An unusual, but amazing location for a TV interview……

Yesterday I headed to London ….I’d been emailed a while ago by Sky 1 ‘What’s Up TV’ asking if I would be part of a programme for them……In their blurb it says~:

“It’s  a broadcast magazine show which focuses on providing engaging and inspiring content for a 16 – 35 year-old audience. The programme, now in production of its 17th series, reaches over 100,000 households, making it one of Sky One’s most popular shows. We have covered topics such as; SUDEP (Sudden unexpected death in epilepsy),  Myalgic Encephalomyelitis (ME), Domestic Abuse and many more.”

So it sounded like a good content programme and the emails I got were also kind and reassuring.

The aim of the piece they wanted me to do was to raise awareness of dementia, highlight the lack of funding for dementia as well as lack of understanding……

For those of you that have been hibernating for the last week or so, there has been severe flooding all around the Doncaster area and there have been no Northern trains running from my area to Doncaster since last Friday, I think…..so I was getting a tad worried about my plans…..I needed to get to Doncaster to catch the London train so I needed a plan B……and a plan C for getting back home…..🙈

I spent Saturday trying to work out what to do but gave up as the situation seemed to change by the minute so left it until Sunday morning to decide…..and thought and thought…..took me forever…..the web sites were no help as some trains said they were running on one site and not on another…..

The reason I decided to put myself through this was the venue they chose to record it in……The Clock Tower room at St Pancras……

http://www.stpancrasclocktower.co.uk/gallery.html

The number of times I’ve looked up there to get the time while being in London, not realising it had hidden secrets and now I would be inside it. So I couldn’t resist the inevitable stress I would go through just to get there……..

Next time if you come out of Kings Cross, look up towards the right and that’s the Clock Tower above St Pancras …

Anyway…..my plan b was to set off 2 hours before I needed just to try and get to Doncaster for my connection…..when I got to Hull the boards were full of ‘Cancelled’ heading towards Doncaster, but the only direct LNER train to London was sitting in the station. It was the 7am and I hadn’t even been due to arrive into Hull until 8.45 🤐………but the thought ran through my head that if you don’t ask you don’t get…….

I walked up to the guard, and he immediately clocked my lanyard….I’d also put a card in my lanyard. I don’t usually do this,

but thought today I would as  I knew I’d be doubly stressed about travelling and  it might just speed up being helped…..and it worked…..he immediately said:

“Come and sit down so we can chat, we’re not due out for ages’

And so we did. I told him my predicament. How I did have a ticket booked from Doncaster but not until 10.18 but wasn’t sure how I would get to Doncaster…….

He immediately found me an unreserved seat, and then said, “just travel with us to London, then you won’t have to worry about Doncaster”

That small act of kindness that cost nothing, meant a stressful worrying start turned into a calm relaxed journey. Yes I did get there 2 hours before I was suppose to but so what…….

The start of the journey was in darkness but as soon as the world began to wake I could see the devastation of the floods in the fields on farm land…..goodness knows how households are coping…😔as we pulled into Doncaster the once clear landscape was heavily flooded……

As we trundled further south the landscape began to change to green and brown  again…and autumn colours highlighted the landscape instead of a watery deluge….

The train manager came and checked on me every now and then to make sure I was ok, and asked if I needed to phone anyone since I’d be so early. I said I was happy watching the world go by for the couple of hours but he insisted I wait for him to come and get me, he’d walk me to the LNER lounge where I could wait in the warm with tea on tap….again, such a simple act of kindness and compassion for a fellow human being….he didn’t have to do that but he did…….I tweeted LNER to tell them so……

Katie Moore, researcher for the programme, had agreed to meet me at Kings Cross and walk me over to the venue. We’d exchanged phone numbers for txting, so I txt her the change of plans…I’d also had to book a different ticket home so I wouldn’t have the same problem in reverse, but they’d said they were fine with that and just to go ahead…..they’d refund me both…

The train manager kept his word, unlike Assistance, which forgot me, so I’m reluctant to use them again …..and he took me upstairs to the lounge area where it was nice and snug and tea on tap as promised…..👍makes travelling alone possible and manageable if people along the trundle are kind…..

Katie txt to say she’d arrived a tad early for me and we walked over to the clock tower

and here was  the amazing view from our floor looking down to the ground floor…..

And here was the view of Kings Cross from the window of the room…..only a few minutes before, I’d been stood on the outside looking up…

Katie told me how they weren’t being charged for the venue but instead the company would donate to charity and the location manager, Peter, would also donate……how kind is that…❤️ as I imagine that venue could charge a huge fee……also on the way up in the lift she told me how some of  Harry Potter was filmed here 😳❤️❤️❤️ The location was truly magical and I could well see the appeal for film companies…

I met all the crew who were just setting up and sorting out all their stuff….

Nayha, the interviewer arrived……and we chatted happily about the questions and just got to know one another….the term ‘sufferer’ was used by both Katie and Nayha, so I told them why I prefer ‘Living with’……..we had lots of laughter about Katie’s  Liverpudlian accent, and how she must never lose it…….and then the  director sat quietly and asked me questions simply to help in his personal life……

Nayha asked me 5 questions that turned into 6 after speaking about the word ‘suffferer’  …..around the NHS, symptoms, positive outlook and advice to people living with dementia and those supporting,  what the government can do with regards to care costs, adapting my house, why I don’t like the word ‘sufferer’ in everyday life…..

We recorded the questions and answers twice and I did warn them that I might say something different 😂🤣

For the question that asked, ‘what should the government do ….’ I answered….

“Treat those of us with dementia on equal terms as those with other conditions such as Cancer . If you’re diagnosed with cancer you have NHS support until death, whereas people with dementia have to fund their own care costs….”

Once finished and while I typed away, they recorded the ‘nodding’ shots, the background shots of Nayha…….soooo funny…..asking the questions without me there…

I climbed the stairs up towards the clock, with everyone but me freaking out at me climbing so high 🤣 and took this piccie of the crew, me thinks they were more worried about me than I was until I told how I’d done a skydive earlier in the year 😂🙄

Katie then climbed the stairs………

but hadn’t realise until then that she was afraid of heights and had to be rescued…..bless 😂🤣 …..and someone else took the piccie…..

They were such a lovely crew…….so friendly, so kind, so willing to listen and ask questions…and it all worked because Katie did such a wonderful job of getting to know me via email first and sorted out everything I needed so perfectly…….just how it should be……

It will aired in February sometime and the programme goes out at 11.30 am on a Saturday and this piece will also include a Labour and Conservative MP,   2 sisters who lost their dad, Dr Selina Wray from UCL, …….they will also put a link on YouTube so I’ll share it when I’ve seen it……..

Katie described it as a ‘Celebration of identity’…….even though you’re living with dementia you are still a person with a life to be lived……………wonderful…..fab day with fab people in a fab venue …….and because they allowed me to book another ticket home, which was a direct train, it was also a stress free journey home…….

Two events – one aim – to show what we CAN do……

Today I’m promoting two up and coming happenings. One in York and the other in Sheffield – sorry those further afield !

I’ll put them order of date……the first being Sheffield….

David Reid, senior teacher in the school of nursing and midwifery at Sheffield University, has for the last 11th years run the South Yorkshire Dementia Creative Arts Exhibition.

This year on Tuesday the 2nd July, me and many of my playmates will be showing what we CAN do as part of a Mentioning Dementia day……

I’ll be reading a piece from my book, some will be reading poetry and me and playmates Howard Gordon and Jacqui Bingham will be doing a Dementia Diaries Live session where we’ll read diary entries from other playmates.

It should be a wonderful day and is FREE to attend. I’d love to meet anyone in that area.

To register and get more detail click on the link below

https://www.eventbrite.com/e/mentioning-dementia-a-national-spoken-word-event-tickets-62679707693

The second exciting news, if that Minds and Voices will be running our second course –
A Good Life with Dementia – designed and delivered by me and my playmates with the support of Damián Murphy.

We had asked the local memory clinic to refer people but once again, they’ve let us down by simply giving out a telephone number and expecting people to ring Damian……😔…..if I’d just been diagnosed, I would want help and direction and not be expected to ring a total stranger. I’d want to have them telling me it might help and give it a go. Imagine how overwhelmed you feel anyway. You’re looking to the so called experts to show you what might be useful……Such a shame……

So here we are again having to try and recruit people ourselves….

Soooo if you live within the city of York we would welcome you and provide transport if needed. If you live further out and are interested, we would still welcome you but you would need to provide your own transport. Any age.

Supporters are welcome to come, in the knowledge that we do focus on people with a diagnosis.

The course is for 6 weeks…….with courses, my first question is always, so what happens on week 7 or the week after the course has finished…..and we have the advantage of offering people the opportunity to join Minds and Voices, should they wish, therefore providing some continuity of support after the course.

Week 1 starts on Tuesday 30th July. During the 6 weeks we include, hearing your story and answering any questions, the facts about dementia, Adapting and Accepting, pros and cons of living alone and in a couple, driving, speech, other people’s attitudes, where to get help including entitlements and welfare rights.

All the practical and emotional support that’s often missing plus any other questions you may have!

So if you are or know anyone who might benefit from meeting with us for 6 weeks please put them in touch. It’s not really a ‘just turn up on the day’ as Damian would like the chance to meet you and explain about our course first.

You can contact me through my blog, and I’ll send on your details to Damian, or you can contact Damian direct by email on

dementiafriendly@outlook.com

Or by phone on

07927 405854 (hope I’ve got that right, let me know and find there’s a problem….)

We’d really love to see people there……😊

An easy blog today….link to a podcast….

My blog last week spoke of the podcast I recorded in London last week. On line it’s described as:

“From the writers of the internationally successful Grumpy Old Women, award winning Comedian Jenny Éclair and Producer and Writer Judith Holder deliver Older & Wider, a podcast that offers insight, gossip and general news from the menopausal front and beyond.”

They ramble amiably and funnily for about 15 minutes before they interview me…….hopefully you can listen to it here if it’s of interest…..the Barbour mac Jenny talks about is the one in the picture as she wanted it to have its first photograph …..😂😊

https://podcasts.apple.com/gb/podcast/older-and-wider-podcast/id1446310659#episodeGuid=tag%3Asoundcloud%2C2010%3Atracks%2F618504948

Two Trundles in a row down to London…….

Yesterday was the second day in a row that I’d trundled down to London. Tuesday was a meeting but yesterday was podcast day. Producer Daily had emailed me and asked if I’d like to record a podcast with comedian, Jenny Éclair for her podcast series, Older and Wider…

I really wasn’t quite sure how this would work, but thought I’d give it a go as the rest of the week was lying empty.

Anyway, back to the first trundle and I must have been under the weather or coming down with something as I was off my cuppa tea……..yes you heard right…..I was off drinking tea. I drank nowhere near as much, only 4 cups the whole day and 2 of those were left partly undrunk…….😱😳 going off my cuppa tea is always my body’s way of telling me I’m not well or I’m coming down with something. It’s the only thing that stands out🙄

I opened my eyes yesterday and it was still dark. I suddenly had a horrible thought…..😳…..I looked at my alarms and had set it for 07.35………looked at my train ticket times…..and they were for 07.35………..😱…I rang the night shift man at the taxi office and must have frightened him to death as his phone probably doesn’t often ring at 4am……🙈……..He also knows me so just let me speak……..I just wanted to check what time I’d booked a taxi……07.10 was thankfully his reply. So my brain must have been working when I booked the taxi but last night was in a pickle when I set my alarm. Good job something told me to check everything 🙄

It was a horrible rainy day so not able to take piccies out of the dripping window, but instead have one from Tuesday of a gorgeous Orchid plant in the reception area

I’d emailed the day before about how the podcast would work to be told, Jenny Éclair and Judith Holder would join me and I think Judith Holder will be asking most of the questions around the book and your diagnosis and what mechanisms you use to help you. I used my dear friend Google to find out what Judith Holder looked like. Turns out she wrote the ‘Grumpy Old……’ series….I liked them!

So feeling more relaxed now, I settled down to a rain sodden journey, but there was still that awful feeling of not really fancying tea…😢….now this may not sound much of a problem, but it’s also my way of staying hydrated……😳🤐

The train was chocca with people having to stand all the way to London…….Wednesdays always a busy day….

I was heading for a studio near Ladbroke Grove. I’d printed my map etc and studied it on the train…..in between closing my eyes and ignoring the requests for ‘anymore tea’?☹️

It turned out to be raining cats and dogs when I got off the tube. The street was a torrent of water running in my direction……It’s impossible to have an umbrella, walking stick AND follow a map. 🙄 so drowned rat became more soggy as I ambled along the road, listening to the voice on google. But hey ho……it’s only water after all………

But I was drenched when I found Avalon studios

Because I knew what it said, I hadn’t realised it was backwards on the inside 🙄

And guess what……..I’d only been sat for 10 minutes when the sun came out…..😏

I was there early, as I always am, as I have to build in ‘getting lost time’……but this had proved to be quite straight forward.

Daisy came down and took me up to the studio where Jenny and Judith were horrified to find me so soaking – ha!. So after being mothered for a nano second, we sat down around the recording table and simply chatted. However, I was answering as though we were live, so they shut me up until it was being recorded. They were such nice people. I’m typing this in a café straight after as I didn’t want to forget the bit we’d recorded about technology. I told them how I use Alexa and how the wonder of technology now is all around me helping. The bit I didn’t want to forget is how useful Jenny’s mum may find it and I can imagine her ordering one online as I’m typing 🤣😂🤣

Can’t remember much else but think we must have chatted for about 40 minutes. Daisy will send me a link when it’s out but she’s hoping it’s the end of this week! So I’ll put it on my blog next week sometime.

It was such a pleasure to meet them all and I could have chatted for ages with them. They made it very easy, Judith feeding me the bits from my book which sparked the sentences to come alive and be spoken………

And of course, what better way to end than with a piccie, one for their podcast and one for me….

The rain had stopped as I trundled back to the tube station – map in reverse. I’d turned down the offer of tea at the studio….🤐….but really didn’t feel that good as I climbed the stairs out of the tube station. So I made myself have a cuppa tea, but it just didn’t taste yummy……..😔

I’d left myself plenty of time before my train, but that meant I could type away and finish this blog just so I could sit and stare on the train…….another rain soaked journey so this photo from yesterday is much better…….

An evening way out of my comfort zone……..

So on Friday I trundled down to London on the lunch time train ready to meet Nicola Leddy who made a video about me and my book many moons ago for the Alzheimer’s Society. The film had got to the final of the Charity Film Awards. Nicola had done a wonderful job though and many photographers who had visited my house in the last year had said how she got the setting in the house just right and some had even tried to emulate it.

However, in reality this was my worst nightmare event. Firstly it was in the evening – not a good time for me and secondly I imagined lots of noise and people and dark shadowy settings……….so I was there simply to support Nicola on her evening of glory, whether she won or not. There are some wonderful films and animations around at the mo.

The train to London appeared full of weekend travellers so was full but I had a seat to myself. The Humber shone on this bright but blustery day, the wind building for the storm due that evening….

I could sit in silence and watch the world flash by. As we got nearer to London the storm clouds were gathering and the wind becoming stronger. But the golden yellow fields still lit up the horizon..and made the land shine brighter than it really was……..😍

My hotel was close by Liverpool Street station and I was hoping the venue was close by as rain was forecast and no umbi in my bag…..🙄…..I’d also forgotten my ear plugs….😳….and the event would be very noisy. I put a comment to the organisers on Twitter and they replied saying they would whisper some of the time 😂

I arrived at Liverpool Street to find so much building work that it took me ages to find the hotel🙄……my trusty app kept being confused as I had to keep going round building work and got thoroughly lost for a while. It felt like it was in a backstreet which didn’t help either, but might be wrong.

Anyway, I arrived to find Maria McDonagh waiting for me in reception. I’d agreed to chat to her about the Ambassador role for the Alzheimer’s Society. Maria is the Head of VIP and Ambassador Relations and they’re in the process of recruiting some newbies so had a few questions to run by me. Havn’t a clue what they were as I’m typing this in my room an hour later 🙄……….

I declined the invitation originally as it was a black tie event and I don’t do posh, but luckily Nicola doesn’t either so we said we’d be the rebels amongst the glamorous 🤣

I’d put on Twitter about not having any earplugs with me and Nicola had txt to say we could get some on the way☺️. But even better, was she got me 3 pairs from the hotel reception!!

We set off from the hotel, Nicola in charge of Google maps……and we walked…….and turned round…….and walked…….🤐…….and arrived at the wrong venue 🤣😂🤣…….it turned out it was in the next street to my hotel, 1 minute away 😂🤣😂……it was soooo funny. Set the tone for the evening.

We arrived in the new venue and immediately had a piccie

It was chocca heaving with hundreds of people. Once we were called through to the main hall Nicola found us seats at a table that turned out to have the loveliest people who became our friends for the evening.

We were sat with another finalist, ‘Chicken Shed’ theatre group who were really nice chappies and 2 other woman who’d come because they want to make a film and were simply there for enjoyment.

I sat tapping some notes into my phone for some of the following detail…….

Simon Burton, the founder of Charity Films Awards opened the evening by saying, nothing raises money for charities better than films. He’s a lovely man who came up to me afterwards apologising, as he’d actually bought me some earplugs but had forgotten to give them to me in the chaos….☺️

Actress, Sally Phillips was the host for the evening, she was very funny. ‘Living Thames’ won the first award, which had Sir Richard Attenborough on the film😳 ‘Inside Childline ‘ won the second award.

It was then I decided I had to stop tapping and just sit and listen.

There were quite a few categories, all to do with the charity turnover, from small to super large. I remember learning many things that evening, some quite astounding but also some really heart warming. We saw many wonderful films, none of which I’d seen before, which I found sad as they were truly wonderful. I learnt that many charities pay a fortune for agencies to produce videos instead of investing in house teams which could do it for a fraction of the cost. Alzheimer’s Society use an in-house team and Nicola has been responsible for all theirs lately and has done a wonderful job with the East Enders Dementia Revolution London marathon team. Sadly she’s about to leave for another wonderful opportunity with a teenage cancer charity – they don’t realise how lucky they are….yet….

Our category came up

It had the most entries and very high standard. We didn’t win but we got ‘highly commended’.

At the end, we had our silly pic in the photo booth and had an interview………

exhausted, inevitable head banging, but saw some wonderful films and sat with some lovely people.

We might not have won, but Nicola should be so pleased with our Highly Commended glassware….

P.s……..didn’t sleep much and at 2 am hotel fire alarm went off……….😱🙈😳……trying to work out where I was, finally found a light switch……heard lots of chaos…….only for alarm to stop……..🤐🤯

The ‘Casualty’ Debate……

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

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

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

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

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

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

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

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

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

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

https://www.dailymail.co.uk/femail/article-6936029/Author-Wendy-Mitchell-helping-write-scripts-Casualty.html

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

An Evening at York Waterstones…….

Following on from yesterday’s blog……….

So after the mornings excitement, I arrived home with an hour and a half to chill before my bus to York. I had a second shower of the day just to try to wake up and feel fresher…..well I felt fresher after it ……🙄…….

Sarah had gone home but I had to txt her to ask if she could take me into town as the village bus was running late😳. Good job, she hadn’t gone out anywhere😇…….
The weather had been amazingly warm in London and the sun also shone ‘up north’ as well. I got the York bus and off I was again. Evenings are never my best times but hopefully there will be smiley faces there who will wake my tired brain.

The lovely Jonathan Cowan from BBC Radio York had messaged me the previous evening to see if I would be up for a quick interview before I started, and because it was Jonathan, I couldn’t resist😊

I arrived in York expecting a quiet evening with quiet street only to find it heaving in the Easter sunshine but the river looked lovely….

And the spring blossom was in abundance

I ambled round to Waterstones, going the long way, passed the Minster

to be met at the door by a woman who showed me upstairs, introduced me to several people and made me a cuppa tea 👍

It was happening in the café upstairs so they were still putting out chairs when I arrived. I’d left Jonathan’s name on the door and he arrived soon after me as people were drifting in. We went to the back of the room and recorded a short interview about this and that (in other words, I can’t remember 😂). But he was as lovely and genuine as always and after a hug and goodbye, it was almost time to start.

There was a nice number of people, mostly women, only 2 empty chairs to be seen so around 50 people. They’d put a table at the front for me

I had 45 minutes to ramble and I always like to fill it with reality but also pockets of humour and the audience obliged by laughing in all the right places. They were a lovely smiley bunch. I read 2 extracts from my book, the first near the beginning about becoming disorientated in York and ended with humour with the Billy story.

They were so generous in their applause at the end and had many questions to fill the last 15 minutes. The girl from Waterstones had to end the questioning in the end but said people were welcome to linger and chat as we had 30 minutes before my taxi was due. Sooo many people remained and chatted, asked questions, had their books signed.
I had a thoroughly lovely time but oh was I exhausted……..

Once everyone had left we had the bookshop to ourselves. A bookshop at night is quite magical, deserted and silent. You expect the characters to come alive off the shelves and re-enact their story.

I did have a slight panicky wobble as my taxi was late😱 and a combination of panic and exhaustion is not good. The staff were wonderful though and frantically rang round companies trying to find which one it was. However he eventually arrived and I soon forgave him as I snuggled in the back seat. He had a wonderful story himself; of he and his wife studying and bringing up 3 young children at the same time. I told him that sometimes we have to put our own life on hold and simply do whatever job fits in with life at the time, just as I did when I had 5 cleaning jobs because that fitted in with school hours. So the man with a Masters Degree, and a wife finishing her PhD, who was driving a taxi felt better with his lot.

A nice conversation to end the evening and a wonderful day…..and now to hibernate for the weekend……😴 💤 💤 💤

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……

Live Diary performance…….

Yesterday I found myself heading for Durham alongside playmate Howard and Philly. We were all coming from different directions and meeting up on a train in York.
I use to be able to get a direct train from Beverley to York but the powers that be in their wisdom decided to do away with this service. So now I have to change in Hull and wait for 30 mins for the train to York. I’d prefer going on the bus from Beverley but they also stopped the early morning service for this one too even though both were well used 🙄

Anyway a 30 min wait in Hull allows me to trundle across the road to Greggs to get a cuppa tea. You may wonder why I don’t go to Starbucks or Costa which are in the station…….well their tea is rubbish……simple😊

So the taxi turned up on a lovely fresh spring day. I got my cuppa tea and then began the slow stopping journey to York…..the sky over the Humber teasing us with promise of a nice day ahead…..

Someone came up to me on the train to say they’d read the article about me and my daughter in the Sunday Times😳 …….well on Sunday 31st, which is apparently Mothers Day, for those who get it, I’ve written an article for the Observer. The photographer came yesterday and won the prize for the most photographic equipment ever to enter my house😂 It was nice that they asked me to write my own article ☺️

I’ve been soooo tired this last week and my mojo has gone absent without leave….but it would do me good to be out and about with lovely people. I know why I’m going – to do a Dementia Diaries Live session – but can’t remember who to🙄 so I’ll have to wait for Philly to find out that bit.

Crikey, waffling or what!……..

Anyway, I got to York, and was met by Philly and we sat and had a cuppa tea before meeting Howard on the train to Durham. Philly went through why we were going.

We’re apparently visiting residents and staff at Housing 21 Extra care – independent living with 24hr care staff on site. John, the Dementia lead for the organisation, picked us up from Durham station and Vanessa Pritchard Wilkes from Twitter met us outside Bramble Hollow.

Philly got us here under false pretences as she said we’d be a small group of 10 however we walked into a lovely room of 60 staff and residents😳 from many of Housing 21’s housing courts. We just happen to be here in Bramble Hollow. What a lovely name with not a bramble in sight……

We started off by chatting and telling everyone why we were there. They started to get very excited about the fact we were doing a ‘performance’ – we told them not to get too excited as we’d forgotten our tutus🤣😂🤣

I asked how Housing 21 got it’s name – Vanessa gave the answer – because they wanted to provide care for the 21st century……

Me, Howard and Philly then did our live performance by reading diaries recorded by many people about a variety of subjects, including a lovely poem by Howard himself which they all really liked and applauded.

You might think Dementia Diaries involve writing a diary, but in fact we record whatever we want to say by ringing a magic number and speaking into a telephone. It’s sort of an answerphone where we can ramble on for a couple of minutes.

Lunch time was a liquid affair for me with a few cups of tea, but everyone else tucked into hot or cold food from their in house restaurant. I’d only taken 5 books (mainly cos I only thought there’d be a handful of people and sold them within minutes of lunch starting. But Vanessa ordered more online for those that wanted one. After lunch we sat and chatted with everyone about what sort of Diaries they could do. But they all went shy and no one wanted to give it a go.

I then asked if anyone would like to do a double act with me and suddenly volunteer hands went up and we brought the audience alive with our banter. So I had a wonderful time with 3 volunteers, Marjorie, Elaine and Sue recording a diary live with me asking them about where they lived. It was so much fun with so much laughter and engagement from the audience and so simple to do. Everyone needs a bit of encouragement and a playmate to do their first diary.

I only managed to get half the room in the piccie!

 

Dementia diaries is being launched as Housing 21’s new initiative which is wonderful to hear. All staff were on board and so enthusiastic to take it back to their individual places.
Many residents came up and chatted to me and Howard afterwards. Hugs were exchanged and laughter shared. It left me feeling very happy at the end of the day that we’d come into a roomful of strangers and left having made many friends.

If you live with dementia and live in the UK (sorry everyone else!) and would like to find out more, let me know and I’ll pass on your email details to Philly or Rachel. You might want to share a poem, or views on something, or just say hello and tell us your story. I’d love to hear from you, anyone living with dementia is welcome and all voices are heard.

If you’re not living with dementia and would like to volunteer to transcribe some of our ramblings, you can find out the details on the link below by clicking on the tab at the top about volunteering…..

https://dementiadiaries.org/

It had been a very long day and we all yawned our way through the train journey. We found ourselves in the ‘Quiet Coach’…….mmmmm that was always going to be a challenge but we only got told of once -ha!

Philly leafy us at York and me and Howard parted company at Doncaster. My head banging, as I’m sure it would for the next 24hrs, but there was a lovely calming sun setting over the Humber..

My first sight of Still Alice……

I had the most amazing evening at my publishers, Bloomsbury on Wednesday evening. Me and my partner in writing, Anna Wharton, were there to do a short talk, along with 7 other authors, ours being about the launch of the paperback version next year. It has a wonderful new cover, but I’m not allowed to show that until someone says, ‘GO’😂.

So Thursday morning found me trundling through a sunny London to St Pancras as I was heading back north to Sheffield to meet up with the new cast of Still Alice and watch their performance for the first time. It had its premiere at Leeds Playhouse with a different set of actors, so it would be interesting to see how the new ‘family’ settled in.

Lisa Genova, author of Still Alice kindly wrote this for my book in America.

Nicky Taylor from Leeds Playhouse was meeting me at Sheffield station before heading for the theatre and barring a few delays on the train, we had plenty of time to trundle up to the theatre and have a cuppa tea.

Once we went over to the theatre we were met by Producer Michael Parke who was sooo happy as to how it gone so far and we became even more excited at the prospect of seeming it. When we were looking our seats, Director David Grindly gave us a hug and hello and agreed we’d meet everyone afterwards. The staff looked after us wonderfully and were very kind, even making sure I didn’t forget my suitcase⭐️

So now for my own review of the performance and those that know me know I will say if I don’t like anything or think something should have been done differently……..

Still Alice is the story of a Professor diagnosed in her 50’s and the play shows how it affected Alice and her family. Alongside Alice (Sharon Small) is ‘Herself’ played by Eva Pope. I describe Herself as the inner thoughts of Alice and compare her to what I call ‘my own self’ who also accompanies me daily.

Before we knew it, the lights went down, the music started and Alice and ‘herself’ appeared on screen ……..and immediately they looked as one and at ease with one another. Eva Pope, playing Herself, timed her thoughts perfectly and her movement about the stage never distracted or confused as she effortlessly accompanied Alice on stage.

It was weird to see different actors on a different set but within minutes it seemed normal.It was strange to see a smaller stage, but within minutes it was normal…..

You can’t compare one set of actors with another, but Nicky rightly said how it felt like we were experiencing two sets of families going through a diagnosis of dementia.

The music between scenes was wonderfully haunting and was a great filler while scenes changed and props moved about seamlessly . Don’t remember that from before but maybe it was there…and I’ve just forgotten….

It was good to see the bunny slippers hadn’t been lost and other pockets of humour remained . Still made me chuckle…an important ingredient of the play.

Herself looked like she was dressed in all black, which had a strange effect when the lights were dim. At one point her head was floating in the corner…..weird…but very funny. I learnt afterwards that it was in fact dark blue.

It seemed different, but then they were different actors putting their own stamp on the part they were playing, but they flowed and jelled remarkably well for day 2 of a tour. The lighting seemed softer and sometimes just shone gently on Alice’s face and her expression was perfect and mesmerising……catching the lovely twinkle in her eyes.

Once again, it was all in the eyes and Sharon has mastered the look perfectly.

The sound of the microphone as Alice spoke her speech was loud and clear. It felt just as it does at a conference and made the speech so powerful.

“I am not incompetent. I still have opinions……..I am not dying, I’m living with dementia’

Slowly and discretely, the set became emptier and more sparse as Alice’s decline deepened. Sharon portrayed Alice’s decline sensitively, quietly, movingly yet perfectly. Her facial expressions, her mannerisms honed to perfection.

The ending, with Alice and Jon sat in chairs on the beach ….beautiful. I remember watching the ending with Sarah and Gemma in Leeds. I remember us sitting waiting for everyone to leave the auditorium and then hugging each other in tears. I was glad they weren’t there to cry again.

Poignantly the ending is Alice holding a book she wrote….

The theatre kept a small corner open for us to meet the cast afterwards after the audience had left. They heard our thoughts on the performance. My garbled emotions of happiness taking over but luckily ‘Myself’ had been typing throughout the performance. ‘Myself’ is the one who can articulate through typing whereas the outward me can show the emotional excitement I felt at the most wonderful performance by ALL the cast.

And I finally got my hug with Sharon.