Day 2 in London – Dementia Enquirers….

It was a night of sleep, wake, sleep, wake….my eyelids firmly closed in exhaustion from the day but my eyeballs wide awake and staring into blackness…..we’d had a lovely meal the night before, a meal of sharing wonderful stories, sadness, laughter and everything in between …can’t believe I didn’t take a piccie!

My eyelids finally secummbed to the mischievous eyeballs behind them and opened for the day. Showered, I settled down with a cuppa to go through my morning routine – solitaire, scrabble and my new found friend ‘Wordscapes’….just as an extra when my friends have yet to take their turn at scrabble…..

Philly knocked for me at 8 and we went down for breakfast before the start of another heavy day…..but at least my head felt better…even without sleep……🙄…(that’s dementia for you – just no telling from one day to the next)

Over breakfast we had a wonderfully emotional and passionate discussion about Personal Independence Payments (PIP) as I have my next onslaught starting into the system on Monday. The distress and emotional turmoil this is causing for people is beyond comprehension so we decided we need to do something…..Philly wished she taped that conversation as it was so off the cuff so filled with detail from each of us……..

Packed and ready, we met in reception and trundled to our venue for the day…the same lovely one as yesterday…….

Today it was the Pioneers meeting. We sat chatting while we waited for Mhari and Hugh…….we were in a different room today, a smaller one. It was Georges first meeting as a Pioneer and Mhari and Hugh had travelled just for the day.

I asked for a piccie while we were all relatively fresh

Philly started off telling us the plan for the day ..and then briefly spoke about yesterday and the ethics of research and what we might do differently. We will come up with a simple ethical framework to share with the next lot of grants and ask them how they’re meeting our ethical framework…..

We sat and discussed the make up of the panel and agreed we need an academic to sit and advise us but with no vote….someone with expertise in their field who would be happy and understand their role as an advisor ……

We, as pioneers, all volunteered to be on the panel and discussed which academics we trusted to work in the way we needed and who we thought might be prepared to work our way……

We’ll combine ethics and decision making for the next lot of applications for research from people with dementia at our Pioneers in our Woodbrooke meeting in June…

We decided we would call ourselves DEEP Ethics Panel…..this is the start of a much bigger piece of work which will inform the more formal ethics committees and hopefully change and question current processes…….

We stopped for a cuppa and cookie……and moved on from ethics to the 10 new projects that will get funding in June.  Groups of people with dementia from the DEEP Network, deciding what they want to research and applying for a grant.

Today we wanted to discuss the process we had last year and what might needed changing after the lessons learnt from the past year….not that we could remember, but that’s why our ‘able enablers’ are there…..😂

We had 10 decisions to make….so Philly had to keep us on track and crack her famous whip 😂🤣

We went through the list of ideas of what it means to be ‘in the driving seat’ of a research project….the guidelines we expect groups to follow when conducting research while realising that everyone’s contribution could be at different levels of ability…..

Much conversation took place around emotional decisions and factual decisions

We had a quick break then the final session before lunch. We came back and Philly asked me to read my blog about yesterday….which was as much a surprise to me as everyone else!

Philly then fed back how they’d received the numerous emails from the ally academics who attended the first day. They were all full of passion, full of enthusiasm and hope for what we were doing….we know some academics would want to be involved for the wrong reasons, but those allies seemed to get it in my opinion. We all have our different opinions….

We had offers of support from them….many academics find the ethics process difficult and someone suggested finding out from researchers themselves what they find difficult that may help us in our campaign to change the process..and highlight the changes needed.

Before lunch the final item was around an idea from Pachael and Philly about using money still available on a project on Power and Control and what barriers exist from us having control over our lives……we came up with loads of ideas…..lots of food for thought……

Which brought us nicely to lunch in the café…….and me and Rachael had a lovely Celeriac and mushroom soup and warm bread….🤗 hug in a bowl……

We were the only ones in the café….a lovely café with lovely people serving lovely food……a great find of a venue….and they had pictures on the wall, some of them depicting the music of The Beatles…

 

We made out way back for our last hour  before the end of the day…..

For the Funders, the National Lottery, we have to write an ‘engagement plan’ ….who we want to engage with and influence as the National Lottery want to help us…….we obviously want to engage with academic researchers, engage with Universities, with conferences where we can influence a change in views…..

The last idea was around an article for a journal…..Disability and Society journal….

Our final discussion was around the Event in May to celebrate the completion of the first lot of projects…..each of the 10 groups are invited to share their successes and challenges….and hopefully the funders will be there….

I said we needed to end the whole session by having everyone leave with people saying…..”WOW! What’s next??????”

Our last task was to record a sentence about how we feel Dementia Enquirers is going and I said:

“The seed that was sown over a year ago, is now growing into a youngster and you can see the adult developing and gaining character. I’m leaving this last 2 days exhausted, but once again full of renewed enthusiasm for what’s still to come….”

 As Agnes said “My tired is even tired….But it’s nice to feel tired and have achieved something…..”  And off we went our different ways home………the days a blur already…..

 

 

Another trundle back down to London….

A busy week travelling this week so yesterday was another trundle down to London but this time for 2 days…..

It was going to be 2 days of full on Dementia Enquirers with the first day taken up by an Ethics discussion – the issues for people with dementia and ethics committees, the barriers we face and possible solutions…..

The second day would be a meeting of the Pioneers – agreeing a process for the next lot of grant applications…..so 2 heavy but fun packed days with playmates, and our able enablers, Rachael and Philly.

Anyway before the start I had to get there…..a silly o’clock start again as I’d decided against staying the night before due to being in York and I prefer travelling on the day and staying just one night. I’m also not keen on travelling at night, which is what I would have had to do on this occasion. I find travelling in the dark disorientating but in the morning, it eventually gets light which makes it more possible.

The taxi people had asked me the night before if I could be ready 5 minutes earlier so at 05.40 this morning I was ready and waiting with my suitcase and the taxi lights appeared. It’s often a quiet trundle at that time in a morning as neither of us are quite awake. It was all going fine until we got to the station, then I realised why they’d asked to pick me up early ….because he had another run for the same train straight after. He started to rush me and rushing me never works. I hadn’t been organised so didn’t have my money ready, so fumbled about dropping coins and getting in a pickle 🙈…I don’t really know how much I gave him and then must have dropped my glove when getting out as I realised I had one cold hand as I stood on the platform trying to get myself back to normal 🙄…..I’m fine as long as people give me time…….but, of course, when others are in a hurry, they forget that…..

The train was on time, I got my cuppa weak black tea and everything was ok in the world again……it was a very busy train though and agitated passengers trying to find seats and arguing with staff made for a stressful journey on an already discombobulated day…..I didn’t feel right, so instead I tried to disappear into my own world and look out of the window …

Soon the daytime appeared making it a much friendlier world….

I got to London in plenty of time to find this new venue….so went for an amble first …..and ended up leaving my stick somewhere 🙈….I’d had my suitcase to balance on so hadn’t noticed until I went to swap hands…so I had to retrace where I thought I’d been. Turns out I had left it in a shop but they’d taken it to lost property 😳…so then had to find Lost Property, then they wanted ID, and to fill out a form 🤯🤯🤯🤯🤯🤯 but they saw my lanyard and decided I wasn’t a risk and let me have my stick back🙏🙄

Because of the stick panic, I was then in a bit of a pickle about being late and ended up getting lost🙈 and Google took me through a housing estate🤪😱…….went the wrong way …but then I spied a sign on a building in the distance – Lumen, my destination. Playmates were there so much appreciated hugs were given all around…..I went outside into the courtyard just to settle my head…

We finallly started and Rachael and Agnes were chairing the day. We went round and introduced ourselves. Today we had many people there, including playmates and academics who had been invited to help us, from a variety of Universities…..

Rachael whizzed through quickly saying what Dementia Enquirers is – people with dementia leading reasearch from the front on subjects WE think important to research. Along the way it’s hoped that people with dementia will learn new skills, such as around ethics today…..

Dory introduced the ‘Jargon Jar’ to emphasise the need to use plain English otherwise you have to pay a fine. I said “or you can write us a cheque at the end’….🙄😂

There’s a barrier around ethics approvals for our projects – do we need ethics approval? And if we do then there are so many barriers to achieving this. But can we create a new system that’s quicker, a more urgent way.

Tom Shakespeare said the problems are that the ethical process is difficult and complex for the professionals so for those with cognitive difficulties it’s even more complex.

Publications will ask where did we get ethical approval…..or won’t publish, so that’s another barrier in having our work taken seriously.

The Pioneers then spoke about the issues ……mine was:

“If we can influence ethics committees to see our ability differently – to see our un- vulnerability as they are always trying to protect us.It will dispel myths around our capabilities”

 We want to create our own system, our own ethics process….”The University of the Dementia World” as Agnes said. But as Tom said, we still have to follow certain laws.

 The academics then responded. Someone said there’s a cultural problem as even Junior Researchers have problems when needing extra support and help.

If we create our own ethics process, will it be considered as something to take seriously?

“The more noise we can make about being disempowered, the better”…….said academic Lucy.

There were disagreements and voices raised in the room, but we all have respect for one another and could listen to each other’s opinions. We were hearing the frustrations in peoples voices about some of the current systems. I started to get confused as to why we were here and getting a bit discombobulated but think that was just me and my brain on the day…..

We finished off before lunch with what we need to consider to set up our own ethics committee …..working in pairs, one person with dementia, one academic. I was working with Tracey from Worcester Uni. I found this head blowing just to understand what I had to do…….the conversations going on around me made my head buzz. Took me a while to simply understand what I had to do and Philly came along to help and then Tracey tried to help and eventually I could do enough to contribute, but not to my usual standard…..just not a good day for me…Tracey drew the short straw getting me today! 🤪….

Philly went through  all the post its trying to gain a consensus….no easy task!

More discussion followed….on what this process, committee would look like, building trust between people with dementia and academics…but it was time for lunch and a head break…….

After a lovely lunch where the chatter continued……Agnes started off the afternoon to help us create an ethical approval process with people with dementia leading…..

 We had to list step by step what would need to be in place……again Tracey drew the short straw and had me….🙄……but we managed to get through it before the discussion took place.  But in between Agnes did a wonderful relaxation 5 minutes….and then we continued with the last hour….we each fed back what we’d come up with which put altogether was very comprehensive…..Dory’s group got a brownie point for suggesting a 15 minute video to play each time to help us remember what we’re doing and how.

someone said, at the end…”it would have taken others many months and many more meetings to achieve what we achieved today” but they have one thing we don’t…..time…..

There were lots of different opinions in the room and Agnes and Rachael chaired amazingly …….but as Agnes said

“We rise above our differences to get an outcome” ……..a good way to finish an intense but good day…….and all I wanted was my hotel room and silence…….

 

A windy trundle to York….

So after Mondays venture to London, yesterday it was the turn of somewhere more local, York. Anna Harrison, Dementia Action Coordinator in York and able enabler at Minds and Voices, had asked if any of us would be willing to attend a meeting of the York Dementia Acton Alliance Steering group. Well normally I’ll leave this to local playmates, but numbers of those available seemed low, so I agreed to tag along. No one with dementia was on the Steering group so we had to put that right and Anna made this possible…

After yesterdays travel escapades, I wasn’t sure whether bus or train was going the be the right mode of transport. The bus over the Wolds in windy weather is a bit of a wild ride, yet the trains to York the day before had been cancelled 🙄…….so I looked at all the timings and decided to gon on the first village bus which would get me into town to see if buses were running and if not, I still had time to trundle to the railway station to see if the trains were riunning…..🤦‍♀️…things we have to do when we rely on public transport…….I knew I’d have to rely on a train back as the buses are awkward after 2pm to get back to the village…….🙈

Anyway, the village bus pulled into the bus station at the same time as the York bus was arriving, so that made my mind up…..although the bus driver asking if everyone had brought their sea sickness pills wasn’t reassuring…but very funny…😂🤣

We hadn’t been out of town long when the bus was being buffetted around in the wind…maybe it hadn’t been one of my best ideas to sit upstairs but that’s where the best views are!….but at least it was a sunny day as we passed the racecourse…..

I began to see what the driver meant about sea sickness pills…….as sitting still in your seat wasn’t an option…..we passed the usual sights of the llamas in the field, munching away at the grass with their winter coats keeping them snug, the windmills having no problem generating power today as they spun round like the clappers, the flooded farm land after all the storms of late and tractors going about their business no matter what the weather…..

90 minutes later we arrived in York, shaken built not stirred ready and noticed the rain that had started was now falling as snow 😳 with the 2 foreign tourists going wild with excitement ….hopefully just a passing shower….because I had time to spare, I stayed on the bus until the station and then trundled to the warmth of the library, the affect on river levels of the recent storms very much in evidence…..

The meeting was all about the current situation in York around services for people with dementia and the way forward so really important. Often at these meetings you find many don’t turn up, but Anna had had so much interest that we’d been moved from a small room into the main hall, which sounded really promising…..Anna had txt me in the morning to see if I needed any support but I knew this venue well in Priory Street – very dementia appropriate venue…

After warming up in the library, I trundled my way through town passing the river on the other side, with the famous riverside pub once more deluged by the Ouse ….and the whirlpool I mention in my book clearly in view….

I arrived at Priory Street to find playmates had made it!!! After hugs, a cuppa and lunch…..we started chatting while we were waiting for the last 2 to arrive. The issue cropped up of those in couples –  “What happens to the person with dementia when the partner goes into hospital…?” Something that’s often not thought of until the problem arises…………the emotion both men showed when talking about this was intense. Eddy showing the guilt he felt as someone living with dementia, and Eric from the point of view of the care partner. The emotion welling up in both these men as they spoke about the pressures of living as a couple when affected by dementia.

Playmates Eddy, Elaine and me with Elaines hubby, Eric

Anna and a few other were there. Also there was a blast from the past, Emily Abbott, who used to be our ‘able enabler’ at Minds and Voices when I first joined…….she now works at Health watch……but lovely to see her and have a hug…..Damian was also there, so just like old times …❤️…..I always remember feeling very sad when Emily left us….

Once 2pm arrived, Steven Burkeman, chair for the day, started off. We all introduced ourselves. There were people from York Hospital, Joseph Rowntree, the Council, ‘Well Being’ service, a Commisoner for Services, Dementia Forward, Solicitors, and of course, Dementia Action Alliance.

I was able to ask if people minded if I blogged and if I took photos. The formalities of the minutes from the last meeting were gone through first……

Cognitive Screening Resources was up next – the tests the medical staff have when looking at the possibility of dementia…….Sonia from the hospital asked some people present to name as many animals as possible, (something we’re often asked to do)showing the stress this can cause when timed…….I always find that hard. The average is 25, but 11 is also acceptable. Sadly mine is always less.  What is normal one day might not be somebody’s normal on another day……So imagine doing the test in hospital, a stressful environment already and you can see the problem.

She then showed the new sensible way to measure confusion – showing whether the confusion is different from their normal state. So they’re actually looking for delirium……

Some are now realising that the usual tests of knowing the date, remembering an address and the normal memory stuff is not a good way to recognise dementia….we spoke of the futile tests we have to do…..the question ‘Who is the prime minister?’ …if you’ve never been into politics, why would you suddenly start taking an interest and know……….?

Anna brought us up to date on the latest stuff from DAA. The local fire brigade are keen to promote their home assessment for people with dementia. York now has link workers who socially prescribe ….and for dementia, social prescribing is key and maybe they could promote Minds and Voices….🤔

The commissioner from the NHS was up next talking about the Strategy for Dementia in the Vale of York. York is the 7^th lowest in the country for diagnosis rates…..😔….

The expected number of people with dementia in the Vale of York is around 4.5 thousand yet there’s only around 2500 people diagnosed according to the numbers. There’s a lack of understanding around the value of being diagnosed. Gp’s themselves don’t understand the benefits of diagnosing….the criticism by GPs against York is for not having a clear pathway when they diagnose so they’re now working on a Strategy but not a new strategy as the money isn’t there. So instead they’ll look at what they already have and utilise the good bits to find out what’s needed and what’s missing. We went round the table to give 1 sentence from each person on what should be a priority….

My one sentence became a few items…..Not a timely diagnosis but an accurate one, not just setting targets for diagnosis…….  not being abandoned at diagnosis…..when we get the diagnosis our family get the diagnosis too. Making it known what is out there – we don’t know what we don’t know. There can be a million good services out there but if people diagnosed don’t know where to start or where to look, then those services are wasted.

Many good sentences came out of that one bit of the meeting to inform Sheila from the NHS Commisioning body…….

Sheila then said that she was organising a gathering of 250 GPs focusing on dementia….and we all immediately came to life and said, ‘Let us at ‘em…”😂🤣

Anna and Lissa from the DAA then spoke about a mapping exercise day, where what is available is mapped, and evaluating what’s out there and where the gaps are. I suggested each service providing data on numbers and success data etc ……

Carl was the next on the agenda….firstly talking about an app called House of Memories for people with dementia. Objects or photos from the past  can initiate conversation with people with dementia. It’s currently been used in Liverpool and is coming to York in April to be made available in December …..

Carl then went onto Age Friendly York, a worldwide initiative through the World Health Organisation. Then ‘Your Time’ from a leisure persspective and how easy it is to access those activities.  What’s the experience of those moving from work to retirement and the issues……..so really ‘Age Friendly York’ should be ‘Friendly York’ as Steven said……

Anna finished off with the Blue Badge Issues in York for people with dementia…..only people with severe dementia are the ones likely to get it……so more action will be taken…..I spoke about the Post Code Lottery that exists once more as some areas interpret the guidelines more realistically than other – York being a poor area.

It was an exhausting meeting as soooo much came out of it and Sheila from the Commisioners actually said it had been the best meeting she’d attended in ages….so now lets see actions come as a result of all the good words spoken for the people of York…..as Anna said on a txt to me this morning…..

“ It feels like a turning point in changing hearts and minds..”

Let’s hope so…..the passion to change was certainly in abundance today…..

 

The Joy of a Village Bus Trundle……..

Last Monday I woke not wanting ‘to do’….my calendar was empty and I would normally just take a trundle into town in the morning for something to do….but this quiet slow period has left me in the hands of dementia and not ‘doing’ that morning seemed a wonderful option. Someone suggested yesterday it was just the January blues…..it really isn’t. I know how debilitating depression is and the need to get help, not that help is easily found 🙄 I know the feeling of the black cloud hanging over you and how hard it is to lift yourself into life again and not something I would wish on anyone…it creates a different need to the one I’m feeling…

But this is a sense of getting slower….and slower ….and slower…not in the body but in the brain, as dementia takes up more space due to lack of a specific kind of stimulation I need….the glue becoming thicker creating less incentive ‘to do’…..

I didn’t even follow my own routine of going downstairs, after my shower, to watch Breakfast TV 😳….instead, I took my flask upstairs, snuggled after my shower and watched it on my iPad….really not like me….

I knew this was wrong and bad for me even though the weather outside was cold, windy and grey.. I knew I had to force myself to put up a fight…..

The first village bus now leaves at 09.50 from the bottom of my road. Since the timetables changed it’s affected many villagers lives. They only run every 90 minutes now, so we have a longer wait to return. It’s messed up Gp and hospital appointments for many and catching connecting buses. For some villagers it’s their lifeline to the outside world. I’ve called it “The NHS on Wheels’ in previous blogs. For some, it’s the only time they see people, it’s the only time they have conversation, it’s the only time they share laughter and sadness. So it really is more than a means to get from A to B.

Anyway, back to last Monday. I knew I needed to force myself out ‘to do’..I didn’t need anything from town, which made it harder, especially the thought of 90 minutes just wandering aimlessly around until the bus back, but then I saw a piccie on Facebook.

It featured Beverley Beck, a walk the other end of town, I’d done many years ago, up along the old Beck and back down the other side. So that stirred my glued up brain into action.

I’m so glad I did, not for the trundle to the other side of town, but for the conversation that took place on the bus….

Before the bus had even arrived I shared a chuckle at the bus stop with someone. When the bus came we climbed on board and at the end stop in the village other usual travellers boarded too. All with cheery hellos and happy chatter.

It was then one started talking about childhood toys which they still had. Back to a time when  Kapok, the material now used to stuff toys, didn’t exist. Instead they chatted about grandmas making stuffed handmade toys with old stockings, and others spoke of the sawdust and straw inside theirs. They all spoke of how they keep them in a prominent position, much to the displeasure of family, who see them as tatty old relics that need binning. Their faces lit up at the memories of receiving them, of how they’ve always been there for a cuddle when no one else was, how they believe, when they’re dead and buried, how family will immediately discard them. But for now, they’re going nowhere.

They’re faces, so animated, staring with a sparkle in their eyes and reliving the past in that short trundle made their day. It made mine too as I shared mine with them..there’s not much I like to remember from the past, but if someone moved Ted from my chest of drawers, it would be like taking away that chink of happiness….

I did go for my trundle down to the Beck. It was like stepping through time and ghosts of a busy port of Beverley some 800 years ago kept me company.

An information board detailed the story of the once thriving medieval port of Beverley. The only barge barge now left being the ‘Syton’, looked after by the Beverley Barge Preservation Society…….

……..along with it’s own history.

Once serving the town Tannery which disappeared in the 70’s, this once busy strip of water became deserted. Enthusiasts restored this former working barge and it now rests peacefully alone on the Beck with only a passing duck for company…

it passed the time perfectly, and even though the weather was anything but inviting, it was a nice trundle……

 

P.s…….The driver we had on Monday retired last year, but missed the conversation and the driving of his village bus so much that he came out of retirement and is now back driving our village bus. So public transport is a necessity for all manner of reasons…….

 

 

 

 

ZOOM technology brings playmates together……..

I’ve spoken many times about how technology enables me to remain independent, well Zoom enables me to ‘meet up’ with playmates. This week on 2 such occasions …

Every Monday at 5pm, the Zommettes meet on line to put the world to rights, provide ears to listen and share laughter and sadness. There’s 10 of us, I think, including our ‘able enablers, Anna Harrison and Aimee Day. The wonder of zoom, is we don’t have to live near one another. It connects those in remote places with those in cities and towns.

We talk about absolutely everything, knowing we can trust those on the call and also, realising that within minutes of hanging up, most of us will have forgotten anyway…🙄😂🤣

My lovely Zoomettes….🥰

Aimee and Anna, our ‘able enablers’ keep us in order. Me and Agnes are usually snug in our beds, afterall, it doesn’t matter where we are or what we wear.

I could only stay 10 minutes this week as Stuart was picking me up early for my tea….but I couldn’t miss clicking the link just to say hello to those who had made it…and it’s always comforting to see playmates on screen…..

Yesterday was the second zoom of the week  for Dementia Enquirers Pioneers. This is the project where people with dementia are leading from the front on research and inviting academics through our door when we need their help. You can read more about our wonderful project here..

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

It was hosted by the Thred group from Liverpool (Transport, Health, Research, Economy with Dementia)  with the lovely Liverpudlian  Paul Hitchmough chairing and supported by his ‘able enabler, Louise Langham.

On the call were me, Philly, Louise, Paul, Mhari and Ron.

Paul, me, Mhari and Ron, all have dementia and Paul kept us all in order …..no mean feat, which he did brilliantly!

Paul and Louise filled us in on their project on Transport, how it impacts on our life with dementia. They’re well ahead of me and my playmates at Minds and Voices as they’ve organised an online questionnaire, which I’ll share when available and they’ve booked themselves trip through the 4 nations to hear from as many people with dementia as possible.

Minds and Voices havnt met for a couple of months but our project is all about Liviing alone versus living as a couple. We have decided on the questions (I think!) and plan to interview other groups.

I spoke of the difficulty in keeping up momentum when we simply forget it exists; when one meeting merges into another and we forget the smallest details and almost have to start all over again. We came up with ideas to help remedy this.

I wasn’t typing as we were on ZOOM, so any more detail has already left me, but I know we left feeling inspired, feeling we wanted to crack on and ‘do’. There’s nothing more wonderful than meeting up in person but it’s so costly so this is an alternative and allowed people to join from the Western Isles, across to the West and East and from the centre of the country……..and a virtual hug is also comforting…..

I work out ZOOM in the past, but I think it was Philly who talked me through it and gave me a practice run and now sends out a simple link for me to click on which immediately takes me to the meeting, making it straight forward.

There are 12 projects happening around the country, all led by people with dementia, all the research topics chosen by people with dementia. We have until May to complete and then hope to write our own publications and get the media involved as this really is a landmark project showing what people with dementia CAN do with the right support and encouragement……..

Hot off the Press……..!!

Today sees a major announcement by my favourite people…….

“Innovations in Dementia celebrates £700k National Lottery grant to help people with dementia have a say” 👏👏🙌🙌

It’s the launch of their Dementia Voices Programme and will include a continuation of funding for DEEP and Dementia Diaries…..both of which play an enormous part in my life…..

It was in the early days of my diagnosis that I came across Innovations. It was founded by Rachael Litherland and Nada Savitch who wanted ‘to inspire people to think differently about dementia.’ I first met Nada at the York Women’s Conference that appears in my book and that conference changed my thinking and took me into a whole new wonderful world.

Since that day, that day when I was inspired to think differently about dementia, they have enabled me and many others to take part in all kinds of events and campaigns. More importantly they have allowed people with dementia to meet each other and become part of the wonderful family that is the DEEP Network. Pre dementia, I was never one for joining groups, but when I was diagnosed I had this urge to meet others going through what I was going through. The moment I stepped through that door and saw ordinary people, just like me, was a life changing moment. That’s why Minds and Voices is so important to me. We’re just there for one another, to share ideas, to support one another through good and bad.  We can walk in feeling down and leave with a smile on our faces.

We’re part of the DEEP Network, as are over hundred groups now up and down the country. It makes you feel like part of a family, a different family, a special family. You can see if there’s a group near you, or just find out more, on their web site and if run or belong to a peer support group, please think of joining us….

https://www.dementiavoices.org.uk/

And through Dementia Diaries they have given me and my playmates a way to communicate with the wider world…..

You can listen to me reading this blog on Dementia Diaries …

https://dementiadiaries.org/entry/13556/wendy-celebrates-the-launch-of-the-dementia-voices-initiative

Amazingly there are only 6 people in this not-for-profit organisation, Rachael, Steve, Philly, Damian, Rachel and Kate. You would think there’s a whole army with the amount of stuff they do!…but those 6 people work tirelessly enabling me and all my playmates and together we make up this giant army doing our very best to bring about change and continue to inspire others entering this alien world to do the same….

Funding is always an issue for many organisations so I’m so thrilled the National Lottery has seen fit to back this project with the £700,000 grant. Yes they are a small organisation, but have an understanding of our needs far bigger than their size. They are the only people I trust to support me because I know they ‘get it’. They are willing to listen and learn continually. They never forget why they do what they do.

Me and my playmates would be lost without the work of Innovations. This money will enable them to continue, in their ever innovative way, to help people with dementia inspire each other and inspire others to think about dementia differently…..

This news has made made my day……..and this lovely piccie of the 6 mashed together by Rachael shows what a smiley lot they are – our ‘able enablers’ for all to see……from left to right, Rachel, Damian, Philly, Kate, Steve and Rachael…..although we must get a new piccie of Steve so he looks less scary and less like a convict!!

 

Filming with the two Liz’s…..

Yesterday I had a home visit from 2 Liz’s from Hull University……Liz Walker from from Hull York Medical School had asked if I was free to deliver a session to clinicians in February but I wasn’t so they asked if they could video me instead!

The medical school is introducing a new module looking at implementing treatments and care with evidence of direct benefit, for people living with advanced and chronic conditions. Liz believes It’s really important, in this context, to hear the voices of people living with health conditions and to understand the role they can play in research – perfect ….

I usually meet people in my village office, aka the local coffee shop 😂 but because they wanted to video, I agreed to them coming to my house. They’d both attended my graduation at Hull so I did know them…

Anyway, we decided on yesterday at 10am. A dull grey day greeted me as I opened my curtains….but the back of the house offered glimpses of a hopeful day

So I joked that I would need to change rooms in order to see the hopeful side..😂🤣😂

Any way Liz and Liz arrived as planned and then began much hilarity setting up. Liz Price had come as ‘technical support ‘ and we all chuckled finding the right way to set up a iPhone so it would be stable. Liz then came up with the genius idea of resting it on her open iPad and hey presto, we had a recording studio. All that was missing was the clapper board 🤣😂

It worked really well. Liz W had sent me the questions ahead of time so I’d been able to type my answers. Leaving it to chance means I miss out so much of what I want to say and I end up stuttering and faltering my way through…..but this way everything was in front of me.

They were there to ask about the value of involving people like me in research, about the challenges, payment options, and my experience of working with health care professionals and academics…etc

Part of my response about the challenges I’ve found was:

“The challenges often don’t lie with us but with the researchers, to think carefully about our possible needs and react in a sensitive way.”

We did it in one take and all went wonderfully. They are such nice people and their values and beliefs on inclusion are perfect…..and they kindly agreed to a piccie

My video will be played to students in February……..

I then asked them a big favour….whether they were going via Beverley on the way to the Uni as I’d also promised to go to York if we finished early enough. Our able enabler, Anna Harrison, was running the stall on York market today and I said I would join her for a little while if I could get there. Well they did give me a lift and I did get there on what turned out to be a miserable cold blowy day, especially as we crossed the Wolds with the rain heaving down…but the bus trundle was still lovely, and the rain didn’t start until I’d taken this piccie as we passed the Westwood…..

……. I had nothing better to do and it was nice to get a New Years hug from Anna……..

I arrived and after hugs and a catch up Anna went off to get warm and a cuppa. It was a cold breezy day but nice watching the world go by. As Anna returned then playmates Eddy and Charlie each passed by on their way to the shops which was lovely. Our stall was promoting Minds and Voices, DEEP, Dementia Diaries, Healthwatch and all dementia related services in York, so leaflets galore, which did have to keep being saved from gusts of wind…🙄

Me and Anna both did the Skydive last year and are looking for our next challenge and she was delving into Google for inspiration. I did see my local hospice are doing abseiling down the tallest building in Hull but the vista around didn’t look that inspiring…….we’ll keep looking….

We didn’t have many visitors to our stall on this cold January day but the ones we did were well worth getting cold for……..and it gave me something to do……..😊

 

My first appearance before an Ethics board…….

So Friday was Friday 13^th …….. would it be an unlucky day for our project looking for ethics approval?

I’ve never seen what goes on at an ethics board meeting before. So many researchers fear them and they often seem to over protect or underestimate people with dementia, so I was expecting an interesting experience…….research studies have to receive ethics approval to make sure those taking part are safe.

It had started off a sunny day but the grey skies soon descended and fitted my mood for the day….no matter what you thought of the result of the election, we mustn’t let it divide the country. People made their mind up for whatever reason they thought best & now we have to stop all the divisions and hatred that exists. Sadly I can’t feel anger anymore or I’d be ranting and raging, all I can do is let my eyes leak ‘til they’re empty……and so I was glad I had something to fill the space on Friday, but knew that if the panel upset me, I’d just cry and that might or might not work in my favour! 🙄

The taxi driver was a smiley soul but we trundled to the station in silence, conversation all spent for the day. The first train to Hull was on time and I got my cuppa tea before the train to Leeds, which was delayed of course…..

The sky was undecided as we trundle past the Humber…

The train was crowed with festive fun as people with suitcases struggled to find a spot for them to rest and groups raucously brought out clinks of booze and food for the journey …..and exchanged terrible jokes 🙈 as this was a lunch time trundle so very different passengers travelling alongside ….the volume of noise too much for me to decipher punchlines or conversations so I looked out of the window and went into my own world instead…..the peaking sun hiding the torrential rain falling in the distance

We were meeting the committee in the Queens Hotel, next to the station in Leeds and Mark Wilberforce and Louise Newbould, from York Uni we’re meeting me there for lunch ahead of the time so we could talk tactics 🙄. Their project is called HOPES – Helping older people to engage with social care….it’s looking at people with dementia but also people with mental health needs….it’s a really big issue that we don’t address at the mo.

NHS committees are used to to medical trials and medical trials can cause a lot of harm so they tend to be cautious but they are getting used to more qualitative social research than previously. They used to medical researchers ‘Doing’ things to people, so now they’re having to understand risk in a different way. Ethics committees are all about interpreting harm very widely so e.g in our sort of project over probing questions, or overlong interviews……

Ethics committees are volunteers so only get expenses which surprised me hugely….the fact that there’s 3 of us turned up shows we’re keen on ethics…..I promised Mark, I would be polite and wouldn’t mention the fact that I just wanted to see what they were up to 🤣😂

It was mine and Louises first ethics committee….Louise very nervous, me very excited 🤣

In the first part of our study we want to talk to people with dementia and those with a mental illness who were having trouble with care visits into the home and accepting they need help and the reasons why they might refuse help. So having trouble receiving it and accepting it…. Sometimes Home Care staff will dismiss people who reject home help due to the circumstances at the time – it’s easier to move onto the next person, such is the restraints on their time. They may be rushed, the care staff may not know how to interact or how to cope with the situation…..how can we train staff better to understand how to perform Home Care?.

The biggest thing I learnt was we can’t control the venue where ethics decide to hold the meetings. The Queens hotel was a real challenge for me with crazy flooring once more, mirrored lifts and little signage so our able enablers really need to help us with those difficulties. I should have taken piccies to show but I was concentrating on getting from A to B 😳. There was also noise coming from every direction, with Christmas parties and people walking past so hard not to get distracted…

After lunch we headed up to sit outside the Headmasters office (that’s really what it felt like 😂)and just wait to be called……Mark and Louise were nervous, but then all researchers are nervous of ethics, especially NHS ethics…..Mark whipped a tie out to look the part……the research is their baby and timelines are tight, so ethics delays can make or break their project.

We chatted to the 2 chappies also waiting but thankfully their appointment was for 3pm and ours 2.30. They were researching medication in children’s hospitals and the processes…….and were from Manchester ……so had a longer journey than us………it was nice chatting to different researchers in a different field  and it turned out Louise knew one of them as her and Mark had both worked at Manchester …..small world syndrome……

The committe were running very late but a very smiley friendly room greeted us.

I asked at the beginning if they would mind if I typed……and explained why, with the help of Mark.

We introduced ourselves. There were loads of them, probably 10 or 12, which surprised me and the room felt very cramped and full – good job they had smiley faces. One of them was the Chair and another one was in charge of asking us questions.

They started by saying  how they loved our application, how they were please I’d attended and that Mark and Louise had involved me, Maria Helena, who also has later dementia and her husband David.

They asked me the first question 😱about the length of the questionnaire, which took me by surprise as I wasn’t expecting any questions to be directed at me, but that was a nice surprise.……our  questionaire is due to take an hour. They asked if this was too long for people with dementia. I said how flexibility will be key, how each individual is different; how the individuals capacity and the type of day we’re having would influence the process.  I turned to Mark, hoping that was the right answer, as I think them asking me took us all by surprise!!

They involved me in the questioning so much which surprised me hugely. But it meant I had to stop typing to concentrate in case they snuck another one in 🙄😳…..we were finished in record time apparently as they only had 3 or 4 questions and it meant that Mark, at the end, told me to mention Dementia Enquirers 😇….and how people with dementia could well be in the hot seat up and down the country and I would feed back about their smiley faces…….

We were all very happy and very pleased when we came out. It was a happy end to the week but then, needless to say, it went downhill as I entered Leeds station…..my train was delayed and then in the blink of an eye, it was cancelled 🙈……we were told to go to Selby and wait for a connection there. The train we were sent to had just 2 carriages and was one of the oldest trains on the planet and was rammed like sardines when I got there. I squeezed on and a smiley face allowed me to have his seat. More sardines arrived and just squashed onto the train even more.

Once we got to Selby, there were more delays, another sardine train arrived and we joined the squash on that one. Another smiley face gave up their seat for me, so very grateful for those people. A Twitter pal posted this on Twitter to me…very apt with the travel trauma I’ve had lately…

I finally arrived home, very tired after a roller coaster of emotions day………tomorrow’s another day and me thinks a chilled weekend is in order………but a great introduction to the world of ethics committees …..

 

 

Another different trundle to a different town…

Yesterday I had a trundle to a town I’d never visited before – Chorley……I even had to look. It up on the map🙄…I knew vaguely which direction it was but didn’t have a clue how to get there, but turned out it was fairly straight forward with only 2 changes……

Teri Stephenson, CEO of Age UK Lancashire,  had asked me to talk at their Lancashire event eons ago, and since I’d never spoken to that charity I was more than happy…the other wonderful thing was that Teri was a Twitter pal apparently! Within minutes of me agreeing she’d assured me that someone would meet me at the station, I’d have a mobile number and they’d take me back to the station…….simple things that immediately eleviate stress of travelling………

They’d given me 45 mins to an hour, so well worth the trip….sadly it did mean I’d be missing my Christmas Young Onset Dementia meeting in London as that was fixed to the same date a week or so later 🙈….but I can’t be everywhere sadly…..

At this point I would like to promote the Christmas fundraising video for YDUK as they are struggling as a charity at the mo, like many charities, I know, but this one is so dear to me as it’s the only one dedicated to supporting people with Young Onset. So if you could take a moment to watch this I’d appreciate it and remember, even £1 counts……

https://www.youngdementiauk.org/

Anyway back to yesterday…….my taxi driver arrived early and chirpily….we chatted about yesterdays appalling weather and within no time were at the station. I’d taken my Christmas choccies and a card for my superheroes ……..as they had to rescue me last night as well due to a bus simply not turning up 🙈

I had to change at Hull for the Manchester train so had time for a sit down in the warm at Hull with a cuppa….before boarding the ‘delayed’ train to Manchester 🙄…….

The early morning sky showed a distinct ‘sitting on the fence’ look about it as we trundled past the Humber, undecided about our fate on sunny or rainy day…….

Teri had arranged for Lou to meet me at the station and she’d already txt me to say she’d be wearing her Christmas jumper and a pink lanyard……🎄

As we trundled along through East Yorkshire the sky began to come alive as the sun woke up and shone it’s beauty on the world around it…

After changing in Manchester, I arrived in Chorley to find Lou waiting for me in her Christmas jumper as promised and we chatted  happily on the short journey to the Town Hall, where the event was already in full flow and Dave from Mindset was talking about depression…….

He spoke of celebrating getting out of bed when you don’t have to…. We need to take time out to feel proud of ourselves for the smallest achievements – small baby steps can build momentum. Negativity comes natural, positivity comes takes practice.

He spoke of how we often have 100 things on our to do list but always focus on the 1% we havn’t completed instead of the 99% we have………

On the back of his shirt was:

“Master the Mind, Master everything”

He ended with

“You are not weak, the journey is just difficult……”

I’m glad I saw even a small bit of his talk…….he talks to school children about mental health issue too……wonderful….

I was sat next to Teri from Twitter….and she had the most amazing Christmas dress on…..

The event was called:

“The Great Christmas Get together” and many had Christmas written all over them with jumpers, antlers and lights galore…the table were bedecked with Christmas and the event was for all staff and some of the volunteers in Lancashire…

Me up next and I was given an hour to talk about this that and everything……

Part of what I said was:

“If you do live with someone with dementia, or care or visit someone, don’t disable’ loved ones before they’ve lost the capacity to do something – for the kindness of reasons you often do something for the person but if they don’t do something day after day, we forget and then you’re stuck with doing it for us. My daughters use to do loads of things for me in the beginning – for the kindest of reasons – they’d help me with my coat on for example – but I could still put on my own coat. If I suddenly stopped and allowed them to do it, within a few weeks I’d forget how to put on my own coat. I told them that if they continued they’d have to come to my house every time I wanted to go out – they stopped immediately.”

After me was Cheryl, from the People Department of Age UK,  who gave me my very own bauble, with  my name of one side and ‘Thank you’ on the other ❤️…..staff had been given a special bauble for the day and I was given my very own…..❤️

Her talk was around “I am who I am because………”

She spoke of how every single day we make a choice and showed a lovely slide – something I say too…

Remember Age UK work with all older people not just people with dementia, although they have opened a Dementia Hub, as Lou was telling me in the car……Cheryl spoke of appreciating everyone as an individual….everyone’s experience of life is different. Staff are just as important as the people they care for at Age UK…

Just like I always say, the path we choose to take can make or break us…….she ended with

“Label jars, not people” wonderful……….❤️

We were entertained during lunch by the “Elderly brothers’ 😂🤣😂….who played lots of lovely music, rock and roll and I sat at my table and sold all my books I’d managed to take……..people came and chatted, telling me their own personal stories….always nice to hear…….and one person said…”You’ve opened my eyes..” ❤️

As I trundle back to my table with an empty little suitcase, Lou and Teri got me a cuppa and some food ……

Lots of people came up for a hug and Staff were all dressed up Christmassy and were being judged for a prize later, one of my books was up on the raffle, so those who missed out were hoping to win it instead 😂….

I had to leave soon after a lunch and I was missing so much fun!! An Indian dance group, videos and judging of the Fancy Dress!!

But I had to leave to get home at a good time sadly……….

A great organisation, and a day of celebrating their work…..one person said to me

“I’m only a volunteer….” No charity can exists without volunteers……everyone in every organisation is as important as the next……and sadly time for me to leave….and Lou was taking me back to the station…

People attend events like this, they arrive they leave, they moan they enthuse about it……but never forget how much work goes into such events, how much planning, how much stress is involved until it’s all over…….this was a wonderful event, very well organised, with lots of different ‘stuff’…….sometimes events forget to have ‘different’ and this one had it in bucketfuls……..well done Teri Stephenson and your army of staff…..I hope you enjoyed that glass of well deserved wine when you got home…⭐️⭐️

 

 

 

Putting myself through chaos for a glimpse of Christmas….

For those who may not know….I’m a Christmasholic……..🎄

I’m also a supporter of all things local and believe in supporting local events, local shops, local businesses, because that’s how communities thrive and remain…..

So Sunday was Beverley Christmas Festival. Big events with lots of people are a big challenge for me and ones I don’t usually put myself through. I use to adore them but the noise, the volume of people is overwhelming for many and definitely overwhelming for me,…However…..I am a Christmasholic and adore seeing lights and smiles and hearing children’s laughter.

Saturday I went to the peace of the Minster for the Christmas Tree Festival and it was glorious with hundreds of trees and carols playing in the background.

I hadn’t intended to go the the Sunday festival but woke up to a lovely sunny day and thought…I’ll give it a go. I can always escape if I needed to….so I rang the taxi number and they immediately knew it was me and my outing was sorted as no village buses run on a Sunday

I don’t remember ever getting stressed at Christmas, such is my love of it. Even when I didn’t have any money and had 2 small children it was always a joy as I spent my time making things or converting something previously loved into something that would be loved again …..so Christmas was never a stressful affair…..I always made a Christmas menu for the girls detailing our day….including the time to get up!! And lunch was whatever we wanted along with a picnic tea of home made goodies…..I just loved Christmas❤️

So Sunday, I mentally prepared myself for chaos and confusion so that anything good was a bonus…..I always think I can do anything as long as I have a plan B for when things go wrong. But I also have to feel confident on the day and I felt good today that the kindness of strangers would work in my favour if all else failed….

The taxi lady picked me up and we chatted happily as we trundled into town.She’d been in her can since 6am and said it had been chaos all morning…we reached the outskirts of town when the traffic backed up and we came to a stand still.”Maybe the train barriers are down”…I hopefully said….”Do you think so?” She smiled…..it was not the case. It was the sheer volume of traffic…..😳

I eventually decided to get out and walk through the Minster in the hope her next job would be in the opposite direction and she could turn round……

You could hear the noise as I approached the town…..the music, the general noise of people just getting louder. I decided to pay a visit to Tyler and Black first in the hope of a quiet spell as it was only 10.30am🙄. A lovely little shop run by Jane Tyler. I met her through Twitter and she’s designed a mug especially for me with some of the proceeds going to Dementia UK. She spotted me through the crowd and we had our Christmas hug

Before she gave me my pressie of one of the mugs

I’ve met some wonderful people through the world of Twitter who I would never have met in any other circumstances, and Jane was one. She even told me to pop back to the shop if I needed to escape the hoardes……❤️

After that I trundle along North Bar taking in the delights of the stalls. Thankfully the rain held off so trade was brisk in all directions.

It’s much better if I’m alone in these circumstances as I can go into my own little world, I don’t have to worry about losing anyone, and can escape at any time without letting anyone else down.

I went into St Marys Church for a bit of peace. All the charity stalls were in there, but they’d kept the centre for people to just sit and listen to the carols….magical…..I wasn’t alone as many others sat alone simply taking in the peace and calmness

Once recharged I headed back into the throng and joined the children looking at the reindeers near the bandstand

The squeals of delight were a joy and some were guessing which one was Rudolf….

The rest of the stalls were a blur, but all the stall holders were dressed for the occasion and had made an enormous effort for the day….

The fine weather hopefully meant their takings were high as well. People had come from far and wide in coaches, by train and car. So much rides on a day like today for so many people and I think it was a success.

Having had my fix of Christmas I shuffled my way through the crowds back to the taxi office. The lady immediately told me to come and sit in the office in the warm as the streets were still gridlocked and taxis were finding it hard to get anywhere. I then heard her ring customer after customer apologising for the late arrival of their taxi and apologising to callers for being fully booked for the afternoon and was shocked at what I heard…..people were rude, were angry and taking it out on the woman. How can people be so unkind? The traffic wasn’t her fault, it wasn’t any of the taxi drivers fault, yet they received a barrage of rudeness.😔…..

I’d had a lovely couple of hours, yes it was chaotic, yes I did have to wait for my taxi, but I would never have dreamt in a million years of being rude to anyone. Dementia has taught me that stressing gets you nowhere and life is too short to be unkind….

Once I got home I unpacked my bag with the few bits of Christmas I’d bought. Out came the mug that Jane had made for me ….a beautiful truthful sentiment and looked very nice posing for its photo next to my snowman……

“They may not remember what you said, but they’ll always remember how you made them feel”

p.s If you like the mug and wish to buy one, you can contact Jane via Twitter @JaneTylerHQ or via the contact page of the shops web site

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