Category Archives: Peer Support

The start of another Good Life with Dementia Course…..

I’m so happy our course has taken off in some areas. Even my own area in the East Riding commissioned one to start the other week, making it their 3rd in a year, so small steps making a big difference to many diagnosed. A course designed by people with dementia and delivered by people with dementia in my support group, Minds and Voices, to those recently diagnosed. We’re not naïve enough to think we can do it all on our own as we’d get in a pickle, get side tracked and chat amongst ourselves 🤣 so we have our able enabler Damian to keep us on track.

It was a glorious morning but I knew I mustn’t be tempted to go out. Typically the day before, when I was home, was grey and rainy 🙄….

Me and playmate Barbara were due to be the tutors this week. We give all my playmates in Minds and Voices a chance to be a tutor if they would like to be.

I was getting my things together, talking to myself as I did, checking things off out loud as today I wouldn’t need a coat and so much usually goes in my coat pockets 😂…..then the ping came on my phone to tell me my taxi had arrived. The taxi driver was a chatty fellow and had obviously been listening to the news on the radio, so the short drive was taken up by him telling me of the nonsensical mess politician make of things; how illogical and complicated they made things. Between us we came up with the answers for the topics of the day and as we pulled into Saturday market square, we’d put the world to rights by using simple common sense🤣 and the sun was shining…

The bus ride was a joy in the sunshine. The town cows were leading one another through the buttercups to their first resting place on the Westwood as the bus trundled by…

I got lost in some other writing and before I knew it we were in York. The journey that takes over an hour gone in a flash. As I crossed the river I looked longingly at the footpath besides but took a piccie instead of the oarsman getting ready for their mornings training

Damian picked me up opposite the station and we headed towards Lidget Grove. This course has been funded by the local CCG. We were expecting 8 people but 2 had rung in not very well. So we were down to 6. People started to arrive and we were soon laughing and chattering. The lovely Irish Alice arrived with her crack and filled the room with her tiny presence. The lady next to me, Helen, suddenly asked me where she’d seen me before….there followed the most gentle conversation that made my day. She looked all serious, and said…

You helped me so much, 2 years ago I think, when I saw you in a magazine and read your book . I’ve seen you everywhere! I can go home and tell people I know Wendy…….” Her eyes were alight with joy and so must mine have been. People don’t realise that when they say things like that it makes my day too.

By the time everyone arrived we numbered far more than the 6 we expected – Damian had forgotten who was coming 🤣…he’s been working with us far too long 😂…

After so much chatter and laughter we finally started and gained some order of some kind. We went round the table and introduced ourselves finding out how people had heard about the course. One was from the memory clinic, which was one more than last time, so progress is being made.

One said “ I never had any blood tests or any tests which I found disappointing – the nurse who visited the house just said, ‘You have dementia’…..so I felt disappointed and coming here today you might be able to wave your magic wand and tell me all about it – it’s only what one nurse said” he accepted what she said but afterwards, she just kept on walking and said nothing else, no explanation…….whether he’d forgotten any other people or any other tests is irrelevant as that one occasion is the one that stuck….

Damian was very good at continuing this conversation. How it must be very difficult to understand and accept there’s something wrong when you feel as you did. It’s often others who notice the problems.

One thing I like about having dementia is we’ve met some really nice people” said one lady.

My double act partner for the session, Barbara, said the first time she came to Minds and Voices, she told her husband she wasn’t staying and was only going once. She came out of the first meeting and said to Colin:

I’m coming back next week. It was like getting a whole new family. My older friends moved away, but that’s not how it should be”

At first one person was told it was Parkinson’s – that was 3 years ago, then a few months or so ago, was told it was Lewy Bodies dementia. This lovely lady heard about our course from Sarah the researcher who works with Dr Chris, clinical psychologist, who me and Damian are working with in a research project to prove this very course works!

Just fabulous stories. Who’s best to learn from, than others with dementia. Clinicians are rushed and simply don’t have time. They have a clinical view of dementia which is very negative and they come over negative. Then someone said it’s what’s you read. One playmate read all the books she could about dementia and she threw them all away because they were doom and gloom and then mine came along…☺️

It was a wonderful start and the tea break was full of conversation, huddles of people chatting, getting to know one another, sharing stories and making new friends. Just wonderful nuggets of ‘champagne moments’ as Damian calls them.

One said Boots the chemist opticians had a sign with the sunflower lanyard on saying if you see anyone wearing this they may need extra help. They then went onto say:

we didn’t’ get any help but at least they had the sign’ 🙄

Goes back to what we say about our invisible disability.

We finally finished by going round the room asking everyone how they found the meeting. Well……it started with chatter and laughter and ended with chatter and laughter

You’ll have the kettle on next week won’t you Damian?” Said a newbie……

Such a good session. Some had entered the room not knowing what to expect, a tad apprehensive, fearful, some said, but the apprehension and fear was nowhere in sight as they all left the room as though they had known one another for years…..

After Damian dropped me off back where we started, at the station, I’d just missed a bus and Damian asked if he should chase along to get ahead of it. But I declined his kind offer and instead, ambled around this once, what I thought was my forever home of York, until dementia came along, deep in my own thoughts, every now and then looking up and taking a snap of my own ‘champagne sights’

In the museum gardens, where so many were lazing on the grass having picnics in the sunshine…

A Farewell to Elaine then onto paradise..

Yesterday was a double whammy day as it was my monthly fix of Minds and Voices and then I was heading off to paradise. Originally I was going Tuesday to Saturday, but my usual rail company, Transpennine, had decided to strike each weekend until June 😳…but luckily Catherine at Appletrees was able to move me back a day..🙄

I didn’t want to miss seeing my playmates so I booked my tickets to travel from York instead. It also meant I wouldn’t miss saying our farewells to Elaine who sadly died a week or so ago.This was our first get together since her death.

Elaine had been going to Minds and Voices since the very first meeting. Back then she’d been beaten down by dementia and was as quiet as a mouse. But, as she said the group gave her back her life and she’d never stopped talking since 🤣. Damian had told me that her hubby Eric would be there so I didn’t want to miss seeing him either. I’d framed the photo I’d be carrying up into the skies with me in June so wanted to give him that too.

The night before had been a tad 🤯 as I tried to make sure I had everything for Minds and Voices and everything for Keswick 🥴…so goodness knows if I had everything 🙄

The morning arrived and I’d woken as if for my early morning walk at 5am. My taxi wasn’t until 07.25, so I got up anyway. I sat on my bed playing my usual wake up games and had to fight hard not to go for a trundle as the sun was shiny and who knows what I would have seen 🥰….but I declined the urge, knowing full well I’d get carried away and miss my taxi…..😂

Everything came on time, taxi first, then the bus to York and Damian appeared in the car to pick me up along with Monica and we settled ourselves down near the radiator to wait for everyone to arrive….Monica was intrigued by my ipad, so I showed her how it took photos…she was amazed….and said, ”I didn’t know when to smile’….bless…

We were going to show photos of Elaine, but the projector wasn’t working 🙈…..so we put a photo on the wall of her instead

People started to arrive, the usual laughter, then sadness, then more laughter and chatter……

Eric arrived and was surrounded by love and hugs and welcomed to talk as long as he wanted before we started……

I’d teased Damian about his ’unkempt look’ 🤣…they were having their bathroom redone so shaving was a luxury 😂

When the chatting seemed to be over, Damian started by paying tribute to our lovely playmate.

I’d written a poem in memory of Elaine and read it out to the group….

When I first met Elaine
She was sat with her head bowed
No eye contact, no smiling
She murmured not a sound

Dementia had taken her
To the depths of despair
People had said to her
“You ought to be in care”

Then bit by bit she realised
She had a voice to share
She had her opinions
Her thoughts and her cares

One day we needed a name for our group
We all thought hard and stared
Then this quiet little mouse in the corner
Lifted her head, opened her mouth

and said
“Well we’ve all got minds
and we’ve all got voices”
So our name was right there

From that time on her voice grew louder.
her face found her smile once more
We blinged up her zimmer, put a bell on her purse
No more would that mouse be silent, no longer unheard.

“Here come trouble”
Shouted Eddy every time
“What do you mean…? Was her response
“I’m as quiet as a mouse”

Her confidence soared
That little mouse roared
The only problem facing us now
Was shutting that mouth

So now dear Elaine
Loved by so many, & never down trodden
You may have left this earth right now
But you’ll never be forgotten

………it was a lovely moment.

The moment was broken by 2 girls coming from York St John Uni doing a taster session of keep fit to music……

Some joined in and looked to be enjoying themselves, but I sat and chatted with Eric and he told me the story of the last few weeks before it became noisy and Anna suggested the rest of us moved to a quieter room as the music was very loud and, even though I liked the music, I can’t talk and have music on at the same time 🙄, but those that joined in had fun and we enjoyed continuing to chat…..we had two new people join us – more that will benefit from peer support….just as Elaine did….

Although today, Minds and Voices felt disjointed, it felt strange. when Monica asked me what I was typing, I said, ‘all about why we’re here and what we’ve been doing’. Her response was: ”well we havn’t done anything, we’ve just been sat around a table” and I suddenly felt sad. is that what it feels like each month for Monica, not being able to hear well?

Must find out if they have a hearing loop or whatever it is in this building so Monica can hear better 😔 Although, would it then appear chaotic and noisy after being in her quiet world? A difficult one….But today maybe I agree with her…..something just didn’t feel right. Maybe it was the sadness of Elaine, or maybe we just didn’t get today quite right 🤔 For once, I wanted to join Monica in her quiet world – maybe it was all due to the last few difficult days I”d had 🤔 Who knows……😔

And so it was time for me to leave for my train to paradise. It had been an emotional but lovely strange morning despite everything…

And now, it’s 7pm as I finish this off, and I’m sat in my chair in my room with my paradise view……and relax….

My monthly fix of hugs……with a sad start to the day…

This blog is probably the only blog I write in real time at the moment, as it’s the only outing I have since Covid 🙄…all the other interviews, research etc are via zoom so I’m missing recording them….all lost memories ……😔

But yesterday morning was my one and only trundle of late to York to meet up with all my lovely playmates,  Minds and Voices..

The third storm of the week was going over us, Storm Freddie – not its real name, but my thinking was, that if you give it a cute name it might not be as fierce 🤣 I’d laid and listened to the torrential rain that had been falling all night, and could hear the wind battering the rain against my window. If I’d be going anywhere else I would have cancelled. But my monthly meet up is so important to me that I was up, showered, dressed and waiting for my taxi by 7am…….

I started my normal routine of going through my emails first. I get an email from The ‘Only good news’ people as it always starts my day off with something nice. I went to Twitter to share that days mood booster and it was then my day took a turn for the worse. 😔

A professional, who I blocked many years ago, suddenly reared his cruel head. He claims to work with people with dementia, diagnosing. Well all I can say is, I’m glad I’ve never been one of his patients. It was this man, who’s constant refusal to believe our diagnosis – in effect questioning his own colleagues ability to diagnose – that led to some of my playmates to go for second opinions. The outcome was still the same, they were once again diagnosed with dementia, but had put themselves through that soul destroying process once more. 

I refused to give in to his disbelief. To go through the diagnosis process once was bad enough, I certainly wasn’t going to put myself through it again to satisfy his doubt.

Well back then I’d blocked him, and until today I’d actually forgotten all about him. But I always say, ‘we never forget how someone made us feel’, and he is a perfect case in point. The minute I saw his tweet, I felt so sad and slowly the tears filled my eyes. How I yearned for that emotion of anger, which dementia has taken, to be with me just once more.

How a professional thinks its appropriate to comment in this way beggars belief. It was in response to a Tweet from a playmate from Singapore. We recorded a conversation for the BBC World Service (I’ll share the link on a future blog). Emily was simply advertising this: His response was:

I instantly felt like I’d been transported back however many years, when he criticised me in a paper for a journal, questioning mine and others diagnosis. It took a professor ally of mine to write a counter paper questioning what he’d said….but why does he continue to doubt the existence of our dementia? Has he never experienced this is in clinic, or has he dismissed the patient as ‘can’t possibly have dementia, they’re too young’/ ‘they’re not showing stereotypical symptoms’ ? If he has had a bad experience within his own family, say this, but don’t condemn us to the sceptics heap when all we’re doing is trying to live.

It continued to play on my mind as he has hijacked my blog about Minds and Voices – would he question all of their diagnosis as well, simply because HE hasn’t diagnosed them? Does he even know Emily?

The debate will continue on Twitter I imagine as I can’t look at it on the bus….but do I really want to? 

He’s not worthy of knowing me and my playmates 😢 I continued on my bus journey to York feeling subdued and sad – oh how I wish I could still feel anger….😔…but tears flow in its place…….I take photos through the window to calm my sadness

We passed field after field, showing the evidence of the torrential rain and storms, their flooding matching my own feeling of being drowned in tears by this cruel man.

I’ll put my ipad away until I’m in the comfort and safety of playmates.

So, I arrived at York and the heavy rain was much in evidence as the river had burst its bank. I mentioned in my first book about the whirlpool that is always under this bridge as a constant of nature and today it was in full evidence with the river being so high and fast flowing………if you look closely, you’ll see it in the middle…

I went down the other side to the Lendal bridge and saw the familiar damage there too..

I didn’t have to wait for Damian long. He and Monica came and Damian immediately mentioned the troll of Twitter and how he’d defended us. I’d also had an email of support saying how many people were watching my back, so I didn’t feel quite so alone then.

I became ‘Wendy the chair monitor’ once more and Anna and her daughter came with the food so soon everything was ok in the world

Before we knew it everyone had arrived. And even though many weren’t able to make it, we were still quite a crowd.

Hugs, laughter and chatter soon put everything into perspective…..

Damian introduced the session by telling everyone about the Twitter Storm…and some immediately said ‘Let’s invite him here’……..💪🏻

So a line was drawn under it and who knows…..I feel ready now to have a recorded interview with him…….

Anyway, we split into people with dementia on one table and care partners on another…..just to make conversation a little easier.

I went over to the care partners group for a photo…

And we had a conversation about Johns Campaign as one had not been allowed to stay with her husband and had to be called there in the middle of the night as her husband couldn’t settle – well of course he couldn’t, because his wife wasn’t with him!

It was then Alun, the artist, arrived with his daughters. On Friday they go and start a new life in New Zealand and as his parting gift to us, he has made and given us the amazing banner he made. He drew around all our hands, asked us for our favourite material and cut each out and sewed them onto the fabric along with sentences we each said. Mine is the yellow silk one

The excitement it brought was palpable, everyone looking for their hands, some remembering, others new for the first time, what did it matter.

The Banner is called

We Want to Speak”

So what better way to display it than with us holding it and and holding our yellow cards.

Here’s each section so you can read the words

Wow, just wow – the response from everyone was just overwhelming……..what a gift to leave with us……we can show it in so many places……..

Before I left, we split into even smaller groups as talking and hearing is in large group is really hard for many…..we had Anna as our able enabler and spoke about libraries and what they do good and how they could offer more. It was a really interesting conversation, simply because Anna encouraged everyone to have a say and because they were able in a small group they did.…..

Sadly I had to leave ……..but what a different mood I left in from when I arrived….the adavantage of peer support that lifts mood from one extreme of sadness to another of joy………

So one last photo and maybe, after this mornings storm on Twitter, it should read:

WE HAVE A RIGHT TO SPEAK…….

P.S the support on Twitter defending me was overwhelming. I know we represent the minority of people living with dementia, but should that stop us from speaking out? We speak because we can, we educate because we can, we live our life as we do because we can. I often think Minds and Voices is ageless and stageless. When I look around the room I just see friends; that they’re at a different stage to me is of no relevance. I’ll hug them as I do everyone else. we are as different with dementia as we all are as human beings. There are some who struggle more than others, but we don’t judge one person as having dementia and question the others – how I wish society could see us all as simply living our lives as best we can…..

As my playmate Howard said on Twitter:

Would we say someone in stage 1 to 3 Cancer doesn’t have Cancer because they are not bedridden  and in great pain? NO”

One of the most important reviews of my book….. 

There’s been many reviews in publications but this one was so important. It’s by Gail, one of the 4 Amigos. In this photo, Gail is the one bottom left with the huge smiley face ☺️

I didn’t ask Gail to write it so no money has been exchanged 😂, but when it appeared, I was thrilled to read what a playmate would say….

Me and Gail have never actually met but I feel we have so much in common. We both love our daily walks with our cameras and Gail takes some amazing photos. We both appreciate the time and effort that’s gone into each photo we see of each other’s.

She’s also an amazing wonder of creations in her craft room as well, so talented.

Gail was diagnosed a couple of years ago I think 🤔

Anyway click the link below, which will take you to Gails blog and her thoughts on my book….

Minds and Voices meet Suki Chan……. 

After the chaos of the last few days I was so looking forward to some normality on Monday, to simply be ‘Wendy the chair monitor’ once more at Minds and Voices. I needed something familiar, familiar faces, familiar routine.

It wouldn’t quite be the normal it usually is as my lovely film maker friend, Suki Chan, was coming up from London to meet my playmates. Can’t remember if I’ve mentioned before, but we’re making a film which will have the intriguing title of “Conscious”, and we want to include some footage of me being with my second family.

I hadn’t been up at silly o’clock for some time and it was very strange. Having consciously to think not to make my flask of tea, and just make a cup…..sounds simple doesn’t it, but it isn’t when you’re routine is for a flask……..

As the taxi pulled up, she flashed her lights for me to see and I was on my way. It was such a gloriously clear morning. I so wished I could have walked and taken my camera. A beautiful sunrise developing one side and an almost full moon glowing on the other…….

We travelled in companiable silence until we reached my destination, the Saturday band stand…..I stood, once again wishing for my camera, but then remembered my phone 🙄

I got rather lost in time, snapping as I passed st Marys church softly lit at the end of the narrow street…

And as I reached the bus station, I checked my watch….9 minutes to go…plenty of time for one more piccie further along the street, as the sun was turning the sky into flames of oranges and reds…..

Suddenly coming out of my reverie, I quickly turned and headed back to the bus station, catching sight of the bus turning in. Wobbling as quickly as my legs could take me, I climbed on board and no sooner had I sat down, it left…phew!🥵

The windows on the bus were annoyingly steaming up – everyone stop breathing!!!! …as the sunrise was glorious.

The moon to our right, setting in a sky tinged with pink….just stunning but you’ll have to take my word for it 😂

The journey passed by in a blur as I just couldn’t tell where I was so gave up and played solitaire……as we neared York, and the day was dawning, I used my gloves to make peep holes in the window to see sparkling frost everywhere……cold yet beautiful 

As I got to York, the sky was beautiful and York looked stunning in the sunshine. 

I was meeting Suki opposite the station so ambled arcross the city, snapping as I went, walking passed the famous Bettys Tea Room…..

Heading towards the river….the sky crying out to be photographed…

Came to the river and one last photo, so still and reflective in the morning light…

Suki was waiting arms open for a hug. We hadn’t seen one another for a while as I’d had to cancel our filming visit to paradise in January when I broke my wrist 🙄….the purpose of todays visit was simply for her to get to know my playmates and tell them about our plan for a feature film that hopefully, would include some of them…….Damian soon arrived with Monica and we headed to the hall.

I could sense as I entered the hall, that this was still going to be a bad day for my head. All the tables and chairs were out and it took me a few seconds to work out how….stood there, trying to piece the jigsaw together, I then caught sight of Anna and her son and the final piece snapped into place. 

Introductions made, Suki settling in and people started to arrive, chatter and laugh….

I was so overwhelmed by peoples kindness. I’d sent each playmate that helped with my book by being interviewed, an early copy. One by one hugs were given and then Keith and his wife produced the most amazing gift that made my eyes leak with joy…..a painting he’d done of my bench in paradise 😍- even Suki recognised it straight away as my special place as that’s where we’re going to do some filming later in the year. 🥰

Other gifts followed – one of Bobs magical poems in a card and then a beautiful sparkly Robin broach from Brenda ……..

Our 30 minutes ‘faffing’ time seemed to be endless today. But gradually Damian brought us to order. There were more newbies there, so lovely to see, for them to join in this ‘specialness’. 

Before I introduced Suki and our plans, Bob read out one of his special poems about being together once more 🥰😢…and my eyes leaked once more….

We separated into groups and I took 6 of the newbies with dementia, just to get to know them. I found out so much about their past lives, the lives they had good and bad…..I just love hearing peoples history……..sadly my head wasn’t at it’s best and I struggled to concentrate and do what I was suppose to. Me thinks I’m just at my best 1-1…..maybe Anna should take that group next time and if there’s a quiet person or one who struggles in a group, maybe I could have a chat with them. One chappie finds group talk difficult and remained silent, but as soon as I went and sat with him, he became animated and told me his story too……..

Then Alan came along to our table to talk about his hand project

His plan is to make a huge banner with all our hands giving messages of different phrases to attract peoples attention about dementia. They’ll hang in the libraries hopefully where people pop in and out and will see it……….

It was at this point that everything started to go downhill….😳….my ipad suddenly told me it was nearly out of battery 🙈 so what happened after this, I havn’t a scooby doo…..🙄…..and I’m writing this the following morning 😵

I do know that me and Suki were photographed signing some documents…..as the photo tells me….

I can also see from my photos that it was Eddys birthday!

and the final one tells me, the lovely Monica serenaded us at some point

We obviously left and went our separate ways…..but that wasn’t the end of my problems though 🤯….having stayed much longer than I normally do, I was running on empty and just wanted to get home…..however, the bus had other plans……firstly the bus was late setting off from York…..AND then proceeded to break down in Pocklington 🤯🤯🤯………we had to wait for it to be mended and I eventually got home at 5.30 by which time I felt like a💀………

Should I have stayed at home that day in the calm?……wouldn’t have missed my playmates for anything…….

My monthly fix with playmates……..

Last Monday was our monthly meeting of Minds and Voices (yes, I know I’m a week late but I forgot to leave space last week and all the days were full 🙄). It was to be my last this year as I’ll miss the Christmas meeting as I’m in paradise…….hard to imagine that I won’t see them all again until next year 😳

I’d woken feeling a little down and could easily have opted out of going. Only I thought of the affect they would have on my mood and talked myself into going.

I’d sat with my cuppa until the very last moment, peered out of the window and there the taxi driver was waiting.

Once I was settled in the back seat we set off, him chatting away, me replying at the appropriate moments. He’d warned me it was a misty murky morning, a bit like my mood.

We reached the Saturday market bandstand, where he dropped me off and I ambled through town to the bus station. When I looked back I hadn’t even taken any photos so must have been down 🙄….

School buses came and went collecting the appropriate children for the appropriate local schools and then the York bus arrived. If it was misty here it was certainly going to be thick over the Wolds. I suddenly thought how nice it would be to walk to York, but me thinks the 20 plus miles might be a tad too much especially when they are no footpaths 🤣…..

The bus had many passengers, all deep in their own morning thoughts. A teacher across from me marking his pupils work, making use of his journey time, then having his breakfast as a reward…..students buried in their phones; the only sound apart from the creaks and groans of the bus, was a young child happily gurgling away and babbling to her mum……

The mum took the place of the teacher opposite me when he got off so the little girl was delighted to be in the front seat. I could hear them better now and turns out they were Spanish. The mum started to make a video to send back home and hadn’t known I could understand Spanish – I did A level at school – and can still understand some. It was lovely to hear and still be able to understand…….

I’m rambling…….🙄……I arrived in York and it looked very Christmassy ……there’s some lovely church towers in York and the one opposite Betty’s is one of them

The bus had been later than usual so I simply ambled through this gorgeous little city, across the river

…….and within minutes of arriving at my pick up spot, Damian arrived with Monica in the car. We sat with Pavarotti playing on the radio…….

Once in the hall people started to arrive,  hugs were shared and the room was filled with laughter and chatter and my mood instantly lifted. ….Sandrea brought me her book to sign as she and her husband Keith are newbies to the group – always nice to have new people with new stories to tell….Keith used to be part of a mountain rescue team and has been to Everest base camp twice . the walks he’s done, I can only dream of……

We weren’t going to have as many this month, thankfully not because of the chaos last month, but other reasons, so hopefully it will be more manageable and enjoyable for everyone……….

Once everyone had arrived Eddie wanted me to take a photo of him presenting something to Damian. Sadly his sister died recently and they buried her last week. Eddy, very emotionally, presented the box to Damian as a contribution to Minds and Voices ❤️

The on a brighter note Damian brought everyone to attention, and highlighted that it was someone’s birthday, it was Sue’s! …….and then Anna brought out the birthday cake and we were all in full song…..

Damian gave a lovely quote – as someone had asked if Minds and Voices is for younger people. Well we range from all ages……….and then Damian said……

When we’re all in the same room we’re all the same age”

Which I thought was so lovely, so appropriate and so true….

Had to take 2 piccies of us all as couldn’t get everyone in 🙄

The care partners then went into their room with some birthday cake and we stayed in our room

We then split into 2 groups to help those hard of hearing, enjoy the conversations more…..we had Chrissie from York Uni first to fill us in about her gardening project which some of the members took part in during her pilot study. She now wants to take it further for a bigger study.

We kept getting sidetracked and going off piste about community differences between town and country….and whether the heating was on 🤣

Christie wondered if Minds and Voices would like to help her with the project in various ways. My response was:

We have very good rates” 🤣 (she is building in payment to Minds and Voices for those interested ) The moment in the piccie is when she opened her box file only to realise she’d brought the wrong paperwork 🤣…I said don’t worry about it we’ll have forgotten by the time we see you next 🤪

Once Christie had survived us we had Alun next who is doing an Arts project. His Art project will focus around “I want to speak” cards…..what we want to say to people……..he will make a banner that will show the public what we want them to hear….

So many interesting conversations. Keith said how talking here makes him think of things he wouldn’t otherwise say – we bounce off each other.

Sparks were certainly flying round our group……with lots of suggestions. It was mainly because we’d split into smaller groups, so people like Monica who is hard of hearing, could hear everything and contributed so much.

Bob then read out his poem called Minds and Voices

Sooooo beautiful, so emotional…….I wanted to put a photo of it on my blog but Bob was aware of a spelling mistake and the teacher in him, knowing how much he would dislike people seeing it, made me take a photo of him reading it instead………

Alun told us of group of nuns in America and after each of their deaths, they’ve been donating their brains and all have found to have extreme dementia but showed no signs during their lives. But it was because of their continual social intereaction, their daily consistent ROUTINE, and a constant ‘doing’ which helped keeped them living normally and almost ‘hide’ their dementia – how amazing is that! It shows what we always say, how consistency and routine and ‘doing’ helps to keep dementia from developing as quickly as it might otherwise. The nuns simply live an extreme type of life that includes those things….

Sadly time for me to go. I must have left later than usual as I was surprised by the time when I got to the bus stop as my usual bus had gone 🙄….but it wasn’t long before the next and I had just a few minutes to get the bit of shopping I needed before the bus to Beverley arrived…..

Now usually this is where my blog may end…..however, when I got to Beverley, I sat and I waited for the village bus…..and waited…….and waited…..another couple were waiting as well so I knew I hadn’t missed it. Half an hour later I decided it wasn’t going to show…🙄…..I looked at my watch and knew my normal taxi people wouldn’t have any free as I’d left it until the school run time 🙈…..I decided to walk into town to see if there were any on the taxi rank, but Murphy’s law was against me so I had no option but to walk home …..

Up through the Westwood…..

I don’t often walk back as it’s all uphill but thankfully I hadn’t had a walk and been sat most of the day…so my legs managed to keep going…..and the unexpected bonus of the day was……well not the bonus I was expecting but a lovely one that helped me along the way……I saw the sun setting…….

Always good to look for the positives in a bad situation…..🥰

Recovery college time……

On Tuesday 7th December 10.30-12.30, me and Cathryn Hart from Humber Trust Research Team will once again deliver our “Living with Dementia” workshop. 

We do these workshops probably twice a year and they’re always well received. Pre the world changing, they were always face to face and we could mingle and chat to people as they came in and then again, when they had a cuppa tea at the break……but we all know how the world has gone on line since the C word began to exist 🙄

So here we are again on zoom…..however, it does mean that anyone can attend instead of those specifically local to the venue. 

Me and Cathryn often chat about ‘winging it’ but what we mean is, we have a basic outline of what we want to say and then judge the content according to the type of people who attend the course…..so we’re very flexible friends…🤣

We never have high numbers on zoom as it gets impersonal, but we do have half a dozen places available if anyone is interested. Preferably those newly diagnosed, or family of those newly diagnosed or healthcare professionals – GP’s would be most welcome! 

To book a place either:

Tel 01482 389124

Email HNF-TR.Recoverycolleg@nhs.net

Or visit their web site – www.humberrecoverycollege.nhs.uk

Or message me on my blog if you have a problem…..☺️

Face to face with Minds and Voices…. 

Well after yesterdays feeling out of my comfort zone, I knew today I’d be right at home as it was my monthly visit to Minds and Voices…….a new couple had emailed me asking if they could come along and I always love meeting new playmates……

It’s that time of year when the mornings are dark. The clocks havn’t gone back yet, so it’ll be getting even darker for longer soon. But it was dark as I got up and showered ready for my 07.25 taxi pick up. I was taking calendars again as I hadn’t taken enough last time. I’m fast running out and don’t think I’ll be ordering any more. I’ve already ordered an extra 100 to the original amount and its them that are now nearing the end. My lovely village shop agreed to start selling them for me last week to make it easier for some villagers to get hold of one. 

I was going through the village Facebook page when I saw this wonderful piccie

The caption read……

The lads thought it might be a nice idea to sleep under the stars in there Yorkshire tea tents with tea bag pillows 😂”

One of the villagers always makes us chuckle as he sets up action men in different situations and I thought this one was priceless…..I even put it on Twitter for Yorkshire Tea to see and they replied saying “They approve” 😂…

Anyway…..I was so snug going through my morning routine that I didn’t leave myself enough time to get my stuff ready. Before I knew it, the txt alert came through to say my taxi was outside 😳….then my tizz started, rushing around getting absolutely  nowhere 🙄…..coat, bag, stick, outside, back inside, mask, back outside, not quite knowing if I was coming or going 🥴….I’m just not used to early morning starts of having ‘to do’……

Dropping me off in Saturday market, I finally had time to amble and take piccies to get me back on track

St Marys Church

The flower boxes near the bus station had been newly planted with winter pansies, one of my favourite simple flowers

I always think they have individual faces. I’ve thought this since a child as I watched the seed pods open and the tiny seeds scatter out ready for new plants the following year

I always think back to those times when I see pansies and always have them in my garden…

Not long to wait before the bus arrived and we were on our way. It was a very misty murky ride over the wolds – I wished the bus windows had been cleaner as it would have made nice photos, but sadly not today…

I suddenly became overwhelmingly tired and needed to close my eyes……I sat there trying to think what that was all about and realised it was the after effects of yesterdays talk suddenly catching up on me……it can be so exhausting having dementia 🙈……

Once in York, I trundled through this ancient city. so many of the churches have unusual towers like this one

Crossing Lendl Bridge, the rowers were either just setting up or just having finished 🤔

I felt a bit ‘not quite with it’ as Damian and Monica picked me up outside the station and needed a few minutes to get back down to planet earth. Damian had calming music playing in the car which was wonderful. 

As we arrived, Anna was already there getting things under way. We were expecting yet more new lovely people, so today, for the first time, we planned to split into people living with dementia group and a supporters group. We’ve never had to do this before and it will seem strange to some. However it will be soooo beneficial for everyone. 

People started to wander in, hugs, kisses and laughter suddenly filled the room…..😍

By the end people had all arrived………we were bigger than we’d EVER been 

It was soooo lovely to meet so many new people….but it was quite overwhelming!!

After the half an hour of faffing we went our separate ways – people living with dementia in one room in a circle where hopefully people could hear better. 

I asked if we could find out about ‘hearing loops’ that you see about in some places. Havn’t a clue what they are but they might be useful for some as it’s a very echoey room…….

And supporters in another room

I actually think we were still too large to make it possible for everyone to hear and feel part of the discussion. We needed two or even 3 groups to allow the quieter ones to feel at home and confident……me thinks we need to get our thinking caps on as to what can be done….a lovely problem to have though!

Our resident friend and artist Alun Kirby came and sat with us…..

We were handed round a leaflet from Older Citizens York, to see what we thought….the only thing we didn’t like was the italics in the speech bubbles – they were too hard to read. Hopefully they’ve asked us BEFORE they’ve gone out….🙄

We then moved onto our research “Living Alone versus Living as a couple”…..we were one of several groups funded by the National Lottery…..we wanted to inform Gp’s and other healthcare professionals what they needed to ask people as both those living alone and those in a relationship have different needs…….our research was received really well by the Lottery people. we just need the same to happen in the medical world….

Alun then told us he is hopubf to do a piece of work with us before he goes to New Zealand……capturing our thoughts on the value of Minds and Voices and what it means to us. Over the last 3 years he’s been writing down when we say something about the value of peer support. From these quotes he’ll create a piece of work that will hopefully be displayed in the library.⭐️

Then we spoke about our course – A Good Life with Dementia course –created and delivered by people living with dementia to those newly diagnosed……. head of Yorks mental health older peoples department has asked for costings for us to run a couple of courses here in York…..which may mean they actually refer people this time…..so that’s brilliant news.

Damian then talked about arranging a jolly to Beverley! Me and Bob helped deliver the Good Life Course to people in East Riding and those people are now meeting regularly just like us, so we thought it’d be a good idea to meet up with them in Beverley. Well that’s fine for me as I’ll be able to walk there!!

It was at this point where there seemed to be a natural break for lunch…..and also time for me to go. The rain falling outside took me by total surprise but the bus soon arrived. Umbrellas were up everywhere, even on the pleasure boats as they passed under the whirlpool bridge

Even I found it difficult today and almost fell asleep on the bus 😳….luckily the windscreen wipers brought me back to the land of the living.

A short wait in Beverley and my village bus pulled in…..cold and tired, I was ready for a cuppa which is just what I did as soon as I got in……..trawling through my emails and trying to catch up on the day, I noticed one email stand out……someone had emailed asking for 10 calendars 😳….and emailed back to check it wasn’t a typo…..but the response came back that yes, if I have them they’d like 10 to send instead of Christmas cards ☺️……how wonderfully generous and kind is that ☺️ and it now means my stocks are diminishing quickly as I’m nearing the end of my last box…..😇

The 4 Amigos ride again…..

We havn’t met for ages I don’t think….we all live such busy lives 🤣 But last Monday we finally managed to get together again

We were there to discuss the value of Peer Support. As you all know I love all my playmates and Minds and Voices. we support one another, laugh with one another and console one another….it’s just that feeling of not being judged, being able to be yourself no matter what sort of day your having, that makes it special……

Anyway, give us a listen and hear what we all had to say…

Our first indoor meeting……

Yesterday saw the first indoor meeting of Minds and Voices…..feels like years since we met indoors! I know we’ve had a couple of picnics outside, but it’s not the same as being cosy round a table with the liquorice all sorts 🤣

My alarm went off at 06.30…first time I’d been up that early for ages. I’d tossed and turned all night with weird dreams once more 🙄……By 7.30, I was more or less ready for the taxi to arrive. The weather people had promised a sunshiney day so I opened the front door to test the temperature to see if I needed a fleece, but then saw my taxi driver wave as he was driving passed to turn round; got distracted, immediately picked up my bag and went out……it wasn’t until we got the the band stand, my drop off point, that I saw others in their fleeces and jackets going for their morning papers 😳….the autumn chill in the air was noticeable as I got out of the taxi 🙄 but the sky looked as if it would deliver the promised sunny day so I wouldn’t be freezing for long 🤣

I walked round and round the bus station to keep warm but within a few rounds the bus arrived and I settled down for the 90 minute journey to York. As we crossed over the Wolds you could see the distinct line in the sky separating the early morning cloud from the promised clear blue

We’re living in such a different world now as the queues and queues of traffic of commuters that used to exist on the journey into York, simply aren’t there any more; the majority have continued to work from home. The hoards of commuters exiting the train station as I arrive no longer there. It feels a bit ghostly, very strange …..are people missing the camaraderie of going to work and seeing their work colleagues face to face? That thinking time on the journey to and from work? A different environment? Or maybe they’re happy with this new world we now live in…..🤔

Damian was picking me up at the station as usual. The bus had gone a different way and was so early because of no commuters that I got off at Stonebow and ambled through the ghostly empty streets, passing by the famous Betty’s Tea room….

Before crossing the river….

Damian picked me up with the lovely Monica sat in the back – playmate Monica always plays the piano at the end of our zoom calls and luckily we have a piano at Lidgett Grove!! Anna was already there and, bruises forgotten, I had my first of many hugs…..

As everyone started to arrive it all got a bit over overwhelming as we all hugged and met some for the first time in reality, it was just wonderful. I really had trouble meeting so many people again for the first time….we had so many new people it was hard to get everyone in the photo! And Damian had to stand in the pulpit to take it 🤣…

Everyone was just sooooo happy to actually BE with one another, to touch and hug one another for the first time in 18 months. It’s the first indoor meeting all of us have been to with so many people present……we all went round the table and introduced ourselves again to one another. Sadly the acoustics in this room are terrible and it’s often hard to hear, even more sad was when Elaine and Monica both told me they hadn’t heard a thing😔…we’ll have to try and sort that…

We watched a video about nutrition made by local man Big Ian who raises money in the York area. It also had our Charlie in it 😍 “food is more than food”……

Food made with love feels a thing of the past for me. Not feeling hunger just takes away the pleasure it used to bring, but for others it’s sooo important, a social event with lots of memories. 

We then watched a video I put on Twitter that morning. Each morning I’ve signed up to get an email from “Good News Only’…I always find something that makes me smile and this made me smile ….history of dance from 1920’s to now

It brought back so many memories” said Eddy

Wonderful….as playmates and partners alike were mesmerised….

Damian then spoiled the tone 😂🤣….by bringing us up to date about the Dementia Collaboration and the York Dementia Strategy. We’ve told them all along to keep it simple yet months later they’re still talking rubbish and making the strategy too convoluted and gobbledegook…..

What part of simple do they not understand” said Eric

I said, We’ve provided the skeleton in the strategy we wrote ourselves, the meat simply needs a couple more sentences……🙈 we included everything WE believe WE need…yet it’s too simple for them even though it’s meant to be for us 🙄

We’ve been going round in circles for what feels like years and we’re still plodding round….

Anna is now also a Social Prescriber in York. They’re spread around the GP surgeries to support people to find places like Minds and Voices or other support they may need. That’s why we have new members. But they’re very new posts, Anna knows exactly what she’s doing, has the right personality and knowledge, so those people are lucky, I can’t imagine them all to be like Anna though….. Eddy’s wife said she was asked over the phone:

What can I do for you?”

As she said, she didn’t know what they did so how could she answer 🙄. Maybe the right approach should be, ” I wonder if I could come and meet you and your husband and have a chat as I may be able to help you”

I then was able to talk about my calendar and the story of how it came about…….During lockdown I needed something to be my new routine, I was at a loss……so I bought a camera and everyday I went out round my village and took photographs. I adore nature and simply ‘looking’ at what’s around me……I then found my village Facebook page and started to post my photos on there each day, initially for those isolating, to see what was happening in the village. But then other people started to give me such lovely messages of appreciation that I’ve done it ever since. During lockdown a couple of the villagers said it’d be a good idea for me to do a calendar and that’s now come to fruition amazingly. I never thought I’d be able to sort it but luckily I found a printer in the village and he was marvellous.. 

I’d only taken 4 to sell as I didn’t think anyone would want one. Colin and Barbara, Bob and Sue had both ordered one, so I knew 2 were taken but lots of them wanted one so I ran out and will take more next month hopefully.

More of how you can buy one tomorrow.

After that it seemed like a natural break as people began chatting to the people next to them, so that was my queue to leave and catch my bus home. They would have lunch but the bus times means I have to leave at midday…….

Waiting at the bus stop I mulled over the morning. Cold when I left, warm and sunny now. It had been so amazing to ‘see’ everyone in person instead of on a little square screen on my tablet . Yes I’d found it overwhelming, the noise of the chatter, laughter and excitement, after all I’m used to being alone in silence in my own little world…… I was probably a nightmare now I think about it, as I’m always so happy when I see people, so probably talked all the time🙄, no matter what my mood might be prior to that, or how I’m feeling. I’m the same with my daughters, I can feel rubbish, but in their presence I come alive and then crash again when they’ve left….

…….but would I have missed it? ……..absolutely not….. yes my head was exploding with the stimulation of the morning, I felt totally exhausted from all the effort and energy expelled simply though the excitement of it all…..but it was also filled to the brim with love for my playmates from Minds and Voices……..and as I ambled through this lovely city, alive once more after the morning emptiness, just time for one last photo….