phone 3 wks ago with FTL dementia & the first available face to face hour appointment is May 1st. I do want to talk to others who know how it feels.

    Liked by 1 person

  3. The unknown or misunderstood often causes the greatest fear in people. To have someone like you & others, willing to share experience of dementia in order to help others is an incredible asset. Hopefully your input will be recognised soon by those who don’t yet accept the contribution you make. I have just finished your book Wendy & was impressed by not only your clear examples of the daily challenges you have, but the family story & humour throughout. You demonstrate you are so much more than your condition. Keep up the fantastic work. I for one am impressed.

    Liked by 3 people

  4. This sounds like a wonderful and much-needed initiative. Such a shame the local mental health people are not more supportive. Keep up the great work!!

    Liked by 1 person

  5. When my mum was diagnosed 3 years ago the exact words spoken to us was ” Yes it is Alzheimers, take these pills at bed time” and that was it! No followup no support and complete devastation for the family left to cope on our own. (Huddersfield)

    Liked by 1 person

  6. Am hoping I can find a group of others who have dementia, as I think it might help the loneliness, depression and isolation I feel so much of the time. To be with people who won’t come unglued or show smirky superiority when I say I don’t remember. One of the most common problems has been that the doctor who diagnosed me left the area, and other doctor’s haven’t been able to duplicate the findings with their fancy machines. I get really tired of being blown off, but at least my kids agree that I “probably” have dementia..lol. Thanks so much for your lovely blog, your hints and tricks and for just being here.

    Liked by 2 people

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