Category Archives: Peer Support

My Monthly Trundle to be with my Playmates…….

I really needed a day at home yesterday after a weekend away ….but it was our monthly get together of Minds and Voices, so I found myself crawling out of bed at silly o’clock as my calendar had told me I couldn’t make our Christmas meeting……so how could I miss this one……

It was the usual dark silly o’clock start but the weatherman, the night before, had said it was going to be a sunny day…….mmmmm, me thinks he forgot to tell the early morning rain clouds as it was damp and soggy as I trundled in the taxi to the bus station……

However, the early morning sky did seem to be promising that it was saying goodbye to the night rain clouds, and making way for something better

The bus is always silent at that time in a morning. Fellow passengers having forty winks or simply away in their own thoughts, maybe of a weekend of fun and laughter and were now coping with Monday morning blues, heading for work once more……even when school children joined us they were subdued and hadn’t woken enough for their usual sqeals of laughter and jokiness….

It was so cold on the bus that my feet were like blocks of ice and I sat hunched up with my hood up…..I got off in York town to trundle my way to the pick up point of the station in the hope that the exercise  would wake up my frozen limbs….and it meant I could take another piccie…..this time in daylight with the sun shining….I was trundling past the Museum Gardens when I spied the sun glistening through and couldn’t resist a detour…..

Damian txt me to say he was a bit late so I stood frozen to the spot until he arrived….😂……once we got to Lidgett Grove, Anna had my cuppa tea ready to warm my hands………

Playmates began to arrive, Bob and Sue being first, so lovely to get in my first hug and catch up…..Anna went to pick up Rita from the Care Home…..first time with us since she’d moved. It was a wrench for her to give up her lifetime home but as she sat down next to me, her face lit up and she said she loved the home…so all was right in the Rita’s world……..

Fleetways Taxis had forgotten 7 people so playmates were still on their way………

3 new people came in which was lovely……..and me and Eddy sang, ‘Come and join us…” 😂 which may or may not have settled their nerves………and then 2 more newbies arrived and we sang again automatically…🙈

We went round the ever expanding table, saying who we were…..

2 newbies joined through wanting to join the choir, but it wasn’t there anymore and instead they found out about Minds and Voices and thought they would give it a go. Eddy was able to tell them where they could go to join the choir as it had moved venue. The other 3 joined through finding us on line. Bob has dementia and Mikey, said on Bobs behalf, that he couldn’t hold a conversation……..Bob piped up…

I can hold a conversation when I want to….” 😂 perfect…..perfect….perfect…….⭐️⭐️

A couple, Newbies from a previous week said of Minds and Voices, “we’ve found it inspriring…..”

Eddy filled everyone on his Blue Badge debacle…..he’s been refused even though that very morning he’d nearly got run over cos he wasn’t aware of his surroundings……..Anna has arranged a meeting with the Blue Badge people at the council so Eddy is going with her……👍

By this time everyone had arrived…….bigger table now as we’re growing so fast!

I spoke about a possible collaboration and project with York Theatre Royal……I had the Youth theatre person Kate Veysey, visit me at my village. I said I’d feed back the idea to Minds and Voices, and then if there was any enthusiasm, I’d put her in touch with Damian to book a spot to visit the group……..and well…….there were so many yellow cards go up that I can safely say there was enthusiasm……..

One newbie, who had come as a supporter, said I didn’t look like I had dementia, as I could speak all about Kate visiting me 😳🤐………sooooo…there then followed a conversation about what we should look like….all gentle and informative………but hopefully making a point without putting them off…..

We then went onto the main agenda for the day……our research project……..but first we topped up on tea and coffee……only to realise a major catastrophe………

WE WERE ABOUT TO RUN OUT OF TEA BAGS!!!!!!!!……Damian’s brownie points for remembering the liquorice all sorts was whipped away when he neglected to notice the tea bag situation…….😱🙈……😂🤣😂🤣………

The flip chart paper was stuck on the wall and work began setting out our aims and timelines……..we have until June 2020……..when we would give a presentation to the 10 other DEEP groups who also have been given funding…..so one big party to celebrate…

But now we need to come up with the questions and contact the groups we want to help us by interviewing them……

So we’re going to have 3 focus groups, and 15 individual interviews…….

Damian said how the gold standard is to get ethics approval…..Monica said, ‘Who decides what’s ethical….?”👍

It might be that seeking ethics approval slows things down….but I said how we could put that to the ethics committee, how they need to speed up their process as we’re people living with dementia and 6 months is a long time in dementia world……..

The timescale was the most important as we only had 6 months.

Brian was ‘chief Literature reviewer’………and Brain said, ‘Why not, it’ll give me something to do over Christmas….” 😂🤣

We finished off before lunch talking about the questions…..the pros and cons of living alone versus being in a couple……..

Brian described living alone as “a luxury” 😂…….Eddy says he feels sorry for people who live alone……Monica, who lives alone says ‘if I make a mistake there’s no one around to criticise”

Damian asked Monica, “what would you feel like if you did have someone living with you” and Monica said….” Well they would say “ I shall go get a bottle of milk and I would sit there doing nothing and vegetate…”❤️

So much interesting conversation came out of this…..I had to sadly rush off for my bus, but not before adding my suggestions for questions…..

“what are the advantages of living alone?”

What are the disadvantages if any?”

What are the advantages of living as a couple?”

What are the disadvantages ?”

And to ask both parties each set of questions……

Shame I couldn’t stop but my village buses are few and far between now which means I have to leave York at lunchtime 🙈……

But a last piccie from this morning where I  caught the reflection of autumn in the river as I trundled across ….just beautiful light and colours this morning and an added bonus was seeing my playmates….🥰

 

Final Day of UK Dementia Congress………

Before I start the final day’s blog, ………..

Last month was my dads 100th birthday, if he’d still been alive and today Nov 7th, would have been Mums 100th birthday too………so happy birthday mum……..

We met for breakfast and I was filled in with the raucous singing and shennanogens from the night before……..😂

We then went out in the pouring rain and went over to the Racecourse with Philly……suitcases armed and ready for the journey home later in the afternoon…….

Me Ron and Howard sat with Philly discussing our session at 09.10 on Dementia Enquirers….we were up second after the EDUCATE Deep group………

Making our way up to the second floor we found Buz and Steve Clifford from EDUCATE waiting for their bit to start. Our session was called ‘Reframing Narratives…….’

Buz and playmate Steve started off

They were talking about people being actively involved at delivering training to professionals…..EDUCATE wanted to future proof their inclusion as dementia takes hold by making snapshot videos ….the course has been produced and delivered and put into an interactive training day…..

People with dementia are the best people to teach professionals about what our needs are…” said Steve

When Steve saw an Orthopaedic Consultant his wife asked if it could be anything to do with his dementia and he said….

No, dementia is all about memory”…….so we’ve a long way to go to educate professionals…..🙈

We are the professionals in dementia.” Said Steve

Video clips are embedded into the course throughout the interactive day for those being trained….each clip shows an issue made by people with dementia with that particular issue and then staff are asked to come up with solutions in their work area. We showed Jo having difficulties putting on a cardigan, and then learners had to discuss ways they could help…learners are asked to think about how they would feel if they had these problems…..

They asked the professionals, “How would you feel if a stranger came into your house and moved things around?”…..people with dementia spoke about the kindness of people that has the total opposite effect….’Tidying up” can be a nightmare for us…….

Every person with dementia still has abilities and strengths “

“There’s always something you can laugh at…”

The course aims to challenge the myths surrounding dementia……and Steve finished off by saying :

I’d like you to see…………just me…”

Next up was us….talking about people with dementia being in the driving seat of research…..

Philly started off by telling the audience about the funding, about the fact that we’re looking at the ethics process, the language used in the academic world and the learning of new skills along the way…….

The first question she asked me Howard and Ron  was “How do we feel being part of the pioneers?”

I said……”It feels like we’re at the beginning of something great……we’re not naïve enough to think we can do it alone without professionals help, but academics will be invited through our door and asked questions on our terms, work with us on our research questions. We can challenge ethics , we can challenge academic language….”

The final question was “What does it mean to us for people with dementia to be in the driving seat……”

I said how it shows ”the CAN instead of CAN’t when you have dementia……It will question current perceptions about our abilities…..”

Ron said “The days of us being the guinea pig are over..”

Final presentation was by David Truswell on supporting people living with dementia from black Asian and minority ethnic communities…….

It was centred around his book which concentrates on Iris, Afro Caribbean’s south Asian, Chinese and Jewish and has chapters by people from those communities…..

The experiences may be similar but their cultural experience within their own culture may be different and require a different approach….dementia is often within mental health services and many of these cultures have a fear of being shut out from their community if it’s known they have dementia….people can revert back to their mother tongue or a combination of both which, as you can imagine can cause huge difficulties…….

Services have short comings – they believe families will ‘look after their own’, staff will be unfamiliar with an interpreter, staff may be unfamiliar working with a family rather than just an individual, lack of information on community resources, little known of the mix of traditional medicine and pharmacology…….

I asked David, Were people willing to talk to him? – his response was just what I wanted….that people are always willing to talk and he is frustrated when researchers say people are ‘difficult to reach’…..

Their website to know more is www.demace.com Along with videos……

It all went really well…….

We made our way back down to the stand where I sold the last of my books and Dory was doing a roaring trade on giving our leaflets out along with Agnes’s Talking Sense booklet which can be downloaded free here….

https://www.hammond.com.au/images/Talking-sense.pdf

We were all coming to life as people came to chat at the stand but then as soon as we were alone we were jaded flowers……..it had been such a long couple of days, but just one more session to attend after lunch with Damian and Howard on our Good Life with dementia course………..

Murna was the chairing  the last session of the day and Howard and Damian were going first due to our train times….

Howard said being diagnosed “felt like falling off the edge of a cliff”….we shouldn’t be fed doom and gloom ……. Servicing are not providing what we need…..our Good Life with dementia course aims to provide hope…

We then watched the 5 minute film all about our course, designed and delivered by people living with dementia….where playmate Stuart said, “it’s not the end, there’s still a life ahead….’

Learners on one course could be the tutors of the next”

Lovely to see my playmates on the video…..a great way to end Congress………

My quote of the day has to be from Aimee…….who says this after temporarily falling asleep………..

My eyes are having a ‘long blink’…….” Must remember that one……😂

 


Thank you to all our ‘able enablers’ for making this a stress free and fun time…….just Steve Milton and Rachael Litherland missing! Without you organising me, I wouldn’t feel safe doing all I do…..

And to all the people who came up to our stall to chat……..

 

A Trundle to support a playmate……..

Yesterday I had a trundle to Halifax – don’t think I’ve ever been there before 🤔…..

A lovely playmate of mine, Julie Hayden, set up a DEEP support group for people with Young Onset dementia in her area, because, once again, there was nothing……..

Julie had contacted me a while ago to ask if I’d attend their annual awareness event which also happened to be their 2nd birthday!

Originally it had been planned for next week but then I got a sudden unexpected invited to speak in Italy 😳….did I just say that……gulp🤯…….but more of that next week……

Anyway we managed to switch and change things around so it fell on their second birthday instead, so was meant to be….

The sun was shining on the world when I opened my curtains…..but the taxi driver was late….I rang their number as usual, and my lovely phone person at the other end knew it was my number, said ‘Hello Wendy, sorry he’s late but you’ll still be there in time for your train’….all I had to say was ‘Thankyou’……perfect….wonderful when people are prepared to understand…..

He was a very chirpie driver, who sang ‘Mr Blue Sky’ all the way there and we arrived with 5 minutes to spare…..⭐️

I then looked at my email from Julie and we’d agreed for me to be met at the station at 13.24…..I seem to get numbers in a pickle of lately and had actually left 2 hours early 😳🙈🙈🙈🙈……but when I got to Hull, my train was mega delayed so for once it didn’t matter 🤣

I tried to add 10 to 38 and came up with 58 🙈 but knew something wasn’t right……maths was my strongest subject at school…😔…..numbers so often become a problem for people with dementia and that seems to be becoming the case with me…..me thinks it’s because I travel nearly everyday, that I don’t panic. I txt my daughters just in case I forgot to tell them this latest issue and Gemma immediately txt me back asking if I needed to FaceTime for help but I’d already found a smiley faced guard to help me…..if I didn’t travel often it may put me off travelling……..

Anyway…….the sunshine over the Humber cheered me up

The chaos didn’t stop there as, due to the train being mega delayed  they decided it would terminate before Manchester, so lots of travellers were looking for that smiley face again……..her smile was tinged with fraughtness by now……..🤯

I arrived in Halifax, watched the world go by for a while, due to my timing and was soon met by Rosie from the Alzheimers society who was having a stand at the event. We ambled along and a few minutes later  were in a wonderful renovated church  which has now been converted to a community venue where they have a theatre, café and many rooms……..and of course my first task was to have a hug with playmate Julie

It was an event specifically aimed at highlighting Young Onset and I was hoping word would get round that Julie’s DEEP group exists…….the Mayor arrived as did some other helpers. We were hoping the weather wouldn’t put people off, but you just never know at these events……

After waiting and waiting, it was obvious that people just weren’t going to arrive. I felt sooooo sorry for Julie……people put in such hard work organising events and when people who promised they’d come fail to turn up it must be so disappointing. I don’t mind….it happens. You can’t force people to come and listen…….but my heart sank for Julie……….

So instead of what was planned we simply sat and chatted and that was nice in itself. It also meant I could catch an earlier train home which is always welcome. However, arriving at Leeds I found more chaos, more cancellation, more delays……so my ‘on time sardine’ train didn’t seem too traumatic……….🙄

 

A Trundle to support a Playmate……..

Yesterday I ventured on a long journey to Brecon, in Wales. You may think why, after getting back at 8pm the night before, would I then get up at silly o’clock the next day and travel all over again? Well…..this was for special people…..to support my playmates, other people with dementia, starting up a new peer support group like my Minds and Voices……I’ll do anything for playmates……

Before I start the blog I’m going to ramble for a bit, explaining the importance of peer support to me….

When I was diagnosed, I was the last person on the planet to join social groups- I wasn’t a sociable person, I liked my own company. Sports clubs, yes….I played every sport imaginable but not the social side of things……however when dementia turned up on my doorstep, I felt so alone, so isolated, as though I was the only person with this dreadful future hanging over me…..

I remember my first visit to Minds and Voices….it didn’t have a name back then and met in a small back street café – the story’s in my book. I remember the fear I felt and anxious knot in my stomach as I didn’t know what to expect when I opened that door….. All I knew was I needed something. I needed people in my position to run things past. I would never have thought peer support would have been for me but it’s been my lifeline.

Many friendships evolve with time, well time is one thing we don’t have. Our friendships seem to evolve immediately. Put me in a room with people with dementia and they’re instantly my family, sounds weird I know. But the one connection we have is dementia, nothing else matters.
We don’t judge, we don’t criticise, we don’t discriminate. We all have dementia. That cruel disease has brought me the gift of meeting people I would never have met in any other circumstances. Wonderful people, all there for one another with that common denominator………they’re very special. And for those who are reluctant to join groups, I’d simply say, give it a try. You’ll never know what gems of people are just waiting for you and need you as much as you might need them…

End of ramble, back to my blog…..

I’d got home so late the night before that I had to hope that the organised me had everything ready as my batteries were well and truly dead after a very long but wonderful day previously.

The morning came and I just picked everything up as normal in the hope it was all there. I was on automatic. The taxi arrived, the first train arrived, I jumped on the second train to Manchester in Hull (slight exaggeration there🥴)….well I had my tickets in my pocket when the guard asked for them, so that was a relief.

It was another wonderful sky across the Humber

The adorable Rachel Niblock, from Innovations had asked if I would support playmate Frances at the launch of her much needed peer support group in Brecon. Frances despately wanted her own group of playmates and since there wasn’t one, she decided, with the help of Rachel, to start her own. Playmate Dory had done the same in Wales. She’d turned up week after week in the local pub and been alone, then suddenly one by one, playmates started to join her……wonderful and all credit to Dory for not giving up.

Seeing as it Rachel organising things, I had no worries. I didn’t even print pictures and havn’t a clue where I’m going. I’m just following Rachels detailed instructions – that’s how much I trust all at Innovations. However, I’d forgotten that the time I was travelling would be rush hour and I was firmly squashed with all the other sardines on the Manchester train…..more sardines prised themselves in at each station ..the woman next to me amazingly found elbow room to crochet and suddenly let out a gasp….she’d gone wrong…..unravelled it, only to let out another sigh….I simply said, “was it right after all?” And she laughed and nodded…..at least they were smiley sardines😊

I’ll stop waffling now or this blog will go on forever!

Rachel picked me up at Hereford station as planned along with Dory and the adorable Megan…my new best friend….

We back to her little haven lodge in the most stunning area, had a cuppa soup so we wouldn’t make a mess down our clothes 🤣….and then they took me to my B&B just up the hill……and wow, what a view from my room…….

After I’d got myself sorted, we made our way into Brecon to the Wonky Green Book shop called The Hours, with the loveliest of smiley people and a display of my books……they’ve been nominated for the UK’s best small shop………!!!!! They find

out in November if they’ve won……..🤞an independent book shop with a wonderful little café at the back……

Frances arrived and another piccie

The plan was for Dory and Frances to interview me about my book, which I was soooo looking forward to…….

We took our places and the seats laid out in the book shop began to fill up………Rachel had decided to record it for Dementia Diaries, so as soon as the link appears I’ll publish it…..

Rachel introduced us and Frances started off by saying why she needed to set up “Like Minded People……..” ……Frances felt sad that she didn’t have her own group…….it was reading my book and meeting Dory that made her realise she wasn’t alone.
She asked Nicky and Leigh if she could use The Hours coffee shop to start a group and they kindly agreed.

We talked about how I wrote the book, how TIME has taken on a different meaning with dementia. Time and nature have become so important to me. Taking time to see the simplest of things and appreciate their beauty. Many people spend their time wishing for the weekend, wishing for tomorrow, wishing their lives away and miss the small moments of magic all around them…..whereas I enjoy today, the magical small beauties and if today is a bad day, then tomorrow may be better…..
I read 2 passages from my book ending with the Billy paragraph before we all took questions from the audience. People were so kind and there was much raucous laughter, tears and silence as we spoke…we made a great ‘Three Amigos’ or ‘3 wise monkeys……’ 😂 and it was because we were three that it was so special…..

What a wonderful time we had. I signed books afterwards and answered more questions before people drifted off and we waited to see if anyone would attend the first meeting of Frances’s group. – even if it’s just the 3 of us, the word will get round as the audience talks about it outside to others, as we all spoke about the importance of this special friendship created when part of a DEEP group……..

Time for one last piccie with Nicky and Leigh before we left…

I was totally exhausted when I got back to my B&B with the biggest bed in the world……but wouldn’t have missed today for anything…….

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” ❤️

Day 2 of Dementia Enquirers……

The storms of the day before seem to have subsided but the uneasy feeling in my room continued…..there was something about my room that felt so sad, as though a tragedy had occurred here and left behind it’s mourning……it felt empty of any kind feelings. I know that sounds odd but that’s how it was…..

Breakfast would be the first time we were all together as Agnes arrived late from another event and I’d already gone to bed. Twitter showed we were awake so at 8am we met up for breakfast and had our hug…..before putting the world to rights on all things audiology, but also dispairing at the latest news from NHS England that appeared on Twitter

As we all said….where is the evidence that taking people back to any time helps as some may find that period of time a distressing period in their lives; it will need updating constantly. Why not simply ask what matters to each person and treat them with kindness and knowledgeable staff? Why waste money when it’s being said no money is available for staff and staff training? Rant over…….

So time for a calming photo of St Katherine’s courtyard looking towards the chapel…

09.30 arrived and we all met up to start our session.

Rachael started off and we simply went round the table and introduced ourselves again as Tom Shakespeare, Rosie Ashworth and David Crepaz-Keay ( our more than helpful professionals) had now joined the party.

It was a full day and as Agnes said, our meetings are full of laughter and conversation which helps leads to more in depth outcomes…..many sceptics may see this as a trivial exercise and why on earth have we been given half a million pounds when it could have gone to real research……..well, this is innovative true research and the money could not be better spent….The national lottery were blown away by our format……

Time for an early morning piccie while everyone was fresh! The full gang😊

We recapped on yesterday afternoon and the successful bids from DEEP groups for funding and the detail of each project, which are fascinating.

We all stressed the point that we’re not trying to prove our finding better than researchers – we’re saying how academic research AND our own research could be a force to reckon with as we’re the current missing link. To enhance the current process of research could only be a good thing.

Interestingly Tom, said how the list of projects are unique and probably havn’t been researched before……which just shows their importance…

We had a wonderful discussion around the vast difference in care for those with different disabilities – David said  “Society makes these ‘mind/body’ splits when thinking of disability.”

We then went onto possible seminars and webinars opportunities. We’ve got a number of stakeholders (people interested in our progress) and those supporting us as well as ourselves and of course, the wider world to keep communicating with…..

We’ve been given a spot at Dementia UK Congress…so Philly and Rachael will be sorting that out to see who logistically can attend.

There was then a discussion which lost me a bit on Rights as I can’t keep that legal info in my head but the likes of Howard are far more knowledgeable and skilled with all this so I’m happy to listen and let it disappear from my brain…..

There’s a Special edition of the Purple Dementia Journal (an international journal) and in the new year are running a whole journal on articles by people with dementia on research and our paper will be in their. It will be online in December and hard copy at the beginning of the year. Great news!

We spoke of the various ways we could advertise the work we’re doing to show people our work and what we’re capable of…..as people living with dementia…..lots of great exciting ideas – watch this space!

Tea break time and still the conversations continued…..and David even met the needs of Rachael and Philly by going to the shop for cake ❤️🤣😂

After a break David spoke about developing an oral history project.
So why would we want to do an oral history about dementia now……..because we’re in a point of time where it matters…….

We’re marking a point in time, just as he did about asylums. He wanted people to know what it was like, but not from a perspective of others but a perspective of people who lived those lives.

Placing our stories in a social historical context, and sayin this is our story at this point of time will be a really important document for now but also the future to show what living with dementia is like at this moment in history.

So what is oral history? – it is simply us telling our story……it’s placing it in a social and historical context.

It’s history – what people will see as the state of the world at that point in time……

The curator of Oral history at the British library advised David how it should be done for his project and we would have to be trained at how to do an oral history interviews for ours, but what a new skill to learn!. We should be the interviewees and interviewers.

I found David’s talk the highlight for me. His enthusiasm for this project with us is so infectious, I just can’t wait to be involved.
If we don’t tell our story, someone else will and we will do it better……it’s nothing to do with technical skills, it’s all to do with values, OUR values to our world, not politicians, healthcare professionals or academics….OURS……..giving people the space for people to speak about their life worth living……because it’s called “oral’ it doesn’t all have to be solely the spoken word – objects, photos, capturing facial expressions are all important. Bringing jigsaw pieces together in an oral history format……the life history of so many people have been lost through dementia and we don’t want ours to be lost.

Blown away by this……⭐️ and he also added…..

You can’t go for more than 7 minutes without laughter”………❤️…I’m sure it’s laughter that help us focus on the task in hand, as we release the tension of having to concentrate so hard through laughter….

So now to lunch……..whenever food is available I eat……another reason for going to so many events! 😂

Anyway after lunch we had Sini talking about Theories of Change……..from the Charities Evaluation Services…..

Understanding why things happen and evaluating our work….what changes may happen, what sort of things will need to happen to make the change happen…..

Evaluating is Improving what we do and learning lessons for next time and it’s important to demonstrate what improvement we’ve made….and provide evidence to those who require evidence.

She showed a great slide demonstrating the chain of evaluating research…

Outcome is what you actively work towards, Impact is what you hope for…….

She used the example of having a birthday party to demonstrate each stage.

She suggested the best way for our project is to go backwards and start with deciding on the Impact we want to have ………it went a tad downhill and brain explosion time…🤯 I just started to get confused as Sini worked backwards, with different colours and confusion reigned…….we were split into groups and………we each had a different outcome to discuss the inputs needed……sooooooo

We had 3 topics to discuss in groups but my batteries were running out and this Duracell bunny was losing her hop……..

It was a wonderful discussion but a tad too far for me. I know I contributed but couldn’t type and contribute…..so here’s where I end for the day……..and after a long but amazing day we trundled back to our rooms for a piece of silence before tea….and passed by this wonderful statue on the way……

Final day tomorrow……

Heading to London ……….Day 1

After a lovely overnight stay in Leicester I arrived home mid evening to pack for the next trundle the following day to London. I’ve got a full diary now until the end of October and they all seem like a good idea at the time. But then November is quieter – I wish events could be spread themselves out a bit better 😂

I never know when it will be my last, like never knowing when the ‘last’ of anything will be, so, although I decline lots of offers, I do like to cram my diary,and suffer the consequences after🙄

On the way home from Leicester, I had a sudden panic of not knowing anything about the following day. I had a hunch it would all be waiting for me on my kitchen workshop, but couldn’t remember any detail of when and where I was meeting Rachael from Innovations. I knew my brain would have shut down by the time I got home so simply txt Rachael. She came back with the detail and I was a happy bunny. Whenever Innovations in Dementia are involved I never worry or plan as much, as I know they’ll look after us and sure enough, my pink file stuff was all sitting happily on the side when I got home……

Waffling again …🙄…..it was a very wet blustery day that greeted me…the only piccie I could get was a rain soaked window so I missed that one out….Piccie of my playmates later will make up for it…..

We were gathering for 3 days for a Dementia Enquirers Pioneers meeting at St Katherines in London. They’d tried to build in more travel and recovery time as it’s a very intense few days for our brains to cope with, but very pleasurable. I don’t think I’ve been to London for months 🤔….and definitely not since I got my hearing aids, so it’ll be interesting to see how the noise is…

Half way there and the skies brightened a tad…well the rain appeared to have stopped…

Rachael met me at Kings Cross along with Dory and then Philly and Tracey joined us and we all trundled in a taxi with a lovely cab driver who was entertained by our stories and laughter, especially about the 3 of us all being in yellow coats

My blog told me I’d been to St Katherines in the East End 3 times, but as the man showed us to our rooms through the maize of corridors and stairs, it felt unfamiliar. It didn’t feel right for some reason. I spent the next few minutes walking round in circles around the room, trying to settle myself – don’t know what was wrong with it….just didn’t feel right or friendly…🤔😔 not sure what’s going on….

We arranged to meet for a cuppa and catch up of the session at 4 so solitaire filled the gap and catching up on Twitterland….and once we were altogether the laughter began again…

We went over the last meetings. We were shown the little video we made talking about reviewing the research projects. You can view it here

https://www.dementiavoices.org.uk/dementia-enquirers/

The film shows the calm relaxed atmosphere we create and can work in with each other. We speak from the heart, and feel so calm and comfortable. We all agreed that it’s other people who make us feel uneasy but here we always feel calm with Innovations because we know everything will be ok, no matter what.

We went through each of the groups who have been awarded money to carry out their own research. Such fascinating projects – “Living alone versus living as a couple”
“Does class and ethnicity impact on the dementia pathway for the person with dementia”
Testing out accessible instruction videos for Alexa
To “how can public transport be improved” and many many more…..

It was lovely to see and be reminded of them all again.

Amidst the crashes of thunder, lightening and torrential rain falling outside, inside we were happy and relaxed. We were saying that this has never been done before…..people with dementia in the driving seat and so many professionals are watching and listening…..just to see whether it works…..well, so much time, effort and funding has been put into this project and the way we’re recording the progress will become an historic record for the future….how amazing to be part of it…❤️….to show what people with dementia CAN do……

Finally time for tea. Once again, laughter and conversation dominated this simple activity of eating but we were all fading, or at least I was….so instead of joining the evening sing song, I retired to bed and some silence…….

P.s…..my hearing aids have made London into a tolerable noise bubble instead of the crash bang wallop city of old…..wonderful……day 2 tomorrow…..

Graduation day for our class of 2019 yesterday……….

It was earlier than usual when my alarm went off yesterday……

When I’d gone to my taxi people to book my taxis for the week, I got to “Monday at 6.30 please’, and a look of horror came over her face when she said how they’d been inundated with airport runs that morning. I suppose it’s the first week where children are back at school so many are flying off for cheaper deals.

She fiddled with the bookings and eventually said they could only pick me up if they can squeeze me in at 06.10….😳…..well better than nothing, but very ‘twirly’……..

It was proper dark when I opened the curtains.The white owl was hooting in the paddock across from my window. I could hear it so clearly but couldn’t catch a glimpse. I switched off my light in the hope I’d see it’s white image swoop through the field, but it wasn’t my lucky morning, as the hooting continued……and I got dressed…..

Turned out I was sharing a taxi with a fellow villager and we trundled the back way through the Westwood with a beautiful sunrise in peaking between the trees….

Being mega early into town, it was earily deserted…..only the paper shop stirring and waking for the day. I didn’t want to sit in a deserted bus station so I ambled up and down the paths outside, waiting for other travellers to arrive to keep me company.

The bus finally arrived and trundled across the Wolds to York…….only for it to come to a halt and to hear those dreaded words….

I’m having problems with the engine so I’m just getting some advice”……🙈

We finally edged our way towards Pocklington but then had to get off and admit defeat….they’d send a replacement 🙈🙈🙈🤯…..luckily the hoards of school children all decided to get on another one that came for York, that went the long way round. It meant that when ours did turn up, instead of it being chocca there were 6 of us and we made it into York in record time as we didn’t need to keep stopping for the kiddies……

Is it because I rely on public transport all the time or is it because I’m jinxed and unlucky with my trundles……🙄

Anyway….Damian finally pulled up in his car and I slid into the seat, as my body was like a block of ice, and we trundled onto Lidgett Grove and set everything up ready for Minds and Voices AND our new playmates! Whenever a course comes to an end, it always worries me ‘what happens next’…….well, with our course at least people have the option of being able to join Minds and Voices. Not all of them will as some don’t live in York, but they can if they wish.

Everyone started to arrived, new friends and old and we had a full house……..with cackles of laughter and hugs galore………❤️

It was the last day of our course along with a Minds and Voices meeting so our new playmates could get a flavour of our monthly meet up.

Damian started off by going round and we simply said our names. We shared our thoughts about our lovely playmate Liz, who sadly died at the weekend, but we celebrated her smiley face and her cheery disposition……

We also celebrated 5 years of Minds and Voices today…..

We looked back at how the course went and reminded ourselves what each week had been about.

Damian had produced a sheet of what we’d learnt during the course and the comments we’d made.

Professionals can only learn so much from a book, we’re the experts”

The supporters said “Properly listening to people with dementia helps”

“We can learn from each other’s experience”

“Challenging behaviour is what other people think we do”

“You might not lose all the billions of cells in your brain, but if you lose the one that makes you leave your shopping on the bus, it doesn’t help”


“There’s no danger of us sugar coating dementia, as we all have our wibble moments”

I think I’d got so cold en route today that part of my brain was still thawing. I wasn’t on top form …..but I kept going…..my typing giving me something to focus on….

Damina went through the top tips we came up with…..

On relationships, I said, Living alone is good as it means no one moves things around, and Elaine piped up, ‘well I’ve been married 50 years and Eric has never lifted a finger so nothings been moved for me’…….🤣😂🤣😂

Another theme was around what services should be available or done differently……..so Damian created ‘Our Manifesto’……

Which included:

We should not be fed doom and gloom and no solutions…”

Professional have historically only dealt with people in the later stages so often find it difficult to understand those in the early stages…….

Our new playmates were then asked to complete another Hope scale form. They did one at the beginning to say how they felt, but were now doing one again to say how they felt now

It was then time to give them their certificates……….and photo time for everyone…..

Brian didn’t fancy standing up and I got him with a grumpy face, but another photo caught him smiling as he said of life: “I’m just passing through…🤣”

We finally went round and asked our new playmates what they’d got out of the course:

It’s been a saviour for me”…..

“Very grateful for it…..”

“Cathartic – Better than keeping it inside”

“Very informative and nice to meet everyone – I’ve really enjoyed it”

And our last comment was a huge smile………….

I ended with:

I find the wonderful thing about people with dementia coming together  is meeting such wonderful new people. Dementia has enabled me to meet soooo many wonderful people that I wouldn’t have met if I hadn’t have been diagnosed with dementia. It’s like a kick in the teeth for dementia as it’s a positive…..”

I had to leave at lunch time for my buses, but everyone stayed for lunch…….hugs, goodbyes and smiles ……..wonderful……exhausting, but wonderful…..

And a nice calm piccie of the River Foss while I was waiting for one of my buses…..

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…..

Next session of our Course……

A long blog but lots to talk about…….🙄

It’s been 2 weeks since the last session of our Good Life with Dementia course, so I havn’t a clue what number week it is until I get to see Damian!

The buses have all changed and I havn’t been able to access the timetables which has been a real bummer……I don’t know if the York buses have changed as well but I found out that the first bus to York is 06.47 which seemed much earlier than before but gets me into York when I need to be there🤔…..but if it is the time of the bus now it might affect how frequently I can get to Minds and Voices, which will be very sad…..but let’s get a timetable first…

Anyway…..this week is getting me back to doing things but it’s really hard after a quiet summer. It’s the one thing I want but it’s so hard to get back ‘doing’. Over the summer it’s as though the world around is coming to a halt. Sounds weird, I know, and it’s not that I havn’t done anything, it’s just been a different slower routine, which starts to feel nice as well as sad. It’s as though dementia is wrapping you in a hug, making you feel falsely safe and comfortable in the silence, as though isolation is nice…….it isn’t…..In a previous life I would have enjoyed the calmer, doing what I fancy, days. So what am I worried about? Well I suppose, of forgetting how, of not knowing how, of not being able…….I know it will be hard writing talks again, getting up and travelling. It will be exhausting. Those are the fears which enter my head at the beginning of summer….it’s only when I start again that reality takes over. I just hope I don’t forget the ‘how’.

Anyway it was eerily quiet when I got up….and I soon realised it was still dark outside 😳….the first time for months and a sure sign of autumn knocking on the door…As I sat having my cuppa, playing solitaire, the dimmer switch was gradually turned and the world was waking up and the light appearing.
The taxi driver arrived on time and even he commented on the darker morning, but it was a beautiful trundle along the Westwood.

The skies from the top desk of the bus were very special as we trundled over the Wolds.

As we trundled into York I could see that normality had already arrived there with school children slapping each other on the back, laughing and joking after the long summer absence.

Damian picked me up from the station as usual, we arrived at Lidgett Hall and put the room together ready for our Class of 2019 to arrive. It turned out to be week 5 and ‘The Market Place’. Many local services were coming to give us a 5 minute pitch about what they can offer us.

People started to arrive, the volume rose and hugs and laughter filled the room…..all the external people sat at the front and Rita arrived saying it looked like we were having a party! Rita, Paul and Stuart were todays Tutors and I was Chief Press Officer.

It was a room full of people – all the students and all the tutors……and lots of visitors. I asked if I could take piccies this week and most agreed. I like it when people feel confident enough to say no as that’s totally fine.

Damian started by setting the scene, introducing us all. Saying how the course came about as as there was so little post diagnostic support in York – some people find some things out and some people find out nothing.

Each visitor had 5 minutes to talk and then at break time would move into the next room to set up their stalls – the playgroup was in there first thing and I said I’m sure we could have a great time with them as well as they’d love to draw all over the leaflets!……😂

Damian gave out certain leaflets, firstly, Dementia Diaries pack, then Our Rights pack…..then the DEEP Network pamphlet…

It was then the turn of our visitors:

Abby from Healthwatch began…….they use the publics voice to make a change. She’d brought a leaflet ‘What’s available for people with dementia in York’.

Jonah – from Older Citizens Advocacy in York. They love our yellow ‘I want to speak card’ and have them all over the office as that card speaks for what they stand for. When people need help, they help and support them, with utility companies, with practical support and emotional support. They deal with individual issues whereas York Citizens Assembly give a platform for groups. The other good thing is if they don’t know the answer or don’t deal with something they will find an answer.

Serena from the council was next. The unpopular thing they do is tell people how much they have to pay for care but the other side is around benefits. Council tax exemption is for people diagnosed with dementia 😳…I told her that I was told by York staff 5 years ago that I didn’t count as I live alone and if I live alone I’m not entitled to exemption……..😳…so after her thoughts I’ll email East Riding council to see what they say…🤔

Penny was next from the council – a local area coordinator. They work with a specific community in York. They know what’s going on everywhere and circulate in all the groups and meet individuals who may be isolated and help them make the right connections and support – They listen first and find out ‘What would a better life look like to you?’. The benefit of this role is it helps the community become more joined up. They help people use or re-find their talents. She spoke of a dog café, where people can be with dogs who can’t keep them at home but who love dogs ❤️

Chris from Join Dementia Research came – she is a Patient Research Ambassador for the York area. Her connection is with heart research. She was here today to talk about Join Dementia Research and her trying to get a research ambassador attached to every Gp surgery in York.

Our lovely friend Anna, the coordinator for York Dementia Action Alliance and also our Zoomette group organiser on a Monday evening was next.
They’re aim is to make York a better city for people with dementia. She’s part of the team inputting into the York Dementia Strategy and wants people from Minds and Voices to also be on the group.👍

Last but not least were Amanda and Mike from Dementia Forward. They’re the leading North Yorkshire charity support for people with dementia. The ‘idea’ is they help people navigate the system and open up new opportunities. Mike is a Dementia support advisor- he works alongside the memory service to offer signposting, advice and guidance. I asked ‘So did you refer anyone to our course?’……just to make a point as I know they didn’t……..His response was, Consultants deal with people in different ways and some ‘refer’ to Dementia forward and others simply give a leaflet…..the leaflet often gets binned……so it’s that inconsistency instead of “I’m going to refer you to……” which sounds far more helpful.

We ended with all the visitors setting up their tables next door while we filled up our cups and then we all went through and looked at leaflets and chatted with them

It all got a bit much for me Alison and Monica and went back in our room and simply chatted. We each have a different problem with noise – me, I simply can’t cope with lots of noise, Monica, is hard of hearing and has to have one person talking and Alsion’s dementia has affected her ability to speak. It was sooooo lovely simply sharing stories. I was able to find out so much about Monica’s past – her music teaching days, where she taught the oboe and bassoon, and her saying how the disappearance of school music lessons has led to a shortage of musicians in orchestras – and her cross country skiing days in Austria as well as the peace giving Alison the chance to join in a conversation and telling us she used to be a nurse. The best bit of the day for me.

By the time it was all over I was totally wiped out and my head was banging. After my washing up duty with Paul helping me today, Damian gave me a lift to the station and I ambled into town trying to get my head to settle.

No such luck though……my bus stop had a notice saying it was shut for 14 weeks…😳 even though people were there. The sign wasn’t in a prominent position and other people were queuing but one man spotted it. Apparently we had to queue outside the Banana Warehouse 😳🤔🙈….but no clue as to where that was. Luckily someone knew and we all trooped after her, crossed over and went along the road ……how on earth were we suppose to know that?

Anyway on the bus home and I could easily have gone to sleep, but tried very hard not to as my stop wasn’t the last stop. I had to wait for my village bus in Beverley, now a longer wait…….and eventually got home and simply sat…….in silence and close my eyes……..a wonderful if not exhausting long day…….I’m beginning to need silence far more now, which is a tad worrying….

My new phrase of the day was courtesy of Damian…….suddenly his phone started talking in his pocket and he realised he’d accidentally rung someone and said ‘ That was just a trouser call’ 😂🤣 never heard of that one before but apparently it happens frequently 😳😂…to Damian…….😂