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……

Guest Poems from a talented mum no longer with us…

Recently I had the most wonderful email from Tove in Finland after having read my book. In it she told me how her mother was 56 when diagnosed with Alzheimers  and sadly died at 64. In the email Tove said

”She was working with the elderly  and helping them to develop their memory. And then she lost her own memory…She was a poet in her spare time and she wrote many poems before it also was taken away from her”

I asked if I could share 2 of them with you as I think they are beautiful…a very talented lady….

Let me stay

among my dreams

and memories

yet a while

Let me see the ocean

in the sunset

and the beach

Let me listen to

grandchildrens laughter

and noice

one more day, please

Don’t run towards me

you cruel reality

Stay

Take

another way

So when you finally

knock on my door

I’m not at home

I’m perhaps already gone

   – Lillemor Eklund 2005

and finally this one…

When I no longer can pronounce my name

When the silence is hanging over my thoughts, like a mountain

Hug me, keep me close

Make me feel safe

Whisper my name

over and over again

Til I know

who I am

Wish me

wild and beautiful dreams

in the darkness

that has captured me

hold my hand

follow me some of the way”

Lillemor Eklund 1949-2013 

Involvement…….my Sudoku……

Yesterday I was at an event at Bradford Uni . I’d been asked by the lovely Clare Mason if I would talk about my experience of involvement and about my book.

I’ve said before that I call all my involvement, all these events, my Sudoku. It helps to keep my brain exposed to different conversations in different environments. This ‘doing’ I truly believe has stopped me progressing as quickly as I could have. That’s why I get anxious when seeing people sat doing nothing for hours on end and why I believe many people progress quicker than they need when they enter a care home. Obviously some are very good at keeping people active, but many more have yet to learn the value.

I know first hand how wonderful simply sitting with your eyes closed makes you feel, but I also know how dementia slips in through your closed eyes which is why I have to fight the urge to ‘sit’ and keep doing to keep dementia at bay.

Anyway, my ‘doing’ for today started with a lovely taxi ride to the station with one of my regular drivers. He was telling me all about his next project of travelling the canals of the north in a small barge. I told him as I got out to make his dream a reality…….😍

It’s the Easter holidays for schools at the mo so trains are filled with different people. Full of fraught parents entertaining excited children.

There was a misty haze over the Humber as we trundled passed……wishful thinking might call it a ‘heat haze’ but me thinks not…..

I arrived at the Uni to be surprised by the quietness. I’d forgotten it would be Easter Break for most of them. I was relying on asking them to show me the way to the venue! 😳However, I needn’t have worried as I soon spotted Clare’s Forget me Not signs on the lamposts showing us the way. I arrived to find Clare setting up all ready and people drifting in. The tea and cake were all ready

The lovely surprise was seeing my playmate Julie Hayden from West Yorkshire.

Lots of people came up to chat and say hello, so lots of hugs and cuppas. Professors Murna and Jan popped in to say hello. One Occupational Therapist had come just to hear me talk and buy my book 😳☺️ and many of the lovely PhD students were there. One person came to say hello who is apparently giving me a lift to their event in Burley in Wharfdale in May! Should have taken a piccie of her 🙄……..

One woman came up to me and when I asked what her connection was with dementia, she said, no connection, she’d come because she was interested to hear what I had to say.😍
She was due to have her 10th birthday of being cancer free next week, which was certainly something to celebrate and how I look at life helps so many others living with dementia or not……how kind ❤️

Clare said that on every table there were 4 people living with dementia – simply wonderful and a credit to Clare as she is key to people being involved at Bradford.

The lovely Vasileios, with his wonderful smile and cheery Italian face came to say hello. He is a researcher on the Angela Project (their aim is to improve diagnosis and post-diagnostic support for younger people living with dementia and their caregivers) and they will be releasing their findings from this very important study in the late autumn. Really looking forward to hearing what they found. You can read more here:

https://www.ucl.ac.uk/psychiatry/the-angela-project

Clare starting it off….

Once everyone had arrived it was my turn to speak – I didn’t realise that I was the only speaker 😳. I spoke about the importance I place on involvement by saying amongst other things:

“Many people have asked me why I think I havn’t progressed as quickly as some……well, I think there’s a variety of reasons, but the main one is that I’m far busier now than I was when I was working full time but in a different way, but in my way at my speed.” 

I finished off by reading a short ‘Billy’ extract from my book to end with laughter……

Everyone was very kind with their comments and questions. One supporter spoke of how involvement made her feel valued. She’d had to give up work but this gave her a sense of value. I always say, the voices of people living with dementia and supporters are equally important. I said how our lives often run in parallel with very different needs but both needs are non the less important.

Many people came up afterwards and asked me questions, which again is always nice as not everyone likes to ask in front of everyone.
They were a wonderful group of people. I always love going to Bradford – they just get it…….😍

I always feel part of the team at Bradford⭐️

Involvement with Edinburgh University ………

So after a rubbish week, that I now believe has turned into the ‘norm’, I was back out and about yesterday. What I thought was simply a bad week, I now realise was dementia progressing. I’m trying hard not to think of the confusion and at least I can still type….so I’m very lucky.
I was trundling on the bus to York to meet up with playmates from Minds and Voices as Edinburgh University had asked us to be involved in one of their projects around peer support.

I must have got in a pickle booking the taxi as he thought he was taking me to the railway station but was happy to do a detour and drop me off at the bus station instead. The bus arrived and we were soon trundling past a sunny Westwood with happy dogs taking their owners for an early morning walk. The golden yellow fields my favourite sight this time of year stretching out for miles into the distance, the upstairs of the bus the perfect viewing point.

Damian was picking me up at the station and was there waiting when I arrived. Edinburgh liked the fact that we ran our own course and they have come up with their own which they want us to look at. The aim of their course is to look at the reasons people DON’T acccess services and their project is called “Beyond the Margin”……..

Julie arrived from Edinburgh and brought all the paperwork. I was saying how I can’t wait to get before ethics committees to change their view of consent forms as they can be soooo simple yet are sooooo complicated for people with dementia……..just the fact that we have to sign and not tick each box is extreme…….anyway……..rant over……that’s for another day.

Damian started off with Julie and we just said our hellos. We’re all advisors to this project…..and had to sign the usual forms…….

Paul said ‘We need you to sign an indemnity form in case you get as daft as we are’…..😂🤣 – magic 😍

They are looking at post diagnostic support and want to learn from our experience of running a course and how we actually came to attend the group, Minds and Voices. So finding the reason why people don’t come to peer support groups or why they do, who refers you etc.

Julie went round asking how we came to go to Minds and Voices, what was difficult, what we found good or what put us off.

We’d been asked to bring a photo but of course most forgot, so Damian drew some ‘likenesses’

Tony Husband, eat your heart out……😳🙄😂🤣.

I said how I was reluctant in the beginning as I had this image of ‘the end’ and people just sat around. As soon as I walked through the door I saw how wrong I was, as my playmates were chatting, putting the world to rights and best of all, laughing…….but it was so hard to walk through that door not knowing what was at the other side……..

Everyone else told their story. How partners and those closest to them helped them to get to the group.

Alison, who finds it hard to speak, did brilliantly, telling us how hard it was for her to get a diagnosis and how York missed it and specialists in London diagnosed her after 2 years. I asked her if she could type and she could, so I suggested it might help her to get her sentence down first by typing if it’s difficult to find the words speaking. She was going to give it a try

Stewart said that for him there’s an optimum number. Ours is small but perfectly formed and anything bigger would be overwhelming. A lot of us agreed with that. Sadly, although we want more playmates, too many playmates creates too much confusion and can often isolate the quiet ones. Some people like to hide in large numbers, others are stifled through large numbers.
It transpired that we were all here through pure luck. No professional told us about it – it was who we knew, that told us about it. Just luck…….how sad…

I said how it needs to start from the health professionals at the beginning, thinking differently. They always talk about how there’s nothing ‘they’ can do, but forgetting there is still so much ‘we’ can do…..

When I spoke today, I felt I was all over the place, it seemed much harder to string the sentence together yet here I am, typing, and I’m fluent…..😔

Eric said the most wonderful thing at the end to me…………

“Your book is the only book I’ve ever read in my life from start to finish, I couldn’t put it down’…….

I had to get up and give Eric a hug…………what a lovely way to finish the session….❤️

I’ve got the busy week that will hopefully help me, including me and Sarah live on ITVs ‘Lorraine’ programme on Thursday morning and an appearance at York Waterstones on Thursday evening.

A few days in Paradise…….

I needed a break. Some silence away from everyday activity and what better place to find this solitude than in my idea of paradise, Keswick, in the Lake District.

It takes me hours to get there, my usual B&B has many steps to climb to the front door, but when I enter that door, the welcome I get is like having a permanent hug around you. I needed that hug last week as it wasn’t the best of times.

I’m sure I must have said before how my sleep is rubbish. Well it had improved lately due to a change in medication, nothing to write home about, an hour extra rising from 2-3 hours to 3-4 hrs. However lately it’s plummeted again with the last few nights only being 1-2🤯 That I can cope with, but it’s the strange night time dreams that are harder to accept.

They are not weird dreams, not nightmares, but those which when you wake, are hard to decipher fact from fiction…on a couple of mornings I’ve almost txt people to see what was true but decided they might be asleep 🙄

When most people sleep, their eyelids are closed but their eyeballs are asleep. For me, I never open my eyelids as they are exhausted but my eyeballs are wide awake. Most people may think it’s impossible to survive on so little sleep, and normally I’d agree. But it seems to be related to my dementia. I’m allowed to survive due to the dementia – weird I know, but that’s how I see it.

On a few occasions it’s felt like I’m progressing in my sleep before it strikes in reality, almost given me a warning. It filled a bucket with all the facts then flipped it over as though making a sandcastle, but when the bucket was lifted everything jumbled, fact and fiction getting jumbled. My head feeling strange when I finally surfaced and opened my eyelids. Having to remain still trying to separate the confusion. It felt as though my brain changed down a gear on that morning……like I’d turned a corner and one I didn’t want to go down but one which is inevitable…..maybe this is my norm until the next step down…..

Anyway, that’s why I felt a few days in, Keswick, might be just the tonic, after all it’s been quite a chaotic few months and will be even more so in the next few months.

I arrived to find Keswick bathed in sunshine ❤️

I trundled to my usual B&B and Catherine immediately made me feel at home as she is from Burnley and has defected to the West, so a true northern character. I had my usual room. She’d even remembered the red pillowcase over the TV, the jug of fresh milk and oodles of tea bags. I sat in my usual spot with a cuppa tea and stared out at the beauty outside my window….

Once I was refreshed I trundled down to the lake. It was such a beautiful evening.

I ambled along to Friars Cragg to sit on my usual bench and take in the peace. Now this may sound weird to some, but each time I visit this spot a Robin always comes and says hello. It lands in front of me chirping away, How do I remember? Well it happened this time and brought that emotional connection back from previous visits. It may not be the same Robin, who knows, but one always appears and welcomes me back.

I strolled through town and out the other side to see if the lambs had been born yet…..sadly only one tiny black one was hiding behind the hedge so couldn’t get a piccie but all these mums were ready to pop.

Time to rest my weary legs as it had been a long day travelling. So picking up a tuna sarnie for supper I headed back to my B&B…

Day 2 involved a trundle on the bus through amazing scenery and stopped of at Grasmere in the hope of seeing the lambs, and I wasn’t disappointed ….

Followed by a boat trip back in Keswick and one last piccie of the day…

And finally a weary trundle back for my tuna sarnie

The final morning arrived and the sun shone bright urging me to stay longer but I’m at my max nights away and anxious to get home tomorrow. If I stay too long, the suitcase becomes my home and I get totally confused as to the whereabouts of everything when I get home.So I made the most of the last day in this glorious place.

I took a detour via the local shops and spent far more than I should on gifts for the girls and reminders for me. This meant I had to stop by my room again to drop off parcels🙄 before heading to Fitz park to take some piccies. The spring colours were amazing….

I then took the bus to Seatoller and back again along narrow windy roads and more beautiful scenery from the top of the bus. Ambled to Portiscale crossing the River Greta

and finally, back to Keswick for a last look at my favourite view from Friars Cragg where I watched a happy dog chasing the choppy waves. I met a lovely couple who had never been there before, stunned by it’s beauty and we chatted happily for a while before they left, but not before I took piccies of them and they took a piccie for me and the Robin came along once more to say goodbye…..

Me thinks this will be the next piccie I print and hang in my Memory Room – my favourite spot in my favourite place…..

The trouble with this cruel disease is if you stop ‘doing’, dementia takes hold, which is probably why I’ve had a rubbish week – because I havn’t been ‘doing’, I’ve been doing everyday things which isn’t enough to keep dementia at bay……but after a wonderful few days in heaven, and a busy week ahead, hopefully I’ll now be able to find my mojo and pick myself up again…..maybe…hopefully……..

I made a short 2 minute recording yesterday for Dementia Diaries  if fancy listening to me ramble…..

https://dementiadiaries.org/entry/11208/we-all-need-that-special-place-to-go-when-you-need-to-make-sense-of-whats-happening

Me and Anna in Conversation……

A simple blog for me to end the week as it’s 2 links – firstly:

It’s the last 2 weeks of voting in the Charity Film Awards. If you’d like to click on the link to see the film of me that has made the final and then vote if you havn’t already, that would be wonderful….

https://www.charityfilmawards.com/videos/somebody-i-used-to-know-wendy-mitchell

Secondly, to an article me and my partner in writing, Anna Wharton, wrote about the process we used and challenges faced when writing my book together.

The day Anna emailed me was a very lucky day for both if us. Because it was going to be such a personal book for me, there had to be immediate trust. It may sound strange, but the minute I met her I knew it would work…..

But for me, the best part of the whole process was that it was the most wonderful experience and through our writing together gained a friend for life….

Here’s the link to the article….

https://granta.com/how-do-you-write-a-memoir-when-you-cant-remember/

An Open Thank You letter to Bloomsbury………

Dear Bloomsbury

This may sound sentimental, it may sound gushy, but I’m sat here, looking out at the birds in the trees and feeling grateful.

When the girls were little I used to methodically make a list of who had sent them presents and then the task after Christmas was for them to write thank you letters. Not sure how much they endeared themselves to the task in hand, but it was always done. Well this is one thank you letter which I’ve had no trouble writing. And so it is to you Bloomsbury, that I’m sending my thanks.

I realise my book has been mutually beneficial, but for me…..well….I can’t tell you the joy it’s brought.

To have the lovely Anna Warton believe in my story from the start was the first bonus and our friendship has remained ever since. I remember continually saying, ‘but who would want to read about me’?

Then once written, for you to believe in what we’d written, was the next surprise.

All I’d wanted, from the start, was to hold a book in my hand, my book. Like so many others, we dream of writing a book, but how many actually happen? So when Bloomsbury were our chosen publishers ahead of other, how delighted was I?

I chose you above others due to how sensitive and genuine Alexis, the Editor, appeared. I almost turned you down due to the difficulty I had in saying the name ‘Bloomsbury’….but then someone told me I’d been diagnosed on Harry Potters birthday….so the same publishers seemed like it was meant to be.

I’ve learnt so much about this alien world you all inhabit..The people I’ve met there have all been amazingly friendly and always made sure I felt comfortable with everything and respected the wishes of my daughters for privacy where it was needed.

The wonderful keepsakes you’ve given me have been so original. The first being the animation for the hardback version which I adore.

https://m.youtube.com/watch?feature=youtu.be&v=GjAS-07rTA4%5B/embed%5D

The kindness of the animators, allowing me to have the originals used to create it and then frame for my daughters, was a wonderful gesture.

You gave me the opportunity to make all the staff Dementia Friends one afternoon in the Conservatory. I still havn’t forgotten…….after all, it’s all written for me here

https://whichmeamitoday.wordpress.com/2017/10/09/talking-to-staff-at-bloomsbury/

The beautiful cover your talented designer created with the sunny yellow post its floating on the cover, was a joy.

but then to have a photograph I took of my girls many moons ago, be chosen for the cover of my paperback….well…..each time I enter a book shop and spy it proudly sat on the shelf, I want to go up and hug it tight….and often do!

To have posters appear in many tube and rail stations was surreal. Once again, your thoughtfulness at framing one each for Sarah and Gemma being overwhelming. Although Billy soon showed us that he thought he should be on the cover of the book.

I’m sure there’s many more wonderful moments that have left me now, which is why I wanted these all in one place.

 

Finally I think my favourite was seeing my very own Gif….memories uncovered before me – beautiful..❤️

The joy you bring to people’s lives through the written word is truly magical, the joy you’ve brought to me is unimaginable …..
I know all this will be over, but what memories you’ve made for me, and while the interest still rolls on……? ….well, I’ll enjoy every moment …..who would have thought any of this remotely possible back on July 31st 2014 when I was diagnosed with Young Onset dementia….?

Thank you

Loads of hugs and love

Wendy

Was this my last long walk……..?

Last Sunday or maybe the Sunday before, I woke to a gloriously sunny day and fancied walking and taking photos. I could have walked round the village, as I often do, as I’m very lucky to live in such a nice place.

Last year, or maybe the year before, I used to regularly walk into Beverley through the Westwood. In fact, I used to walk miles, just walking, taking photos and very happy. But of late, that venture has become a tad more difficult. I remember once having to give up half way and simply wait for ages for the village bus to pick me up. But today was Sunday. No village buses as a back up. Then I spoke to Sarah and asked if she was around and luckily it was her day off. So it was decided that I would set off, Sarah would track me, and if it became too much I could txt Sarah to pick me up – perfect😊

And so it was that I set off with a spring in my wobble. Passing by the village pond

and set off along the road leading out of the village. Passing one of the beautiful Magnolias in full bloom.

The footpath out of the village that also runs alongside the Westwood is also a cycle track. Many others out for a stroll, happy dogs by their side, bid me hello with a friendly smile. Cyclists passed, bells ringing behind me to alert me of their presence, shouting hello as they sped passed.
One chappie cyclist did just this, but then suddenly stopped a few yards ahead of me and wheeled his bike back in my direction…….

“Are you Wendy Mitchell?”

😳 ‘Errr, yes”

“I’ve read your book, it was wonderful. I recognised your orange coat and haversack from a photo I saw somewhere and just had to stop and say hello”

How random and kind was that! He then cycled off with a wave and goodbye..☺️

More Sunday morning strollers out in the sunshine exchanged a smile as I headed for the Westwood, my steps becoming less sprightly, the rhythm of my stick becoming slower. I hadn’t realised how cold the wind was and my hands were turning to blocks of ice, the deceptive sun giving out false signals of warmth.

I finally turned the corner and the Westwood came into view. I was able to stop for a breather and snap my favourite view to the left

And then the Minster in the distance to the right

It’s the road I trundle along in the taxi heading for the station and an early morning sunrise always looks wonderful over to the right of  the Westwood and an even more spectacular sunset behind the folly which I rarely see. It’s such a peaceful place, where walkers stroll and happy dogs are let off leads to roam and play.

This was the part of the walk I really wanted to do, my favourite views. I’d stopped to take the photos and now my legs really weren’t that keen on continuing. But I was determined to complete the trundle into town. If this was to be my last full walk here, I was going to finish it.

My sprightly step from the start had now turned into the familiar shuffle of tiredness. The town cows were still in their winter shelter otherwise they would have distracted me on my shuffle through to the end of the Westwood. But they were still to make an appearance so I had to concentrate on my destination, admiring the gardens on the outskirts of town.

I was heading for the station, picking up booked tickets for a future trundle and then to Sarahs for a cuppa tea and collapse on her sofa.

I finally made it and the smiling faces of pansys in the flower troughs in the station walk were a welcome sight.

Who knows if that was the last walk into town…..at least I had a plan B…….uncharacteristicly exhausted after such a short walk, but I did it, and if it isn’t ‘the last’….well that will be a bonus…..

Dreams………Poem..

I keep dreaming back in time
Of holding tiny hands
Is this dementia’s sign
Of where my end will stand?

Giving me a clue
A peep into my future
A sign of things to come
When ‘Now’ will be a different adventure

Dementia giving me a taste of my future through my dreams……..

I know I’m very lucky………..

Today is a simple blog as it’s a link to an article I wrote for the ‘Unforgettable’ web site. James Ashwell, founder of Unforgettable, explains how his mum’s dementia journey changed his life forever. He says on the web site:

“I passionately believe there is plenty of life to be lived with dementia and that products and services can really help”

So I was happy to write an article for their blog page about my relationship with my daughter. It must have been a few weeks ago though as I have no recollection of it yet reading the words, know they’re my words, and you can find it below:

https://www.unforgettable.org/blog/i-still-want-to-help-my-daughters/

Remember though, that with any article I write, they are my words, my thoughts and my daughters may think something totally different……😊