Week 6 – Penultimate week before our Graduation party!

The final session of our Good Life with Dementia Course yesterday before everyone is invited to join Minds and Voices. I often struggle with courses at the end as I think, ‘What do people have now?’ ‘What happens week 7? Well with our course people have the option to join us at our monthly Minds and Voices Peer Support get together and then possibly become tutors themselves if we get funding for another course.

It was proper dark when I opened the curtains and a chilly bathroom greeted me as it was too early for the heating to have cut in. The taxi man arrived with his usual wave acknowledging his arrival and we trundled through the autumnal mist. This led to conversations about the weather of old; how some would call it a fog, but in truth it was a light mist.

I remember once when I was still married having to walk in front of our car, as the fog was so thick you couldn’t see anything……..funny how it was me walking out in the cold…..🤣😂

Anyway the bus arrived and we trundled our way across a mistier Wolds……feeling positively winter like…..I sat downstairs next to the driver as windows were steamed up with the cold and this gave me the advantage of his windscreen wipers…….

We arrived in York finally after long long queues of rush hour traffic to find the sun had broken through and there were 2 hot air balloons having a lovely flight over York…..

Damian, also held up in traffic, was late picking me up so I was freeeezing by the time I hopped into the car…..after a catch up and more queues of traffic we finally arrived and had to get a wiggle on to set up the session.

Stephen, an Occupational Therapist, from York St John University arrived and after talking a while we suddenly realised I would be talking to his students in a few weeks.😳😱😊

He was here to observe but also to promote his research on ‘shared activity’…….where one person with dementia and a carer take on an activity as a partnership. A bit like me and my son inlaw with his garden. I teach him how to do his garden and he supports me with all the heavy stuff so I don’t get in a pickle. It’s a win win situation…..neither one of us takes over.

Alison was also here from Leeds Beckett Uni to take us through our paces with her ‘Keeping Active – research into movement…..’ study.

So, everyone arrived. Today I was chief press officer as we had, Peter, Rita and Elaine as tutors……
Damian started off the session. Our session today was about Adapting to the world around us, including driving, activity and simply acceptance that we CAN keep engaged.

We handed out Agnes’s book Talking Sense to each of our learners and I told the story of how Agnes came about writing it.

We then spoke about whether we spoke and told people people and everyone is different. I showed my card from Young Dementia UK that we started piloting yesterday. Everyone said how the wording was much friendlier than many they’d seen

When asked whether people speak about dementia, one said,

My wife gives me a lot of courage that I can still do things – I’m very fortunate”

and another:

I don’t flaunt it but I get on with it as best I can” 

Peter, our tutor was having a ‘wibble of a day’ but was wonderful in sharing his feelings. It was a bad day but he felt safe sharing it amongst us today.
It’s great to be here speaking with people you can speak with” he said……..wonderful….

We went onto medication and how the Department of Health and Social Care ignores the social care aspect of dementia……

After a tea break Alison from Leeds Beckett was next. The lovely Professor Clare Surr is her supervisor. She was there to talk about keeping active and the impact it might have on our life. Being able to function is essential to retain our independence and quality of life. We want to retain our physical function so we need to stay mobile. She went through certain tests used for physical function….however these are just guidelines.

The scope of physical activity is huge from housework to team sports.

The important thing is to SIT LESS…….she spoke of how long we sit on a bus and how long we spend on the computer and I hid for that bit 🤣…….Some sitting is good…..sitting with friends, doing hobbies, eating………Try to get up every 20 minutes, it’s a worry if people are sat for longer than 4 hours at a time…..simply break up sitting time………

New guidelines came out last Saturday from the Chief Medical Officer for everyone …..:

Some activity is better than none

2 days a week activity to improve muscle, strength balance and flexibility

150 mins per week of moderate intensity aerobic activity building up gradually

Break up prolonged periods of being sedantary with light activity when possivble at least with standing…….

80% of the population know that exercise is good for you but a much lesser number actually puts it into action. What’s good for the heart is good for the brain……..

Peter piped up ‘My brain is elsewhere, goodness knows where” ❤️ Peter is further down the line than me but although he was having a bad day, he came alive during the exercises. He whooped with joy as we flung our arms around and for a moment his bad day was lost…  – wish I could have captured that moment…..We did some wonderful flexibility exercises and had fun wobbling on one leg, seeing if we can do things that require coordination – very good fun………and brought a smile to everyone’s face.

She left us with: Sit Less, Move more, feel good, have fun and keep smiling……….The best activity is the one you WANT to do………..

Last tea break time and bringing the session to an end…….talking about the graduation day next Monday when we review the course and their thoughts on what worked for them.

So Damian finished off asking what’s been good about today……..

I’ve not had a good day today but I’m glad I came here ”

“It’s encouraging to be with people”

I had a lovely time as always. A mixed day for many people but all appreciated being together…………

Once me and Damian had tidied up and I‘d done my washing up duty, we set off for Damian to drop me at the station and a wave of exhausted came over my whole body. I was once again a Duracell Bunny whose batteries were spent. As me and Damian chatted, it was sad to hear that some sceptics had said that our course would work simply ‘cos I was there. 😔 But many of the decisions about the content and also about our research was discussed by my playmates in Minds and Voices when I wasn’t there.

So never underestimate people with dementia, no matter what their stage as everyone has something to offer, they just need the right support to enable them to be involved, just like we have in Damian………….that’s why I love Minds and Voices, equals at different stages of dementia…..

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.

12 thoughts on “Week 6 – Penultimate week before our Graduation party!

  1. Hello again Wendy. Thought I would let you into my big surprise, I think I wrote to you about nothing happening in my area of Durham. Mericles do happen, as right here in my village, a Memory Coffee morning was started. I went along and we had great fun, only a few people, mainly helpers getting it started, but baby steps.

    Liked by 3 people

  2. Totally agree about exercise Its great for your body and mind ..No specific classes for Mum available round here.
    Mums weight has increased dramatically/to a dangerous level because she now just sits !
    As a family we now take her for walks to get her shopping at least four times a week.(She can no longer remember how to get back to her accommodation so does not go out alone). We also take Mum out to National Trust places to have a walk before the promised cup of tea. We’ve had to cut out the lovely cakes on offer though!!

    Liked by 3 people

  3. “Sit less” is good advice, although I prefer to put things positively: “move more”.

    And don’t sit too much less Wendy, we need your writing, and it seems to be good for your well-being.

    Liked by 1 person

  4. Hi Wendy
    I have just this second finished reading your book. So inspiring. I work alongside people living with dementia and i hope through reading your experiences I will have a better understanding. Thank you so much for sharing.

    Liked by 1 person

  5. I wonder what might be on the back of the Dementia Card?

    Perhaps a person could be encouraged to personalise on the back as to best ways to cope, EG: Please don’t shout; Give me time; one key contact number, and of other’s suggestions welcomed!

    Liked by 1 person

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