Final Day of Dementia Enquirers gathering…….

At the end of the session yesterday we said goodbye to Tom, David and Rosemary, our abler enablers, and also to Mahri and Hugh sadly, but we had 2 surprise tea guests in Reinhard Guss and Toby Williamson.

Before we met up with them we all had a welcome respite in our rooms – for some it was sleep, for others a stretch of their legs, to catching up with family or friends on the phone, for me it was silence, time to close my eyes simply to block out the world. My silent world of conversation on Twitter bringing me back to life…..

Then for our tea gathering – photo courtesy of Reinhard…..

Once again laughter and conversation dominated the time but sadly I had to be the first to leave again, Philly helping me to wobble across the darkening courtyard to my room.

Morning soon arrived and our final day began, although today was to be a half day before we all ventured home. Breakfast was a gentle affair before we all met in our final room – a reduced number but perfectly formed…..

We talked about how this 3 days had worked and we all said how if it had to be London it had to be St Katherines as it was an oasis in the centre of the chaos of London. It also meant the professionals could attend which added an added an extra dimension to the discussions……yesterday really wouldn’t have had the same impact without them…

We then spoke of future plans and the topics for the morning – The ‘Belonging’ project with Chris Clarke from Hull Uni. That feeling of ‘Belonging’ could increase through our Dementia Enquirers so we’re looking into whether this happens and how to measure it.

The second was due to happen on International Disability Day in December – a zoom meeting with Tom Shakespeare on Research being done by real people of all disabilities. The intention is learning what obstacles they’ve have to overcome and also share learning through our experiences..

The third was Dementia Congress and our session on Thursday 7th Nov morning.

Names and dates all sorted and allocated….

We then had a discussion about our needs when asked to speak at an event and we decided we would record a dementia diary all together, there and then….talking about what makes or breaks us when that email comes through and – how we feel when it goes wrong and ending with how it makes us feel when it goes right.

It’s not rocket science…..but it’s amazing how many people think we magically appear. DEEP and Innovations get it right every time and I feel safe in their hands as we all do. I never worry when I’m in their hands…..I never plan half as much when it’s them because there’s no need.

We spent the time before break reflecting on yesterday…….through recording a video

The first question Rachael asked us was ‘I feel like a Researcher’ – giving a score between 0-5 where 0 is no knowledge. I said 5 simply because I have such a passion for research. I may not have the knowledge but I have the passion.

We then spoke of David’s Oral History project and we all said how powerful and emotional that made us all feel. He didn’t question whether we could learn this new skill. His humour, his passion, his belief and his understanding made us feel as though we could.

We fed off each other’s positivity and concerns and the outcome of a video was pure magic. I said we were sat in a historic moment in time and, WOW, how amazing that felt……

After a cuppa tea….we then had our final session on ‘Belonging’……a measurement of belonging with advice from Chris Clarke of Hull Uni.

By being involved in a Deep Network project like Dementia Enquirers, will people gain a sense of belonging?…we need to find a way of measuring whether or not this is true ….

Again, Rachael asked us What does the word ‘belonging’ to DEEP mean to you?…..for me it was comfort…..many great contributions including safe, accepted and valued….I don’t trust many people, I trust my daughters and Stuart, as they’re my world, the only other person I trust 100 % is me as I won’t let myself down. But I trust DEEP implicitly not to let me down – they’re the only organsaition…..

We all gave out such personal comments and feelings because we felt safe and ‘belonged’ to each other. None of us felt this unique feeling of belonging related to time – we met through the tragedy of dementia – it was that one common denominator that had brought this family of ours together and given us that instant feeling of belonging. We would never have met if it hadn’t been for dementia. It was all very emotional for everyone. We spoke about the ingredients of ‘belonging’, why DEEP is so unique and special…..

The morning passed so quickly that lunchtime arrived and then it was time to go our own ways but not before a final piccie

To end this blog my quote of the day has to go to Dory:

We’re all unique and wonderful but together we’re a Masterpiece” ❤️

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.

6 thoughts on “Final Day of Dementia Enquirers gathering…….

  1. I am always amazed. You’re such a busy lady and always get where you need to be. Not only that you share all this information and encourage others.
    I have been following you since I read your book. I don’t have dementia and I would
    struggle to keep up with you🤣. Such a driven, inspirational lady. 🤗

    Liked by 1 person

  2. I’ve heard Tom Shakespeare speak a long time ago – he’s very good I think. I’ve also heard or read him on the subject of “Dementia Friends”, suggesting that it’s not enough on its own. His point was that all people living with impairments have rights, and it’s when those rights aren’t met that impairments become disabling. The ‘disability rights’ way of thinking has people with disabilities in the lead, asserting basic rights, and supported by ‘allies’. Not just ‘friends’.

    If that makes sense.

    Liked by 1 person

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