A Trundle to Salford…….

After a bad few down days with dementia. On Wednesday I found myself on an afternoon trundle ready to speak at an event on Thursday morning in Salford. Sometimes it’s the ‘doing’ that pulls you out of the fog……

Researcher, Tracey Williamson, asked me back in February if I’d like to attend the end of study conference. The research had been going on for the last 3 years and they had been researching people with young onset dementia and their families/family carer’s experiences of health and social care services which are sometimes aimed at people in later life.

They’d already been to my house and recorded my talk, just in case I was having a bad day, so I felt like I knew them. They’d recorded me reading my talk, answering their questions and reading an extract from my book.

The conference was due to start earlier than I could comfortably get to Salford, so they’d kindly agreed to put me up in a hotel the night before…..hence the trundling starting on Wednesday afternoon!

Anyway, it was a gloriously sunny afternoon and I was able to catch the village bus and pop into Sarah’s for a cuppa before going for my train.

Tracey has agreed to meet me at Manchester station and take me to my hotel and amazingly my train left on time! It was sad to see the blackened sight of Saddleworth Moor as we sped past but even more clear was the acrid smoke that filled the train as the doors opened and stuck to the back of your throat……what it must be like for the firefighters in the thick of it, goodness knows…

Tracey was there as promised and we got a taxi to the hotel on Salford Quays – I had a lovely view of the water from my window

An even bigger surprise was the news that Joy Watson, who also lives with dementia and from Salford, was joining us for supper – Joy only came out of hospital a few days ago but was adamant she was going to join us and no sooner had I arrived, we were having supper and time for a selfie…….I rarely go out in the evening but couldn’t resist seeing Joy.

Chris Seward picked me up from the hotel in the morning and drove me the short way to the venue at Salford Uni where I was met by Tracey, John and a cuppa tea. I was soon joined by lots of new playmates with Young Onset from the Salford area, including Joy!!

Tracey started off the day with the normal housekeeping and then it was me to open up the day……..I said:

“I’m not saying that it’s plain sailing because it quite clearly isn’t but if you look at a diagnosis as a new way of living, a life of adapting, it can make life much calmer and a little less stressful.”

And I finished off by reading an extract from my book about my glider flight.

There were many lovely questions, one of which was:

“if you had to choose one type of support from the moment of diagnosis what would it be?’

My immediate response was peer support – the opportunity to talk to people going through what I was.

People were very kind in their support.

Tracey then spoke of the study itself and gave a history of it from the beginning. They had an Advisory Group from the start, some of whom were my new playmates in the room.

“Research is messy” it never goes to plan, said Tracey. It’s always about adapting and being creative. Just like living with dementia really!

It was then the turn of Luisa Rabanal to talk about the experiences they found in the study from people with Young Onset.

The participants were solely from the Salford area.

The findings were 4 main themes – the process of diagnosis, the impact of living with YOD, the needs and living well. Luisa gave quotes from the participants for each theme.

People got a lot of leaflets, a lot of information but it was face to face they needed at this time.
Most of the participants felt peer support was the key to help them feel safe with dementia. To see others who are further down the line and still ‘doing’ was inspiring for those at the beginning. One great quote from someone was:

“If I keep moving the dementia can’t catch me”

Not everyone has a positive attitude so we need to find ways to help them through practical coping strategies….

She showed a great summary slide

Luisa then moved onto family carers – as the research included them as well. I always say that our needs are equally important but our needs often run in parallel and never meet.

There are close to 700,000 people in the UK acting as primary carers and save £11 billion in care.

unsurprisingly, carers also said how leaflets were pointless and face to face support was also needed for them too. They have the same needs but for different reasons and again, a supporter of someone with Young Onset has different needs to those diagnosed later. Another great summary slide…

Now time for a cuppa tea👍

Followed by the turn of my new playmates to be on stage talking about their part in the Advisory Group from the beginning.

It was then time for lunch and for me to get to know some of my new playmates better, including comparing bruises where we wobble, lack of sleep and lots of laughter!

After lunch it was the turn of John Chatwin to talk about the experience of service staff and the final interviews.
They interviewed 25 staff in a range of services…..think I got lost in my little world at this point, as me thinks brain shut down must have started as I seem to have stopped typing….I’m sure it wasn’t anything to do with John!

I’m sure there was lots more but……🙄

Salford appears to be a good area for services, although they need to be more focussed when addressing the needs of those with Young Onset.

I was well looked after and everything taken care of in a timely manner with no uneccesary stress – thank you Tracey – and I shared a taxi back to the station with Luisa, which was lovely.

On the journey home it was sad to see the helicopters above Saddleworth Moor still trying to put out the fire……….and our train was delayed……..a train decided to break down in front of us…..🙈😴🤯
I might have got home with a banging headache in tow and later than I should….but dementia hadn’t won today……..

Today my book is published in United States and Canada…….

Who would have thought, 4 years ago, when diagnosed with dementia, that those words would have been typed from my fingertips….?

It’s amazing what opportunities can come your way even after the most darkest moment.

It’s a land so vast that the ripple effect may not happen as it happened here in our tiny country, Penguin random house has given me that opportunity to find out. Lisa Genova, author of Still Alice kindly reviewed my book there….

The cover maybe different, but the words inside are still the same apart from a handful of word changes for the good people who choose to read it will understand what I’m talking about…

The audiobook is my voice – another wonderful opportunity that came my way and for those over the Atlantic can be found here:

http://www.penguinrandomhouseaudio.com/book/563464/somebody-i-used-to-know/

The name of stores selling my book, totally unfamiliar to me but apparently very well known over there – Barnes and Noble store, Books a Million as well as on line – all waiting for a new audience to read my book….

Today, I hope will be the beginning of making new playmates in these far off lands across the Atlantic. Let’s see if this vast nation embraces my book as many have so far, or whether it will disappear into its vastness…like a grain of sand found on a beach…

If it switches on a light for a few around the reality of dementia, just enabling the light to flicker for a few people will have made it all worth while.

So all you people over there, let me know through Twitter, my blog or a simple email, what you think of the world I reveal in my book.

Amazon US have already included it in their Best Books of the Month section under memoirs…..very humbling ……

I wonder if they’re ready for someone like me and my book, Somebody I Used to Know….?

Another WOW opportunity comes my way……

The Hay Literary Festival has always been high up on my wish list of events to visit. To be surrounded by literary genius and like minded people was always going to be a wonderful experience.

Little did I know that my visit there would be, not as a spectator, but as an author on stage…..I could never have imagined this in my wildest dreams, let alone 4 years ago when I was diagnosed with dementia.

I’d mentioned to my publicist some months back how Hay had been on my wish list and within minutes I was on the programme in conversation with Guardian Journalist, Decca Aitkenhead…….😳 how lucky am I?

Anyway, yesterday was the day. The travel arrangement and all the detail had been sorted by Jasmin at Bloomsbury. The first thought was for me to travel via Birmingham 🤢 so I looked at alternatives and found a route via Manchester; a little longer but hopefully less stressful as I don’t mind Manchester, with its platforms all in a row😊……
But since all the timetables changed, I now have a new piece of paper in my pink file, detailing all the stops as some unfamiliar ones have now crept in, which might really confuse me on a cafuddled day………..🙄

My pink file was stuffed with everything I needed to know to make the journey possible.

Me and Decca had email conversations about the content and she’d sent me her proposed questions as an idea to get some words in my head but also typed out….just in case……….

So the morning arrived, as did the taxi and we trundled off to the station on a gloomy chilly day………even the cows hadn’t got up as we whizzed past the Westwood

Due to weather the vast expanse of the Humber wasn’t photographically appealing today, so I simply sat and stared out of the window…

The first and second train was on time…..after that it would be new territory as I was heading for Hereford where a car was due to meet me.

But my arrival at Hereford 10 minutes late was the start of the trauma…….my car had left without me🤢. I’d followed the agreed plan and emailed instead of phoned but a lady who was waiting for someone else said a Hay car had just departed……..with one missing🤯

I won’t write much about the next 2 hours as I don’t want to remember them. But Jasmine, on the end of email at Bloomsbury, was amazing and helped me by keeping in contact and phoning Hay for me. Eventually I got to my B&B at 5pm, having left home at 08.30😴😵

The B&B people were lovely and hospitable – just ordinary folk allowing authors into their home during the Hay Festival……by the by – in the morning the husband made me breakfast and it was just the two of us. He suddenly realised I was ‘the lady with dementia’…..turns out he’d been diagnosed 2 years ago and his wife wouldn’t talk about it. I was the first person he’d spoken about it to as he was ashamed ☹️. So for the next half hour we laughed and joked and plotted against dementia…….so sad…

Staying in someone elses house was very disconcerting too sadly. In a hotel you can lock yourself in your own little pod but not in a house. So I had to leave notes galore to warn me where I was but the people coming and going was very strange……..

Anyway, gone off piste……The car came to pick me up at 5.30 so it was all a bit rushed, but once I got there…….well, all I can say is WOW…….I was shown to the Green Room tent where I had photos taken and made a short film but the person earned their brownie point by immediately getting me a cuppa tea. I had some photos taken and then went to the small studio. Each author had been asked one question to be answered in 2 minutes and mine was:

“Will we ever find a cure for dementia?”

I ended that by saying:

“However, having engrossed myself in the world of research, I’ve realised, the answer may lay at the other end of the scale – the beginning……preventing, delaying long before the signs are visible.
To stop it in its tracks and give someone a few extra years of normality or the ability to eradicate it its first tiny beginnings would be my wish for future generations….”

It was then back to the Green Room to be met by Rachel Niblock, from Dementia Diaries who lives close by and brought her adorable grandchildren, Faith and Evie, to meet me. We tried to spot famous people while we had another cuppa and chatted before Guardian journalist, Decca, came along and a lovely person took us across to the ‘Good Energy Stage’ ………

I really don’t remember much about the hour that sped by but I remember liking Decca immensely and we chatted happily before it was time to go on stage……….all I remember about the event is the warmth of the audience, the kindness of their applause and much much laughter. I read from my book as well as chatting to Decca and we seemed to answer loads of questions from the audience.

At the end, we apparently got a standing ovation……..a humbling experience and then whisked off for a book signing where many kind people queued up simply for me to sign their book….who would have thought…..😳

At the start of the day I couldn’t have envisaged the extremes of emotions from despair to elation, but well worth the trauma for such a wonderful unique experience…..

I came away with a beautiful paper rose which all authors were given after their session on stage and I seem to have acquired a Hay mug!

Think I must have walked out with the mug as it still had tea in the bottom😳🙄

and a beautiful sunset to look at from the window of my B&B…

An interesting tweet by someone in the audience that night……:

“Your response to the point about Calais was worthy of a stand up comedian”
My response to that was……”Crikey, the mind boggles as to what that was all about and what on earth I said….”😳😳😂

Never stop dreaming as dreams do sometimes come true………

Unfurling of the Great Yorkshire Banners…….

So yesterday I was due at the research network arm of the Alzheimers Society for the second day of their conference, however, I had a change of heart……..
The night before was the evening meal at The Oval. I usually decline the meal and sit happily unwinding in my room with a tuna sandwich…….but yesterday so many people had come up to me and asked if I’d be there that I felt I should give it a go…..

It wasn’t until I got there and one of the society staff asked if I’d be in York on Wednesday and I felt so guilty saying no, I’d be in London instead. Over night I decided that I should and want to be in York with my playmates so decision made, then panic stricken for letting the research network down🙈….I really need 2 of me………☹️

The wonderful A Team from Yorkshire were there to look after me for the evening meal so I was in safe hands as were my playmates from the 3 Nations. I’d known some sad news early in the day and it was announced at the meal last night. The news that Matt Murray was leaving the society.

Matt was the first person I ever met in person from the society when I saw the button on the web site to ‘Be Involved’. It was then that I joined the research network volunteers and our wonderful friendship began. I trusted Matt. He allowed me to break all rules and become a monitor ahead of the usual time simply because time is an unknown quantity for someone with dementia. He always said what he was going to do, when he was going to do it and always responded quickly to emails.

Everyone moves on, and Matt is a wonderful catch for any organisation but I will miss him dreadfully and I’ll always have special memories of Matt.

I only lasted the first course before the noise and buzzing bees of conversations around me became too much and I left them to it……

So the next morning I woke and started working out my new plan. I txt Sandra to say why I wouldn’t be there and then I went and checked out and saw people in the breakfast room so was able to apologise in person……

I also had to txt Gemma so she wouldn’t pick me up in the evening!!

I had to be there for midday…..I realised when I eventually got on the train that I’d rushed the planning and didn’t find the best train, but hey ho……too late ……..

I arrived at the station to find the Tony Husband, Ian Beesley and Yorkshire tea voice man Ian McMillan setting everything up along with Philly, Rachael and Damian from Innovations in Dementia – all of whom have made this event possible…………

Philly earned her first brownie point of the day by immediately going to get me a cuppa tea……….as Virgin train didn’t have enough staff for a trolley service on the train, so I was gasping!

The media arrived in the form of the local BBC and the radio was there I think too……marvellous …….my playmates were wonderful at speaking up.

A brass band of children arrived to play a fanfare

before the unfurling and then several playmates stepped forward to reveal the wonderful banners created by an amazing designer with wonderful images by famous cartoonist Tony Husband. Equally famous Ian Macmillan read out 2 amazing poem and then the reveal happened. What amazing banners which just say it all……..

The negative side of travelling ….

The equally famous (have to treat them all fairly🤣) Ian Beesley said:

‘“ unfurling the banner cos we’re unfurling the future” wonderful……❤

And the positive side…

Many photos were taken and so many members of the public came over to ask what we were up to and the children in the band were amazing. The local BBC and newspaper were also there .

Minds and Voices with photographer Ian Beesley…

Once everything was over we had one last photo en masse in front of the banners. The banners show one negative image and one positive image and what travel means to us folk from a Yorkshire viewpoint….transport and our Rights…………

We had a coach back to Priory Street, lunch and a debrief………we were all on a high as it had been such a success. Yellow ‘I want to speak’ cards were up all over the place in the room.

And what a wonderful booklet to come out of this amazing experience for us all – full of cartoons, photos, poems and stories – superstars⭐

With our wonderfully smiley Rita on the cover….❤

Travel is so important to me, yet is so stressful. Yet small changes can make it possible.I’m so glad I changed my plan today because all our words of the past 18 months, today became an ACTION of our own…

Alzheimers Society Annual Conference Part 1……

After the wonderful day at Minds and Voices in the morning yesterday, I sadly had to leave them all at lunchtime to carry on having fun without me🙄. I had to head down to London for the Alzheimers Society 2 day Annual Conference. Travelling from York meant the train was direct and no stops…….☺ and I was being met at the station by research playmates, Barbara and Sandra. We were arriving the evening before ready for an early start on Tuesday.

The 3 Nations Dementia Working Group were opening the Conference with 45 minutes to set the scene, so I was excited about seeing everyone.

Anyway, the train was on time in York and we trundled down at full pelt. As I was getting up to get ready to get off the train, the woman who’d been sat opposite me asked if I needed any help. I said I was fine thank you and she shocked me by saying.
“I’m halfway through your book, you’re Wendy Mitchell aren’t you?”……😳 ………crikey, how lovely……..

I could see Barbara waiting at the gates as agreed and it turned out we’d been on the same train😮……Sandra joined us soon after. Me and Barbara couldn’t have set off on our own as we were relying on Sandra to know where she was going🤣

We found the hotel and immediately decided to have a cuppa, only to be joined by 2 other people followed by Prof Murna Downs from Bradford Uni……..but the day had taken its toll and all I wanted to do was chill in my room so I left them all to it……..

And so to the first day of the conference…..apparently 500 delegates were due there 😳

After the last hotel in London, which created a new tube stop on the map 😶 – this one was lovely and peaceful, just need to teach my eyeballs how to sleep again🤣.

I met everyone else down in reception to walk through the busy, crazy London streets to our venue for the 2 days – The Oval Cricket Ground. Some kind person walked with me as the volume of people and noise was overwhelming….

But we made it to the Oval

And then the chaos started, but people came up and said such lovely things and some simply to say hello which was wonderful. I finally saw the 3Nations stand in the corner and made my way to have hugs from all my playmates.

Broadcaster, Fiona Phillips introduced the day and went through the normal housekeeping stuff, and Kathryn Smith, Chief Operating Officer welcomed everyone to the conference before Fiona introduced us – we went on stage in 3 batches to do our bit so we could sit down with the mic.

Keith and Chris gave us a recap of the The Dementia Statements stating how 2 words were previously missing, ‘Rights’ and ‘We’…..
Chris went through the review process and started by saying ‘How everything is changing but nothing has changed”

It was next the turn of Joy, Tommy and Nigel and Nigel started off by talking to the audience about Human Rights.

Tommy ended by saying ‘I got a DNA test today and I was shocked to discover that death is hereditary in our family” Cracking Tommy🤣

It was then me Hilary and Keith (who was representing John who is ill) and we finished off by stating what people can now DO. Part of mine was:

“There comes a time in any campaign for change, when enough is enough. When words and good intentions become meaningless promises.”

And Keith and Hilary finished off our session perfectly …….

Before a much needed break it was the turn of Sir Simon Lovestone talking about BIG DATA…..using data we already have to accelerate drug discovery…..

Data from electronic records, especially as GPs move from paper to electronic storage. So much data that could help reach dementia. The data given to studies can be used again and again and again – why collect this all over again when it’s already there……..

Well, personally, I never imagine in a million years that data wouldn’t be re used………if patients have given consent, or opted out should they wish.

The good news he gave was the indications found in some research of finding drugs to protect against Alzheimers…..similar make up to drugs that already exist and adapting them……..that’s where I’ve always thought research should focus…….

So then it was a much needed cuppa tea time but first time for a photo with Fiona

I was due on our stall to sign books. So many kind people came up and said lovely things and many books were sold, for which I’m very grateful………..there were so many people that when I next looked up everyone else had gone to the break out sessions and I was due to be watching Young Dementia UK…….I did wander round for a while, but just couldn’t find the room…..☹️ so missed it. Instead I went to the quiet room and took piccies

Joy joined me eventually and then lunch arrived, so we were able to get in before the crowds arrived – perfect! Dr Jennifer Bute joined us along with Hilary, Tommy and Joyce. A lovely lunch of chatting before heading back to the hoards.

I then joined in the session introduced by Dawn Booker. PhD Students from the Doctoral training centres around the country, had 7 minutes each to take us through their study……wonderful to see enthusiasm as well as nerves in these amazing future leaders of research……..one showed a slide that said:

“When you stop taking risks, you stop living life” – wonderful😊

At the end all the students came on stage and I Was allowed to ask one question….

“If you were advising students starting out with their phd, what would you advise them to do or not do”

All of the wonderful students gave an answer and one that stuck in my mind was:

‘Talk to as many people with dementia as possible”……..now you know why students are my favourite people, our hope for the future…..

Brain apathy had now set in as it’s been an overwhelming day………I’m sure the rest was wonderful…..but one thing that made me sit up and wake up was when Minister of State for Health and Care Caroline Dineage MP spoke…….and sadly they seemed just ‘words’ and promises…….she said all the right words in all the right order…….but I’ve heard the words before. Brownie point will only be gained when the words are turned into real ACTIONS………

No more typed words, so I guess my brain went on automatic and disengaged from my fingers…….Day 2 tomorrow……

The importance of ROUTINE even more so now……

Routine has apparently taken on a whole new meaning for me…….

It’s become abundantly apparent that routine plays a very important part of my life now. Routine helps me to feel safe and cope with living on my own. I’ve always known that 2 days is my optimum time to be away from home, but I hadn’t really understood why, until last week when I was away for 4 nights………..

When routine is changed for more than 2 days, I seem to forget some of the normal routine and learn a new routine……..bizarre but true.

While I was away recording my book in London, I must have got used to the new routine of living in a hotel room. Yes, it took me a day or so but I’ve fine tuned that routine so I slip easily into it – leaving the curtains partially open so I can see my way around the strange room; a note by my bed telling me where I am and why; a note by my stick to remind me to take my key etc etc……….all sorted……

But this time when I went back home and Gemma dropped me off……I was in a right muddle…..I did follow my usual routine of putting the washing on, but then what? The house seemed so large with many rooms……I decided to go outside and potter in the garden for a while and leave this strange world behind…..

Anna, my co-writer, had suggested I write a ‘Wendy Sunday List’ and a ‘Wendy Thursday list’, because she knows I only do 2 nights awnay from home, which I had duly done. However, I’d written the ‘what’ but I hadn’t written the ‘how’………

After wandering around for a while, I eventually gave up and climbed into bed……fully dressed…..😳….I knew this was wrong but I couldn’t think why to begin with – what had I missed. I sat on the edge of the bed looking round for a while, then out at the birds…….there was something missing….

Looking down at my clothes, I realised I didn’t have my pyjamas on…….then I looked over to the chair where they usually sit waiting for me and weren’t there……..what I should have done, is put clean pj’s out before I went away, then they would have been waiting for me in the usual place…..🙄

My mouth felt stale…….I hadn’t cleaned my teeth……because my toothbrush wasn’t by the sink, it was still in my suitcase🙄

The shower the following morning was confusing……I had to stand and work out what to do in this shower as the hotel one had been different and things were in a different place🙄

Following on from last Fridays blog about the media frenzy, you might be asking how I cope when that throws me into chaos…….simple answer is, it’s not my routine that’s broken as I let other people deal with the chaos especially when loads of emails arrive. I just ignore them and get on with my everyday stuff and then once everything is organised I just follow instructions……..😊

Ooooo, and they’ve just changed all our bus timetable…….but that deserves a blog all of its own…….😫😱😫

And why do I put myself through all this stress and non routine? I asked myself the same question so many times when I’m not feeling good, but then I get a kind email or message from a complete stranger  and any stress and confusion created fades away until the next time.

I know I annoy many people by my continual positive attitude, but that’s what helps me cope. I’m sure even my daughters must get fed up of it sometimes. I have rubbish times just like everyone else, but I can’t let those times win or it will bring me down.  The alternative is to sit in my bubble of routine with dementia as  my soulmate and I dont want dementia as my only companion…….he’s not very good company…..

How exhausting this life with dementia can be sometimes but then some kind person comes along and brings my sparkle back again………

Billy is very good at showing me what to do when he’s tired…….😻

Talking on Australian TV……..

I hope the following link works…….not really sure how long they last for and whether it’s available everywhere…….

But first of all I feel I must clarify again. My book isn’t the first ever written by someone with dementia. There are many out there and apologies to all these people. All the books are equally important. The uniqueness of mine lies in the way it’s written.

But below is a link to the short film I made for Australian TV to promote my book and which was shown on ABC 7.30 yesterday evening in Australia. This is the full length version.

http://www.abc.net.au/7.30/learning-to-live-with-the-fog-of-dementia/9651938

And here’s the link to the story online….

http://www.abc.net.au/news/2018-04-12/how-wendy-mitchel-learnt-to-navigate-the-fog-of-alzheimers/9636350

Or they’ve now put a link to the shorter version on You tube

I had so many lovely emails, tweets and comments on my blog from new virtual playmates, it was wonderful. Just shows how small the world is now we have the internet……..

Big thank you must go out to the lovely journalist, Lisa Millar and cameraman Niall for taking the trouble to visit me at home for this……

The silver thing on the right as suppose to make me 20 years younger’ ….mmmm…..me thinks they need to get their money back😂🤣😂🤣

Visit by Artist, Suki Chan……..

A while ago I had an email from someone introducing me to Suki Chan, an artist working on a new project making a film….Our friend, Google, describes Suki as:

“……… an artist whose work uses light, moving image and sound to explore our physical and psychological experience of time and space…..”

The film itself is about Bees, Humans and Artificial Intelligence – what a different subject!. Are bees conscious and at what point do human beings become conscious – is it in the womb?. And what its like to lose consciousness or aspects of consciousness. We lose consciousness everyday through sleeping. But what happens to our consciousness when we’re living with dementia. How does it affect our sense of our identity?

Big questions so I was interested to hear her approach.

Colin Blackmore, who is a vision scientist – (how the eyes and brain work together) met with Suki about her previous project on vision. My book, Somebody I Used to Know, was on Colin’s desk when Suki visited him 😳 and he said she should get in touch and here she is today.

Suki arrived and had brought me 2 of her books, with beautiful simple covers – I’m a tad obsessed with book covers…..

She started off by telling me about her project and what she’s done so far….

She has recorded bees in a hive over 24 hours and found they became louder at night. The hive never goes quiet – in our world we see the night as a quiet time as most of us are asleep….so maybe bees don’t always sleep at the same time – shift workers!. And at night they are noisier as they have to keep warm as it’s very cold being outside in a beehive so they flap frantically trying to keep the hive at about 36 degrees……..wow! That just wasn’t what I imagined and I learnt so much about bees during our conversation………my learning for today…..

Suki has been speaking to Bee keepers about the intelligence of bees. When they’re allowed to create their own shape hive the shape has folds and curves just like the human brain 😳……the stories she told me were fascinating. I couldn’t type quick enough. A meeting between a neuroscientists and a bee keeper would be wonderful…….

So back to today………Suki is making a film and one of the chapters is about the experiences of dementia, what its like to experience dementia and live with it……

We started off by Suki recording me answering her questions…..one of which was about the title of my book and why it was chosen…….My response was:

“By the very nature of my diagnosis, my book is about the loss of the old and the birth of the new me. It was important to show the person I was to understand the person I’d become”

She asked me many things about identity, hallucinations, coping mechanisms and the changes that have taken place along with the reaction of others. We had such an interesting discussion on identity ……

She then went and photographed various bit and bobs – my kitchen cupboards, the yellow stripes I’ve painted on my steps outside and my shed which famously disappeared when dementia was playing its cruel trick on me……she took some beautifully different photos concentrating on different aspects, like the words on the back of my photos……

And of course, I had to take a piccie of Suki…

What a lovely person with such fascinating stories to tell. I could have listened to her stories about the bees all day long…….. another wonderful opportunity that came my way, because I’ve been diagnosed with dementia……

Suki is hoping to show the film at festivals both nationally and internationally and show photos in exhibitions and hopes to complete next year……… Wonderful……….can’t wait to see the outcome….

Not everyone can stand up and talk………..

A while ago I wrote a blog entitled “Not everyone’s a Wendy” due to someone in an interview commenting that not everyone can do what I do. Well of course not and I can’t do what other people do…….🙄……..we’re all individuals without dementia and nothing changes with dementia.

However, todays blog is along a similar line. There’s been much talk recently of the same people being given air time to talk about dementia; to stand up and talk at conferences and events about our experiences. Well my response to this is:

“Not everyone can stand up and talk in front of an audience”

Courtesy of my dear friend Google……

Just the same as people without dementia……not everyone likes to do that or has the skills and confidence to stand up and have people staring at you and listen to what you have to say. Just because we have dementia doesn’t suddenly mean we all have the same skills…..

However, for those who would like to stand up but don’t have the confidence, we should encourage them and find different ways to support them and allow them to be included.

My peer support group in York, the wonderful Minds and Voices are a great example of this. Many would not have the desire or the confidence to stand up and speak on their own, but would like to be part of something, part of the excitement.

So recently at a research event in York, I first asked Eddie and Elaine, who do have confidence but need a tiny bit of encouragement, to come up on stage and join me and say a few words at the start of our conference.
Then after lunch the whole of Minds and Voices came on stage and because we were all together, those who wouldn’t have dreamt of doing something like this, felt comfortable. They weren’t under pressure to speak, they were with friends, and each and everyone said something. This enabled everyone to experience the applause and gratitude of the audience. Within the group we have people at various stages…….

It made the day special and they felt good about themselves.

Another recent example was at the Admiral Nurse event in Oakham. Me and Rachel Niblock were due to be on stage and chat about the value of Dementia Diaries. However, another woman with dementia came to the event from Derby. When Rachel asked if she wanted to join in the chat on stage with us, she panicked and was saying:
“Oh no, I can’t stand up and talk in front of an audience”.
We assured her there was no standing as we’d be sat together and I said that if nothing came to our mind, we’d simply look at Rachel and she would come to our rescue.
As it turned out the woman had lots to say because there was no expectation and no pressure.

So often it’s a case of teaming someone up with a buddy to make them feel not alone and to see it as fun. Or including many people on stage to make it less scary.

That’s why I also encourage people with dementia to join twitter. It allows them to speak out silently. They don’t have to say the words, they can type them at their own speed. It’s given many the confidence to then speak out more.

No two people without dementia are the same, just the same as no two people with dementia are the same.

Yes I enjoy speaking at events and conferences. I’ve said on many occasions how all that stuff is my suduko. My way of keeping my brain engaged in different conversations and environments. Sometimes 1 speaker is all that’s required.

But If events and conferences want to hear from a different selection of people then they need to think differently about how to include and encourage…….it’s not difficult. Some things just take a bit more thinking and planning……

Visit to my least favourite place…….

I went to visit my opticians last week. It hadn’t been that long, only a few months, since I been for an eye check, but I knew things weren’t right, so thought I just needed new glasses.

The optician was wonderfully thorough and very smiley and nice…..but the outcome was that he wanted to refer me to the Eye Clinic at Hull Royal Infirmary just so they can check more fully🙈😱…….

Anyway, I thought it would be a while before I heard, but they rang me on my mobile the next day and left a message to call…….for those that know me, you know I don’t answer my phone……in fact, I thought Hull Royal knew that after my last escapade with them…….but apparently those minor details don’t get picked up across departments🙄

I wasn’t seeing my daughters for a few days…..and they kept ringing and leaving messages……I then began to think that they would discharge me if I didn’t return their call after the third call🙄…….As luck would have it I was with Rachel Niblock after the third occasion so asked her if she would mind ringing them for me. She duly did and it ended with me getting the appointment for last Friday.

Now excuse me for being picky……but why oh why does the NHS assume everyone can answer a telephone? Why don’t they offer other options to contact? I’m sure I’m not the only person on the planet who lives alone and doesn’t like answering the phone🤦‍♀️

Email, txt, spring to mind……there’s other alternatives……doesn’t ‘cost’ any more as far as I’m aware. I persuaded one department there before to email me, so my email must be recorded somewhere on my notes?

Come on NHS – I know you’re all stretched, I know what a wonderful job the majority do, but what would have happened if I hadn’t been me? If I’d been someone who simply ignored the messages because there was no alternative and had given up? What would have then happened if my condition had worsened and I’d been admitted for a worse condition and taken up a hospital bed? ……simply because there was no alternative offered to the phone?…….

Anyway, rant over…….

Sarah was able to take me to my appointment so off we trundled In plenty of time last Friday. We arrived and decided to get a cuppa in Main reception before walking over to the Eye Clinic. Sarah had never been to the hospital before and her first reaction when walking in the main entrance was …..

”Oh how oppressive’……

We didn’t come across any smiley faces, either on the information desk (where you’d most expect it) or the tea lady (where I’d definitely expect it)…….we wandered over to where I’d been told to go ‘The Eye Clinic’……we followed signs – notice on the lift said ‘eye clinic, 1st Floor’……..only to be told I wasn’t on that list – we were sent somewhere else and it turned out I was in the A&E eye clinic 😱 – good job I didn’t know that and very good job we’d arrived early.

We finally got to the right place – a lovely airy open space with pictures on the wall AND all the staff were smiley – what a difference to main reception. I was soon called in by a Healthcare assistant who turned out to be the nicest person I’ve come across at the hospital ever…..she was smiley, she explained, she chatted, she was respectful – wonderful.

I was then called in by the doctor who was equally nice and equally smiley, listened, explained  clearly what had happened and spoke to me not Sarah.

What a wonderful department – maybe the environment that staff work in makes all the difference. The Main entrance is chaotic, dismal, oppressive and unfriendly looking. Maybe that’s why the staff are the same………very sad for them and us……….

A smiley face can make all the difference…….