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.

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…….

My morning with 200 wonderful children……

So following on from yesterday blog……after spending the afternoon with the nurses at Whipps Cross Hospital, I made my way down to Tunbridge Wells.

I’d forgotten how the train journey down from London was a commuter train. I saw it had 8 carriages and thought, no problem, lots of seats🙄 but after the second stop at London Bridge it turned into a sardine can…🙈 Very different passengers from those I’m used to – an interesting journey where no one talked😶

I was met at the station by the lovely Dr Amanda Turner, who along with her equally lovely hubby, drove me to the hotel and made sure everything was in order.

I chatted to the hotel receptionist for ages as she was doing a Master in the psychology of crime with those of who have a mental illness or dementia – fascinating. I wish I’d recorded our chat.

I was shattered after the long day so hibernated for the evening.

The evening event the following day is with my lovely partner in writing, Anna Wharton lives and we’d been asked to speak at an evening event about how we wrote my book. We’d been invited by Dr Amanda Turner of the Tunbridge Wells Women’s Equality Party some time back.

It was a shame the local paper wouldn’t advertise the event. Apparently because I wasn’t local and it was about dementia….mmmmm……well Anna is local and dementia is everywhere so maybe that should have been a consideration……hey ho, not a lot we could do.

While I was down there, and since the event was in the evening, it seemed a shame not to make the most of the time. Anna has an adorable 6 year old daughter called Gracie and we agreed that we’d see if the school would agree to me doing do a Dementia Friends session for her year. So I find myself with 200 children…….😳 My little village school has 200 children in total. Gracies school has 200 children in Year 5 and 6😳…….came as a bit of a surprise……

Anyway, I awoke to a very misty atmospheric Tunbridge Wells but the sun soon started to make an appearance and it turned out to be crazily warm…..

Anna duly came to collect me at 9am and the wonderfully exciting day began with making 200 children Dementia Friends at Gracies school.

All I needed was wool, to make into the brain with the help of some volunteers, scissors to use to snip the wool to show when my brain can no longer do something and fairy lights to show how some days I can do things and the next day I can’t

On the journey, Anna mentioned the age of the children as 10 and 11 years old with Gracie being allowed out of her class to help😳……..I’d thought year 5 and year 6 meant age 5 and 6 so had printed my talk for littlies…… we hastily got the school secretary to print the older childrens talk.🤦‍♀️😶🙄

We walked into the hall to find 100 pair of eyes watching us. Gracie joined us as chief helper. I always ask how many have heard the word and know what dementia means and from the first group about half raised their hand and gave some very good explanations of the meaning. Once I’d finished they all trooped back to their classroom to complete their Action card in order to receive their Dementia Friends sticker……

We then had a short break before the older children arrived and had a cuppa tea and selfie in the staff room……

Back in the main hall another 100 older children waited quietly for the next session. When asked the same question, I’m sure nearly 100% raised their hands and knew what dementia meant. Many raised their hands at having someone in their family with dementia. But equally all of them raised their hands to say they learnt something new.

They stayed on the hall with their teachers after we left and had a reflection session on what they’d heard and learnt.

What a wonderful start to the day. I’m sure I said to Anna how I hadn’t thought it had gone as well as at the village school due to it being so early in the morning and my brain not feeling quite engaged but she said it went fine…….and the ‘actions’ the children wrote were just simply, amazing to read….❤️

The highlight for me was meeting Gracie as we’d only met by letter before…..adorable……

Tomorrow will be about the rest of the day, including meeting Derek and Clive and the evening event……..

Training Hospital Nurses…….

So yesterday saw the start of the last mad week before a period of normality. It began in London at Whipps Cross Hospital. Buz Loveday, a trainer in dementia, often invites me to be part of her 4 day course for hospital staff and yesterday was one such case. I speak the afternoon of the first day, so hopefully setting the scene and raising questions from the start.

However the day didn’t start off well….

But my lovely pals on Twitter came to the rescue ❤️. I was overwhelmed by the tweets and personal messages offering help. I found a trio of ‘Hull Trains’ staff helping people, 2 men, one woman, but only the woman had a smiley friendly face. No need to say which one I approached. She helped me with the plan B and said she’s look after me and make sure I got on and got a seat on both trains as they were also travelling on the same trains.

Going the extra mile can take the stress out of someone’s day and a smile costs nothing – no money, no knowledge but goes a long way to helping me feel calm.

Anyway, true to her word, the first train went smoothly and then we got to Doncaster where they had their own chaos. Several more trains had been cancelled including another London train, meaning there would be 3 lots of train passengers trying to get on our one🤯😳😱.

But again, true to her word, she told one of the unsmiley males to carry my suitcase and made sure I was one of the lucky ones to get a seat……..😍

Lots of unhappy passengers but it wasn’t the fault of the staff but they were getting lots of hassle. If the men had followed the womans example and smiled, they would have done a lot better.

Anyway got to London and then had to get a cab to Whipps Cross Hospital. I hadn’t realised it was so far out, but an hour later and with a chatty cabbie, we got there.

Buz had sent me some photos of where I was looking and I found the cuppa tea place with no problem……I could probably sniff out a cuppa tea if I needed to😂

I sat and watched the world go by, with a cuppa, until Buz arrived and took me over to the training room. The hospital cancelled the training a month or so ago due to poor staffing, but today I was met by 9 smiley faces. They were Ward Managers, Sisters and Physios

They wanted loads of photos at the end so they took no persuading at allot have this one taken for me😊

I spoke about absolutely everything and more for 90 minutes from, senses to language, adapting to the hospital environment. One thing I said was:

So often clinicians see the condition and not the person and an even worrying trend is for specialists to see their specific speciality and ignore the dementia……. So you can see how important it is to see the whole person and not just having tunnel vision and focusing on one particular condition.”

We had 30 minutes for questions afterwards and I remember they gave me scenarios and asked what I would do. The only one I remember is when relatives insist that dementia mustn’t be mentioned to the patient. They’re in denial and don’t want it talked about.

I said how that must be one of the most difficult situations to find themselves in and how the patient has to come first. It brought on much discussion but luckily they were all in agreement about how their patient has to come first and deal with the situations as and when they happen.

In no time at all it was time to get my taxi back as I was heading to Tunbridge Wells for a couple of days – more of that in following blogs.

Another wonderful day and interesting to see what they weren’t aware of and hope they learnt much. I noticed lots of note taking, so hopefully it was worth the trip………

Me and the lovely Buz😊

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…..

The Panic Of TIME ……..Poem

I wrote this poem the other day after waking, thinking it was the early morning when it was, in fact, the  afternoon and after only a few minutes of sleep. It wasn’t a normal confusion on waking, I really didn’t know the time of day. I was totally confused and anxious. It took me a good while to work out the reality and understand what was going on. It was my new technology friend, Alexa. who helped bring me back to reality and offer calmness in the end – that was once I remembered she was there and saw the little black box on my bedside table………

The Panic of TIME

I’m peacefully asleep
Time of no importance
At peace with time
Time can disorientate
Time can confuse

But then the peace is disturbed
I awake
And Like a Jack in a Box
Time JUMPS out at me
I need to know the TIME

If I can keep track of TIME
I can keep dementia at bay
But if I lose that sense of control
That’s when it laughs in my face
That’s when dementia comes out to play

The cruel deception or the lies
Is it day time or night?
I need to know the time
I tap on my wrist
The reassuring light of my Fitbit
Illuminates the TIME

My heart rate declines
The panic decreases
I’m in control of dementia
I’m in control of TIME
I close my eyelids, hiding the wide awake eyeballs

Peace again as I drift into asleep…………