Week 1 of our Good Life with Dementia Course……

When diagnosed with dementia people can often disappear into a dark hole, having been offered no hope by many who diagnose……this is what happened to me, 5 years ago to this very day….July 31st 2014. I was given a sad look, a handshake and told there was nothing they could do. I felt abandoned and didn’t know where to turn…..

Now 5 years on and this is still obviously what can happen to  people in York as those who diagnose have failed us yet again and failed the people they diagnose. Once again the local diagnostic service has felt unable to signpost people to our wonderful course. The course that can give them something they can’t…….HOPE…….all they do is hand out a pile of leaflet and our telephone number; no words of encouragement, no practical support. The mental health team told Damian they had too many numbers to deal with but that’s why they need to look at their system a different way……their role doesn’t end with a diagnosis……..

Well undeterred by their lack of foresight or support for our course, yesterday was session one of a new hope for the new class of 2019…….we want to try and give them that missing commodity – emotional and practical advice from the very people who have been there and got the T shirt. Because our course has been designed by and is delivered by people living with dementia – me and my playmates at Minds and Voices with our lovely abler enabler Damian.

It meant an early trundle on the first bus, changing at Pocklington. I looked at the weather forecast , a tad sceptic after it lied to me yesterday. It said dry and as I looked out of my back window, the sky looked promising….

I decided to believe the weatherman once more and went coatless…….🙄…..The taxi man was on time as was the bus and the town cows were busy grazing on the Westwood as we trundled by.

But it was the sky above the wolds that make me wonder if I’d been duped again…..but time will tell

I arrived in York to find a torrential downpour in full flow🙈 must stop watching the weather….

I eventually ambled to the station and was accosted outside by a woman who said she knew me…..😳….turns out it was Lola from Hexham who was coming to watch our course today. AND she’s been emailing me as I’m going to Hexham in September to meet their playmates ! People seem to know more about me than me……🤣😂

Damian arrived and we made our way to Lidgett Grove which gave me, Damian and Lola the opportunity for the obligatory selfie…

There were due to be 5 people living with dementia on the course and two with partners, so 7 in all and me Brian and Peter were this weeks tutors……


Not the best selfie I’ve taken 🙄 but a nice piccie of Peter…

The first at session is a settling in session where we want people to feel at ease and in a non judgemental environment. Most of all we want to get it right and Damian was super organised……very unusual 🤣😂🤣……….but just shows how much he cares…

Everybody started to arrive…and we met some lovely new people…….all different ages, some with partners some alone…….

Damian started off the session. Welcoming everyone………we went round the table and said hello to everyone…….

Simone from Belgium was there again – he came to Minds and Voices last week……..

To some it’s all fairly new……their stories reflected so much of what we’ve heard before…….denial…negativity from healthcare professionals…..

The subject of driving came up and the loss felt at being told they couldn’t drive…..and travel insurance and assisted travel. One lady who is 58 and diagnosed, and didn’t like the fact that assisted travel meant you had to go in a wheel chair whereas I said yes, but it means you get on first…..😂🤣

One couple loved our cards

And wanted to take it home with them…..and the hubby said he’d be using it all the time to get a word in 🤣

Peter mentioned how it’s so important to help the families and it started a conversation around families feeling isolated and how services seem to think they’re totally separate but we’re always saying ‘when we got the diagnosis, so did those closest to us’. One new playmate said how families nowadays don’t always live close by which means some are all alone…😔

The diagnosis process came up and soooo many stories of length of time, horrible consultants, and simply left hanging, not knowing why you were experiencing strange symptoms………

All that people shared sat comfortably on each session of our course. Everything brought up is on one of the sessions…….👍 Often you can be offered courses but it’s not what you want or necessarily need. The difference is with ours, is that Minds and Voices chose the content because they were the very topics we wanted to know about when we were diagnosed, but were sadly missing from anywhere.

Tea break and stretch of legs time……..

We rounded up the last half hour collecting all the tick charts that people filled in at the beginning…….it was the HOPE scale……

Damian asked us as tutors: what we wanted to say to those newly diagnosed…….

Peter said. “Don’t give up, no matter how hard it gets”

I said, “Don’t think it’s the end, instead think of it as the start of a different life

As Brian said, “Death is permant ……enjoy the life you’ve got. We’re born with nothing and die with nothing and every thing in between is profit……….” priceless ..

The students were asked how they were feeling after the session……

We’re not alone. We’ve all got something in common”…

We’re who we are what we are, take us as we are. It could happen to anyone. Listening to people today I feel very lucky” said another

I’m really happy……, was another “You can focus on what you can do not what you can’t…”

Meeting people all in the same boat”……

It’s all about trying to look forward and doing what you can….”

“I always find it useful to listen to other people…”

What a wonderful first session……..meeting wonderful new playmates and partners……..can’t wait for next week……❤️

How I wished I’d had a course like this 5 years ago….it would have saved a lot of heartache…….but that’s why I do what I do. I just wish professionals would look at the part they play in a different way too…..

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.

22 thoughts on “Week 1 of our Good Life with Dementia Course……

  1. I‘ m from Switzerland. I admire you very much! My father had the same diagnose, but he never didn‘t speak about it. It was 10 years very sad! I‘m very happy to read your blog and your wunderful book! A lot of greets from Regula

    Liked by 1 person

    1. We’ve just applied for funding with Hull University to prove it works and I think might be using 3 sites to put it to the test elsewhere. I think Sheffield is the north one🤔xx

      Like

  2. Were you able to share with the lady concerned about assisted travel, that one doesn’t need to be plonked in a wheel chair if you prefer to walk and can, the assistance you need is with navigating the spaces, more in the way of someone who is blind, perfectly capable of walking but not necessary way finding. On the other hand its nice to be able to choose to be transported, waving regally!

    Liked by 1 person

  3. Keep smiling Wendy ….you look so good!
    I wish the health authority I deal with ( regarding my mothers Alzheimer) did more that hand out leaflets and questionnaires.
    Sometimes as the carer you feel you are totally alone for a positive response or a friendly chat from the ‘ so called professionals’
    You soon realise your best support comes from your friends and families who are experiencing the same feelings and worries as you and your family .
    Keep attending the brilliant workshops .

    Liked by 1 person

  4. Wendy, I attend a once a month support group run by Alzheimer’s Organization here in South Florida, it’s for early stage Alz as well as MCI, I was diagnosed with MCI at 64. Most of the group has Alz diagnosis, only two or three have MCI, happy to say that in the three years I’ve been attending very few have gotten noticeably worse. The group is also comprised of care partners, we begin the session together, then split up. Both my husband and I enjoy the support and the sharing so much that we wish it was held twice a month. It’s great to feel that one is not alone. Groups are wonderful!

    Liked by 1 person

  5. What a great idea, I am so envious. I work in North West Tasmania as the only dementia nurse. The region covers a total area of around 22,400 square kilometres and it is home to approximately 111,300 people ,so I do a lot of travelling. I work with a fly in/out consultant who I text quite a lot for advice. Mental health services here do not see people with suspected dementia so its down to me. I would love to run a similar course or be able to refer on – Mental Health Services in York do not know how lucky they are!!!

    Liked by 1 person

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