All posts by wendy7713

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

Local TV interview………

I’d been contacted at the weekend to see if I would go on the local TV news programme, Calendar, to promote my book. So yesterday I found myself collected by a taxi to drive me all the way to Leeds, which was a bonus.

It’s always a bit of a worry when you see the taxi driver studying the map before we set off…..🙄😳

The interview was for 3.30 and he arrived in plenty of time…….it was different going by car as I usually trundle along the train tracks. I’m sure I saw my windmills in the distance that I usually photograph from the train……🤔

As the sun shone, it got very hot in the car…..more used to an open carriage……but mustn’t complain. It was very strange though as I should have felt grateful, but I didn’t feel comfortable in the car. I didn’t know the car, and I didn’t know the driver – not like me not to give a lesson to captive audiences……🙄

The one thing I thought about as I was sat in the taxi was how little I’d had to tax my brain for this…..I was picked up, waited for and driven home….which is why tomorrow, I’d decided to join some playmates in York to discuss travel and blue badge – bus journey, walk to the venue and think…….much more taxing and I get to see familiar faces too – bonus

We arrived at the studios and immediately met by a lovely man who went away and made me a cuppa…..😊

and on the way said hello to the journalist Tina Gelder who had contacted me. I was being supported by another Wendy, Wendy Porter, Operation Manager for West Yorkshire for the Alzheimers society who soon arrived and said we’d met on many occasions🙈. She was lovely and instantly forgave me for not remembering her.
The interviewers, Duncan Wood and Christine Talbot came to say hello. A nice man then came and put our mikes on before heading to the studio with the floor manager.

I wanted to make sure we got a photo before we started in case I forgot at the end and so I could then turn my phone off

Once we’d all got settled and sorted we chatted about how my book came about, why I wrote it and the fact that no one would have thought over 3 years ago when I was diagnosed that I’d be sitting before them talking about my best seller of a book. They were all very kind in their comments and before we left we had another photo for their Twitter feed But with my book this time….

Sadly don’t think they have a catch up facility.

My nice taxi man must have been so bored waiting for me as it was nearly 2 hours later that I reappeared. However, it turned out he spent his time well talking to the receptionist and she knew who I was apparently☺️. On the way home he was full of conversation as his grandad had dementia….😊

It wasn’t until we trundling home (or rather static in Leeds traffic) that I realised I hadn’t said the one thing I wanted to…….that I would be at Leeds Playhouse on Tuesday 27th at 1.30 reading an extract from my book in a performance called ‘This is Us’. A performance with many other wonderfully talented people with dementia. Doh! But I did tweet them it so you never know, they may mention it but I’m not holding out hope…….

Not everyone’s a Wendy”……….

“Not everyone’s a Wendy”……….

This the comment Sonia Mangan made when I was with her on This morning the other day……I know what she meant, but OF COURSE not everyone is a Wendy. Crikey, some people would say…..”PLEEEEEASE, no more Wendy’s, we can only cope with one”🤣

There are wonderful Teresa’s, Tracey’s, Kate’s,Chris’s, Nigel’s, Agnes’s and so many other wonderful people living the best they can with dementia. The key is to tap into our own uniqueness. A little bit of knowledge and support can go an awful long way. Yes, some of us take it to the extremes, but that’s just us. It doesn’t make anyone elses small achievement any less special.

I don’t want people to feel any less good about themselves because they don’t live like me……if people take in one tiny spec of hope from the talks I give, one tiny adjustment to the house, one tiny sample of words, to make life easier, calmer and more manageable, then they are equally as successful as me. Everyone is individual.

I’m certainly not perfect, as my daughters will quite rightly point out, but then, no one is perfect. But we can all improve our imperfections.

People, so often, spend their time craving what others have or do in their lives instead of celebrating themselves and what’s right in front of them, no matter how little….


From our dear friend Google…

Pre recording for BBC Victoria Derbyshire …….

Three years ago me, Keith Oliver, Christopher Devas and his lovely wife Veronica, made a short film for the BBC to coincide with the release of the film Still Alice. Well for the last couple of months we’ve been let loose with camcorders again to record an update.

Last Friday, we all met in London. It was due to be shown live but events beyond our control, meant we pre recorded instead. Jim Reed, our journalist friend, had been reporting on the football scandal so the whole programme was the result of his hard work, so all was forgiven. Jim, who produced our film 3 years ago was the same journalist doing it this time so we were in very safe hands. He is one of a handful of journalists that I would trust beyond doubt.

The day before I’d been giving a local talk with Gemma so didn’t arrive in London until early evening. However, in the morning, at breakfast, I met up with Keith and his lovely wife Rosemary and we chatted, caught up and put the world to rights over endless cuppa teas before heading off to the studio.


Me and Keith beside Orwell outside the BBC…

We ambled to the BBC only to find some people had already arrived, including Dr Jennifer Bute, who is also living with dementia, Tim and Katie from the Alzheimers society and a representative from ARUK, a Care home, and many other people were there. Ming Ho, my twitter friend, was also there. I’d never met Ming before this week and now this is the second time in a few days – ha!

But the best of all was finally seeing Christopher and Veronica Devas again. I havn’t seen them for ages, but we catch up on email, but to have a hug was very special.

We were all shown through to the Green room. Veronica had actually emailed Jim to make sure they had Yorkshire tea🤣 but they failed miserably………..😂


Veronica. Christopher, me, Keith and Rosemary waiting in the Green Room.

We all went through into the studio and sat in a semi circle and finally, after Victoria had introduced the programme, we were finally able to see the film Jim had produced from our camcording…………
I really don’t like watching myself on telly and rarely do, but I didn’t have a choice on this occasion. It showed snippets from our previous film interspersed among the latest one. The difference in us all was clear to see – the main reason why I don’t watch me. I hope I looked like that because I was having a not so good day….

After the film, Victoria engaged us in conversation about a variety of subjects for about 30 minutes. We spoke of living, of stigma, of social care and the crisis that exists.

Victoria gave me a hug at the end when filming was all over for the success of my book.
Before we knew it we were back at the railway station heading home. Looking at the new tickets they’d given me at the studio, as we’d pre recorded, I realised suddenly that the new seat tickets didn’t match the old proper ticket……😳🙈😱…….time to get a cuppa and have a sit and a think…………🤯🔫………….a cuppa tea later, and I walked into the ticket office hoping someone would help. After much huffing and puffing and threats of having to buy a new tickets my head began to scramble, but luckily the huffy mans boss appeared and said to simply stamp the ticket and write on that the new seat tickets were fine😍 – could have hugged him and thrown my tea over Mr Huffy…….but then that would have been an insult to my tea😊

Caught the train and we trundled in the sunshine towards home…….

The best fact of all is that, thanks to JIm Reed, it brought us all back together again 3 years later – thanks to Jim for not forgetting us….and  I suddenly realised that I hadn’t had a hug from Jim😔


Can’t remember if this is heading in or heading out🙄

The programme is due to be aired on BBC 2 on the 1st March.
Wednesdays blog will be my opinion on the Social care debate which could have taken up a whole days programme…….

Double act with my daughter Gemma to the U3A…….

So yesterday I was on home turf with Gemma as we were doing a double act at the local U3A meeting. It had been planned for ages and I was to talk about the usual stuff and Gemma would talk about research in Humber NHS Foundation Trust, for whom I’m their Patient Research ambassador.

U3A, stands for University of the Third Age but has nothing to do with UNiversity……their vision is to:

“make lifelong learning, through the experience of U3A, a reality for all third agers.”

We didn’t get home from the theatre until after 11 the night before so I was so glad we weren’t due there until 1.30……….

At least it was dry today so the walk from the car park meant we didn’t arrive bedraggled as we were carrying Join Dementia Research leaflets and a banner etc………..🙄

We were met by one of the committee who immediately sorted us a cuppa tea😇 while everyone began to arrive. She told us not to expect many as it was half term and numbers were always down then…….however…….the room was just about full by the time everyone had settled and there must have been about 100 people👍

We were introduced as me and ‘Gemma, my daughter, who was just tagging along’ as we thought that might immediately bring a smile to their faces………..and it did……..
I started off with all my usual stuff first including adapting, moving , talking etc and hopefully threw in some humour every now and then.

Gemma then took over and talked about the research taking place in our local area and dispelled a few myths. I know I’m biassed, but she was brilliant……….

I finished off talking about the Advantages of having dementia 🙄 and about my book. They were generous in their applause and we had a queue of people coming up to both of us afterwards. Many people took JDR leaflets and they even offered to put them out again at the next meeting. They said some really kind things and it became apparent that many of them had twigged I’d been on TV and radio recently but just hadn’t realised it was me coming to talk – phew! – they might have been fed up of hearing me and not turned up if they had😳

The people afterwards came with many questions and stories, mainly of friends being in denial, which was sad, but also of queries re adapting and coping. The main consistent thing that came out was that people often talk to others, to friends, to strangers but rarely to each other…..seems like we need to normalise Talking –  hopefully they found my talk useful.

Afterwards Gemma had to take me to the station as I was heading for London as, on Friday, we were due to be live on the BBCs Victoria Derbyshire, but instead, due to another story they’ve been following, we’re going to record our programme to be showed at a later date. Normality quickly resumed as my first train was ‘delayed’ and then ‘cancelled’…….🙄🤦‍♀️🤐…..

Press Night at Still Alice…….

So last night I’d been invited to attend the Press night of Still Alice at the West Yorkshire Playhouse…..now I rarely go out at night but I couldn’t refuse this, and the bonus was, I could take Sarah, Gemma and Stuart along too!!.

This blog is slightly different as I usually type them in real time, so all the words are there for me. But I’m typing this the next morning and have no notes so have to rely on the images and feelings in my head from last night, so we’ll see how it goes…..

I’d forgotten how I hate travelling in a car at night and it was raining heavily so it was even worse with indecipherable shadows and objects flying past. Gemma did a brilliant job at getting us into the centre of Leeds and we arrived in plenty of time for them to have some food and me to have a large cuppa tea😍

I remember lots of hugs and smiley faces coming to say hello. AND we couldn’t resist this photo of us all in front of the poster…

We knew it was going to be a difficult watch before we went but I knew I’d be able to concentrate on the acting, the detail and the things I’d talked about with the cast.

The theatre was full – always a lovely sight and we were sat with Ming Ho and Nicky Taylor, so  a nice bonus. Our seats were perfect.

As the play began, I remember being surprise by the music – haunting yet perfect, wasn’t expecting music. The stage was how I expected from rehearsals. What I hadn’t been expecting was the brilliantly choreographed movement of the scenery. I have this image in my head of the actors seamlessly and silently moving the scenery around as though they were dancing. I was mesmerised by this.

The performance by all the actors was effortless and superb, but especially by Sharon as Alice and Ruth as Herself. I have an image of me smiling as Sharon had mastered the eyes throughout, had mastered the walk and even, for one moment, as she was standing still, I thought, that’s me……

You can’t compare this to the film as it has its own uniqueness that sets it apart. I soo hope it gets to London as it so deserves to. The transformation from the full rehearsal I saw, to this wonderful honed performance was stunning and left me feeling so proud of them all.

I managed to keep all my emotions detached, until the very poignant, brilliant ending. I turned to look at Sarah and Gemma and they were both sobbing. The reality of what we’d just seen hitting me hard then. But allowing everyone else to leave the theatre and simply hugging each other we gained our composure and went to join the party.

Sadly by now my head was banging by all the noise and music so we sat away from the crowd, waiting for the stars to glam up ready to be congratulated. I saw them all suddenly appear at the far end away from everyone else having the official photographs taken. I caught their eye and smiles beamed  back at me, so I walked over and was smothered in hugs from them all. My daughters followed and they tell me that everyone was so kind to them too, as I knew they would be.

They egged me on to join the group for the official photo which was so nice and I must get a copy of the official one for my memory room as Sarah found it hard to compete with the flash of the proper camera -ha!

I was also given 2 beautiful cards thanking me, one with a memorable butterfly on the front.  I couldn’t stop hugging them all and then Sharon made me realise I wouldn’t see any of them again, which made me sad. I may have only known them for a few weeks, but, wow, what an amazing few weeks it had been and I’ll always remember their warmth and kindness.

We must have left then and allowed them to join the party…….

A different type of blog but hopefully it captures the wonder of the evening. If you get a chance to see this play, please do. All I will say is, keep your eye on the scenery or before you know it, it will have gone, just like my memories……….


Me and Sharon…

Another media day…..

Yesterday saw me trundling back down to London for a couple of media things. I’d had a few days off so my batteries were almost at full strength.

ITV’s This Morning had asked if I’d go on and talk about my book and then I heard Sonia Mangan, CEO from Age UK, was joining the party to talk about the part Age UK can play. Seemed an odd choice of playmate because I didn’t know her, but always worth hearing what others have to say.

Emma from Bloomsbury, arranged to meet me at Kings Cross and be with me for the day as usual.

It was a freezing cold morning and today I was sharing a taxi with someone else in the village as the taxi firm were short of drivers, but made perfect sense for all of us and we had a lovely chat on the way to the station……no mention of dementia – perfect start to the day.

It was a silly o’clock start but at least I was on my favourite train, Hull Trains, and it was direct from Beverley – the only one of the day – and the bigger bonus was it was on time.

The sky was amazing and kept me mesmerised while it lasted

It didn’t last though. As we headed towards London, grey skies too over…….

Emma was waiting for me as planned and then we played ‘Hunt the taxi’. We soon arrived at This Morning studios and the staff couldn’t have been any friendlier. Someone immediately made me a cuppa, then me and Sonia, from Age UK had the obligatory selfie for twitter before heading off to make up🙄 Those who know me, know I don’t do make up and so, for me, it takes all of a nano second……..

Ruth and Eamon came in and said hello and Gok Wan was milling round as he was giving some lovely ladies a makeover, one of whom had the most gorgeous 8 week old baby in tow……..😍

We were second on, so we were quickly shown into the studio Green room where I had to be filmed briefly for the intro.

Me and Sonia were shown on set and Ruth and Eamonn chatted to us while ads were on before going live. Havn’t a clue now what we talked about but I remember they had a copy of my book and Eamonn came over and gave me a big emotional hug on screen, which caused quite a stir on social media and one of the national newspapers even did an article on line about  the hug last night!

…….I felt very happy afterwards and Emma and Twitter seem to think I’d done ok.

I’m not sure how long this film lasts of the programme or if everyone can access but here’s a link that may work

http://www.itv.com/thismorning/hot-topics/wendy-mitchell-my-early-onset-dementia-diary

Our car was then waiting for us to take us to BBC Radio London as I was being interviewed by Jo Good. It was due to be pre recorded but then in the taxi, Emma got an email asking if I would do it live🙄 Well I said yes, as then they can’t cut bits out🤣…….but it did mean we had time for a cuppa 😊

Once we were inside Radio London, we were well looked after again as another cuppa arrived, soon to be followed by Jo to have a hug and a chat before she went to start her show. I was first up and she chatted for 20minutes!! Apparently she usually plays a record before the news but carried on talking to me instead! She was taking live emails as we were chatting and she said people were emailing who’d never emailed in before – how amazing☺ You can listen to the interview by clicking the link below and starting it at 10 mins in.

http://www.bbc.co.uk/programmes/p05v49q4#play

Again, can’t now remember what we talked about specifically but she was the nicest person ever. Emma took a piccie of us after we’d finished…

Another taxi, and this time it was back to the office for me to sign 100 letters😳. They were for a special Mail out they’re doing. Then finally time to head back to the station😵 and home…….

What an amazing day……..exhausting but very amazing and so much awareness raised in such a nice way…..and Emma gained a bucketful of brownie points by continually checking I’d had enough cuppas😇

When people believe in you it’s amazing what you can achieve…

Who would have thought, on that traumatic day that was 31st July 2014…..who would have thought that over 3 years later I would be celebrating having my book in the Sunday Times Best seller list?

If someone had told me back then, about all the wonderful new friends I would make, the private me that was back then ,wouldn’t have believed them.

If someone had told me back then that I’d regularly get up and speak before many people, I wouldn’t have believed them.

If someone had told me back then that I would tweet and blog on a daily basis, I would have laughed.

All these things have happened because I was diagnosed with dementia – who would have thought………?

I’m soooo often saying that we all had talents before a diagnosis, we don’t suddenly lose them overnight when we get that diagnosis. With support, love and confidence in the knowledge that we CAN, we’re able to achieve so much, albeit differently.

One review in the Culture Magazine of the Sunday Times this week particularly pleased me:

“For grown-up listening there’s been a remarkable Book of the Week on Radio 4, Somebody I Used to Know by Wendy Mitchell and Anna Wharton. It’s the story of how Mitchell, aged 58, learnt that what was making her fall over and putting fogs in her head was early-onset dementia. This is how she dealt, and deals, with it daily. Dementia being the scary stalker we all dread as we wonder what we went upstairs for, I didn’t expect this to be a cheery listen. But, as Books of the Week are personally chosen by Radio 4’s network head, Gwyneth Williams — and she is hardly likely to want her customers turning off in droves — listen I did and was duly and honestly cheered. Read by Tessa Gallagher, abridged by Amanda Hargreaves, it was frank, angry, practical and, just occasionally, funny. Properly funny, not funny peculiar.”

Never give up on us and never give up on yourself. Any achievement, no matter how small is a wonderful achievement………….


From yesterdays Sunday Times…☺.

 

Over to my daughter today….

The Alzheimer’s Society recently asked me to write a guest blog recently but also my daughter Sarah wrote one – a daughters perspective on support. So today, I thought I’d share the link, because we always say that when we get a diagnosis of dementia, our family and friends get the same diagnosis, and need equal amounts of support, advice and education…..

https://blog.alzheimers.org.uk/personal-stories/wendys-story-part-three/

 

My last chance to see rehearsals of Still Alice…

Yesterday I was back in Leeds to see my first full run through of Still Alice at the West Yorkshire Playhouse. I wasn’t able to see them all last week due to a bit of chaos in my life🙄, so yesterday I was sooooo looking forward to seeing them all again.

I wasn’t expecting to wake up to a white world and even the taxi driver expressed surprised when he arrived in the village. I realised why as the first train trundled towards Hull and a green world was in evidence. We must have been in a tiny pocket of snow activity -ha!

As the train trundled across the Humber, the bright sky at the other side was desperately trying to force its way over…….

Trains behaved and I arrived in Leeds in plenty of time to amble to the theatre instead of the usual mad rush as Nicky Taylor had organised for another person, Maggie, who is working with Nicky on the #EveryThirdMinute festival, to meet me in the foyer. Rehearsals started half an hour later than before at 10.30.

So I arrived at the theatre and was soon met by Maggie who works with Nicky. We went across to the rehearsal room and were met by all the cast and sooo many hugs and smiles, I was overwhelmed. I then got each of the actors to sign the front of my script and say who they played – such a nice keepsake.

They all looked so nervous and were pacing the room…….Sharon, who is playing Alice, told me to be ruthless😳 – I don’t do ruthless, but I would certainly be honest🤣 They simply want to get it right and that’s the important bit for them all. That must be what makes it more than just another casting role.

We then started the full run through….

The beginning was very powerful and suddenly brought it all together for me – the relationship of Alice and Herself. I’d not quite got there in past rehearsals, but today……..perfect.

There were odd scenes I hadn’t even seen. The emotion, reality and even moments of laughter made it seem so real.

I promised I wouldn’t give anything away as so many of my friends are going to see it. But……..the time flew…..and the end was……well, emotional and brilliant……..

There was a nano second of quiet as they finished and then applause all round. Sharon went and stood by herself for a moment by the window and I went over and gave her a big hug. She immediately started making excuses, but I assured her she was brilliant. We briefly spoke of ways to make it even better and what worked well, but I’ll write down my thoughts and send it to them later. It was when she explained about Mondays, that I realised why Friday is a good day to have the first live public performance………after all the rehearsals Mon – Thurs, they’ll be fully emotionally charged to give a great first performance…..

I was elated and drained at the same time by the end. There’s still a few days left before they have their first performance on Friday and I bet it will be a relief to get out of the rehearsal room and into the actual theatre.

Wonderful, just wonderful…….

Afterwards I was whizzed off by Georgie from the Press Office to do an interview with the Yorkshire Post. They interviewed Sharon last week and then me this week on how working together worked. They’re also including a piece about my book and the amazing Every Third Minute Festival. It’s due out on Thursday apparently.

Nicky has kindly invited me to the Press night to watch the live show on the 14th and the bonus is I was able to invite Sarah, Gemma and Stuart, so a family outing it is and we’re all very excited🤩

I missed my train in Hull as the one from Leeds was delayed🙄 but ut actually gave me the opportunity to pop across to Waterstones to see if they had my book. After much searching I finally asked the assistant who told me they’d sold out last week and were just unpacking the next delivery😳…….I signed the new copies and they took a piccie of me with their review card…….☺


I told them I hadn’t yet got over the novelty of seeing my book in a shop….🤣

D Day finally arrived….

So my surreal few weeks were finally coming to an end with yesterday being the official publication day.
So many people had sent me pictures, emails and tweets saying their book had arrived the day before or even earlier!

The amount of support and kind comments on Twitter, my blog and by email had been overwhelming. Big thank you to everyone for their kindness, I just hope this translates into them actually liking the book🙄

Anyway, back to yesterday…….Sarah came with me and Bloomsbury had kindly booked all the tickets. It was a very silly o’clock start but it was a cold dry and still morning. Because Sarah was coming with me we caught the train further down the line at Brough, which meant we could say hello to the Yorkshire tea stall man and have a cuppa while we were waiting.

We got to London on time and met Emma for a cuppa before Anna also joined us. The first thing of the day was recording a podcast at the Guardian offices nearby. It was freezing cold but I insisted on the first piccie of the day…..


Sarah, Emma, me and Anna😊

The lovely thing about this interview was that it was going to be an interview about how me and Anna wrote the book. That was such a fascinating process and deserves more publicity. Claire Armitstead, from the Guardian interviewed us and spoke of the fact that it is much more than a book about dementia. I said how I hoped it was a book about one persons experience of dealing with a life changing moment……it’s how you deal with that moment that marks whether you sink or swim…….

Billy also got several mentions, which should keep him quiet for a while😻


Don’t know why I was looking so miserable – think we were doing a sound check and I just wanted to get on with it…😂

Claire was very good and exactly got what me and Anna were trying to achieve………it should be broadcast in 2/3 weeks.

After that Emma went back to the office and me Sarah and Anna went for a celebratory lunch


Me and Anna😊

It was then time for me and Sarah to make our way back to Bloomsbury. We walked into reception to find my book on their shelves……weird…..

They also took piccies of me with all the books ready to go on their instagram on Sunday.

Emma then took us upstairs ready for our final interview of the day with Ella Dove from Prima Magazine. While we were waiting, Alexis, the editor of my book, talked to me about the next stages around publicity…..😳🤯

Ella then soon arrived and interviewed me and Sarah as part of their Family section. She confessed to not knowing how she should talk to me or how I would be able to communicate…….but within seconds realised….. the best way to talk to me was just as you would anyone else…..The afternoon was rolling on and my speeach and thoughts became noticeably slower as the interview progressed🙄 But Ella  was another really nice interviewer and we chatted for ages…….during all of this time Emma kept me supplied with tea⭐⭐

Exhausted and happy we eventually made our way back to Kings Cross for the tea time train but couldn’t resist popping into Waterstones to see if my book was on the shelf…….I wasn’t disappointed……and after Sarah told the assistant who I was he asked me to sign some copies of their books……..🤣

He then stuck a stickie on the front which said ‘Signed by the author’…….and I hadn’t realised the man in the background peering over to see what this strange woman was up to…..🤣

A very surreal, exhausting but lovely day to mark the publication of #SomebodyIUsedto Know…..❤