Category Archives: media representation

Working with a wonderful video artist……

I’m not sure how long I’ve been working with Suki Chan, feels like I’ve know her forever. She’s visited my home a few times, each occasion recording inspiring footage for the her work and my words to go with the images…I must have written a blog about each of her visits. I so enjoy working with her because of the uniqueness of the completed work as you will see from the video….but it is only viewable for 1 week starting today…

We had some wonderful news the other day, as this particular piece, entitled Hallucinations, will be viewable for one week only starting today – and then it will be exhibited physically in the gallery at Bluecoat (Liverpool) next year – with the full project CONSCIOUS  (including the new film we are making now, Fog in My Head).The music chosen by Suki had me mesmerised and felt perfect for the piece. We’ve been working on another one that will be released next year too….here’s one photo she took of me looking out of my front window towards the old paddock…hidden by the leaves this time of year…..

There’s also an elderly lady, Pegeen O’Sullivan, the daughter of Irish novelist, Liam O’Flaherty, also on the film and is adorable. She also no longer as fear, so I instantly  felt an affinity with her…

It’s 15 minutes long and I love it….you can watch and listen here…..

You can either read about it via clicking the link

or for those who don’t like clicking links, here’s the words…

HALLUCINATIONS is an immersive journey into the personal experiences of two people who are living with dementia, juxtaposed with the perspective of two carers.

The film reveals intimate details that convey how dementia changes perceptions – resulting in hallucinations, altered experiences of time and sense of identity.

The 2 channel video installation invites us to enter into the reality of Pegeen O’Sullivan, the daughter of Irish novelist, Liam O’Flaherty, who currently lives in a care village in North West of England and Wendy Mitchell, who wrote her first book, after being diagnosed with young-onset dementia at the age of 58.

The film transports us to their interior worlds, their personal journeys and perceptions of reality. We are offered an insight into Wendy’s daily coping mechanisms in her home – photos adhered to the door of cupboards so that they can be identified as cupboards rather than protrusions from the wall.

Old memories when recalled appear as present reality, dead relatives reappear in their homes; what would be unsettling for people without dementia, may in fact bring comfort and security for those with it. The intimate perspectives, dilemmas and hopes for the future, revealed in HALLUCINATIONS, offer a fresh and startlingly honest investigation of what it feels like to have dementia.

The Islington tunnel, a grand piece of Victorian architecture, becomes a visual metaphor for the dementia journey.

How do mind-altering diseases such as dementia de-stabilise our understanding of reality? And conversely what does this tell us about our own understanding and perception of reality?

HALLUCINATIONS was filmed in Belong care village in North West England, Wendy’s home and the canals in London.

The textured soundtrack is composed by Dominik Scherrer, winner of the 2014 Ivor Novello Award.

HALLUCINATIONS was commissioned by Science Gallery Rotterdam and Bluecoat, funded by Arts Council England. Research and development supported by Where the Arts Belong, a partnership between Bluecoat and care provider Belong, funded by Arts Council England and The Baring Foundation.

HALLUCINATIONS is the second film from CONSCIOUS, Suki Chan’s multi-platform project bringing together the diverse, subjective perspectives of scientists and ordinary people, whose stories unwrap layers of thinking and preconceptions about individual and collective consciousness.

A revisit to a podcast I made for the Guardian…..

I was looking through my blogs the other day and came across this one, one of my favourites as I’m in conversation with my lovely partner in writing, Anna Wharton. It was soooo nice to hear us chatting together that I thought I’d share it again…..I forgot to look at when we did it but it must have been 2/3 years ago… I think…..🤔


I’ve had some wonderful opportunities to promote my book through sources that would have been out of my reach if it hadn’t been for my wonderful people at Bloomsbury

Released on Tuesday was a podcast made for the Guardian with Claire Amitstead featuring me and my partner in crime and now amazing friend Anna Wharton. We were in conversation about how we wrote the book. It was lovely to hear Anna’s voice as we live at opposite ends of the country so I only ‘hear’ her voice in my head through our daily whatsapp chats.

The conversation also stresses that the book is about so much more than dementia. It’s about life and life choices when we’re faced with difficult situations in our life.
Link below. The first 15 mins is Neurolgist Jules Montague explaining dementia and then it’s us…

A Recording I made recently…..apparently…!

Whenever things like these make an appearance on Twitter, of recordings I’ve made, I listen to them as if for the first time. I have no recollection of recording this, but it’s certainly me…I don’t know when or where we were or who the people were..but it’s clearly my voice, my words, words I’ve said a thousand times before….

From the blurb on the web site, it appears I recorded this outside the  village pub in the garden. It’s a series of podcasts called ‘Dementia and Me’, recorded to highlight the individual experience of people affected by dementia, and I’m just one……there’s many other good ones…..

It’s so strange having no recollection of something that apparently I recorded quite recently.

You can listen to it here… starts off generally and then comes my interview…..



An Extra blog with an Extra plea…….

Yesterday we had the terrible news that the BBC is making massive cuts and one of these cuts is the axing of BBC 2 Victoria Derbyshire programme.

It’s campaigns, it’s revelations  & commitment to the public having their say made it pretty unique in daytime TV. It was honest, real and truthful and amongst other subjects gave dementia a regular voice.

This programme is very special to me as it introduced me the the wonderful journalist Jim Reed.

Over five years ago, at the time of the release of the film Still Alice, the BBC asked me, Keith Oliver and Christopher & Veronica Devas to film our lives for a month using a camcorder. From the footage we recorded, the wonderful reporter, Jim Reed, produced this short film….how different I was then compared to now…

This was just after my diagnosis and I was still working full time. From making that film, I made 3 wonderful new friends. We’d been brought together through a diagnosis of dementia. Our paths would never have crossed if it hadn’t have been for the diagnosis and I’ve made so many more wonderful new friends since. Every cloud…….

Then 3 years later, back in 2017, we were asked to make an updated version to go alongside this one and here’s the link to that…..what a difference 3 years makes…..

Apologies if my overseas friends can’t view the links, but fingers crossed…..

Now the BBC in their wisdom have decided to axe this wonderful programme. Victoria Derbyshire gave dementia a voice, revealed the sexual abuse going on in football – just 2 of many many important issues, raised and reported on with dignity, truthfulness and openness … unless we campaign, it will automatically disappear.

But Jim has asked previous participants on the programme to appeal to the BBC and I’ve written the requested email. But you can help too by signing this simple petition that will only take a minute. We’re trying to get as many signatures as possible simply to make the BBC reconsider and see the support this programme has….



A wonderful animation that includes me by a talented student….

Some emails that come into my inbox make my day and last Thursday I arrived home to one that made me smile after a wonderful but exhausting 3 days with my playmates in London…….

It was from Thomas Purdue……now initially I couldn’t for the life of me think who this person was….he’d sent me a link to a film I’d been involved in. I had to go back to him and ask how I knew him and to tell me the history of our connection…….

It was then tiny sparkles of memory floated around…..Thomas is a student doing a masters in animation and he’d asked me to record some words for film was his major project throughout his course, which meant taking it through the whole production process. He said

I decided to make it after my partners grandmother was diagnosed. We realised the severe lack of understanding we all had as a family for life with dementia.
Well his finished animation is now ready for the world and I can’t wait to share it with you. I think it’s wonderful. The voices are real people, with real experiences and I quite like the animated interpretation of me – especially the red top 😊
He’s sending it out to charities now to use and hopefully raise some awareness with something a little different from the leaflets. I sincerely hope they use this talented students kind offer……here it is….it’s called Remembering Dementia……..

The ‘Casualty’ Debate……

Now that the BBC TV programme ‘Casualty’ storyline is in full flow, it’s naturally raising many questions and much debate, which is good.

When I became involved, I realised and especially when it became known that I was involved, I knew there would be much scrutiny and comment. I would have been disappointed if there hadn’t been.

I knew that whatever I recommended would not suit all. If I’d have suggested they go for the ‘ideal’ and had a wonderful diagnosis process, and then a wonderful work scenario, then some people would have said it was pie in the sky and far from reality. If I’d have gone with the reality that the majority of people experience, I would have been accused of suggested the purely negative experience. So instead I suggested a balance.

I thought it should show the reality of people’s experience as well as some hope. With it being situated in a hospital, the storyline affecting 2 of it’s main clinical staff, husband and wife, Charlie and Duffy, it was going to be even harder to please everyone.

The point the storyline is making is how a husband and wife facing the challenge is totally separate from their clinical roles. They are still ordinary people facing dementia and their clinical knowledge is overtaken by their personal relationship and feelings.

The storyline, thankfully has many, many months to run yet and it’s success will shine or fade as the storyline unfolds and twists and turns are revealed.

People seem to think I was the only person consulted, simply because it’s my name that’s made the headlines but there were many others whose views were just as important. The lovely supporter, Suzy Webster and Hilda Hayo from Dementia UK to name just 2. Each would have given a view and our views together make the storyline evolve.

Why things happen in programs is so fascinating, and are rarely known to the audience so I’ve been in a very unique position which has given me extra knowledge and therefore extra insight and understanding.

So yes, you may think some things shouldn’t be happening, but ask why? Are they showing a different side of the characters. Hopefully as the story unfolds it will bring in more followers as all I ever wanted by being involved is to get people talking about the subject.

And after all, a good storyline is only as good as the actors playing the parts…..

We all know that newspapers don’t always get their facts right and the biggest bloomer that even I noticed was my age in this article….🙄

A verrrry long day, but filled with lovely things…..

Sometimes the type of programme I’m invited on might not be my cup of tea or one I watch but sometimes you have to go out of your comfort zone to reach a different type of audience and last Thursday was one such time.

On Wednesday, me and my daughter Sarah trundled down to London in preparation for being on ITV’s ‘Lorraine’ programme on Thursday morning. With it being the Easter Holidays, Lorraine wasn’t presenting and instead it was the lovely Christine Lampard who use to front the One Show some time ago. I was also scooting back north to do a talk and book signing at Waterstones in York in the evening😳…….but an empty Easter weekend followed, so I can hibernate after……..🤪

My publishers had organised everything, so it was very simple for me, as Kate had booked all the tickets and sent me timings for everything. Me and Sarah sat happily on the train soaking up the Yorkshire Tea as we were travelling with Hull Trains….

The car was picking us up at 06.55 the following morning hence why we had to stay overnight!……..

We had a wander down Tottenham Court Road as it was a warm and sunny evening, but being London it was also rammed with people, so got something for supper before heading back to the hotel.

I had a sleepless night as the air con noise or something making a continuous noise kept me awake and I couldn’t work out where it was coming from or to switch it off🙈😱 and the radiator was on which I didn’t realise before it was too late to txt Sarah……….so not that good start to a long day 🙄

Anyway……Sarah came to my room ready for the car picking us up at 06.55. It was a grey misty London that greeted us……..

We arrived at the studio to find lovely friendly people…..

We were shown straight into make up first, which for me takes a nano second 🤣…..but Sarah enjoyed being pampered

We then went through to the green room where they earned several brownie points as they’d got Yorkshire Tea in…..❤️⭐️⭐️⭐️⭐️⭐️⭐️and immediately got me a cuppa. Several people came and said hello to us before Kate from Bloomsbury also joined us. She was chief photo taker, so had a very responsible job😂 but had also remembered to bring a book for me to take on set😇…….

The lovely Rosa, who had FaceTimed me came along and went through what we might talked about. Another cuppa tea arrived and before we knew it me and Sarah were being taken into the studio to be met by a lovely hug from presenter Christine Lampard. The people on the floor were so friendly and smiley. We were shown to the settee while another item was being shown.

Now this programme is very ‘celebrity’ dominated so it means they said things a tad extreme like I count Emma T and Julianne Moore as friends🙄 and they clung onto my involvement on ‘Casualty’ bit as well – but it’s that sort of show. I did have influence over language though so no mention of ‘suffering’ and through that I was able to reach a different audience which was my aim.

Christine seemed so genuine in her comments. Her grandfather had dementia and after reading my book could now understand why he couldn’t remember her name etc. Havn’t a clue what we talked about but I remember how kind people were and how smiley. Christine fed me the words that produced the sentences from my mouth. Any random question would have left me stumbling. That’s always the sign of a good interviewer for me – the person doing the briefing has to be good at their job.

I had a lovely time and of course we were able to get a piccie before we left…and they gave me a goodie bag, the best of the contents was the emergency power charger for my phone!

The car took us back to the publishers, Bloomsbury, where all my lovely people, came to say hello and Emma had stopped off to get me some amazing flowers to take home 😍

You can see it here:

On the train back, a woman opposite saw us and said to Sarah, “I saw you on telly this morning’ and many kind things…..

I sat there, once again in this surreal world, feeling very lucky in this bitter sweet situation.
Now just have to get home and into York ready for the evening at Waterstones but I’ll do a separate blog on that……

My daughter telling her side of our story….plus…

Yesterday was the turn of my daughter Sarah to be in the spotlight for a change. As I said on my blog yesterday (Ithink!), both sides of the story are equally importation very different needs yet both needing support; no one side is more important than the other. So yesterday Sarah was giving her side of our story on Radio 4’s Woman’s Hour with the lovely Jane Garvey.

Sarah was soo nervous she arrived at my house 10 minutes early so I’d only just come downstairs from getting ready 🤣…..we arrived at the station in plenty of time to have several cups of tea but were very good and just had one😇 well I had one and Sarah had coffee (😱🙈🤐) ……….once we were on the train all was right in the world as we both had tea……😇

No trip across the Humber bridge today as we’d driven further down the line to pick up the train but there was the most amazing sunrise followed by torrential rain a few minutes later. Which just kept on coming……..!!

So no piccie of the sunrise but a selfie instead😊

Kate from Bloomsbury was meeting us at Kings Cross and we all piled into the taxi for the short but always long ride through the London traffic to the BBC. I wasn’t there just st for the ride today as I had a podcast to record with Delicious, the food magazine. So at least I felt I was earning my keep as Bloomsbury were paying for us both to travel.

Anyway we got to the station and Kate and then the taxi were waiting for us. Once we got through security Sophie and Paula met us in reception, and took us up to the green room and the waiting cuppa from Sophie😇. Jane Garvey soon joined us and after hugs and a catch up time for piccies☺️

They surprised me asking if we had to rush off as they’d like to record something with Sarah for the podcast☺️ magic😊

Sarah was whisked away and me and Kate were able to listen to the programme …..

Sarah was sooooo nervous……bless……but I knew Jane would look after her.

Sarah was second on……after a child poverty piece – it seems wrong that in this day and age, in this rich yet messed up country, that we have children and families going hungry. 😞

Jane played a clip from my interview first and asked Sarah how she felt after hearing me. They spoke of the changes in my personality. Sarah spoke of the grief at the loss of my old character but also the joy at all I’m doing now.

The subject of her nursing skills being a help or a hinderance to supporting me. Sarah spoke of how she often thinks she is doing right, especially when we wrote my lasting power of attorney. Sarah assumed I would want the opposite because of her nurse training.

At the end of the day, I have capacity, and Sarah let’s me get on with things, but is always there when I need her.

Sarah might have been nervous but she was amazing sooooooo amazing. You can hear it here:

Sarah is about 10 minutes in and both of us are at the end……..😊

Once the programme had finished we recorded an extra piece with us both in conversation with Jane…….she is such a wonderful person…..😊

Kate then surprised us as Emma had sorted a joint interview for BBC Radio London 😊 straight after our time here…….. Sarah just nodded 🤣

So after a cuppa tea we went across to BBC Radio London and quickly shown upstairs where we waited a few minutes..

We were taken to the studio pre record an interview with Jo Good. I apparently was on her programme last year for my hardback version😳🙄 funny, I remembered the waiting area ……must have a piccie or something……..

This time me and Sarah were doing a double act😊. Jo was so nice, so smiley. Havn’t a clue what we talked about except Sarah said Jo mentioned how I hadn’t changed at all in a year. Sarah made the point that I’ve changed in many ways and how it underplays the daily struggles by saying I’m the same – glad she highlighted that, huge brownie point😊

So for another piccie……

We went back to Bloomsbury. We had a little while before the final recording of the day so me and Sarah went to hibernate in a café for a while and had lunch, well me another top up of tea🙄

We headed back to the office where Gillie from ‘Delicious’ magazine podcast was waiting for me.Another nice interview followed by my last cuppa tea in the conservatory where Sarah was waiting for me but not before a last piccie with Gillie from Delcious…

The whole gang who look after me at Bloomsbury popped down for a hug and catch up. Emma, Hannah, Jasmin and Alexis, all coming to say hello..wonderful

Totally wiped out, exhausted and running on automatic, we ambled our way in the fresh air back to Kings Cross.

I might have been running on empty but I felt very lucky to have the opportunity of such a wonderful day………..☺️…….and because today was snuck in as an extra, I’m back down in London again tomorrow……..😳🤐😴….

Collaboration with the BBC TV ‘Casualty’ Programme……..

Last week my involvement with the BBC TV ‘Casualty’ storyline was mentioned on “This Morning”. You can listen to the few minute interview here

One of the main characters, in this long standing hospital programme, ‘Sister Duffy’, is finally diagnosed with  Dementia. Although, I’ve been involved for some time, I couldn’t write a real time blog about my meetings as it was top secret in the TV world.

Anyway, now the story is out, I can put together  the blogs I wrote but didn’t publish (big letters next to them of DO NOT PUBLISH), to tell you how my involvement came about…….

So for me it all started about a year ago, when my book first came out. However, the storyline was already being researched with Dementia UK as well as my lovely friend, Suzy Webster, whose mother lives with dementia – and those are the ones I know about. It was at Suzy’s suggestion that they actually contacted someone with dementia. Since my book had just come out, I was in the media a bit and I imagine this was how they came upon my name.

I don’t remember how or when I was first approached but here’s what I typed at the first meeting…….no piccies, as I can’t be trusted not to share those 🤣


Well Monday 11th June 2018 was our first face to face meeting. I trundled down to London to meet the Story Producers and the Story editors. The planning had been meticulous and Beth, one of the editors had been so careful in arranging travel and the venue. Beth said in an email:

I’ve been informed by a friend that it’s a nice place and quiet on weekdays. I’ve spoken to the staff and they have assured me it’s pretty chilled at lunch times and have set aside a booth at the back for us.”

I even received a walking map from the station or they would have met me at the station and walked with me.

The perfect start.

Anyway, it was a gloriously sunny June day, probably far from the weather when I can finally reveal this blog! – (ha! Very funny as I didn’t know back then when I would reveal it)

I used the map and en route had a txt from Beth to say she was sat outside the café waiting for me. I was met by 3 lovely people in a wonderfully quiet café, with a table reserved for us at the back. It felt like we were as far away from the hustle and bustle of Kings Cross as we could possibly be. Yet outside the café was the usual chaos of the London street.

The icing on the cake was to see they sold Yorkshire Tea……..❤️…..could the day get any better……..⭐️

We sat for a couple of hours, discussing likely plots and plans for inclusion, with them making various notes and asking many questions. I didn’t type on purpose so I wouldn’t give anything away. I remember little of the conversation. What I do remember is being in the relaxed company of 3 wonderfully warm and kind people, all willing to listen, learn and contribute their ideas. “


And all was going fine, with scripts being sent for me to read and comment on, but then things started to go downhill………

Such is the world of TV, that teams change, writers change, and I suddenly felt uneasy with the way the storyline was going. All this time, I was in contact Beth Grant, the story editor, who has remained a constant during the process. She is also a lovely, lovely person. I decided sadly to end my involvement and I thought that would be the end of it. Many promises were made that never came to fruition. Can’t remember what, why, the timescale or the detail, but remember feeling very sad.

Then a few months ago, (probably 🙄😂)I received another email from Beth asking if I would reconsider joining them again. Amidst many changes, she thought I could, once again, influence the writers.

And so it was that we met once more in London at the same café that served Yorkshire tea 😍

Someone new with her this time who had also read my book, one of the writers. I felt a different atmosphere from the last few months, a need to get things right and hopefully listening to what I was saying. I didn’t type much on this occasion as the proof would be in the scripts I was sent as to whether any notice was being taken.

As the scripts came through I began to feel happier. I didn’t and probably won’t meet the actress playing Duffy, which I find sad, but then someone said to me how some actors prefer not to meet people direct. I just hope she’s done lots of homework on how to play someone with her type of dementia. After all a wonderful script is only as good as the actor playing the part.

The storyline will go on for many months, I’m pleased to say. What I did learn was how complicated the TV world is and how the unlikeliest events can change the progress of the script, totally unbeknown to the viewers.

There will always be people who don’t agree with certain episodes or certain bits, but knowing what I know now, I can see why some things happen as they do. Overall, I’m very happy with the way it turned out, the twists and turns, the ups and downs. As for whether, if, or when it will all end………well…………..keep watching…….there’s a long way to go with many good scenes on the way…..and it will be just as much a surprise to me by then as to you………

Charity Film Awards…..

Ages ago…..must have been last year but not really sure🙄….the Alzheimers society sent an amazing duo to capture me on film. The very talented Nicola Leddy was behind the camera and put the film together……anyway, it was nominated for a Charity Film award. Apparently I asked people to vote 🙄……….well the good news is…….


Nicola emailed me the good news and I had to ask her to send me a link to remind me what we’d filmed🤪……..

The new favour I now need to ask you all is to vote again as there’s a ‘People’s award’ that any of the finalists in any category can win.

Me and Nicola are going to the award ceremony in London next month. What I hadn’t realised when I said ‘yes’ was that it was a ‘black tie’ affair…….😳 ……..I don’t do posh…..I can’t do posh………so we agreed to be the ‘rebels in the crowd’ and dress as we felt comfortable. Considering I only have a certain set of clothes you certainly won’t be able to miss me.🤣

Anyway, I said I had a favour and here it is. If you like the film could you vote for us again pretty please? Here’s the link….

Thank youuuu…..🙏🙏🙏