Category Archives: Peer Support

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….

My first face to face with playmates at Minds and Voices…….

I was away in paradise for the very first face to face get together of our group, so yesterday was my first time. We were also meeting in a different place, outside in Homestead Park, York. So I knew it would be an interesting experience. I’d been to the park when I lived in York, so it wasn’t totally new thank goodness.

Even though we don’t meet until 11am, it means an all day outing for me, due to bus times etc and Minds and Voices are probably the only people I’d do that for…I’d had to look up times of buses and at first booked my taxi for the wrong time having misread the line on the timetable – all the numbers jumbling together now. But once I’d put a ruler under the line I wanted, I finally found the right time. My taxi was due to pick me up at 07.30. 

Damian was picking me up from the station at 09.45 and since it was holiday time, I wasn’t expecting my bus to be delayed in heavy school traffic.

Anyway, the taxi picked me up on time and dropped me off in Beverley by the bandstand

It was a lovely sunny day as I passed by our infamous cream telephone boxes. We’re the only region to have cream instead of BT red as our services are run by Kcom instead of British telecom. It’s a real monopoly really as its so difficult to get a choice of phone and broadband companies.

St Mary’s church lay snuggled at the end of the side street as I headed for the bus station

The bus was on time and we headed off to York, passing by the Westwood as the town cows sauntered along the footpath by the racecourse. 

Up and over the Wolds, the perfect place for wind turbines on the horizon

I’m use to taking my camera everywhere so had that hanging round my neck, only to realise I didn’t actually need it as I had my ipad today to type away during our get together.🙄

90 mins later I was in York. It was such a different York than pre Covid. It was 09.30 and usually there’d be lots of suited crowds of people walking to work, but I suspect many are still working from home….the museum gardens was all chained up and locked ( I usually amble round there and take photos😳). I realised later, when I was walking back that they didn’t open until 10 now. I passed lots of empty shop windows and quiet streets….just not the York I know. Even the river was quiet ….

Anyway Damian picked me up and we went to Homestead Park where Anna and her girls were all waiting. We emptied the cars of chairs and food and set up ourselves near the tea shop….Anna waited with the stuff and me and Damian headed back to the car park to meet people. I then took them to Anna before going back for the next arrivals. So I got to say hello to everyone!

I took one of the new playmates arm to where we were sat and he was obviously having a pickle of a day. He was very quiet until I said I have dementia too, ‘we’ll be in a pickle together’ and he stopped….smiled….and said, “You have it too?” I nodded and suddenly he was so animated and alive – that’s what playmates can do for one another…❤️…..talking to others makes you realise you’re not alone…

Eventually we were all there. Sooooo many new faces as well as old friends. The benefit of Anna being a social prescriber is we get to meet new playmates. We were lucky with the weather, so it’ll be nice when we find a new indoor home. Although meeting outside has its advantages, like people can just chat to each other, it’s also nice to meet inside so the quiet ones can be more involved. A big open space can sometimes feel a tad more intimidating than a cosy room. But,as I said, the sun was shing so we were lucky.

Elaine and Eric were on top form…

Rob and Linda came with Clay the Labrador who got lots of fuss made of him…

People sat and chatted to whoever was next to them. 

Clay looked flagged out after all the fuss….. 🤣

I sat next to Robin and June (I think 🙄) and June told me how they’d seen me talk at Market Weighton….they were now living in York and only a few minutes walk from this lovely park

I had to leave early to walk back into town and get my bus. But I had to get a group photo or ten before we left and I was actually in this one as Anna’s daughters kindly offered to take one 😍

It was strange ‘being’ with everyone, having hugs, seeing everyone standing and in real life. Strange but lovely. Meeting old friends and making new. One last photo before I left…

And as I reached the city it had come to life. Tourists everywhere, the open top tourist buses full and the Museum gardens busy……..and even the river looked busier….maybe York just wakes a little later nowadays……..

Our fundraising page is still open should anyone who hasn’t already contributed fancies donating a pound or two….it meant so much to everyone today to be able to meet but we now need to find an indoor venue before the winter …..

https://www.justgiving.com/crowdfunding/mindsandvoices-york

“We believed we could…and we did!”

Dementia Enquirers……to show what we can do…

So it’s the start of Dementia Awareness Week. I’ve never been particularly keen on this as for those of us affected by dementia it’s with us every day of the year and never goes away. So to spotlight it one week a year seems a tad patronising to me, but hey ho, it gets people talking again I suppose. 

Innovations in Dementia were given funds from The National Lottery Community fund to set up Dementia Enquirers, a new approach to research that is led and controlled by people living with dementia.The lovely cartoonist Tony Husband came up with our image

The reason for the image, is that ‘leading’ the research doesn’t necessarily mean being behind the wheel. Every component of a car helps you get from A to B. Someone maybe the headlights, coming up with the direction, the ideas we take, others the wheels making sure it happens, down to the nuts and bolts holding it all together – every component vital. Even the professional lead researchers delegate work to be done by others and we were no different.

The difference in our research was that WE chose the subjects that WE thought were important. WE decided how to go about it. WE invited others through our door to support and help.


We believed we could…and we did!” 

The projects are:  

  • Thred, Liverpool: How can urban and rural transport systems help people diagnosed with dementia live independently for longer?
  • Minds and Voices, York: The pros and cons and particular needs of those living alone with dementia and those living with a care partner
  • Beth Johnson Foundation, Stoke on Trent: Does class, ethnicity or intellect affect the dementia pathway?
  • Riversiders in Shrewsbury (with Minds and Voices, York): an enquiry into the what DEEP and Admiral Nurses know about each other
  • Our Voice Matters, Hartlepool: An enquiry into the benefits of groups for people with dementia
  • DEEPNess, Isle of Lewis: The necessary components of a dementia-responsive teaching video
  • EDUCATE, Stockport: The EDUCATE Echo project

We came together last week via zoom to celebrate the launch of our reports – the findings from all our hard work over the last couple of years. We had the challenges of Covid, but we overcame them and continued adapting as we always do.

Now obviously I’m biased because our group in York, Minds and Voices was one of these groups and you can read our interesting findings and advice for professionals as a result on the link below 

But obviously ALL the groups looked into some really interesting subjects and the rest can be found here:

As we said at the beginning:

We believed we could…and we did!” 

A NEW Course and a Long Shot…..

So I know this is a long shot, but I thought I might as well try, nothing to lose…..

We’ve been trying for ever and a day to get more support for people with dementia in my own county, East Yorkshire, especially for those diagnosed in the last few years.  Well finally we’re putting on a course the same as we did at Minds and Voices across the border in York, a ‘Good Life with Dementia”. 

Obviously due to Covid, it can’t be in person bit we’ll be running the 7 week course via Zoom starting in March, with the hope of the attendees forming their own group at the end of it. 

Because I live their I can be one of the Tutors along with Bob and  along with playmates Bob and Ahmad and our trust enabler Damian. 

Once again, we need to find the participants. We’re hoping the Memory Service will help us, and the local Research team who we all know. But sometimes this just doesn’t work, especially in these strange times where face to face consultations aren’t happening.

So this is where my blog comes in. If only 1 person sees this and lives in my area it would be wonderful or if anyone knows anyone that they could send it to, that would also be wonderful. But they must live in my area as the East Riding is funding it.

Just like at Minds and Voices, we’ll be talking about emotional and practical support, relationships, research and any other topics the attendees wish to bring up. 

I know I sooo wish I’d had something like this when I was diagnosed, so I just hope people are brave enough to come forward. Their Carers are welcome too, although primarily it is for the person with dementia, but their supporters would learn an awful lot just by listening.

So here’s the flyer that’s been put together. As I said I know it’s a long shot but fingers crossed it reaches someone who needs help and who better to talk and listen to than people in the same boat as them…..peer support at its finest

A New Website for and by people with dementia…..

I’m so delighted that our website has finally come to fruition. We’ve been working on it through the whole of lockdown and yesterday it became live……it’s aimed at people living with dementia to either contribute tips and strategies of their own – solutions to problems that dementia has thrown at them, but also for others to look at what others have done in the same situation. Please take a look….there are contributions from many playmates.

HUGE thanks to our able enabler Philly Hare for making this possible 😍 Here was the gumf release yesterday from Innovations in Dementia….

We are delighted to be launching “Tip-Share” on Monday 7 December 2020. The link is  www.dementiatip-share.org.uk

This new website offers people with dementia an easy way to source and share Tips that will help them in their everyday lives – especially (but not only) in the time of the pandemic. All the Tips are contributed by people with dementia. The project demonstrates their resilience, wisdom and adaptability in coming up with their own strategies to ‘outmaneuver dementia’.

The Tip-Share project was made possible through uplift funding from the National Lottery Community Fund for projects during the pandemic.

We already haveover 600 Tips, which cover 9 themes: 

The coronavirus situation

Life at home

Life outside home

Emotional and family life

Friendships and peer support

Connecting and communicating

Money and legal matters

Health issues and symptoms

Work paid and unpaid

With the help of our advisors, George Rook and Dr Wendy Mitchell (both living with dementia), we have worked very hard to ensure that the new website is as accessible as it can possibly be for people with dementia.

They can look though the Tips, send in their own, and even request new Tips on issues they are grappling with. We hope that helplines, dementia workers, friends and families will publicise the website so that the people they support know about it.

For further information contact philly@myid.org.uk

Minds and Voices talk to Gp’s

It’s not often you get a chance to speak to 200 Gp’s all at once…..but Minds and Voices had a captive audience last week of Gp’s from the Vale of York area. 

Every month they have a training session and last weeks was on Dementia. A lovely person from the Clinical Commisioning Group, whose name has left me, invited Minds and Voices to create a 20 minute video highlighting our experience of Gp’s since we were diagnosed with dementia.  

Nikki Gerard (author and founder of John’s Campaign) would be speaking about the cruel situation in Care Homes during Covid after us.

Me and my playmates all acknowledged the stress and huge workload Gp’s face, but none of us had had a positive experience in the beginning, the very time we need it…

We were told afterwards, how over 200 Gp’s had been spell bound by our video and also quite shocked at the content. Some vowed to make changes at their surgery, others thanked us for our honesty.

My particular Gp practise is outside the Vale of York area, so the woman who’d invited us, promised to send it onto East Riding and Hull CCG’s for them to cascade to their Gp’s, meaning hopefully, my Gp will hear my comments about the current phone only situation…..😍

Anyway, see what you think by watching the video for yourselves…..

A Trundle and a half……Poem

So there’s trundles and there’s trundles

But this weeks broke the mould

Setting off for my 10 mile hike

Some thought I was quite bold

 

But a good cause was pushing me

Forcing my every step

It was of course my playmates

To Minds and Voices , I am in debt

 

My playmates all around the country

All around the world

I owe so much to so many

Because of them my life unfurled….

 

You see, our peers just know

What our lives are really like

It’s so comforting to hear

“Oh I did that!” When dementia strikes

 

So I started off at Appletrees

And headed for the Lake

Past landmarks of sheer beauty

In my paradise of Keswick

To all my playmates who show each other we ‘still can’ – thank you 🙏

You can hear me reading this on Dementia Diaries…..Click on the link below

https://dementiadiaries.org/entry/16079/wendy-reads-a-poem-about-her-enormous-hike-in-support-of-minds-and-voices

 

There could only be one song to go with my walk……

Knit a row purl a row……..Poem

Knit a row purl a row
Clicketty clack…..
Scrawling on my note pad
1,2,3, keeping track…

The squares growing before me
Change of colour needed
In silence I beaver away
So to knit away unheeded

This old hobby relearnt
To challenge my brain
With help from my playmates
From a video to explain

A DEEP Hug blanket
Is our challenge to create
Each square simply showing
My love for my playmates…..


In case you can’t read it it says “Minds and Voices’, the name of my support group in York….

Wonder if you can guess what todays song is……..