An Invite to Norwich…….

On Friday I headed off to Norwich for a lovely event and chance to read from my book and talk about living with dementia.

Norwich is not the easiest place to get to…….a bus and 4 trains😱 and Saturdays are usually ‘me’ time. However, I’d been asked eons ago by Bryony Porter – one of my favourite species of humans, a PhD student from Norwich University. I spoke at the University last year some time and now Bryony had asked me to Norwich to celebrate my book at a different venue. So how could I refused? I knew she’d sort everything for me, so I was in safe hands.

She’d had a conversation with a group of volunteers who run a Cognitive Stimulation Therapy (CST) groups in the community in Norwich. The group is called The Forget Me Nots and Bryony has been volunteering for them for the last 2 years now. They also run another group at HMP Norwich Prison. Their aim is to improve lives of people with memory difficulties and their partners in care through group Cognitive Stimulation Therapy. They’ve also won an award for their work at Norwich Prison.

Anyway, everything was agreed and Friday saw me wending my way, testing the rail transport once more……🙄 Brony had kindly agreed to meet me at Norwich station along with Judith Farmer, a retired mental health nurse and Lead Volunteer for the group, and had sent me the required photos so I don’t go off with anyone! Ha!

And the first thing we did when we met at the station was take a piccie of me and Bryony and the welcome Norwich immediately presents….

We then had a scenic drive to the hotel via the Octogan where I’d be speaking on Saturday. It was beautiful and so peaceful even though we were in the middle of Norwich. It had an amazing ceiling

And was very tranquil…..

Before they left Judith showed me the garden and made my day. In tomorrows blog, by pure coincidence and written last Friday, long before my arrival in Norwich, I mention the rose variety, Peace, from my childhood….. and……. as we turned the corner, there it was. An old Peace Rose bush in full bloom…..

Read tomorrow blog for the significance…….

We then drove to the hotel on the outskirts of the city and agreed a time for them to come and have breakfast with me the next morning. It was then a very strange thing happened….😳…..I looked at my weather app to see the weather for tomorrow only for it to tell me I was in ‘Keswick’ 😳🤯……….I thought the map had gone wrong until I spied the title…….Keswick, Norfolk………well I never…….

The following morning, over breakfast, a woman came up to the table just to say hello. She was staying there and noticed me sat at the table and had to come over and tell me she was in the middle of my book😳……..how random……..but a good start to the day……

After a lovely breakfast, we drove to the venue to be met by some lovely members of the group who already had the kettle on⭐

They’d set up a lovely display of my books, as the local bookshop had provided 20 books to sell, just in case anyone wanted one and cut one of the Peace roses from the garden❤

People then began to arrive – far more than we expected……one couple had come because their daughter from Brighton had seen it on Twitter! They were all welcomed with homemade cakes and a cuppa by the Forget Me Not people.

Once everyone had taken their seats, we closed the main doors to allow the wonderful acoustics to shine so I didn’t have to use a microphone.
Danuta Lipinska, introduced me with such beautiful words and I began my 2 hours of talking, reading and answering so many questions, I couldn’t believe how quick the time went!

It felt like I was in a roomful of kindness and in the most beautiful peaceful setting. People made such nice comments. I obviously didn’t type but I spoke about anything and everything.

Someone has just sent me this of me and the Forget Me Not Volunteers…..😊

To finish off the day, and once everyone had left, the Forget me Not volunteers all stayed and we had a picnic in the peace of the wonderful Octagon.

I think the embroidered banner hanging high from the balcony in the Octagan said it all

Have Hope – perfect😊

What’s more, they paid my expenses there and then…..in cash……what more could I have asked for. Oooo and we sold all the books!
Wonderful company, in a wonderful venue with people from all walks of life….I was convinced I had piccies of everyone else but they seem to have disappeared as I would have loved to show you their smiley faces…….🙄

Friday Reflections……..

I seem to be a reflective mood so often lately and todays blog stemmed from seeing a wedding photo.

The couple had been married many many years and the partner had died recently, having had dementia. The mourning wife had lovingly chosen the photo of their wedding day as her favourite photo.

I began to look deeper and found that many choose their wedding day photo, when the future seemed far away, when love was fresh, new and with so much of the future spread before them.

It’s then my reflective mind took over, as I was sitting in my conservatory looking at my sprouting seed trays on the wall outside my window.

The growth of a tiny seed into a wonderful plant with beautiful flowers never ceases to amaze me – the true genius of nature. Two tiny leaves being the first to appear, followed by four…….. If cared for, supported by canes and watered it becomes strong and before you know it, time has flown and without you realising it, has produced buds which in turn brighten any summers day in the beauty that follows in the flowers.

The wedding day photo can be compared to the seed I sowed.

Just as seeds contain tiny secrets of perfection, then the wedding photo of many moons ago is that very same seed. With memories of beauty unfolding throughout the years; of flowering blooms as children are born. With love, care and support for one another, strength and beauty of its own develops. Adventures are there for the taking and love grows stronger until age produces a different relationship. One of distant memories, yet strength and a deep bond Formed.

But when dementia strikes, the plans made are thrown into turmoil, yet the love, the bond remains until the end…..

We’re rarely drawn to ageing beauty, just like the fading flowers and bedraggled end of season leaves, our annual plants are pulled out of the ground, and yet we bury our loved ones in the ground. Seems a strange reversal. We remember the plants at their best, just like the wedding day photo.

As sure as my bedding plants of the summer will fade and die, so, eventually will we……..but what beautiful memories remain……..life reflecting nature….

The result of one of my tiny seeds sowed earlier in the year…..

Young Onset Dementia Network……..

Yesterday I trundled down to London for a meeting of the Young Onset Dementia Steering Group… We have a Research Conference coming up next week, so the final plans needed to be put into place.

The day started off very stressful…….due to the trains…..what else? My lovely taxi man arrived nice and early and we innocently and happily headed off towards the station. I knew things were quite right as we approached as the 6am Hull Train service to London was still in the station – it should have left 20 mins ago…….😳

I wandered down to the platform to find the passengers staring wearily out of the window…..and they sat……and sat…..by which time my train was due. Suddenly the doors opened on the London train and angry passengers alighted to be told the train had no breaks😳 and wouldn’t be going anywhere fast. The problem with this is….we only have a little station and one train being stuck means no other trains can come and go……apparently it happened the day before and the day before that🤐

They suddenly announced the’d be going back to Hull but couldn’t take passengers as they were travelling without breaks🤨

After that train had left, no information or the wrong information appeared on the screens. The ticket office didn’t open for another half hour so no one knew anything…….a platform full of passengers no knowing what was happening. A train came, we looked hopeful, but it went sailing past saying ‘Out of Service’😶, another came but was going in the wrong direction…….then the tannoy system announced the delayed Bridlington train (wrong direction) would be arriving next – it wasn’t, it was a Hull train……..🤯

Luckily I got to Hull with seconds to spare to catch my train and as I boarded. The doors slammed and it left😰

Not a good start to the day……but at least the sun was shining……

I arrived to find Hilda Hayo – CEO from Dementia UK. And we wandered upstairs together chatting and catching up. Donna was sorting out the technology for Jackie to Skype into our Research meeting prior to the main meeting.

Donna earned her brownie point and got me a cuppa.

We discussed the agenda for our conference next week – very exciting as me and Hilda are doing a Goldfish Bowl discussion, which I like. AND best of all my lovely playmate, Prof Pat Sikes will be there for a hug as we havn’t seen each other in ages even though we email regularly.

Once we’d finished our hour it was time for the rest of the Steering Group to arrive for lunch. Once we were fed and tea’d Tessa started off the meeting. We welcomed Sarah Jamieson, a nurse from Australia, here to learn, who came over to say hello as she’d bought my book over in Australia – wonderful!

Michael Jackson and Louis Thackeray from Public Health England Skyped in to talk to us. They are part of the The Dementia Intelligence Team who analyse data for dementia which is supposed to inform provision of care of people in England who have dementia…….they don’t collect data, they analyse data already recorded.
Last year they identified a gap in relationship to the data around Young Onset – and then proceeded to mention my name and blog😳 and book🙄

30% of GPs don’t record detail specific to Young Onset. They’re looking at why? Are they not diagnosing, are they not diagnosing well or some other reason?

For my CCG (East Riding) the data currently says 2 out of 10,000 people and for Keith’s area it’s 4 people out of 10,000

Mine – for every 100 people diagnosed with dementia, 2 will have Young Onset.
Keith from Canterbury CCG has 4 with YOD out of 100 diagnosed
And Bradford has 10 out of 100
The England value the number is 3 people out of 10,000 and 3 people out of 100 diagnosed have YOD.

However, I’d be asking – are these figures for Bradford higher because services are more prevalent in e.g Bradford – do GPS therefore diagnose more readily.Often GPs don’t code data appropriately if someone has a rarer form as under 65 but under the specific dementia. There are many reasons why the data isn’t accurate, but they seem to acknowledge this and are working to find out why.

Donna then filled us in on the Network – We now have 1646 members and 135 members are living with dementia. We need to get to 2000 before our anniversary in September. So we need to promote the Young Dementia Network. Anyone anywhere who has an interest in Young Onset can join, so anyone reading this, please go to the web site and consider joining.

https://www.youngdementiauk.org/young-dementia-network

My typing seems to have stopped and started as I’m sure we did loads more……but thankfully……….

Cuppa tea time………👍

Sarah , nurse from Adelaide in Australia. She realised there are residential services for older people with dementia to create a calm environment but not for those with Young onset who need to live in care. People with Young Onset shouldn’t live with people of a much older age with different needs. So she’s here on a Churchill fellowship looking and meeting people to learn things to take back – she believes we’re 15-20 years ahead of Australia😳 Age appropriate residential care of whatever shape that may take.
Dominique, CEO of The Good Care Group,  spoke of their inhome service to reshape the service for those with Young Onset.

Jan then spoke about the Research Conference next week where our aim is to bring together those affected by Young Onset and Researchers. We have a fully booked day and a variety of attendees. It’s going to be an interactive day with workshops leading one into the next.

I then appeared to have stopped typing altogether. My head did go slightly off kilter and I even forgot my jacket with keys and tickets etc at the end😱 Luckily I realised before I walked out of the building as I couldn’t find my keys and I came out of the lift to find Jan just getting in it to race after me and Keith on the phone leaving me a message. So I then just sat in reception for a while to get myself together before ambling back………

So the conference next week is sold out but the big one in Birmingham in September can still be booked

Can’t believe I didn’t take any people piccies 🙄…..just not quite with it today…..

Night Time Ramblings…….

It’s often when my creativity is at its best – that half way point in the night when barely asleep and barely awake; that state between sleep and consciousness when thoughts and sentences are allowed free access and float around, unhindered by the natural thoughts of the day.

All of the above, I found written on post its notes one morning last week. I have a small post it note type pad beside my bed along with a pen. I often find a pile of these on my floor but have no recollection of having written them. But they’re always filled with wonderful sentences and deep thoughts from the night. I don’t sit up and write; I don’t even think I open my eyes; I must simply grab the pad and pen and write a few words on each page, before tearing off and letting it drop to the floor before writing a few more words.

The next morning, with no recollection,  I grab them all up off the floor and type out each one and then try to piece together the puzzle. Pages are sometimes still attached which makes the problem solving easier, but I’m often amazed at the words I’ve written.

While me and Anna were writing the book. She’d ask me a question and sometimes I’d give a rubbish reply but she’d wait until the morning and more often than not, my hands had written the profound answer in the night and I’d gain my brownie point for the day……😇

Tiny gems of thoughts uncovered in my sleep…

The trouble is my writing has gone to pot and sometimes my thoughts are illegible and gone forever. But trying to solve the thread of thought is another form of sudoku for my early morning brain.

It’s always an exciting exercise to see what my night time mind has been thinking.

Just like solving the genuine from false smile on a person. The answer lies in their eyes. A genuine person smiles with their eyes, a fake smiler has no twinkle………….

All the words in Italic were found on post its on the floor the other morning. I used to have post its by my bed when I worked. If I woke in the night with a thought about a task or a solution at work whittling away at my tired brain, I’d write it on a post it which would allow me to return to sleep.

Maybe now, thoughts are allowed a clear passage at night time but the routine of writing on a post it is still there……

For those who weren’t aware or hadn’t realised, the yellow on my book cover are post it notes escaping from my mind…..

Words do matter when delivering a diagnosis …….

Todays blog is quite simple for me as I’ve already written it. Psychology Today asked if I’d like to blog for them. I agreed for the simple reason, it gives me an opportunity to think and write.

Language has long been a bug bear of mine since my diagnosis. The language used by and the body language of the healthcare professional giving that diagnosis, of whatever condition , but in my case, Young Onset Dementia  – the language and body language determines the state of mind of that person as they walk out of the consulting room.

Here’s the link to the piece I wrote for Psychology Today……

https://www.psychologytoday.com/us/blog/which-me-am-i-today/201806/delivering-diagnosis-dementia

Words Have Power Concept – Courtesy of my dear friend Google…..

Forgetting I’m unwell….as advantage?

Last week when I spent a couple of days in my paradise, Keswick, I felt really unwell. An unusual set of symptoms – a razor blade throat with tender swollen hands and wrist😳🙄

Now I’m not ill very often – well I don’t think I am🙄 and I tend to see it as a nuisance not to be dwelt upon. However, as you may have seen, I recorded it on my blog last Friday in a poem, as it had a deeply disturbing effect on the night. It was my usual stop start stop start sleep wake sleep wake night, only more awake

Red is awake…..wake, sleep, wake, sleep……my norm is 2-3 hours.

What I also hadn’t realised is that I forget I’m ill 🙈 until I’m quickly reminded of it….Thursday I got up feeling very under the weather and wondered why my fit bit was so tight on my wrist….only to remember how my hands and wrists were swollen……..Then, after my shower, when I was drying my hands, I remembered how tender my hands were……😶

I was then talking quite happily to other guests over breakfast, feeling content in their company, when I swallowed and remembered how sore my throat was……all very weird

When I’m in the company of others or am whatsapping people, I can forget everything bad as I’m just so happy to be in conversation. It’s only when I stopped, swallowed or touched my hands that I was reminded again how rubbish I felt. I was also totally exhausted but only felt this when I stopped…….

With these facts stored in your mind…… I set off happy as I was going on a new bus ride from Keswick to Seatoller…..only 30 mins…..but a bus I hadn’t noticed before. I lasted the half hour there and hour back as I had the company of a couple who’d never been to the Lakes before so they kept me occupied chatting.

Beautiful scenery from the bus….

My plan was then to hop on whatever bus was waiting and it turned out to be one I always go on, that goes through Grasmere, Ambleside and Windermere……a glorious route where I’m usually hooked to the window taking pictures…….not this time……I suddenly woke up with a start as the bus stopped to pick up passengers…….😱…….I’d fallen asleep as I was soooo tired……I’d missed all my favourite scenery ….

I often get off at Grasmere and catch the open top bus to Bowness……so, realising we hadn’t got there yet, I got off happily, looked at the open top bus all ready waiting for me…….and sat on the wall……..I’d swallowed and felt the harshness stinging my throat and all I really wanted to do was sleep…..Several minutes later, I wondered why I was so tired…….

So instead of my usual jaunt on the open top bus, I wondered round Grasmere for 15 minutes before my legs came to a halt, reminding me again, I wasn’t well. I kept having to think for a few seconds ‘what’s going on?’ each time my body was refusing to play ball. I kept forgetting I wasn’t well…….the bus wasn’t due for 30 minutes and usually I’d wander around, but this time I just stood……stood until it was time for the bus…..

Once I was back in Keswick, I made my way back to my B&B for a cuppa……and promptly closed my eyes……….

You may or may not have noticed that throughout this story I havn’t mentioned stopping for a cuppa tea……well tragically, that’s another side effect of not feeling well. Throughout my life, my body has always told me what it wants and what it doesn’t want. Usually tea is high on the list, but not today. My body wanted water, so water it had to be. Tea just didn’t taste the same…….😱

Is this why people who can’t express how they’re feeling, so often get misinterpreted. I don’t know the answer, I’m just relating it to my experience, how I thought I was well one minute, not well the next. Even though I forgot, I was able to work out what was wrong. I exist in the particular moment and if distracted by happiness all evidence of illness disappears.

Maybe that’s why I survive on so little sleep – because I’m so caught up in my day, my body has become accustomed to exhaustion as a normal state……who knows……

The thought that I mustn’t stop doing, mustn’t rest for too long probably doesn’t do me much good but then I know dementia is peering round the corner waiting for me to do just that and pounce ….For this reason I suppose I daren’t stop……..

For those who can’t communicate or can;t explain, life must be even more confusing……..to be in a permanent state of confusion…..well, not well, well, not well…..as they forget and realise all over again…..

Seems an appropriate selfie of me hiding in the shadows away from dementia….

Sharing the night with dementia – Poem……

I knew I needed a break so took my self off to my paradise, but Wednesday night was a weird night of the usual interrupted sleep but also ……much more……

Sharing the night with dementia ……..

A young girl’s ghostly cry
Cut through the silence of the night
Her sobs piercing my heart with her sadness
But is she real?
Are her cries true?
Or is dementia laughing cruelly on the sidelines?

My hands feel strangely raw
Painful and swollen
My throat in training for a circus act
Of swallowing razor blades
To please a crowd waiting for drama

I close my eyelids
But my eyeballs refuse to join in
Wide awake and staring
A man screams out
Shouts and commotion

I jump out of bed
And look through my window
Ready to shout out
And come to the rescue……

But all I can see is
The stillness
The beauty
The calmness
Of a night in paradise

I’m sure I can hear dementia sniggering….

I knew I needed a break……and good job I’m in paradise which will help me get over the night……

The Loss of One so Loved – a Poem….

I rarely dwell on my losses
Or wish for days gone by
But the elusive you
I miss so much
And would love you visit
Just for a while……

You gave me energy
You gave me peace
But now your visits are fleeting
Are over before I know it
Just one more long visit …..please

You come, you go
Never staying for long
Just teasing with your presence
For minutes, for an hour at most
And then you vanish
The laughter of dementia, taking you from me

And who or what am I referring?
Some long gone lover ?
Some longed for friend?
No………..
Just……… a good nights sleep……

The Village Book Club visit……..

When I first moved here however long ago, I knew the villagers wouldn’t take kindly to an outsider coming in and immediately wanting to make them a good community for people with dementia, like me. So I’ve bided my time……..quite rightly…..

I needed them to accept me simply as me to begin with, not as someone to worry about because I had dementia. I also wanted them to come to me in due course to know more, as people learn better if they’ve asked rather than if they’re told they need to learn.

For my neighbours it was important I allayed any fears and concerns from the start as the people I’d bought the house from knew I had dementia and seemed the sort to have told people. To be told you’ll have someone living with dementia, on their own next door, when you might not have any understanding must be a bit of a scary thought……especially if I’d have left them to come to their own conclusions. It may not have helped me either!

So I TALKED to them – it’s well written in my book how I met one neighbour. For the other side, they invited me in for a cuppa and we laughed and joked and left with phone numbers, should I ever need help.
I’ve had nothing but kindness from all my neighbours.

Gradually, as the media articles filtered through the village, it became known to far more that I have dementia. It’s a welcoming village anyway and that’s what appealed to me from the start; the friendly faces and hellos’ as you walk around.

The older people in the village all acknowledge I have dementia but never say the word itself. At the bus stop, as I join many of the older generation, we chat happily waiting for the bus and then I’m allowed on first…….just so they’re happy I get on, and then even the bell rung on the rerun journey to make sure I get off……..and if I’m waiting at the town bus station people make sure I get on the right bus, especially after to the confusion of late with the change in bus numbers.

So you see I live in a kind, people friendly village.

My blog recently told of the wonderful afternoon I spent at the village school talking to all 272 children about dementia. I could have approached the school earlier, but that wouldn’t have worked in the same way. I waited until the time was right and the Head approached me.

I had trouble with the dustbin collectors not bringing my bin back to my pathway; they left everyone’s on the main road. But I found it difficult to drag it up the steps back home again. So I wrote to the council and explained the difficulty and now, each week, my bin is brought back to my house. Simple solution achieved by talking and explaining…..

So my village is slowly but very surely, becoming more dementia aware because they want to, not because they’re being told they have to and because they’re listening.

Which led to a wonderful invite last night to the village book club. This month they’d all been reading my book and last night was their discussion night.

Pam, who had asked if I would attend, came to pick me up as it was only a few years from home in the village pub. She’d spoken to me a while ago and then posted a note through my letterbox. The note offered different ways of contacting her as she’d read how the phone was difficult – wonderful……..

We were the first to arrive and the local pub allows them to use the room free, they just buy a drink while they’re there and Pam immediately got me a cuppa tea😇

The others started to arrive and before we knew it everyone was seated. I didn’t take my ipad so havn’t a clue what we talked about but they said the kindest things. I remember we laughed an awful lot. The local library still has a queue of people waiting for my book😳 so one person sadly hadn’t been able to get a copy. Others had read it on kindles, others had bought the book. They all said how much they’d learnt about dementia and positivity……

It was way past my bedtime when I left but I remember feeling very happy and before I left they agreed to me having a piccie of their cheery faces…….

if they met me in the village, they’d now simply introduce themselves as the Book ladies……..a wonderful evening a few yards from my home…..❤

Today my book is published in United States and Canada…….

Who would have thought, 4 years ago, when diagnosed with dementia, that those words would have been typed from my fingertips….?

It’s amazing what opportunities can come your way even after the most darkest moment.

It’s a land so vast that the ripple effect may not happen as it happened here in our tiny country, Penguin random house has given me that opportunity to find out. Lisa Genova, author of Still Alice kindly reviewed my book there….

The cover maybe different, but the words inside are still the same apart from a handful of word changes for the good people who choose to read it will understand what I’m talking about…

The audiobook is my voice – another wonderful opportunity that came my way and for those over the Atlantic can be found here:

http://www.penguinrandomhouseaudio.com/book/563464/somebody-i-used-to-know/

The name of stores selling my book, totally unfamiliar to me but apparently very well known over there – Barnes and Noble store, Books a Million as well as on line – all waiting for a new audience to read my book….

Today, I hope will be the beginning of making new playmates in these far off lands across the Atlantic. Let’s see if this vast nation embraces my book as many have so far, or whether it will disappear into its vastness…like a grain of sand found on a beach…

If it switches on a light for a few around the reality of dementia, just enabling the light to flicker for a few people will have made it all worth while.

So all you people over there, let me know through Twitter, my blog or a simple email, what you think of the world I reveal in my book.

Amazon US have already included it in their Best Books of the Month section under memoirs…..very humbling ……

I wonder if they’re ready for someone like me and my book, Somebody I Used to Know….?