Category Archives: A day in the life

Everyday experience of living with dementia.

What keeps me going…….?

After such a busy few months I finally had my last book event last week. I’d had a wonderful time and loved every minute of it. But it’s taken its toll. I’m empty and exhausted. I know I mustn’t stop or dementia will creep up on me so most of this week will be spent simply typing and pottering…..

I hope you know me well enough to know I’m not saying this for your pity.

The other day I set off travelling home at 9.30 and got home at 6pm, totally exhausted. So what keeps me doing what I do when faced with such challenges and exhaustion?

When I ask 200 children who knows someone with dementia and 2 thirds raise their hands

When a child writes that they won’t get upset when grandad forgets their name, they’ll smile and give him a hug all the same – because they heard me say it

When nurses eyes light up and make notes on the basics……because they heard me say it

When someone on Twitter says my words will change the way she practices…..because she read my blog

When a Gp questions my ability to speak articulately and be inciteful….because they’re in the audience – but at least I can respond and hopefully change their way of thinking.

When those who have partners thank me for giving them ideas on how to help their partner…….because they heard me speak

When someone comes up to me afterwards and says, he and his wife had never talked about her dementia but he was now going to talk to her in her care home and hope it’s not too late

When my Gp says she’s now read my book and has advised others in the practice to do the same..

I could go on, but I’ve learnt that I live in a very tiny bubble of people who know and understand and the rest of the world is yet to be educated.

When no one is surprised, when no one learns something new, when no one reads my blog or attends my events because the world has got it……..that’s when I’ll stop.

Mmmmmm me thinks that wont be in my life time. So I’ll hopefully die before dementia takes hold and prevents me doing all this, otherwise I could well be in the hands of those who don’t get it…….what a nightmare thought that is..

I’ll continue to exhaust myself for as long as people listen and learn. As I’ve said before I’d rather die of exhaustion than dementia. My daughters are with me on this and I couldn’t do it if they weren’t there for me.

I child writing this keeps me going……

The Last Book Event of the Year…..

Well yesterday, this exhausting few weeks finally came to an end with my final Book Event. How fortunate I was and how wonderful that it was actually in my hometown of Beverley and to top it all, it was a sell out………

It was the opening event to their Festival of Words so I imagine nerves were jangling but I arrived at the venue and was immediately shown into the children’s library where the event would take place. They were still getting ready but people were already standing outside waiting to come in…..

Because it was local it was wonderful that Sarah was able to come along as it was her day off. Stuart, Gemmas partner, also planned his days so that he could come too. Sadly Gemma had to be at work.

The first thing they brought me was a pot of tea😊

I chatted happily with the organisers and a couple of men got the cameras ready as they were also filming the event. They wanted to film me afterwards too answering 3 short questions…….

Sarah and Stuart were allowed in ahead of the audience which gave us a chance for our own piccie

Anyway, as I was mid cuppa, the audience began to arrive and happily waved and chatted to me so I could finish my tea.

Because it was in the children’s library, it was a lovely setting as it was so bright and colourful! I could have spent ages scanning the book shelves.

And they had a wonderful elephant and baby…..

But the time came for me to speak. I was given a lovely introduction and then spent about 45 minutes talking about this that and everything. My analogy of the fairy lights seemed to go down particularly well. I said:

Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us.”

I finished by reading the Billy extract from my book to end on something humerous…..they were warm in their applause and questions and many queued up to speak to me afterwards and have their book signed.

There were some people living with dementia along with their partners and each came to say hello. One man, whose wife was now in a care home, came over and said how, they’d never been ones to talk about it, but after hearing me, he was going to try and hoped it wasn’t too late……One chappie brought me 2 poems and I said I would put them on my blog soon as guest poems. People who read my blog and Twitter friends also appeared – so wonderful.

What a way to end a crazy few wonderful weeks. I can now have a few days chilling and writing in silence…..

As the audience disappeared amongst much chatter and reflection, they filmed me answering their 3 questions. The last question was:

“What’s your favourite word”……..I said I didn’t have one but four…….

There’s always a way’……..

An evening event in Tunbridge Wells…..

So here’s the continuation of my day in Tunbridge Wells. After meeting the 200 children and taking them through my dementia friends session, Anna took me back to her house to meet Derek and Clive…..her beloved ‘boys’.

Of course they were adorable and Derek came running up when he heard the car just like Billy!!

Clive then came downstairs to say hello once we were inside and was a real cutie who enjoyed lots of cuddles while Derek had had enough and replaced Clive on the bed and went to sleep. 🤣😂😻 But not before I took loads of piccies including this one ❤️

We sat and chatted over a cuppa, before heading into town to meet Amanda, who had organised the evening event. We went to the Pantiles District of Tunbridge which is a wonderful area of cafes and restaurants all with outside seating. It was such a glorious day we sat outside too. We all had such a wonderful conversation – shame I can’t remember the detail, but I know I came away feeling good.

As well as the local paper and radio not wanting to advertise the event, neither did the local Women’s Institute…….such a shame they didn’t allow their members the opportunity to know the event was happening. Such is the stigma around dementia that some feel it will be depressing and a taboo subject when in reality, it will be anything but……Yes of course they’ll be sad bits. But they’ll also be much laughter, many strategies to adapt and a story of how the decisions we make in life on how to deal with something bad, determines the experience…….

Anyway, after a cuppa tea, I decided I needed to hibernate for a couple of hours. So Anna dropped me off at my hotel and picked me up again after her parents meeting at school to have tea with her.

Anna had picked up all the cards the children had written after the Dementia Friends session in the morning so we spent a while reading them all – they were wonderful.

But the time soon came for us to make our way to the venue. We were met by Amanda and immediately had to have a piccie

The audience began to arrive, many delayed by train problems. Some people were travelling from London but there were major problem.

Once Amanda had introduced us, me and Anna chatted for what seemed like ages and way past my bedtime. The audience asked some really interesting questions at the end. One person questioned how could I be so articulate and so inciteful? Well I was intelligent and very inciteful before dementia, I don’t suddenly become stupid and less inciteful ……I also don’t have the type of dementia that removes the ability to understand what’s going on around you. I think and hope I answered more politely…..
Certain types leave the person totally unaware that anything is wrong. There’s a difference between those in denial and those whose dementia has stripped away that incitefulness……..certain types create speech difficulty. I’m lucky.

The evening is very sketchy even though I’m typing this in my room on my return. I felt, as the evening went on, that I was fast disappearing. My head was banging from having talked and concentrated so long. I remember talking about how exhausting dementia is and was really feeling it. I’m not really with it as I’m typing now but worry that nothing will be there if I left it until the morning…..

What’s the alternative to not putting myself through all this exhaustion? To sit at home and let dementia win? I don’t think so……..

I don’t often do evening events and this evening reminded me why. But I had a wonderful time with wonderful people who said such kind comments afterwards, which makes it all worthwhile. I remember lots of hugs, lots of laughter, Twitter friends saying hello and even Julia Wheeler, who interviewed me at Cheltenham took the trouble to be in the audience.

But best of all…. I got to spend the day with my buddy in writing, Anna Wharton – wonderful ❤️ I know I keep saying it but I really do feel very lucky…….

Off the Shelf…..

Saturday saw me heading to Sheffield for the Off the Shelf book Festival. Now considering it’s Autumn here, it was very bizarre when I went out to feed the birds and as I walked outside it felt like someone had left the heating on😳….very strange and the sky, just for a few minutes was wonderful. But in the blink of an eye it was gone; luckily I managed to capture it

There was another planned train strike day🙈 which meant stress. The lovely Hetty at Bloomsbury booked me on trains via Leeds in order to avoid Northern Rail, but you never can tell what will happen. It also meant I had to set off further down the line at Brough so a cab was needed. I couldn’t use my usual taxi people as they are still very much a pen and paper firm so it couldn’t be paid for in advance, so sadly I had to trust another taxi company, but they turned out to be lovely

I arrived at the station to find chaos as the ticket office wasn’t open, the Hull train to London had been cancelled and no one around to ask…….felt so relieved I was on a different train…..As it turned out, my original train, that was due to be cancelled, was reinstated, and another cancelled in its place just to confuse everyone. It meant I could travel direct to Sheffield. Not like me to be on the positive end of train chaos😳

The skies looked very threatening as we trundled along…

Once at Sheffield the chaos subsided by having a cuppa and txting Mel to say I’d arrived. Mel Hall would be introducing me. We know one another from an amazing research study that she conducted with my lovely buddy, Prof Pat Sikes. Their study looked at the experience of children when a parent is diagnosed. We’ve all be friends ever since, so it was good to be able to catch up again.

We WERE BLOWN ambled to the venue and were met by one of the organisers and someone who had come to sell my book, along with the sound man who made us a cuppa tea!.

Me and Mel had a piccie before the audience arrived…….

As people began to arrive, it was lovely as people walked by me, smiled and said they were Twitter friends or read my blog😍. Another friend to arrive was an old school chum Jill and her partner Dave. So lots of hugs and catch ups to be had.

Mel gave me a lovely introduction and I spoke for about 45 minutes before taking questions.
I don’t remember much of the detail but I clearly remember one woman, clearly with dementia, who plucked up the courage right at the very last minute to ask a question.
She said she got very frustrated at not remembering someone’s name even though they’d just introduced themselves and even though she repeated it time and time again to herself, but then forgot.

My response was:

“I do that all the time. What does it matter. If they’re kind people they will understand”.

The beam on her face and her suddenly relaxed body said it all……and was a very special moment….

I then signed books and had so many lovely comments and people just chatting and saying hello.

Obviously I’m typing this on the train home so the detail itself is disappearing fast. But I know there were lots of smiley kind people who took the trouble to come and hear me speak today……..and this weekend is the last weekend event before I get my Saturdays and Sundays back to myself again……..

I’m so lucky…….

Final three Book events….for now….

Well today I’m on countdown to normality resuming……

On Saturday, I’m speaking at the Sheffield Off The Shelf event. More details here …

On Tuesday evening, I’m with my buddy in writing, Anna Wharton, in her home tone of Tunbridge Wells, talking about how we wrote my book. For this event you can bring a friend for free! Never been a BOGOF before😂

And then finally finishing off in my home town of Beverley next Thursday. That event has amazingly Sold Out😳

never had Sold Out across my face before!

I’m looking forward to seeing everyone at these events – all different – but then I’m also looking forward to the end of this dream. It’s been a blast, a wonderful experience meeting different people from all walks of life, some with dementia in their lives but others attending out of curiosity.

So, what after all this excitement?

Starting to run on empty…….

It’s been a busy couple of months and the end of the Book Festival time for me is drawing to a close with a week to go before they’re finished. It’s been an amazing experience and one I wouldn’t have missed for the world but I’m starting to feel the effects of the pace.

However yesterday was another wonderful opportunity as I headed down to Cheltenham for The Times and Sunday Times Cheltenham Festival. I was due to be on stage with Neurologist Jules Montague and we were to be interviewed by journalist Julia Wheeler.The title of our session was:

Do Memories Make Us What We Are?

I’ve done a couple of things with Jules, I think!. On stage at Bradford Festival and a radio interview for BBC Radio Scotland, but I might be wrong.

It was the most glorious autumnal misty morning. I wish I could have got a piccie from the taxi as we travelled through the Westwood but the windows were steamy and uncooperative🙄. But I managed to get this one at the start of the trundle from Beverley

And it was a beautiful morning over the Humber

I only had 7 minutes at Sheffield to get my connection so it was a stressful first part of the journey and as the 7 minutes dwindled down to 2……😱 but my trusty app told me my connecting train was also running 5 minutes late. Thank goodness for technology! So as I wobbled onto the platform, the train duly pulled in🙄

I was met at Cheltenham station by a wonderful Festival driver holding a card with my name. He was so kind and took me into the Writers Tent where I met up with Jules Montague and her publicist. We had a much needed cuppa or three before being shown to the venue tent and having a sound check.

All the rest is written back at the hotel the detail is beginning to fade but I’ll do my best….

Back in the cuppa tea tent I had another before Julia Wheeler arrived and we were shown back to the Green room in the event tent. We were suddenly told it was full😳 so 500 people were making their way to their seats❤️

Julia was a wonderful person to be interviewing us and we went with the flow. We decided beforehand that I would read two passages, which I duly did.

I remember much laughter amongst the seriousness and the combination of me and Jules worked well.

There were many questions at the end before I finished off with my favourite piece from the book – the Billy story. The audience were so warm and wonderful in their applause, laughter and appreciation. Me and Jules were shown to the Waterstones tent to do a book signing. One lovely girl went to get me a cuppa as the queue stretched outside the tent😳 I remember a huge range of emotions with tears, thanks and laughter… overwhelmingly wonderful.

People were just so kind in their comments. I remember going back to the writers tent feeling very happy and warm inside.

Jules had to leave for her train but I was lucky enough to be staying the night. They’d got me a ticket for Pam Ayres an hour later. I might not be able to read novels but her poetry is wonderful. It was in a venue a little way into town. On my way I was stopped and thanked by so many kind people it was overwhelming. I nearly gave up trying to find the venue but Ellie from the team came across me and took me there – she also sorted someone bringing me back😍.

Pam Ayres was sooooooo funny. I’m so glad I went. Someone walked me back to the writers tent and I found a driver waiting to take me to my hotel……how lovely.

I felt thoroughly overwhelmed and spoilt by todays event. It might have been stressful getting here but it was soooo relaxed due to the sheer kindness of others once I arrived…..

I can only write Wendyx with any consistency but no one seemed to mind…

Why I prefer to stand on stage alone and read…….

This combination of dementia and success is a very strange concept. The last thing you expect after being handed a diagnosis of dementia is success is a different way……
But I was fortunate to meet Anna Wharton, my lovely writing buddy. Without her help, patience and understanding, my book would never have materialised.

So with the success of the book has come many new opportunities, many new ventures. Book Festivals have become another ‘suduko’ in my armoury against dementia.

I have always loved the written word and since this wretched diagnosis, the written word has taken on a whole new meaning and importance. I’m sure I’ve said many times, that I can type far quicker than I can think and speak the words – the words I WANT to say, not just ramblings. When I type dementia is locked away behind bars, trying desperately to hinder the process but can’t just reach out enough to stop me.

I’ve been very lucky to have been invited to many book festivals, but I’ve realised there are three types.
Firstly where I speak alone and read extracts from my book
Secondly where I’m interviewed badly and ramblings come out of my mouth instead of the words I want to say because they havn’t understood the challenges being interviewed for someone with dementia, brings to the table.
Thirdly, where I’m interviewed by very clever people who have done their homework and know what words to feed me in order to get the sentences I want to say. These are all sentences I’ve said before either in my blog or on TV or radio, so they seem to be hidden away in my subconscious waiting to be released.

So which do I prefer? Well the latter two are rather hit and miss unless I know the person and feel safe in their hands. I’m on stage with Anna Wharton next Tuesday evening in Tunbridge Wells and feel totally at ease. When they go well, they go really well as many have. But the one I prefer is being alone on stage with my own words.

Sometimes when I try and just speak my brain can momentarily block, turning it into a disconnected hole of emptiness…the reason for talking, for being there, disappearing into a haze. That’s when the ramblings appear. They’re often still ok, but not quite the words I want to say.

So when I’m alone on stage, I have my words in front of me, typed by my unhindered dementia mind and exactly the points I want to make. I could never speak those words in the order they appear if I didn’t have them to hand. Yes, I could show the reality of my rambling self but that would seem like a waste of the time when I have a captured audience in front of me.

I want them to hear the important bits, the serious bits but also the funny side to dementia and I can only do that well if I’m left to my own devices…..

Birmingham Book Festival…….

Yesterday I was lucky enough to be on stage with my partner in writing, Anna Wharton. We weren’t on stage until 4pm, but the train timetable meant I had to travel on the Saturday…….Saturday was another Northern Rail strike day🤯🙈😳

Due to many trains being cancelled, including my own, I had to catch one 2 hours earlier just so I would get my connection to Birmingham in Sheffield.It was also the only train to get football fans to Sheffield in time for the afternoon kickoff😱🤯🙈

After 7 hours I finally got there……to my least favourite train station – Birmingham New Street😏😵 ……but at least one of the event organisers was there to meet me AND the rain had stopped falling. We trundled up to the hotel through the streets of Birmingham which now resemble a building site. A new tram system is being built and causing havoc but hopefully it will be worth it when all finished.

Once I offloaded my stuff in my room, I knew I needed to walk back to the station again to make sure I knew where I was. It was also a chance to pick up my tuna sandwich for my supper!

I’d had a stressful 48 hrs for various reasons (see my poem tomorrow) so simply chilled and had a Facetime with Billy and my daughters…😻😍

The evening sky was wonderful over Birmingham

I had most of the day to myself on Sunday so needed to find the venue. Anna would be arriving at the venue around three as was the person who was interviewing us on stage……my friend Prof Jan Oyebode from Bradford University.

Book Festivals are obviously new to me but what I love about them is the chance to meet different people, a different audience from the usual Conference audience. Some have dementia in their life but some are there simply through curiosity for the literature.

In the morning I went on a reccie to find the venue and what a mission that turned out to be!. I knew the area to start the walk – Moor Street Station – but couldn’t work our which direction to start walking. I had my ‘google maps’ turned on but kept going in the wrong direction. I asked numerous people but all kept sending me in the wrong direction🙈
Finally I found a National Express coach driver and he instantly knew the right answer. Google maps was happy as was I. I made mental images of the route and agreed to meet Anna at the station to make it simpler to find.

I must have walked miles…….anyway I could relax and enjoy the remaining couple of hours. I ambled round the shops and found my self on the Christmas floor at John Lewis…(OOooo did I really say that🤣) Couldn’t help myself and bought the first Christmas decoration….😂🤣😂

I digress…..I finally met Anna off her train and we retraced my steps to the venue where Jan was also waiting. Just time for a piccie before the audience were shown in

We were shown into the theatre and someone brought me a cuppa tea😇. The audience arrived and we had a lovely hour of chat and laughter and finished off with questions and a book signing. The people we met were lovely and I even met a Twitter playmate…..I can’t remember the detail as, obviously I couldn’t type during the event, but I know I had a lovely time❤️ Always seems sad when I can’t capture the detail at the time but not always possible,,,,

The auditorium wasn’t as full but we found out afterwards that someone had tried to buy a ticket but had been told they had sold out😳 so I hope there weren’t many others like that………🙄

Before we knew it, we were finished and I showed Anna the way back to the station🤣😂 before heading back to the hotel for the night.

Another lovely experience all because I was diagnosed with dementia………
Another beautiful sky over Birmingham…..

One of my wonderful daughters in the spotlight……

Today it’s one of my amazing daughters taking centre stage. I’m sure I’ve said many times how I have 2 amazing daughters. I couldn’t do all I do without their love, support and humour.

Sarah is a nurse in our local amazing hospice – Dove House. I’ve always said, that it’s the management level in any organisation that make or break it. Well at Dove house they have the wonderful Dr Anna Wolkowski at the helm and her management and ethos is what makes the place special.

Needless to say I’m very biased and think it’s wonderful 😊 She said:

The staff and patients are just very happy most of the time as ultimately, life is for living, no matter how long you have left.”

You can tell she’s my daughter – ha!

The hospice services could offer so much for people with dementia after all we too have a life limiting condition which is often overlooked but not here.

There are people everywhere doing wonderful things who don’t get any recognition, they just do it. My 2 daughters are 2 such people, but then I would say that😍

I hope the link is still available when you click, apologies if it isn’t.

Appledore Book Festival…..

So at the end of the day at the conference in Barnstaple last Friday, someone had kindly agreed to drive me to Appledore on the coast. It was a lovely drive and she drove me down the opposite side of the estuary and we had stunning views of the Atlantic. I wish I could remember the name of the lovely person who drove me as she kindly helped me check in and find my room before leaving for her lovely home just a few yards away.

Needless to say I had a cuppa tea and sat getting used to tonight’s surroundings. My window faced the sea and that provided the immediate calming view I needed. After my cuppa I walked across the road and took in the view

I found the venue, just a short walk up the hill and everywhere was festooned in bunting and welcoming signs. At this point the weather was dry and perfect……

How lucky am I to be doing all this. The organisers had pre booked me a table for supper as I was obviously staying in one of the most popular local meeting places. I would usually just sit in my room but because of their kindness I went and ate in the restaurant. On my way back someone shouted my name and it was the organiser of the Book Festival making sure everything was ok and arranging to come and collect me in the morning – wonderfully kind.

I woke in the night to the sound of pouring rain and wind battering my window and, sure enough, when it finally got light, I opened the curtains and it was a total wash out. I thought this might reduce the numbers who would come to my talk.

However, I got to the venue, and was met by a lovely lady who showed me to the guest yurt (Never been in a yurt before!) where a cuppa tea was waiting for me. I was asked to sign a copy of my book which would be a prize in the Festival raffle.

I then had to borrow that book for my talk as I’d sold my own copy the day before to a Twitter friend. I’d been asked to take some copies to sell at a Care Home conference and had sold out. Someone had persuaded me to sell them my copy. I knew I needed it for something but only realised why when I was sorting myself out for Appledore why I shouldn’t have sold it (🤪)

We left the yurt and while I waited in the wings, someone introduced me and the welcome was wonderful. The hall was full and I immediately thanked everyone for coming out to see me in such bad weather.

I spoke for just under an hour, allowing 10 minutes for questions. I spoke about this that and everything and read a couple of extracts from my book. We had laughter and tears in the audience and questions galore. We had so many questions we ran out of time. Sadly I can’t remember any of the detail but know I had a wonderful time.

After the lovely applause I went out to do a book signing but as I was about to sit down Jeremy Vine came along to say hello – he actually remembered me from when I was on his programme and gave me a hug as well as a piccie.

It never ceases to amaze me that people queue to chat and want me to sign their book……Waterstones even took a piccie for their Twitter feed

I had an amazing time once more. I know how lucky I am.

One day I’ll realise it’s just all too much but for now I’m just enjoying the ride for as long as people keep asking me….