Last Thursday saw the first of my “virtual cuppa tea with Wendy” via zoom. I’d advertised it on Twitter as a way people could join me by video for a virtual cuppa of tea. The them of that session was Living alone. I have to have a limit as I can’t cope with lots of people on the screen at once. We opened it up to 15 people to join and sold all the tickets, but as usual with these things only 9 people joined me as life takes over and other priorities occur. I say ‘only’ but in fact it was perfect.
For each session I thought I’d invite a guest playmate to join me and last week it was fellow Zoomette, Dreane, as she also lives alone.
I knew all the peoples names from Twitter but had never met them. I invited anyone to join, with or without a connection to dementia. It was lovely to see new faces as well as old. I met playmate Gail. We’d never met but we follow each other on Twitter and it was sooo nice to talk by zoom……I met people I’d never ‘met’ before which was so nice.
We all sat with our cuppas and simply chatted. The one thing I find hard is not being able to type while on zoom as the content is lost as soon as we’re finished. Must try and find a way round this…….I had my able enabler Anna, from Minds and Voices keeping order. It’s our rule that you have to put your hand up, hold up something bright, or a ‘I Want to Speak card’ to wait your turn so that no more than one person speaks at a time….it worked so well.
I’m holding 2 more this week, one today, Tuesday and one on Thursday.
If you’d like to join me for the tea break on Thursday 2nd April at 11am UK time, you’re more than welcome. There’s still a few tickets left, or there was when I last asked. Just book your place on Eventbrite by clicking the link below ..on Thursday my guest playmate is the lovely George Rook and the theme of our cuppa will be ‘Trying something new’. Apologies for my overseas friends where the time won’t be appropriate.
Of course, me and my fellow Zoomettes have been meeting virtually every Monday for ages, long before this new world began, so I consider myself lucky to have known how to remain connected. We didn’t have to learn how to do any of this as we knew already…..how strange that people with dementia were ahead of the game…
If you’ve never used zoom, you can watch fellow playmate Frances and our able enabler Aimee from the Zoomettes on this short instruction film which will give you a starter….
Crikey…..what a very strange world we find ourselves in at the moment….circumstances and advice changing daily, hourly! Confusion at so much being stated that I’ve started simply listening to BBC Breakfast update in the morning (as that’s part of my routine) and then my local news for an update in the evening (another part of my routine)…..just so my head doesn’t explode with all the different messages coming out. I’m getting cabin fever just at the thought of being told to stay inside…..🙄
I was quite blasé in the beginning….but now this is impacting on our lives like nothing else I can remember in my lifetime. I remember the miners strike, in the 80’s I think and the electricity restrictions of my youth. When there was a rota for power cuts – no electricity for hours….I quite enjoyed the candlelit evenings, with no television and having to find other diversions….it seemed quite traumatic at the time but it was simply a nuisance…..no social media in those days….
Nothing like we have now…….
It’s not the isolation I worry about, it’s the lack of ‘doing’, of stretching my brain that’s involved in planning a trundle, planning a event, planning the plan B, meeting people, being exposed to different conversations in different environments. All things that keep my dementia at bay on a daily basis.
But then my inbox started to fill…..filling with cancellations…..and silent at offers to speak at future events….it felt so sad.
I’m writing talks that may never be heard, for events that may never happen, just so I can follow my normal routine on a Sunday, when the world is already quiet with no village buses…
The village bus has been as busy as ever this past few days. A conversation started about the possible threat of over 70’s being told to stay at home. The horror on peoples faces that hadn’t heard the news was quite distressing.
“This is the only time I see anyone to talk to”
Said one, reliant on the village bus for social interaction….
“I’d be lost if I couldn’t go out every day on the bus”
Said another…..each and everyone of us saying how isolating having to stay at home would be.
I’m the youngest of this group so all of them are over 70 and suddenly ‘digging in of heels’ started….
“Let them try and stop me going out” followed by cheers and laughter.
“I might be dead this time next month, so I’m not going to stay in wasting time just waiting”
What happens to those unfortunate enough to have been told they only have so long to live, maybe months – so they isolate and waste the life they have left?
Will no one be able to attend their funeral if they do die or will funerals be delayed for months until the situation settles ?
That’s the reality of telling the over 70’s to stay indoors……practical and sensible though it might seem on first glance…..also, as someone pointed out, many 70 year olds are fitting than those much younger……
What will happen to carers, told to self isolate, with loved ones with dementia or any other condition…..no home help allowed to enter, or even isolated themselves? What will happen to their mental health during this trying time?
How do you explain to a loved one who is physically capable of moving around, but mentally unable to comprehend and remember the problem, that they can’t go for a trundle, that no one is allowed to visit?
I had an event cancelled very late Sunday for Monday morning and had to ring my lovely taxi people to cancel. It’s impacting on them hugely as regulars are working from home, or like me, just not needing them any more.
This virus has raised far more questions than anyone could ever imagine….
I’m lucky I live in such a kind village. They’ve set up a WhatsApp group to help find out who needs help, the village Facebook page is full of offers of help and the village shop posted this message as well as putting a sign up in the shop…saying they will be open for the duration and will home deliver to those in need….
I just know my health will suffer in far worse ways than the Corona Virus could unless I find new routines, new stimulation to combat dementia…….
Some have said, thank goodness for the television, but I’m not a telly watcher. Again, I have my routine of Breakfast TV in the morning for half an hour then it’s off until a couple of hours in the evening. Listening to the radio often makes me fall asleep 😴 🙄…so for me, it’s being outside that matters….
I keep telling myself, the days are getting longer and hopefully warmer and I’ll be able to spend time in the garden.As a playmate said:
”Everything will stop….except dementia”…….
I can hear dementia laughing in the wings and rubbing it’s hands with glee……
P.s well since I wrote this things have been changing rapidly….only yesterday I booked a few days away in my paradise of Keswick, only to have to cancel it after the announcement re non essential travel…..when will I get to paradise again…….😔
Yesterday I was invited to look round a local cancer hospital ward….in fact the one where my daughter is now a nurse!
Now some of you may be thinking….why on earth am I exposing myself and others to a visit to a hospital ward during this time of Corona Virus…..well at the moment we’re being told by the experts not to cancel events…there’s no need at present. The most important thing is the handwashing routine. I’m following this advice. When someone says we have to stop public events etc, then I’ll have to stop, but at the moment we don’t.
I know many others are anxious about travelling around and think we shouldn’t, but that’s their choice. I personally feel very anxious at the prospect of events being cancelled, of not being able to trundle as I wish. The effect this would have on me and my dementia, being far greater than the Corona Virus, if I had to stay at home with dementia as my only company. So I seem to be going out for more trundles just in case we’re told to stay indoors as that would be my worse nightmare, I hate being cooped up inside.
It must be a very difficult time for those with conditions such as OCD and for those of an anxious nature. If we all started to self isolate now and not move around, then after the 14 day period we’d all come out at once and there would be an huge spike in the virus again as we’ve done it too soon, before the advice has said that’s what we should be doing.
So for now I’m washing my hands probably more than I should just to make sure I havn’t forgotten. I’m due in London on Wednesday and did try and find a hand gel to put in my pocket, but it appears everyone in my town has snapped them all up as the shelves were empty🙄
Crikey……went right off piste then….back to yesterday ……
The aim of the visit was to discuss with their Sister on the ward, their plans to make their environment more dementia appropriate…..my daughter Sarah started working their earlier in the year so she was my way in 😂
I woke to a Mr Blue Sky day out of my window after heavy overnight rain….
We were due there at 11 to meet Sister AnnMarie. Sarah arrived early knowing what a nightmare parking was at Castle Hill Hospital…..and it was….we drove round for ages. What a nightmare it must be for cancer patients, already stressed, to have problems finding somewhere to park….not unique to this hospital by any means!
We eventually parked on lines where everyone else was parking, in the hope we wouldn’t get a ticket and ambled to the ward….
We went down a very dark flight of stairs and even though we’d gone down lots, we turned out to be on ground level 😳….very weird.
Using the hand gel before we entered, we walked into the ward, Sarah letting me go first so I got first impressions. On the left was an empty desk, which wasn’t very welcoming, but then I was with Sarah and she knew where to go. It was then that the temperature changed and friendly smiles appeared and a friendly atmosphere appeared along with a Digni-Tree…
And a lovely Family and Friends tree…
AnnMarie was busy so Sarah showed me round. We went into the area they’re wanting to transform…
A very dull, sad sitting area was waiting for a make over. I started to reel off all the possible changes….”OOoo wait ‘til Anne Marie is here ‘cos I’ll forget what you’ve said” said Sarah 😂🤣😂🤣
It was a lovely space with so much potential as it looked out onto the garden with benches and an empty bird feeder, that simply needed refilling to attract the birds to come…
There was little contrast, little colour or happiness but all this is easy to put right.
Finally a smiley AnnMarie was ready for us and we went into her office.
It was nice that she immediately said :
“I want to improve dementia care from the inside out……” and also”
”I don’t want it just to be ok, I want it to be perfect…”
Dementia on line module isn’t mandatory for all staff in the hospital (which it needs to be), but AnnMarie insists on it being mandatory for all staff on ward 30…👍⭐️
We chatted about the options opened to her. They’d received many donations which they were going to use to improve the environment. It’s not difficult to change an environment to be not only dementia appropriate, but people friendly too. Your in hospital for a sad reason often, so to have a dull cubicle room or a dull seating area wouldn’t lift anyone’s moods.
I spoke of the importance of contrast, and taking black and white piccies to see if colours go together – switches that we need to see can have a border painted round them as I have at home, and simply leave those we don’t need to see.
Putting simple coloured non slip mats onto the tables would make them brighter. I mentioned loads of things but forgot to type so not sure what I said.
One patient allowed us into his room to have a look round. It was very dull, very much the same colour throughout. Once again, it wouldn’t take much to brighten a room. They’re restricted due to infection control stuff and other restrictions, but this doesn’t make it impossible.
Each patient has a board with the day, date and which nurse is looking after them. I suggested a smiley piccie of the nurse to make it more personal. Having something on the wall to look at when you’re in bed, would help the boredom and sadness of looking at a blank wall, so suggested commandeering local artists or children to make colourful pieces for the wall.
They use the butterfly scheme on the ward to identify people with cognitive issues, but some relatives and patients aren’t keen on this being used as an identification marker. I love butterflies, so I’d have no problem. Also people need to understand WHY it’s a good idea and sometimes I imagine there’s not enough time to explain. I did wonder afterwards, if they could have a wipe clean information folder in each room with things like that in along with meal times, etc. It would give relatives and patients alike something to read when they first arrive to make them feel more informed and comfortable…..
As I said, not everyone has a diagnosis, so observation on the part of the staff has to come into play as well.
Sooooo much else I could have said, just not enough time. I’m going back to speak to staff in a couple of months so hopefully I’ll be able to say more then…..
I suppose you have to strike a balance between making a room friendly and comfortable and not too friendly that people are reluctance to go home….😳😂
We ended on a happy note with a piccie by the Family and Friends comments wall……..
Yesterday I was invited to speak to staff and volunteers at the Marie Curie Hospice in Bradford. Frances Glover, the Volunteers coordinator had asked me before Christmas if I would talk there and also chat to the team about a proposed dementia garden.
I was glad to see I’d woken to another sunny day (two in a row!!) after my trundle of Monday capturing the beauty around me. I’d never seen the Minster in such detail but I was pleased with this image….
The taxi driver was early and caught me on the hop, but he waited patiently and let me get my act together. He told me how he’d been to Bradford airport early in the morning, and there’d been snow 😳 so hopefully by the time I get there it will have disappeared…🙄
Once the first train got to Hull, I made my way to the ticket office as Hull station along with Northern Rail and Transpennine have now adopted the sunflower lanyard scheme to identify invisible disabilities. Now I know this has been a contentious issue in many arenas – saying, why should we have to wear anything to identify need – but for me, it simply makes it easier. If I’m in need of help, I don’t want to have to spend time, when I’m probably in a pickle, explaining why I need help. The lanyard does that for me and has worked marvellously.
In the office the man immediately knew what I was talking about and gave me 3 options, a lanyard, a pin badge or a ribbon. So people can be as obvious or discreet as they like…
I popped into the station café and even they recognised it and after glancing at my lanyard asked if I needed help taking my tea to the table…so some things are changing…quite a refreshing start to the day……..
Thankfully the Humber was looking calm and friendly after all the recent storms and rain
But as we trundled further east, the ground became wet and the skies were grey…🙄
Arriving at Bradford, I got a taxi to this new destination…..not knowing how far, or how long it would take. The entrance surroundings were high security with fences and access gates, then access doors, but I eventuallly worked out how to get in. I was early so expected a wait….it was strange, but it didn’t have the calming friendly feel of other hospices I’d been in. Think this was down to the design of the building rather than the people who seemed to be rushing around. No one made eye contact or smiled. It had felt like I was entering a secure unit rather than a hospice. The reception area being very closed in with no friendly light….felt strange…🤔…and uncomfortable…
But Frances came out to meet me almost straight away and took me up to a much airier room ….numbers would be a mystery as a lot depends on staff situation and patient need, obviously……so it lay waiting and ready and I typed away, Frances having left me with a cuppa and logged into their WiFi….happier bunny……
The room began to fill up and soon it was full with smiley faces, with extra chairs being found and time to start…….there was a mix of volunteers and clinical and non clinical staff……..
I had 50 minutes to ramble on about anything and everything and then 10 minutes for questions…..I covered all my usual stuff including language, body language and facial expression of professionals, how it can make or break us, environmental lies, how feelings take over from detail and told them to :
“Live in our world as we can’t live in yours”…….
Lots of questions afterwards, but I wasn’t typing so don’t know what they asked. I’d taken books to sell and those in the queue asked extra questions, which is always nice.
I’d forgotten to ask for a piccie with everyone 🙈 but luckily Frances asked if I minded having one with the few that were left..So at least I got some of them….
As everyone left, a man came in who is responsible for designing a new garden and asked me various questions. I said how getting it right for people with dementia would lead to getting it right for so many others………..
I’d entered the building feeling unwelcome, people passing by as I sat waiting but no one smiling or saying hello…but by the end there were smiles, friendliness and chatter….what a difference a few hours makes….
Time for my train and Frances ordered me a taxi, but then someone else appeared, who’d already booked one. She’d come down from Newcastle to see me….🙏🤗 so we shared a cab to the station and chatted more…….before going our separate ways……and as I waited at the station the snow flakes began to fall once more….🙄
On Friday I ended my week with a trundle to Leeds to the brand new renovated Leeds Playhouse. It’s been closed for a while while they create a shiny new theatre and, even though it reopened a while ago, Friday was my first viewing.
I’ve done loads of things with them in the past under the invitation of Nicky Taylor, Theatre and Dementia Research Associate, from reviewing a showing of Chitty Chitty Bang Bang, to advising on and working with actress Sharon Small on her portrayal of the stage performance of Still Alice. But I was there Friday, to see the progress of a new play by writer Frances Poet, called ‘Maggie May’. Apparently I met with Frances a couple of years ago when the idea was a seed and after meeting me and many other playmates involved with the theatre, she wrote the play.
We were there to see a few scenes having a run through, especially around ‘the fog’ that Maggie was experiencing, to give our take on the storyline and performances.
Anyway, another train trundle to get me there, this time 2 trains, changing in Hull.
A bitterly cold wind hit my face as I went out of my front door to join the waiting taxi. A newbie driver to me. Before I’d left, the weatherman had told me it was due to be a rubbish day and more heavy rain was forecasted 🙈….must be dreadful for all those people in flooded homes, or with the water creeping ever closer, to hear the news of more rain on the way 😔
Changing at Hull, my next train was waiting….i climbed aboard and then as the departing time got nearer, I realised I was by myself, the only person in the carriage……very strange at 08.15 in the morning 😳……but then the reasurring dulcet tones of the guard confrimed I was on the right train, but for some reason today, I had it to myself 🤔……..weird…maybe it was the forecast that had put people off travelling 😳…..
Anyway we trundled our way …..it felt like we were trundling through a very sad grey world as we passed by the Humber, fed up of all the deluge of rain of late and desperate for sunshine and warmth….or was that just me…..?……… onwards to leeds….
As I said, me and a few other playmates had been invited to watch and comment on some of the darker scenes from the play including Maggie’s ‘fog’ and her fears. I trundled down through the city to the new vamped playhouse….and it looked very different
I suddenly saw Nicky coming out to meet me…..gone had the long steep steps up to the entrance and now it was on street level straight into the café
We got one piccie of me in front of the advert for the play and the message to the right, on the wall of the theatre says…..:
“I Get Knocked Down But I Get Up Again”
Obviously referring to the theatre revamp, but very appropriate for me too…..😂🤣😂
……I was the last to arrive as 2 other playmates and 2 supporters were waiting all ready……..
We made our way up to the rehearsal rooms a short walk away and all the actors were there waiting……along with Frances the writer, Jemima the director,🙄😂
We got our cuppas, our name badges in situe and made our way to the Directors area where we would sit and watch the scenes….first task was a piccie of us, all present and correct…
The they set the scene for us…they’re trying out a little section today – 5 scenes and whether that group of scenes work and whether Maggie experience feels truthful – do we get enough of the difficulties but also the resolve and lightness that it will lead to …..
The blurb for the play states”
”Maggie and Gordon first met in 1971 dancing to the sound of Rod Stewart. Now in their sixties, and still very much in love, they’ve been finishing each other’s songs all their marriage
At this point, Maggie lives at home with Gordon her hubby, she’s been hiding the diagnosis from her son and best friend ….
There’s a TV screen that adds prompts for where were are, who people are and Maggie’s thoughts………which I think will work well on stage with a screen each side.
The actors appeared and introduced themselves…..
Eithne – Maggie May
Maxine – Jo, Maggies best friend
John – hubby Gordon
Mark – son Michael
Shireen – sons girlfriend Claire
The scene started with Maggie in bed…..and hubby coming to see her in bed when they were suppose to be going to her group….but today is a foggy day…..and we saw Maggie going through the trauma of a foggy day – not to give too much away, but this is a very intense scene but with such a purpose and message that it can’t be ignored.
We saw her next in the hospital bed……with her best friend visiting.
“Do not compare your scattiness to my life…” and ‘If I was here with stomach cancer you wouldn’t say ‘oh yes, I often get tummy ache’
said Maggie as her friend started to compare her forgetfulness with her own – one of my favourite bits….
The play is part musical with a lovely bit between Maggie and her hubby singing…and one of these singing outbursts will end the first section…..
which had us all jigging about in our seats…
We sat in a circle and discussed this scene in detail, the scaryness, the reality. We had some brilliant ideas between us and it was interesting to hear all our views, as there were differences…….as we all have different experiences…..we suggested ways to enhance some messages, applauded some bits and suggested changes that might be made in other areas..
Frances and Jemima were jotting down profuse amounts of notes….
The songs and singing, along with the darker times of the start of the scene depicted the real life roller coaster we live through…
It runs for 3 weeks in Hornchurch from 13th March…
Something magical to be involved in once more at the Playhouse and the actors breathed a sigh of relief as they took in our comments and praise at the end…..can’t wait to see it in April……..and time for one last piccie of everyone together
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 ‘inthe 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…..
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:
“Ifwe 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…….
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.
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 7th 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…..
“ Itfeels like a turning point in changing hearts and minds..”
Let’s hope so…..the passion to change was certainly in abundance today…..
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…….
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…🙄😂🤣
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..
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……..