My final hug in a mug….

Dear everyone who has followed my story and anyone else who cares to read this…

If you’re reading this, it means this has probably been posted by my daughters as I’ve sadly died. Sorry to break the news to you this way, but if I hadn’t, my inbox would eventually have been full of emails asking if I’m OK, which would have been hard for my daughters to answer… In the end I died simply by deciding not to eat or drink any more. The last cuppa tea…my final hug in a mug, the hardest thing to let go of, much harder than the food I never craved…This wasn’t decided on a whim of self pity as you’ll discover by reading on.

Dementia is a cruel disease that plays tricks on your very existence. I’ve always been a glass half full person, trying to turn the negatives of life around and creating positives, because that’s how I cope. Well I suppose dementia was the ultimate challenge. Yes, dementia is a bummer, but oh what a life I’ve had playing games with this adversary of mine to try and stay one step ahead. 

I’ve been resilient throughout my life, even from a young child, so resilience is inbuilt in me to cope with whatever life throws my way.

Who would have thought, when diagnosed all those years ago, that my life would turn out quite as it did? I’ve always liked to have a plan, something that makes me feel in control of dementia. I ‘planned’ for the future by completing my LPA’s and ReSPect form, and sorted my advanced care plan in minute detail with my wonderful GP. 

Sadly assisted dying isn’t an option in this country. With something that will affect 100% of the population, regardless of wealth, intelligence or ethnicity, it’s amazing how such little value is placed on the act of dying. For those that have read my book, One Last Thing, you will understand why I feel so strongly about assisted dying. The only legal choice we shouldn’t have in life is when to be born; for everything else, we, as humans, should have a choice; a choice of how we live and a choice of how we die.

Facts and figures show how, in those countries where assisted dying is legal, people live longer. Having that ‘magic potion’ within touching distance enables them to choose life for much longer. In countries where it’s illegal, such as the UK, people have to die sooner than they might otherwise choose. Like me, they have to have the capacity to make such a decision if death isn’t to be a lonely and often violent act.

My first book was kept on some people’s bookshelves for a year, or even two, because they were afraid to open it and read what’s inside. But when they did they found nothing of the fear they were expecting and instead found dementia unravelled. I want the same to happen with my last book, One Last Thing – How to live with the end in mind. Some people will be afraid to open it, yet, when they do, they’ll question their own reluctance to talk about the one thing that will affect us all.

To feel I had some control over the future makes the business of living so much easier. To talk about death makes it easier to concentrate on living.

To have an option within your grasp enables you to relax and live life. In America, for example, some people are eligible for assisted dying. But when they receive the magic potion that would take them from this life, having it enables them to feel in control, and many choose life instead of death for much longer.

So, what has all this to do with my death?  If assisted dying was available in this country, I would have chosen it in a heartbeat, but it isn’t. I didn’t want dementia to take me into the later stages; that stage where I’m reliant on others for my daily needs; others deciding for me when I shower or maybe insisting I had a bath, which I hate; or when and what I eat and drink. Or what they believe to be ‘entertainment’. Yes, I may be happy but that’s irrelevant. The Wendy that was didn’t want to be the Wendy dementia will dictate for me. I wouldn’t want my daughters to see the Wendy I’d become either.

Through writing my last book, I spoke to many amazing people, both in favour of assisted dying, against it, but also those in palliative care. Many of those specialists believe we should concentrate on providing gold standard palliative care. But in my humble opinion, it shouldn’t be a case of one OR the other. The choice should be ours to make. Yes, of course gold standard palliative care should be available for all, but so should the choice of assisted dying. Even the most wonderful palliative care imaginable could not stem the incoming tide of dementia. It was up to me to do that. 

The incredible inventors within our great NHS have enabled advancements in treatments not even imaginable some twenty or thirty years ago, but, they will never discover a treatment to prevent the inevitability of death. While all these advancements have been taking place, successive governments have ignored the growing ageing population; have allowed, through lack of investment, our greatest gift, the NHS, to crumble before our eyes. To die later surely means to need more medical intervention. Everyone but our governments have seen this happening. Dying has been ignored, swept under the proverbial carpet. The choice of assisted dying could be the answer to so many people who actually don’t want to exist when medicine can keep them alive. Those who succumb to illness may not want to have their life prolonged, simply because it’s possible. Or maybe some people would just like to call time on their life because, in their mind, they’ve had a good life and now is the time to end before the tide of good fortune turns.

In the end, I wanted to choose the one option I said in my first book I would never choose – Dignitas, in Switzerland. After looking at every option and eventuality, this was the only place that would give me a dignified death. I’ve no fear of flying on my own now, as I would never ask my daughters or anyone else to fly with me, because of the complexities of the law when they flew back. But it also means my daughters can’t be there with me, holding my hands in my final moments. 

I was hoping to go there at the beginning of the year. However, my plans were turned upside down when I had my fall, breaking both my wrists and revealing damage to my neck and spine. I would no longer be confident to travel alone to Switzerland.

I’ve said for a long time that I don’t want to be an inpatient in a hospital, or a resident in a Care Home. It’s the wrong place for me; the loss of routine, familiar surroundings and people. For some they may believe it’s the right place, or they have no option.  I’m NOT saying it’s wrong for everyone, I’m saying it’s wrong for me. You may say, ‘but my mum’s in the late stages and she’s very happy in her care home’. I’m really pleased she is, truly, I am. It’s just not the place I want to end my years.

Many people focus on moments of happiness. Someone I interviewed was very adamant someone in the late stages of dementia was happy because he played the piano and made other residents happy… but my argument was, what about the other 23 hours of his day? Are they spent in confusion, of wondering why he’s there? Does he like being totally reliant on others? Would his former self have chosen this ending to his life? These questions can never be answered, of course, but I’ve taken the decision to answer them for me now, while I’m able.

I’ve always given people hope, or I like to think so. Have I stopped giving people hope by choosing the death I’ve chosen. Or have I given people hope, that IF they wish, they too can have hope for an existence of their choosing, or a death of their choice?

My life was for living, but now it’s time for dying. So, if you want to do something for me, please campaign for assisted dying to be law here. 

Adapting to this life with dementia is over, but I don’t consider dementia has won, as that would be negative and you all know I’m a positive person. It’s ME calling time on MY dementia – checkmate, before IT plays its final move. As the video below shows, that was created for my first book… I was determined I wouldn’t forget, and by doing this now, I haven’t. Yes, I’ve had to die before my time, but I had to make sure I had capacity and hadn’t allowed dementia to creep in overnight and take that capacity away from me.

In the end, after my accident, the only choice open to me was to stop eating and drinking.

I learnt about Voluntary Stopping Eating and Drinking (VSED) as my way out of this world during the writing of my book. I spoke at length with my daughters and I spoke at length with my GP over the last few months, always including her in conversations with my daughters, to give that ‘expert’ information to questions I could never have answered.

I don’t feel hunger or thirst, meaning that part of the process would be less stressful for me than for others. 

After my fall downstairs at home, my lovely friend Philly came to stay with me to help support my daughters and me. It was during this time, and after many conversations with my girls and Philly, that I decided this was my time to end this cruel life dementia had thrust upon me. I wasn’t depressed, I wasn’t forced or cajoled in any way whatsoever, it was solely down to my choice. I was ready.

You may or may not agree with what I’ve done, how and when I’ve chosen to leave this world, but the decision was totally mine.

My girls have always been the two most important people in my life. I didn’t take this decision lightly, without countless conversations. They were the hardest conversations I’ve ever had to put them through. Some people may be angry at what I’ve done and that’s their prerogative – but don’t take that anger out on anyone other than me. This was all MY CHOICE, my decision. So please respect my daughters’ privacy, as they didn’t choose the life I chose, of standing up to and speaking out against dementia. 

Thank you to all those who have supported me along the way…your support was invaluable.

So, enjoy this video knowing that dementia didn’t play the winning card – I did.

Photo of me back in a time when dementia wasn’t even a word that existed in my vocabulary….

Last blog for a while…….

Hello all

Luckily the last 2 weeks of blogs were written a while ago. 

Some of you may have seen on Facebook, but for those who havn’t…..I’ve got myself in a bit of a pickle….🙄

On Sunday 28^th Jan. just 3 days before my birthday, I was getting ready to head to my daughter Gemma’s for a Sunday morning cuppa. Life was very normal, then suddenly my life was turned upside down, quite literally as I fell downstairs and spent the next week living my worst nightmare in Hull Royal hospital 🙈

I did it good and proper with 2 broken wrists and other injuries, which I’ll spare you the details. I did have a visit from an amazing therapy dog called Molly. By the time she left my smile had reappeared

 The stay in hospital really affected my dementia, which is unsurprising, but by the following Sunday, I was ready to discharge myself. However, we had this amazing nurse who knew I wasn’t joking, and she sorted out everything in record time and at 4pm, just as she’d promised, I’d escaped my cell and was outside in the fresh air…

Needless to say my girls have been wonderful, as have friends and villagers. My lovely friend Philly from the Outer Hebrides has flown down to help my girls out keeping me in check 🤪

However, typing is both exhausting and painful, so I’m going to give myself time to recover. It may be a long slow process so expect me back when I reappear.

Hugs to everyone

Wendyxx

Friday Extract…

I thought I’d now give over Fridays to my final book, One Last Thing – how to live with the end in mind, which is out in paperback on February 29th….pre orders are an authors dream…just saying 🤣

You can see from the image below that my wonderful publishers asked the designer, whose name escapes me 🙈 (he’s designed the covers of all my books though) to switch the colours around, which I love.

Anyway….HUGE thank to my partner in writing, Anna Wharton, for pulling these extracts together for me. AND, by the way….it’s her birthday today 🥰…Happy Birthday Anna!

What better place to start, than the beginning and the Foreword….hope you enjoy.

Foreword

Death. It’s a strange place to start a book. It is, at first glance, the end. There is nothing more final, nothing more inevitable. Death is the great equaliser, however much we try to avoid it. It depends, of course, on your religious persuasion as to whether you believe there is life after this one, or just a black abyss. That is not what concerns me as I write: what awaits us after we have died we shall have to discover when we get there. Better to focus on another journey, the one towards the inevitable – a journey that I now find myself on. 

Those who have read my previous two books, Somebody I Used to Know and What I Wish People Knew About Dementia, will know that on 31 July 2014, I was diagnosed with young-onset vascular dementia and Alzheimer’s disease. At the time, I had a busy job working as a rota manager within the NHS, I had raised two girls as a single mother, I was a keen runner, and the diagnosis stopped me in my tracks. 

I sank into a deep depression, all too common after diagnosis of a life-limiting illness. And completely understandable. We all know we’re going to die, but it is, for the most part, a luxury that we can afford to push far back into the horizon of our minds. Instead, we busy ourselves with life, with waiting for the next holiday, counting off the days that separate us from weekends, or we wish the now away and convince ourselves we will live more happily once we shift that stubborn half a stone, or stick to our promise of good food and exercise. There is always something lying in the future that will make us appreciate life more totally. Perhaps it’s what we call hope, a wonderful part of the human condition – but hope relies on time. And we don’t all have that. 

A diagnosis of a progressive or terminal illness takes that hope away, or at least it dulls its bright beam so that in the interim it feels impossible to see through the dark clouds that descend. 

I still remember those dark clouds, that hopelessness. I have said many times before that dementia is a bummer of a diagnosis and you could apply that to any progressive or terminal illness; there is no getting away from it. But I think my own diagnosis was made harder by the attitude of medical staff. I assumed it was the end because they didn’t tell me any differently. 

There are some who, having received such a diagnosis, stay in the dark clouds, struggle to find their way back into the light. Perhaps they think there is no point. After all, we live in a society that seems to value more the able body or able mind. But during my own journey living with dementia, I realised that my particular progressive illness had a beginning and a middle, as well as an end, and when there was so much life to be lived in between, why was my mind racing towards those closing chapters? Perhaps it was a case of wanting some control over the cards that life had dealt me, a way of convincing fate I had got there first, that its cruel surprise had failed.

I felt it so strongly that I wrote in both of my books that there is hope after a terminal or progressive illness, and I still believe that to be true. I also wrote how these same diagnoses can sharpen the mind with regards to living in the present, how they make many of us who are living with them – living, not dying – more mindful of living for the day, in some ways leaving us more alive than we were the day before our diagnoses. That is our incredible human instinct for survival, our ability to see the light through the dark clouds. 

Living with dementia, nine years on, the clouds descend more frequently now. What keeps me going during those foggy days is hope – hope that tomorrow will be a better day. But more often, one day becomes two, becomes three, four, five, and the fog hangs around, making my thoughts all sticky with glue. But the hope still cuts through –tomorrow might just be better. I comfort myself that while that thought is still able to burn through, I have not gone over the edge. I am still me, not quite the Wendy I used to know, but recognisable. 

But I am aware that there is an edge now, even if I cannot see it as it comes closer. I am aware that more days after I finish writing will be spent in the fog – until the day when I don’t find my way back out again. And so I would like to turn my attention to the end. That is why I have started this book with death. 

If I have been able to adapt to life with a progressive illness, I would like to think that I will be able to adapt to life with the end in mind. Here, at the beginning of this book, I wonder what that looks like to others and what it might look like to me, and I am going to invite a whole host of people to come and discuss that with me – and you. I will ask the questions that we all might have: what will the end look like? Will there be pain? Is there anything I can do now that will make me more comfortable? Is there anything I can do to hasten that ending if I feel I may suffer? I will be accompanied, as ever, by my partner in writing Anna Wharton, who has co-authored both of my previous books. On the days when the fog has descended and mixed up my thoughts, she will ask the questions for me. 

I invite you to read this book as if you are joining in the conversations between Anna and me and the people we have asked to share their experiences. Some of the stories and the answers will be sad, others will make you laugh, but I would like you to read as if you have pulled up a chair, cup of tea in hand, and you are sitting at the table alongside us. Pause at the end of them if you like, and write some notes about what you think – I’ll leave lots of space for you to do that. 

Please do not fear: you will not find anything frightening within the pages that follow. I am not trying to tell you how death must be done, or how it should feel for you. I just want to gently remind you that one day it will come, and the more prepared you are, the more conversations you are able to have with medical professionals and with those you love, the more empowered you will feel to live in the now – and you don’t need a progressive or terminal illness to do that. I will share with you how I feel about death, and some of what I reveal might surprise you. Be sure not to let it make you feel sad; know that I am making my own choices as far as I can, as one day you will make yours. I would like to be a light that guides the way. 

See this book as a gift, a focus on the present by glancing – just a peek – into the future. And with that, we better get on with the business of living, and to do that, we need to talk about death. 

Wendy Mitchell, autumn 2022

A calm day after a very exhausting one…..

The day before I’d been down to London to my lovely publishers Bloomsbury. I was there to record a letter I’d written on assisted dying in readiness for the release of my paperback version of One Last Thing – How to live with the end in mind . 

Jonny had booked me on my favourite Hull trains, the first train of the day, so an early start. But I’d had a nice new taxi man from Slovakia. We’d chatted about my travel as he’d never been on a train and hated flying but thankfully, loved driving 🤣. I told him that his English was very good and much better than my Slovakian 🤪and I could see him visibly rise in pride in his seat as we rumbled along. 

Being the early train, I watched night become day as we raced through the countryside and then ….the glorious sunrise appeared

London was very busy as I made my way along the familiar route to Bloomsbury. A visit there also meant I was meeting my partner in writing first, Anna. We arrived within minutes of one another and after hugs, we went across to the impressive town house of Bloomsbury where we had to have our piccie of course 😂 I feel safer with Anna there, knowing she’ll step in and rescue me if the going gets tough….one of the many a true friends that have come into my life because of dementia.

Inside, everyone was already waiting and the recording team were busy setting the scene. Shanika greeted us with more hugs before I settled down in my chair in my favourite colourful room.

Thankfully, all the words were on screen in front of me, so all I had to do was read them. There was much stopping and starting as aeroplanes circled overhead, telephones ringing, people chatting as they passed by the door. You just don’t realise how much noise there is around you until you need it to be silent 🤣

Half way through Ariel arrived with a boxful of morning pastries for everyone, so a good time for a break and a cuppa. Even though I was only reading, it was exhausting. Having to concentrate on the words in front of me and the emotional energy of reading about dying was truly exhausting.

It seemed to take much longer than I usually take for these things, but eventually I did get the sign that all was good.

I sat by the lovely fireplace as Shanika went to make me a celebration cuppa

Ariel is 36 weeks pregnant, so about to pop anytime now. I chatted to Ariel about the forthcoming arrival. My book had been the first Ariel had taken on when she first arrived at the publishers so she was keen to see it through to paperback. But we needed Twig to stay snug where he was for a few weeks to make that happen 🤣 I asked if they’d decided on a name. Ariel told me, her and her husband hadn’t told anyone but she would tell me, knowing her secret would be perfectly safe. And it was. I can’t remember the name she told me, but I remember feeling how perfect it was and what a wonderful story behind the choosing of it. 

I don’t appear to have any more photos so I must have headed to the station, although it wouldn’t surprise me if me and Anna went for a cuppa afterwards as we usually do 🤔

I slept most of the journey back and woke to the sight of my favourite bridge

And when I looked back along the sparkling water…..the sun was just setting

I timed my wake up perfectly.

I woke the next day, knowing I’d pay the price for such a busy previous day. So I automatically got up, not allowing dementia to convince me otherwise. I knew I needed to see the sunrise.

The sky had swirling colour dotted about the sky as I headed to my favourite spot

Through the houses and up to the back lane, turning left and heading on autopilot along the muddy track. I saw a peep of the sun coming through the thick mass of shrubs

I quickened my shuffle not wanting to miss the show……and when I reached the corner…..there it was waiting for me

Seeing the sunrise made me feel as if I could now cope with the day…..

I headed back, feeling relieved. A Robin started to sing in the tree ahead…..

Heading along the back lane towards the church, I could see the snowdrops had all made an appearance in my absence. I knew just the place where there’d be lots and headed to the churchyard….and there they were in all their glorious pure white spectacle…..tiny pearls of hopefulness.

Just the start I needed to today……

Back to the sea……

faithful camera had been out of action for a few days. I transfer my photos from camera to iPad via an app called SnapBridge. It’s usually wonderful and as soon as I enter the house, the green light starts flashing and my photos magically appear on my iPad. However, one day the green light flashed no more. I didn’t worry, as often, when I change the battery, I have to open the app first for it then to connect. But this time…..nothing…..zilch……no sign of life.

To cut a long story short a message appeared on my app

I, in my wisdom, assumed Nikon would fix it quick……wrong……Several days when by and eventually I stopped using my camera as I couldn’t show any of my photos and now, didn’t have a clue what was on there 🤷‍♀️. I wrote to Nikon, no reply. Then one appeared saying they were still looking for a solution. 

Villager Jane asked if I wanted her photographer friend to take a look for me. After another few days, I found  their ‘chat’ facility. I ‘spoke’ to the lovely Dhara, who patiently talked me through lots of steps to take, but I’d already tried them and knew they wouldn’t work. Eventually he said he would do some investigating and email me possible solutions.

Over those few days, I felt lost without my camera, totally lost. To go out walking with my phone just wasn’t the same even thought it takes very good photos.

…..but it wasn’t the same. I felt like a friend was missing. ….a very good friend. I worried about forgetting…..

Then one day, what felt like many days later, an email came through from Dhara from Nikon and I sat trying to concentrate on the instructions I’d been sent. At the second very long attempt my camera came to life; the green light flashed once more; the photos started to load. It felt like I’d given it the kiss of life and breathe had finally returned 🥰

Luckily the following morning was forecast to be fine and my high spirits had returned as I stepped out of the door, the weight of my camera comfortingly around my neck.

To ‘celebrate’ I’d decided to head back to the sea, just for somewhere to be reunited with my camera.and clicking once more.

At this time of year I can combine seeing the sea with a sunrise walk to the station. The sky was clear as I passed by my favourite silhouette house

…and as I reached the traffic lights, there was just a hint of the sun rising up through the bank of cloud on the horizon

As I zoomed in I could see half the sun poking through the sunrise sky,

Every now and then I’d stand on tip toe and peer over the hedge …..the sun now fully appeared through a dusty looking sky

It was a strange coloured sky this morning….windy so dust being swept and  into the atmosphere was giving the clouds this strange appearance

Soon it disappeared behind the trees but every now and then an opening appeared and there it was to greet me…

As I reached town, the sky had almost turned to daylight

I gave the taxi people a cheery wave as I entered the station and sat waiting for the train. I didn’t have to wait long and must have unknowingly timed my walk perfectly 🤪🤣…..

Even though it was blowing a hooley, it was thankfully quite milder than of late, the icy grip on my fingers noticeably missing. 

As the sea came into view I came to a standstill and just stood and took in the beauty and sounds around me. The sun casting a sparkling path across the sea and the waves gently lapping around me

I headed down the slipway as I could see lots of birds at the waters edge moving in time with the gentle waves as if not to get their feet wet…

I couldn’t make out what they were to begin with, but then one came closer….lovely Turnstones

Lots of lovely Turnstones busying themselves looking for breakfast, some young being fed by their parents

Then I spotted the longer beaks of the Redshanks further out

A hive of activity in the silence around me….so calming..

No dog walkers on the beach this morning, which was very unusual..🤔…maybe they’d all been and gone or yet to appear as I had the view all to myself and what a view…

As I started to head back up the slipway I suddenly noticed the rocks had come alive. Lots of skittish Turnstones hopping about, so intent on finding tasty grubs they didn’t see me at first

I stood still watching them so as not to frightened them away

Their continual high pitched chatter to one another sounding very comical

Such lovely markings for such a common sea side bird

And the next second they were gone, flying low across to another tasty spot…..

I sighed, a satisfied smile appearing on my face…..and headed back to the station. Me and my camera united once more for our morning walk…….

P.s each day I get a round up email from the ‘Only Good News people”….for obvious reason🤣….but this day I got back, opened this email as usual and scrolled straight down to my favourite piece, ‘Mood Booster’…and what was waiting for me was spellbinding. An 8 year old girl singing Fly me to the Moon and in the back ground my favourite Rock-a-be baby moon. 🥰…I just hope the world of music allows her her childhood as something about her reminded me of a young Amy Whinehouse 😔…🙏 have a listen and see what you think…

https://www.onlygoodnewsdaily.com/post/fly-me-to-the-moon-sung-by-remarkable-8-year-old?utm_campaign=0c0d0022-cc00-4a4f-a3c6-48fc77493aa8&utm_source=so&utm_medium=mail&cid=9539c441-8e13-43ff-ad84-c7cca6faf891

An update on my sleep solution…….

Back in October, I wrote about my wonderful introduction to Concentrated Cherry juice, as a solution to my sleep problems. You can read it here if you want to..

A sleeping surprise………

Well I thought I’d give an update as often these things are short lived and stop working after a while.

The miracle continues!

I must admit I too was sceptical as to its longevity but it’s been such a heaven sent gift. A gem of a solution for me anyway. 

I still wake in the night, but gone are the torrid dreams that often come with dementia; the strange and weird happenings as sleep comes and goes. Now I still have a more ‘relaxed’ sleep. That’s the only way I can think to describe it. My dreams are still very vivid, but instead of being frightening, they’re gentle dream. I must admit, they’re often of a weird nature 🤣 but they’re gentle. No more bears running after me with buckets of blood 😱

When I wake, I feel more relaxed. I’ve got the dosage just right for me. Around half a teaspoon in an inch of drink (mine’s always tonic) drunk around 6.30.

Since writing the original blog people have contacted me to say it hasn’t worked for them, and that’s fine. Not everything works for everyone. But other people have written saying they’ve had the best sleep ever after years of turmoil.

All I’d say is, it’s worth a try for anyone who has sleep problems, but read the contraindications first as I believe diabetics shouldn’t have it 🤔

Hope you have a relaxed sleep…..

A very chilly morning…….

Sometimes I wake up and just feel the need to see the sea. This was one such morning, but I knew the forecast was for a chilly day with easterly winds. I lay in bed with my cuppa, looking at the forecast and they promised sunshine mid morning. Maybe that would take the edge off, I pondered. With that thought, I booked my tickets for the 09..15 train and snuggled down with another cuppa…..it was still dark outside and still an hour before I have to leave for the station.

Hoties in my gloves, I stepped outside and could already feel the icy cold wind coming in off the sea long before I was at the coast. As I walked through the village, night was just starting to become day; the children huddled together, waiting for the school buses to arrive. The clouds looked a tad ominous with no promise of a sunrise appearance..

But as I headed towards the traffic lights, I caught a glimpse of something brighter

…in a moment it was gone and I wondered if I’d imagine it 🤔

As I reached the traffic lights I came to an abrupt halt. I hadn’t imagined it at all! A slither of morning sky was all the sun needed.

…and it really was a slither…

I stood, watching the moment unfold

I could feel the smile across my face as the sun defiantly rose through the dark clouds

In, what felt like, less than a minute, it began to disappear upwards into the waiting grey skies

I became suddenly aware of how cold I was; a shiver snaking down my spine. I also realised I needed to get a wiggle on as I hadn’t factored in any time for clicking 😳

Each time I reached an opening looking eastwards, I couldn’t resist a click

As I reached the golf course, my breathing heavy, I turned and saw it once more trying to cut through the clouds

I became distracted once more staring at the reflections in the lying water by the clubhouse

Then a young cyclist on his way to school startled me back into the present, realising once more I really needed to get a wiggle on. I purposely didn’t look at my watch. If I missed the train, I’d simply catch the next one. But still, I wiggled as fast as my wobbly legs would take me.

Every now and then, I was caught in a trance as I dared to peep to my right. Only the sun’s rays managing to pierce the clouds

Finally out of sight, houses all around me as I reached the edge of town, I was on a mission to catch that train. 

I collapsed in a heap on the bench on the platform only then to hear the sound of the barriers going down as the train approached…..I’d just made it🥵

I sat on the train, leaning my head back and sighing with relief. I hadn’t realised I’d cut it that fine…

Hutton Cranswick, Driffield and Nafferton were the stops between me and Bridlington. It felt like minutes as my station was arrived. 

As I stepped out into the sea air, I could sense my stay would be a short one. The icy cold wind was blowing harder as the sea came into view,

….but it worked its magic and I stood rooted to the spot looking seaward as the sun desperately tried to appear

There was the odd chink of blue waiting for the sun

The cold had put off many walkers today as I zoomed in towards Fraisethorpe, the wind turbines making the most of the easterly wind.

A couple of hardy Cormorants braved the floating wooden buoy out at sea

But apart from them, I couldn’t see anything thing but seagulls 

I must only have been there ten minutes when I became aware of two frozen blocks of ice attached to the bottom of my legs. 🥶😂�…….might have only been there minutes but at least I’d got my fix of seeing the sea. 

Slowly waking my feet up I ambled back up the slipway and headed back to the station……but just one more click before I do….

Friday Extract….

On the lead up to the release of the paperback version of One Last Thing – how to live with the end in mind, on February 29th…each Friday, I’m publishing an extract from ‘What I wish people knew about dementia’, courtesy of my partner in writing Anna Wharton, who has helped me out here 👭. Todays is from the Relationships section and focuses on me living alone..

On Living Alone 

It is estimated that 50 million people live with dementia worldwide, and that is likely to increase to 152 million by 2050. In Canada, France, Germany, the UK and Sweden, more than a third to half of those living with dementia live alone, and generally, older women are the fastest-rising demographic of single-household populations in the world. Which means people like me. It makes sense to me that women of my generation, no longer restricted by the stigma of divorce, are choosing to live alone. But what does that mean when combined with an increasing number of us living with dementia?

​Before dementia, there were times in my life when I wished that I hadn’t felt so alone. I split with my husband in 1988, when my daughters were four and seven. After that, I raised them on my own. There were times in the intervening years before my dementia diagnosis when I wished there had been somebody else after him. There were days when work had been particularly tough and I just wanted someone with whom I could talk through a problem; someone who would put a supportive arm around my shoulders and tell me that everything would be all right. Or when a problem arose with one of the girls, it would have been nice to have been able to turn to someone and say: ‘What do you think?’ Or at weekends when I went out to eat alone and looked across at tables filled with couples deep in conversation. Or at night just to reach out and feel another body next to mine, to hear someone else’s breath in the darkness. 

​Since my dementia diagnosis I have had those moments too: a back-up brain to jog my memory when I have forgotten an important date or an appointment somewhere would have been nice. Times when all you need is another human being sitting next to you to not feel lonely; that shortcut in language, a smile, a knowing look when words are unnecessary – those nuances of companionship that mean so much. A sense of safety to have someone at your side on days when life is a little frayed around the edges and has lost its sharp focus when you need to get from A to B. Someone with whom you can share something special that has occurred, like those times on my walks when I wish I could say: ‘Did you just see that?’ when a sparrowhawk swoops down and lands just feet in front of me. Someone to laugh with – really laugh. Sometimes, when I see other couples sharing a joke, I feel just like a teenager would, being left out of the crowd. I don’t have someone to switch the cooker off when I forget, or someone who could have opened that Tupperware lid that defeated me the other day, which meant that instead of soup I made do with a sandwich for my tea. 

​Despite all this, it might surprise people to know that I feel I am better living with dementia alone. 

​I don’t have someone rushing me or questioning. The one thing I always need more of is time. My brain can’t work quickly, so the worst thing anyone can say to me is: ‘Hurry up.’ Those two tiny words prompt panic, confusion and a sense of failure. But living alone, my time is my own; I can go at my own speed.

​I don’t have someone questioning why I can’t remember. That constant reminder of not remembering signals to me nothing but failure. ‘Do you remember?’ … ‘You must remember.’ The constant twist of that knife. Now I don’t answer someone when they say that to me, I just let them carry on. It’s easier that way, otherwise they’ll try and jog my memory with another detail that is just as insignificant to me. I often see couples, one partner adopting that tone of voice that says, ‘I told you that yesterday,’ the other looking lost and crestfallen at having to be told again, scolded like a child. 

​I don’t have to give excuses for my actions. I can get things wrong and there’s no big drama. I can come downstairs in the morning and find the bowl of food that I warmed the night before still in the microwave. I simply scrape it into the bin and wash the bowl. If someone else were there, they might be concerned that I’d missed a meal, or the waste, or the mess. For me it’s just one of those things; better luck next time to remember that it is still in the microwave. 

​I don’t have someone doing things for me because it’s easier or quicker. No matter how long something takes me, it’s always better to keep trying to do it myself. Dementia strips away so many tiny moments of independence that keep us feeling human, the last thing we want is to lose them all. I see it in couples all the time: the partners who are getting ready to leave and feel frustrated by how long it’s taking their other half to zip their coat. ‘Let me, it’ll be quicker,’ they say. Those five words are so disempowering. At least we have had our brains taken over by a disease; the other party is just allowing themselves to be influenced by impatience. If I get in a pickle trying to zip my coat one day, it’s no big deal, I just go out without it fastened – I’ll soon realise to snuggle it around me when I get cold. 

​I don’t have someone fussing when I have a bad day. On those foggy days it’s bad enough to have dementia in tow, let alone having someone else asking what’s wrong or how to make it better – even if it is often for the kindest of reasons. If plans have to be changed, I never have to feel guilty for letting someone down. I remember one couple in particular: the wife telling me how they were due to visit friends for a coffee – people who they hadn’t seen for ages, and she was so looking forward to it – but when the fog struck, her husband just wanted to stay at home, somewhere without noise where he wouldn’t have to chat and could sit in peace. His wife’s disappointment was obvious, even as she recounted the story to me, and her husband’s guilt was palpable. ‘She should have gone without me,’ he said. But she wanted to go as a couple. 

​I enjoy the fact that I don’t have to talk if I don’t want to. Silence is my friend, and my daughters know I love it. I am happy to be in their company and just not talk. At home, I can be silent for hours; no need to engage in conversation for the sake of it. I feel sorry for partners of those not wishing to speak. Having two humans in a house, it’s natural to talk, but how lonely it must be to have someone next to you who feels unable to utter the words because it’s so difficult to find the right ones. I would feel so incredibly guilty for denying someone a conversation. 

​I don’t have to think whether I’ve upset someone. To think can often be exhausting, and to work out the possibility of having upset someone and why is no different. If I’m with my daughters, I know by their faces or tone of voice if I have upset them. I feel immediately sad and try to put it right in that moment. For couples, that thought from one day to the next of a long-forgotten (at least by one person) argument or unkind word might still linger in one of their hearts. That must be hard to reconcile. Or the resentment that can often be present between couples if one feels they are not understood, or their needs are not being met. It bleeds into every area of the relationship, and yet one person is oblivious. How do you say sorry when you’ve forgotten the reason you hurt someone? How does the partner without dementia forgive, when they may have already done that a thousand times?

​I don’t have to worry that I’m doing things differently. What does it matter if I have a cordless vacuum cleaner so I don’t get tangled in the lead? It might not be as powerful, might not do as good a job, but it means I can still clean my house. If I were in a couple, my partner might insist on a proper vacuum cleaner, meaning I could no longer use it and then I would feel totally redundant – although, if I didn’t enjoy hoovering, that might just work in my favour!

​I don’t have anyone correcting me when I say the wrong word, date, or name. I’m forever hearing partners correcting their loved ones when a name is wrong. In the grand scheme of things, does it really matter? If you eavesdrop on a group of people with dementia, you will rarely hear corrections. Instead you will witness acceptance: people going with the flow. Putting someone right just leads to faltering, to hesitation while you double-check yourself, and then of course the flow of thoughts is lost. 

​I don’t feel like I’m letting anyone down. That is my greatest gratitude in being single. We all make plans when we marry: to grow old disgracefully together, to have dreams of retirement, long country walks, wonderful holidays and other adventures. It’s not until something happens to one partner that those dreams lie in tatters. I couldn’t cope with that, with seeing the face of the person who was caring for me, their future stolen away alongside mine. It’s often said that carers suffer and people with dementia live – I suppose we are in the here and now, whereas the partner can think of what might have been. When the disease progresses to the point when we are unrecognisible to the person we are now, we won’t even be aware of the heartache, trauma and suffering caused. 

​Living alone, I have to find a way around the challenges of my day-to-day life. Is this what keeps my dementia at bay, the very fact that I am single? I couldn’t live alone if I hadn’t faced all my challenges and found ways around them. It’s that determination to stay living alone, to keep finding solutions, that helps me outwit dementia every day. 

I have a real problem with people coming into my house now. I find it difficult, as I’m not used to it; it seems strange and alien to me, so I wouldn’t be a prime candidate for accepting home care – it would leave me feeling disorientated to have someone popping in. Many people living on their own have developed their own routines and would find it disconcerting to have to adapt to the ways of a live-in carer. I asked two of my friends recently how they would feel about live-in help. ‘Anxious’ was the word they used: they couldn’t imagine someone being understanding enough to accept them as they were, who would be willing to understand their dementia, and not expect them to accept their way of caring. 

An excerpt from the Relationship section of What I Wish People Knew About Dementia

A day when only the sunshine would do……

Dementia had been slowly creeping in for days now and when I woke I knew, today, it had the upper hand. I held my head as if comforting my brain and apologising for this unwanted intruder.

I opened the curtains and looked out at the darkness. The sky looked clear, the icy cold of the room wrapping itself around me, telling me it was early. I wrapped my dressing gown around me, padded downstairs, my bare feet silent on the carpet. I must have made a cuppa tea as the next thing I know, I’m sat up in bed; my arms wrapped around the soothing heat of my mug.

At some point I must have drifted off again, the click click of the heating stirring me from my dreams. I looked towards the window. My curtains were wide open, confusing me for a minute as I tried to find the right pieces of the jigsaw to put the morning right.

The sky was clear and I shuffled to the back bedroom to see if the sky had coloured yet. A hint of colour over in the east made me dress and head out into the freezing cold air. Today I didn’t feel like being inside alone with dementia because, today, I knew it would win. 

I hadn’t remembered seeing a clear morning sky for ages, not that that means very much.

But it felt like it had been absent of late. I ambled down the Main Street aware that I was alone. I was grateful no smiley faces would see me today. My face felt blank, void of emotion. It felt like the villagers were yet to wake. Only the odd car driving through disturbing the peace

It was muddy underfoot as I made my way along the track to the end of the village. I stood, taking in my surroundings. The lone aeroplane in the sky heading to far off lands;

 …..the sun yet to rise. But it wouldn’t be long.

It was too cold to stand and wait; my bones now beginning to shiver. I retraced my steps and turned left, heading along another muddy track. I snuck under the low handing branches and stood on the corner of the open field. The show had started without me.

But, at last, I felt my face turn into a smile as the sun rose up and over the horizon

I stood for a while, knowing this miracle of nature would thin the glue in my head and bring me alive again

I headed towards the wood, all the while watching the sun appear and disappear behind the wayward vegetation

Finally reached the edge of the wood and the sun was sending a warming glow through the trees

As I reached the far end, I turned knowing nature would gently turn the dimmer switch of light and cast morning shadows through the trees

I stood, watching, as the show was coming to an end

…then made my way back through the wood, across the playing fields and along the back lane…..it was still empty of smiley faces….

Must be the weekend 🤔, I pondered, without the effort of trying to work out what day of the week it was. I reached the familiar sight of the village church

I heard myself sigh….as I headed back home for more rounds with my unwanted, unpleasant house guest. Today, I knew he would take over……

The middle of a freezing cold spell….

I wrote this during the recent cold spell and found it lurking in my drafts 🙄😂

I don’t mind the cold, as long as it’s sunny and dry. We’ve been going through a freezing cold period, but at least we’d had some sunshine. This particular day was forecast to be the same.

The forecast was for cloud in the afternoon, so I decided on 2 morning walks. I must have been faffing about as, by the time I looked at my watch, I’d missed the sunrise  🙄 but not by much, and the clouds were still peppered with pink as I looked out of my window

The sky had gentle wisps of clouds floating across this morning. Nothing dramatic, just a calm gentleness

I headed up the snicket, the land to my right just having sold. It’s a lovely old house that faces the Main Street , but run down with lots of outbuildings – I so hope they don’t knock it down, but renovate it to its former glory

Just after the church and the sun was rising up between the trees

The clouds, still in their gentle mode…

I decided to head through the gallops. It’s been far too muddy even to attempt for weeks on end, but now the ground was frozen, the mud solid beneath my feet

It was all about the sky this morning. It’s gentleness making me feel calm as wisps of clouds floated above my head..

Out of the gate and up the lane towards Halfpennt cottage, the sun now just peeping above the far hedge

Up the slope heading towards the last farm, the sun joining the calm skies with its winter wateryness. No heat of course, but a joy to have as my companion.

I reached the big tree and before turning, I caught the sun sparkling between the branches

As I turned to head back home, my shadow was already ahead of me, leading the way

Along the long lane, my face icy cold, my fingers numb at the tips, I turned back for one last click

…before putting my camera under my arm and heading home for the warm welcome of a hot cuppa….

I was randomly flicking through my photos and came across one of the ducks and suddenly realised their pond was probably frozen over 😳 I’d take them some food…….after a second cuppa…..

As the pond came into view, there was such a sorry sight. All the ducks were at the near end, where at least, the little waterfall provided some running water, but the rest each side was frozen solid. The water frozen in time just where it fell…

They sat looking very sorry for themselves.

Once they’d seen me, they began to perk up, this one having a long stretch

A wood pigeon looked on hopefully from the shrubbery at the back

No way were Madge and Mabel going to get their feet cold, as they perched on their log at the back

The rest of the pond was deserted….frozen solid

The Pochard. all hunched up trying to keep in the warmth

I could have sat and had the birds come to me by the shelter, but I knew if I threw the food into the water, their movement and stirrings may break up more of the ice for them…..so I threw some seed on the edges of where they were standing. Suddenly Madge and Mabel took flight towards me

….and the rest eagerly grouped together, the ice dispersing around them

When Madge and Mabel had had enough of being hand fed, instead of with the rabble beneath, they stood on the fence beside me telling me they’d had enough, thank you

…..watching the frenzied activity below that no way would they be part of 🤣

As I pulled my gloves out of my pocket once more and turned to go, they instantly flew back to their log and the rest continued to search for any left over grains…..but at least now, they’d have full tummies, more water to swim in even though it would freeze over again in the night…..but I’ll come back again tomorrow and hopefully get the same welcome…….