Our Right to get Out and About…..

Yesterday I was in York. I’d snuck this in last minute as I’d cancelled a meeting in London due to being there the following day as well, but couldn’t resist adding this extra one in……🙄

A while ago there had been a similar meeting in York of 3 DEEP groups from Bradford, Scarborough and my playmates from Minds and Voices – all people living with dementia. Last time I’d met Ian Macmillan, the voice behind Yorkshire tea, but this time it would be Ian Beesley, superstar photographer and Tony Hubbard, famous cartoonist.

The aim was to design a traditional banner for us in the style of Trades Union about our Right to get out and about.

It was a beautiful day as the taxi took me past the Westwood and yesterday the town cows were finally let out to roam for the duration of the summer. They must have been very excited to be out after being inside the whole winter………

And the view from the bus as we trundled through the Wolds looked equally lovely.

I arrived to find Philly setting up and the tea had just arrived👍 It was soooo nice just to be a playmate today and  share the pressure of the day.
Think I was probably on my 3rd cuppa when playmates from Minds and Voices started to arrive, followed by the Scarborough gang and the folk Bradford. Photographer Ian Beesely soon arrived followed by Tony Hubbard the cartoonist…..

Some of the funding for this project has come from the IDEAL project at Exeter University….and started last year when travelling was becoming a real issue

Ian and Tony then took over the session and mentioned that their third musketeer, Ian McMillan (the Voice behind Yorkshire tea)was at a pie eating competition😂🤣😂🤣………..

We were here today to discuss ideas about the banner and then about the unfurling of the banner at a prominent place in York during Dementia Action Week………

The banner will be ‘The RIGHT to a grand day out” – 2 meters wide and 3 meters high😳. It will hopefully be double sided. There will be smaller versions, postcards and a digital version…….

Ian, Ian and Tony have done the ground work and brought a rough outline today for us to comment on. One side will deal with the negative aspects of getting around and the other side will be the positives…..

At the top we’ll have YORKSHIRE DEEP with a shield with a flourishing rose on the one side and a withered rose on the other……4 cartoon images by Tony in each corner of traffic  jam, stuffed bus etc……….This is a mock up and starter for 10 but by no means the finished article..

We immediately said how ‘Yorkshire DEEP’ should be replaced by ‘Dementia Voices’

Front of the banner will be positive images and have Yorkshire images…… for example, Yorkshire pudding and ice cream, Yorkshire tea and a pint of beer……….🤣😂🤣……………but other ideas were flowing from the group.

The railway lines on the front are easy to navigate, whereas the lines on the back are confusing……

There was loads of ideas……..and disagreements……and discussion……

We then went round discussing the venue for the unfurling………York Station, York Minster or National Railway Museum….or all three……….and I said we need Radio York, York press and Yorkshire Post, BBC there…..Ian is on the case…..

Weds 23rd May is unfurling day……during Dementia Action week and will be in York…

We were then showed a photo of 2 miners…..and I asked if it was Tony and Ian’s Calendar pose🤣….they even posed to show the similarity….🤣

He then read out Ian Mcmillan’s lovely poem that he’s written for us …..

And then showed us a copy of the idea for the chat book in the format of the old type Yorkshire magazine…….and our Rita would be on the front.

It would contain lots of the photos we had taken during our day our last year and the cartoons that Tony created.

We need to include a piece about each individual project that each individual group did….Scarborough and the Blue Badge scheme. Bradford and bus timetables, and Minds and Voices and our train travel………

We were all beginning to flag so time for lunch……..or for me….a cuppa tea…..

After lunch there were 3 things on offer – talking to Tony the cartoonist about any issues we’d had travelling, talking to Ian about any more thoughts on the banner and talking to Philly about Dementia Diaries……I really can’t do decisions, I need direction, so joined Philly to promote the diaries and we ended up with 4 possible new members, including my friend Liz from Scarborough.

Because I don’t use the phone, I usually send Philly my words and she records for me. Today, Philly allowed people to have a go on her phone and because she set it all up on speaker and dialled the number I could record as that’s what me and my daughters do if they have to make a call on my mobile – they have it on speaker.

They’re trying to get the diaries global so that people across the world can record their message. Tomo, who I met from Japan is joining and there’s a university in America which is really keen to bring the diaries to the States! – brilliant.

It was a really good day once again, but very tiring……couldn’t resist this last piccie as I was waiting for my bus near the station though………

Lunch and Learn session at Dove House Hospice…

Yesterday I was at my local Hospice. The nicest thing about this is that it’s now where my daughter Sarah works as a nurse. It also meant she could come with me!

I’d been asked ages ago if I would speak at one of the sessions they hold monthly, open to any internal and external health and social care professionals with a view to sharing and learning from each other.

The response was such that it was fully booked before even going out to advert so they’ve also asked me to do another session in May

Over the last few months they’ve been working very closely with Humber NHS Foundation Trust with regards to the care and support of people living with Dementia. This came about as Maister Lodge (an acute assessment unit for people with Dementia) is currently using a Unit at the hospice whilst their own unit is being refurbished. So, in order to make the most of this opportunity, they’ve been using their regular Lunch and Learn sessions to highlight and discuss issues around dementia care and how hospice and mental health services can work together better to improve services for people with dementia.

So a wonderful opportunity….

The hospice movement around the country can play such a large part in the lives of people with dementia, but for that to happen, local NHS Trusts hase to see them as that valuable resource that is currently missing. Not only Trusts though, the public have to see them, not just as a lovely place to die, but as a calm, wonderfully kind resource from the point of diagnosis. Sadly it all boils down to finances and this is where NHS TRusts must step in.

Anyway I digress ……

Sarah drove me her familiar route to what is her workplace only to find the car park absolutely chocca! Luckily they’d organised a space to be kept free for us.

Dr Anna Wolkowski, CEO of Dove House happened to be in reception as we arrived, so after a hug and a catch up we made our way into the meeting room where a room full of people seemed to be mingling…….my Twitter nurse friends, Sue and Linda came and said hello to me and Sarah…..

Before we started, Anna surprised me with a lovely gift……..a box of Yorkshire tea and a mug with the words, ‘Put kettle on’ – magic……although I do seem to be getting a reputation as I also got a box of Yorkshire yesterday😂🤣😂🤣 I’d also had a tweet from one of the Sisters saying ‘Kettle’s on’ just minutes before I arrived😂 …….

Anyway we sat and let everyone have their lunch before Anna introduced me with the kindest of words….

I then talked for about 40 minutes before finishing off with a reading from my book.
I did start by saying how I couldn’t wait to hear what I was going to say as I hadn’t a clue what I’d written at the weekend….🙄

I spoke of many things, including language, the importance of routine, adapting, disabling, support and much more. I gave my description of what it feel like to have dementia and as well as the necklace analogy, I also said:

“When you’ve passed your test you drive automatically without thinking, but when you’re learning you have to take each manoeuvre step by step and think about it. Dementia has taken me back to being a learner driver an I have to consciously think of how to do everything step by step.”

The final reading from my book, about Billy the Cat, ended with laughter after such an intense talk, which is always a nice way to end……

The response to my talk was wonderful. They asked many questions and made many observations they hadn’t realised including the importance of routine and organisation in the workplace to make people feel calm.
Sooooo many people came up to me afterwards that it was overwhelming but lovely at the same time.

At the end, I couldn’t resist a photo of a board they’re putting together which goes with my book. The publishers kindly produced postcards to go with my book and on the reverse was space to write ‘the memory you least like to lose’. Well, post cards are fast running out and Dove House has replicated the idea and today started a board…….Amazing…As people with dementia we lose our precious memories every single day so this idea just gets people thinking………

As I got in the car with Sarah to make our way home, I felt exhilarated yet exhausted.

I’m just so lucky to have all these wonderful opportunities come my way….

Speaking to Social Work Students….

Now the key word here is ‘Students’……I LOVE speaking to students – the people who can change tomorrow…….

I was asked by Suzanne Wightman, Admiral nurse trainer from Dementia UK, to speak to students of Social Work (degree and masters level) along with Maureen Winfield, a carer, at a session at Huddersfield University yesterday.

There was also due to be talks from Katie Dixon, from Admiral Nursing and Ruby Anthony (a social work student)

It was a lovely sunny day yesterday and the sunshine always lifts my mood. Even the Westwood looked liked its sunny old self instead of the wet and gloom of late

Suzanne had planned to meet me and Maureen at Huddersfield train station and then take us for a cuppa before we started.👍😇

The trains even behaved themselves as we trundled past a sunny Humber….

The title of my talk was ‘Reality as opposed to Theory’……so much theory is learnt by healthcare students and researchers through textbooks and theory and not enough of the reality from people they’re going to be caring for in the big wide world.

I’ll get off my soapbox now……🙄

Suzanne and Maureen were waiting for me and true to her word we drove to the uni and sat and had a cuppa while Suzanne parked the car. Maureen told me about Felix the cat who lives at Huddersfield train station and raised funds for Dementia UK! Wonderful!

We then made our way to the lecture room and were met by a full room of students.

Suzanne started off the afternoon by talking about how Dementia UK helps families face dementia. She said it’s:
“All about making a difference”

She showed a lovely slide

It was then my turn and I said loads…including

“……..the academic world often fails to recognise and understand fully the reality of living with dementia, and how can you, as Social workers, fully appreciate the challenges of daily living without listening and reading about the reality from myself, a person with dementia, and from a supporters perspective, as you will do today from Maureen. Both perspectives are equally important and I often describe them as running parallel to one another and rarely meet, but nevertheless so very important to hear from both.”

It was then Maureen who spoke about her caring role and she brought a lovely photo of her and her husband, which she had beside her on the table.

Her Admiral Nurse, Katie told her to ‘Believe in yourself’

Maureen told their story – how her husband, Michael’s experience of dementia was a bombshell. How difficult it was to get help and advice when he was diagnosed in 2014 – sounds familiar……

Her daughter said “Mum, If you go down, then the ship goes down”….and she realised she had to find support. Her daughters have been wonderful and she has been amazingly lucky to have her own Admiral Nurse, Katie. Here in Kirklees they have 9…..the second highest in the country after Kent.

Maureen gave a wonderful talk and how she had to learn so much.
Michael used to think he was having an affair with Maureen, his wife of 64 years………he used to feel guilty and want to go back home to his wife……she couldn’t go to bed at the same time as him as he didn’t think she was his wife…….he was looking for his young bride of 21 and felt guilty spending time with Maureen……….imagine how sad that must have been for Maureen, but she had wonderful coping strategies, because what was the alternative…?
She’s a great advocate of the Herbert Protocol as Michael had a strong desire to go back to his family home.

Just because he is in a nursing home doesn’t mean I don’t love him any less…..we just have a different relationship. Her story was so powerful, showing how we regress to a different time in our lives……..

I felt like today I met a wonderful lady in Maureen……

It was then the turn of Admiral Nurse Katie Dixon…. She is a mental health nurse and began supporting people with dementia from the age of 13 at the local day centre for people with dementia.

Sadly, Katie started to feel unwell and had to suddenly leave, but Maureen said she is a wonderful Admiral nurse……

Finally it was the turn of student Ruby talking about Person Centred Care…….

She spoke of life history and responding to the person with dementia as an individual and educating the family to understand how to understand the behaviour of their loved one. Assessing what a person CAN do…………wonderful to hear this from a student………as social workers they need to avoid leaping into answers……be comfortable with silence to give the person time to find the right words….Ruby has had care home staff say how someone couldn’t communicate but she knew if you look you can find a way…….she spoke to one person through her stuffed dog………there’s always a way………
They also have a duty of care to those that care and help educate or whatever is needed – again, looking at the individual with individual needs.

After hearing student Ruby speak, maybe the future is looking brighter…….

Maureen gave me a lovely present at the end. Michael loved the feel of wood and enjoyed wood turning and she gave me one of the pieces he made …..how kind was that….
And, we both got lovely flowers and I got an extra pressie of a box of Yorkshire tea…….🤣😂🤣 wonderful……….

Invitation to appear at the Hays Festival…….

I’ve always wanted to go to the Hays Annual Festival – Hay on Wye, is not only beautiful but the festival itself is world-renowned and described as a ‘marvellous literary experience’……

So imagine my amazement …….the first chance I have to go and I’ve been asked to go on stage and talk about my book, Somebody I Used to Know, for an hour with the wonderful Guardian journalist, Decca Aitkenhead……who would have thought…..

I’ll be there on Tuesday 29th at 7pm on the ‘Good Energy Stage’…….wonderful to be on the programme on the same line as the author Margaret Atwood and Poet Wendy Cope….. ☺😍

Amazing………maybe I’ll even see some of you there……..

More details can be found on their web site….

https://www.hayfestival.com/Default.aspx

I’ll also be at Bradford Literary Festival on the 1st July with Professor Murna Downs, Neurologist and author Jules Montague, and the wonderful author Simon McDermott, son of Songaminute man…….

https://bradfordlitfest.ticketsolve.com/shows/1173587403

and finally at the Festival at the Dukes THeatre in Lancaster, on stage with Guardian journalist, and founder of John’s Campaign  Nicci Gerrard – Thursday 17th May at 7.30pm…….

https://dukes-lancaster.org/?event=creative-adventures-dementia-life-ordinary-festival&event_date=2018-05-17

Now who would have thought I’d be writing a blog saying all that……amazing what new opportunities can come your way, even with a diagnosis of dementia……….motto of the day….

”Never Give Up Dreaming”……..

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😂🤣😂🤣

Addressing Directors of Adult Social Services…..

A while ago Jeremy Hughes had asked if I’d speak at the annual spring seminar for Directors of Social Services.

Apparently it’s very hard to get an invite to this as it’s not a public meeting but due to the centrality of dementia to the current social care crisis, they invited me to address the Conference in Stafford. Some of the focus of their conference will be on the Prime Ministers Challenge on Dementia and The Government Green Paper on Social Care, so only right someone with dementia was there.

I’m never sure how much of the message they listen to at these type of meetings but I was prepared to give it a go and make sure my message was loud and clear.

I’ve had 3 very enjoyable but busy listening and speaking days so I’d had a banging headache since day one – a simple side effect from the effort that goes into listening and speaking! But on Tuesday night, during my sleep, wake, sleep, wake routine of the dark, I woke up at midnight to find my head clear and bright! It felt like spring had arrived in my head after a bad storm. I almost wanted to get up to enjoy it in case it didn’t last😂…..but I needn’t have worried as I woke to find the sun has disappeared but at least the storm had stopped banging about in my head..

My taxi was on time and the first train on time…..once I got to Hull I found what I thought was my train but it said it was going to Leeds😱. I found the driver and asked him, only for him to say he needed to make a few phone calls as he thought he was going to Manchester too😳…………Obviously something had gone wrong somewhere and he came on the intercom saying he was taking the train to Manchester….🙄

I wasn’t due to speak until 4.30….it will be interesting to see how many have left before I get up and speak. I arrive at 12 so I’ll be able to see…….the events lasts for 3 days so maybe some of what I say will register as I’m at the end of the first day….

Helen Foster, Director of Operations was due to meet me at the station and look after me for the duration as I needed to stay overnight due to speaking so late.

It was very misty, murky and drizzly as we trundled out of Hull….I couldn’t even take a photo of the Humber as it was hardly visible and the windows were very dirty……..(don’t they realise the importance of clean train windows!🤣)

Anyway, got to Manchester and caught the final train to Stafford……hadn’t realised it was my least favourite train company……Cross Country🤦‍♀️ but at least it was only for an hour……

Helen met me as promised at the station, having sent me a photo of herself and then we proceeded to have a rare old adventure to find the conference centre, which entailed going through narrow flooded country lanes and into the middle of nowhere!! Good job Helen had a 4×4! We chatted happily in the car and Helen has a therapy dog which she takes into Care Homes and a children’s hospice – Sasha………….very jealous…….


Love the casual crossed legs……

We booked in and they immediately seemed to know who we were and someone came along to say hello and that she would be hearing me speak somewhere later in the year😳

Helen then earned her brownie point by getting me a much needed cuppa as I hadn’t had once since I left home😱……

We joined at the start of the afternoon plenary so we could see the venue etc. I didn’t want to type about the content as it wasn’t a public meeting and I didn’t want to put people off chatting by having my ipad open!!

As you can see from the programme below, the first speaker of the afternoon was the Minister for Social Care. the second was the Shadow Minister and the third was Jon Rouse from Greater Manchester Devolution area……after a much needed cuppa, there was Ray James, National Director of Learning Disabilities who began with a short video by 2 people with learning disabilities who basically told those present to ‘Get on with it’…..wonderful!

It was finally my turn. The audience had reduced but not by many and the room was still relatively full. Helen introduced me after stating some facts and figures about dementia.

I started by inviting them to:

Imagine yourselves being given a diagnosis of Young onset dementia………”

Then spoke of the 3 Nations Dementia Working Group and Minds and Voices course in York, followed by……

In the next 5 years huge social care change must take place so that in 10 years time, we’re proud of what the country has in place. People living with cancer aren’t shoe horned into inappropriate treatment, those recovering from a stroke aren’t shoe horned into inappropriate treatment….so why are people with dementia? Dementia lags behind in medical innovation so the need for social transformation is greater.
We don’t have innovative medical procedures to follow or a plethora of choice on medication because research has been sadly underfunded so the need for social transformation is greater.”

I ended on a personal note that hopefully struck home

I don’t want my children to be faced with the chaos of care when I can no longer care for myself and I’m sure you wouldn’t want your children to face that challenge either.”

It seemed to go down well. Many came up afterwards to say thank you. I just hope my words don’t fade and become a vague memory in their busy minds………


Me and Helen…

A Course delivered by people with dementia…..

Yesterday was day 1 of the our ‘Good Life with Dementia’Course in York, created by people with dementia, run by people with dementia, for people with dementia (supported lots by Damian)……….It’s been a long time coming as the local mental Health Team have been less than helpful to say the least, in fact disappointingly so, as they are the ones who diagnose and could easily signpost people in our direction………but for some reason they felt it not worth the effort or appropriate ……..🤦‍♀️

Anyway……..we were determined that the course was going ahead no matter what and Damian has worked so hard with others to find us a few people to start with. Hopefully, then the mental health team will see what a wonderful opportunity they missed. It’s even being properly assessed to prove if it’s beneficial. So anyway, let’s just see. Me and my playmates at Minds and Voices were thrilled to be involved and 3 of us were attending each of the 6 sessions so we didn’t frighten the people to death with our banter………..🤣

The day began with an early taxi ride into town to catch the silly o’clock bus to York. I wasn’t hoping for much of a nice day as the weather had already said it was going to be a wash out………🙈 and it didn’t disappoint as the rain was heaving down as the taxi pulled up. But I had a lovely smiley cheerful driver who chatted happily on the short journey into town.

The bus was on time and instead of going upstairs, where the windows would be rainy and steamed up, I sat by the driver and had his windscreen wipers to clear my view – ooooo and his view as well!

The driver even went round a puddle at one point to avoid turning a pedestrians day into a worse day as he walked at the side of an enormous puddle in the road…..#smallrandomactof kindness…..

Talks started in May 2017 with the local mental health team. There was so much lethargy and the Doctor in question had referred to already ‘only having an hour to cover LPA, driving issues, support for carers , and of course ‘breaking the bad news’………Aaaaargh!!!!!! If all that is thrown at people when ‘breaking the bad news’, then why is it any wonder that people sink into depression …….I feel like screaming that so little is understood by these so called ‘experts’ that people find themselves in the care of……

We cover all that from a practical and realistic point of view in our 6 week course in a relaxed atmosphere with time to ask questions, with time to ask people already living with dementia ……..

Our course isn’t under minding the medical diagnosis. It’s giving people a comfort blanket for however long they want after being discharged by the medical profession. I wish such a course had been available when I was diagnosed as it wasn’t until I found Minds and Voices that stopped feeling alone and abandoned…….

I was recently helping to deliver a session talking to clinical staff and it became apparent that when clinicians hear the word ‘refer’, they interpret the word differently….They take responsibility for that ‘referral’ and if something goes wrong, they think they could be liable and think of complaints and backlash.
Instead ‘signpost’ offers no such trepidation……it relinquishes them from all responsibility….

I’m not excusing the mental health team whatsoever, but maybe that thought was running through their heads….

We have two referrals from Dementia forward and one from the ‘Journey through dementia’ research project. They are not exactly recently diagnosed but hopefully will still benefit from the programme and the positive message – and the fun! Another two are also joining the course. So 5 people altogether

No-one yet from the mental health team…………….shame on them……..

Anyway, Damian picked me up in the pouring rain and we arrived and set up everything, me being in charge of the tea……..and Damian putting the poster up.

We decided the first session should be just chatting so that people could have a chance to relax and settle so a very chilled agenda.

First student to arrive was Barbara, followed by Peter, one of the ‘Tutors’…………followed by students Eileen and husband Leslie,who was a University lecturer, Ken and wife Margaret, followed quickly by Elisabeth who is the trainee clinical psychologist evaluating the course.

2 other people, Clive and Tony, are also joining the course in a couple of weeks.

We started off by introducing each other and then Damian started by saying how the course came about.
Peter said “a diagnosis is the start of something new”

The newbies then told us their story. We had a former dance tutor, lecturer and retailer in a shop I used to live near in York!

We spoke about good days and bad days…..Leslie said, “every day is a good day as it’s another day I’m here………” His wife asked how she should get Leslie to accept he forgets and Leslie immediately became defensive saying he never forgets…….We highlighted that family dynamics and the issues that may arise will be covered in one of the sessions on Living alone versus being in a couple.

Kenneth started talking about research and asking about the research out there and how he’s changed his diet……….we told him Clive from Join Dementia Research would be here in the Market Place session allowing him to join up to JDR if he was interested. I said I’d been involved in lots of research.

We talked of the difference between factual and emotional memory.

Leslie recited a poem from GK Chesterton out of the blue and then Barbara recited a poem she wrote at school, showing how our long term memory is so much better than our short term…..

We spoke about relationship adapting and accepting, driving and fear……so much of what they chatted about, we’ve included in our course, which was very comforting…….all their fears have been our fears …..

During a cuppa break I chatted to Eileen and Leslie and it turned out me and Eileen had been in the same Halls of Residence at Coventry College😳, just in a different decade….. and Ken and Margaret lived near where I used to live in York😳 small world syndrome at large again………

After a cuppa, the 3 of us from Minds and Voices told our stories to finish off, which brought out more fascinating stories of time gone by in York…………….we ended with saying how being with other people with dementia made you feel less alone, we don’t judge each other and so what if we forget things, we’re they’re for one another………….
This is why we put this course together in a non judgemental envirnment………

Damian finished off by asking each person what they felt about how the first session had gone …….
Leslie said he will bring another poem next week….so we’ll call him our ‘resident poet’
Kenneth said he’d learnt so much……….
And finally, Barbara said she felt much happier now as she’d been depressed before….

It was a wonderful start to our course…………..obviously we couldn’t do it without Damian, but what better course to have for people with dementia than one put together and delivered by people with dementia…………

I’d decided before everyone arrived that I wouldn’t take photos today as I didn’t want to frighten everyone away, but Damian dropped me off at the station and I couldn’t resist taking one final piccie of the daffodils by the walls

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….

First trip of the year to the seaside……

Last week me and Gemma went for our first visit of the season to Blackpool, just for an overnight stay.

Many people think of Blackpool as a place not to visit because they envisage somewhere run down, dirty and full of tired sea front amusements, noisy and buildings in need of a tidy up. Well, like all seaside resorts, Blackpool went through a period of decline when people started to holiday abroad and our traditional seaside towns took a dive through lack of investment and lethargy.

Blackpool still has its places to avoid, just like anywhere. But if you can forgive its faults there are some beautiful quiet, deserted spots as well.

Back to last week……..We always stay in the same hotel and they always look after us so well. The manager read my blog way back and has been in touch ever since. We didn’t quite know what to expect of the weather as we’d had so much rain lately but we always have an inside plan if the weather is against us……..

However, we were totally spoilt this time. We arrived to find a beautiful sunny day

My room was ready so we dumped our suitcases and headed off towards the Big Wheel on the Central Pier to take in the view from up high….

And then went on the lovely trams down to the Pleasure beach, avoiding the rides this time and walking along by the sea. I always feel safe in Blackpool. Not only because I know it so well from childhood, but because I can walk as far as my legs will take me, by the sea, in the comforting knowledge that there will always be a tram stop nearby. And because the trams go from Fleetwood to Star gate and back again, I’ll never be lost. If I go the wrong way, I just come back again. The conductors are so helpful and smiley as well……perfect…..

We wandered along in the sunshine past the pleasure beach towards the south shore stopping to take piccies as we went along. We’d decided this was going to be a chilled day of ambling. No death defying rides this time……maybe next time though😉

Until we reached the ever circling glitter ball before making our way to the end of the tram line at Starr Gate

We then caught the tram back along the sea front all the way to Cleveleys where once again we ambled along by the sea, passing the memorial listing all the ships that have gone down off this coast

And finally ……to my favourite spot opposite Marys Shell where I could sit for hours……shame the tide as in this time, but still a beautiful place just to sit……..

You can hear the sounds of the ghosts of an era long since lost in Blackpool.
The beaches once heaving, with little sand to be seen are now often large expanses of deserted stretches. I can sit in my hotel room, the same one each time and see the same rivulets of water time and time again…..

We all have places we remember from our childhood …..and mine is Blackpool…..

I often sift through the videos on You Tube for the era I remember most……just like this one..This is how I remember Blackpool as a child. Blackpool in its heyday……

Magazine Interview…….

Remember……my blog is my memory….to capture everything I do…..

On Wednesday  I had a visit from Katharine Wootton
, Deputy News Editor of YOURS Magazine.

Katharine had contacted me a while ago through my publishers to see if I’d agree to an interview about my book. Some people say any publicity is good publicity, but I beg to differ. I always check out the magazine to sense if they’d do a good job and whether they’re approriate. Sometimes I get it tragically wrong but usually I’m happy with the outcome.

The age range for the audience of this publication is for women over 50 and comes out fortnightly but this is a good audience for my book as many of them will have direct or indirect experience of dementia, so I happily agreed.

We had been due to meet a few weeks ago but the snow had put paid to that and so it was Wednesday that I finally met Katharine.

She’d kindly sent me over the types of questions she would be asking and there was nothing I hadn’t been asked before but I decided on this occasion to type out some answers as I didn’t want a foggy day to render her visit a waste of time for either of us.

I’d had a few foggy days and hours lately and today was fair to middling……but still had my answers to hand.

Katharine arrived on time and immediately gained her brownie point by saying she’d like a cuppa tea……😇

After switching on the tape recorder we got chatting about this that and everything including:
Why I decided to write my book, and what I’d hope people could learn from it, my diagnosis, the part humour plays in my life, tips.

Finally, she asked, “many of our readers are living with dementia in one way or another, either dealing with it themselves or looking after a loved one who has been diagnosed. What would you most like to say to these readers?”
Don’t dwell on the sadness, the losses or the future – you can’t do anything about either. Instead focus on what you CAN do not what you can’t do. There’s lots of living still to be done, albeit in a different way than you would have thought. Enjoy the moment and if today is a bad day, tomorrow might be better.”..…….I hope!

Anyway, the article is due to be in the magazine at the beginning of June so will put a link if I don’t miss it……

Couldn’t resist a piccie of Katharine and she couldn’t resist asking if she could hold the magazine…😂……let’s hope the article lives up to expectation….😊