Category Archives: A day in the life

Everyday experience of living with dementia.

Return visit to Cheltenham Book Festival……how lucky am I?…

I often end a talk speaking about the ‘advantages of dementia’ ….eye balls roll, cynical looks pass between the audience……the audience always think I’ve totally lost the plot 🤣 But Dementia has opened up so many new worlds to me….focusing on the positives is my way of coping with this bummer of a diagnosis…..

Since my book, one whole new world is that of Book Festivals…and Friday saw me back at Cheltenham Litertaure Festival. I was there last year being interviewed by Julia Wheeler. If it’s of interest,doing a double act with neurologist, Jules Montague you can read about that trundle here:

https://whichmeamitoday.wordpress.com/2018/10/11/starting-to-run-on-empty

Amazingly they asked me back again and this year I was doing a double act with Nicci Gerrard. We were being interviewed on stage by Alex Clark. We make a good duo as Nicci writes from the side of the supporter of her father and me, obviously, as someone living with dementia. I always say that both sides live parallel lives, rarely meeting, but both equally important in the need for advice and support, just different advice and support.

I wonder what Nicci thinks of being with me again 🤔 as we’re often put together and will be together again a couple of days later on Sunday at Ilkley Festival, which will be tomorrows blog ………

Nicci has always been very kind and patient with me. She wrote a lovely article when the hardback version of my book came out a couple of years ago.

https://www.theguardian.com/books/2018/jan/28/wendy-mitchell-somebody-i-used-to-know-interview-dementia

Any back to Friday……..a blustery night was followed by a blustery wake up call. It was silly o’clock…..we were speaking in the afternoon so I opted for overnight stay on the Friday instead of Thursday. I don’t mind setting off in the dark as I know it’s going to get light but travelling at night can be quite disturbing, with confusing shadows, Inability to see where you are and no opportunity to take piccies to calm me down…..so a silly o’clock start it had to be….

The taxi driver was from the night shift so one I’d not met. We got chatting and it came out that I had dementia…..he then told me his story – his father has dementia in the later stages. He doesn’t know who any of his children are but comes alive when they visit….I told him why and we chatted more. By the time we’d arrived at the station he was busy downloading my book on audible …….❤️…….it’s amazing how much you can say in a 12 minute trundle……..

The journey to Cheltenham is a long one and involves my least favourite train company – Cross Country……..🙈…..their trains are soooo claustrophobic and squashed…but first I had to get to Sheffield, which meant a change at Doncaster……it was so dark I missed the trundle alongside the Humber 🙄 no stunning sunrises today……just splashes of rain on the windows, car headlights in the distance with windscreen wipers clearing the deluge…….

But a glimpse of autumn on the tops of the trees at Sheffield as I waited for my connection brighten my day

I used to have the lovely Jasmin looking after me at Bloomsbury but she’s now departed to ventures new and I have an equally lovely Ella. She sent me my usual detailed plan of my stay  – and I was told someone in a bright pink t shirt carrying a festival sign would meet me at Cheltenham……Cheltenham looked after me really well last year but I txt the number Ella had given me, just to make sure someone was on the other end. I needn’t have worried as Louise came back immediately so I was a very relaxed bunny……..

I arrived and sure enough, Mr Pinkman was waiting for me and we happily chatted to the lovely writers room they provide to chill…. all the helpers were dressed in pink tops so they stood out wonderfully……it was so windy outside, the tent was billowing and pictures of farmhouse people on the tent walls were bouncing around….😂

A man came over to me, introduced himself as James and said how he’d interviewed me at Bath Festival……☺️…….just nice that he took the trouble to come over and say hello….. and then a Julia Wheeler, who interviewed me here last year and knows my partner in writing Anna!

We would be in the Garden Theatre…..what a lovely name, so I spent the next couple of hours people watching, catching snippets of conversations and just enjoying the wonderful atmosphere……heaven…….and so calming….

Nicci was also with husband Sean French later on. For those that don’t know, Nicci and Sean write as Nicci French, writing crime novels. I remember being fascinated when she told me how she and Sean wrote their books……..

Alex came over and said hello as Nicci was caught up in one of my nightmare trundles and would be here late 🙈….but still with time to spare hopefully. Alex was so nice and smiley and kind. We chatted for ages to get to know one another before heading over to the Garden theatre to be miked up

and wait in the Green Room for 2pm to arrive….Nicci arrived with minutes to spare, but still time for a piccie….

Obviously I wasn’t typing, but I know we had a wonderful time, took lots of questions and it was very emotional….a full house were so kind, so generous in their applause.

On the way to the Book signing, we were stopped by various people just wanting to say thank you, just wanting to chat. Some were in tears and one said she’d now realised she wasn’t alone……. We signed lots of books, had lovely chats with lovely people about their connection with dementia before making our way back to the writers room……

Here I was met by Jill Ronnie and Sue Learner to record a podcast for their series called  ‘Let’s Talk about Care’ ….They’re from from Carehome.co.uk and Homecare.co.uk………it felt like we spoke for ages but again I wasn’t typing so no idea what we spoke about – this, that and everything probably…..I’m sure they;ll let me have the link when it’s published …..

Time for a quick piccie

….before heading back to the hotel totally exhausted but happy…..I’d had such a wonderful day and the pink t shirt brigade looked after me wonderfully……feeling very lucky….

The Friendships from Dementia…Poem…..

Raucous laughter

Hugs galore

Greetings like old friends

Sad no more

 

Talking about anything

Personal, this and that

Sharing secrets

Amongst the chat

 

No need for Time

To kindle this friendship

An instant bond

Our very own kinship

 

Who are these people

These three dear friends

Not long ago were strangers

Now dementia has brought them

 

together like contented bookends….

 

You can hear me reading it on Dementia Diaries…….And find out what brought me to write it….

https://dementiadiaries.org/entry/12915/a-poem-that-came-out-of-brecon

The varying rates of deterioration…..

I thought I might have written a blog like this before, but if I have I’ve not been able to find it…..it surprised me that I hadn’t as these thought are often with me…

I could have used ‘Progression’ in the title, being the positive person I am, but for me there’s nothing positive in the progression of dementia, hence the use of ‘deterioration’.

The thoughts that here I am typing away, speaking at events, while other are in a very different place and one I wouldn’t want to be. I often think it must annoy the hell out of some carers who are supporting people who bear no relation to me, yet we both have that diagnosis of dementia – it must seem so unfair….

I often feel worn me down with guilt – guilt that I’m surviving in the way I am – but it’s MY way of surviving. I also know I shouldn’t feel guilty,  but that’s just me.

I may not have much of a short term memory but I do remember very high and very low emotional times distinctly. My first ever meeting at the Alzheimers society offices when a carer said to me….

Yes but you don’t have real dementia”

……always rings loud and clear in my head. That ignorance of the fact that dementia isn’t just that which is experienced by those in the late stages.

A friend of mine has recently gone through a traumatic time and her lovely hubby suddenly deteriorated and turned violent – whether through dementia, medication, or feeling distressed and confused, who knows, but no one seemed to be listening and that’s the shocking thing…no one listening.

We’re probably the same age and the guilt I felt when I found out was so heavy. His family see me blogging and tweeting and it must seem so unfair.

But this shows crystal clear how every dementia is different …..how individuals experience and react in a different way…..how there is no handbook for how are brains are wired……

I’m often questioned and criticised on Twitter. When it’s by professionals, that hurts as they should know better, but I understand when it’s from people having a different experience. I can feel their hurt, their vision of unfairness of me ‘surviving’ while those closest to them are in a different place. I understand their anger, sadness and bitterness – it’s fine, I understand. I have much support on Twitter who look after me but I often wonder how much support they have 😔

In talks I say this:

We have a complex brain disease, our experiences are individual. 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. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t. I can type words far quicker than I can think and speak them because that part of my brain hasn’t been affected others can’t type but can speak better than me. If I didn’t have these words in front of me I’d be floundering.”

That seems to flash moments of understanding in some peoples eyes…..I can sense light bulb moments being switched on in their heads….

To survive I have to do what I need to do and I’m sorry if tweeting and blogging hurts some people, that was never my intention. But these things help me to survive this cruel disease. I know it helps many but I know it hurts too.

So many of us are criticised at the way we go about our life, but that way is our way. One day our cliff edge will arrive and those who criticise may then accept us……we will ‘fit’ the stereotypical image …but for now, I and I hope all my playmates, will ignore the cruel comments thrown at them.

As for those supporting those whose deterioration is quicker and more cruel, please accept my hug. My thoughts are with you as I would never want my daughters to be in your shoes and will do everything in my power to prevent it….

A Dementia Diaries recording, and Interview about books……

Thought I’d end the week with a simple blog for me 😊….the first is a diary I recorded in the hope that it will be played at an Audiology conference in Wales next week. I’ve brought together my experience of my audiology appointment, the effect it has had, along with an update at the end on sirens……

You can listen to me or read my ramblings here

https://dementiadiaries.org/entry/12691/wendy-reads-her-blog-about-a-very-positive-audiology-appointment

The second link is an article I wrote for the Reading agency some time ago. I might have already shared it so apologies, simply ignore if you’ve already read it. But it appeared again yesterday so I thought I’d include a link to that. At the end of it you can click to see a list of the books I’ve read since dementia.

Reading is such an important part of many people lives that is badly affected when dementia comes along. People think there is no other choice but to give up reading….but as I’m always saying,

There’s always a way…”

Somebody I used to know

A trundle is a trundle no matter what mode of transport…..

I didn’t write about my time in paradise as I probably did the same things as always….a trundle on the bus, a walk to the lake……but maybe, just maybe, I havn’t written about a trundle on a boat round Derwentwater…….🤔……

I’ve done the round trip hundreds of times, but each time is different; the weather, the people, the calmness or temper of the water changing each trundle round. I’ve heard others say, ‘but you see the same thing each time’……….but if you look carefully you see something different each time too………you just have to look…..

Obviously I wasn’t typing, but I took loads of piccies and it’s the piccies that are reliving this trundle in my mind ……

The day before I’d had such a surprise at breakfast time as I arrived to find a friend, from a while back, had also booked into Appletrees as she’d read about it on my blog 😳 so this visit, I had company over breakfast…small world….

I decided to go for the second launch of the day at 10.30. After a thick fog had greeted me early doors, I stayed in my room waiting for it to clear, playing my morning routine of Scrabble and solitaire to wake up my equally foggy brain…..
I suddenly lifted my head from the screen….and it was as though someone had switched on a fan and blown it all away and the sky was clear blue and welcoming.

I ambled down to the Lake and found people already waiting…

We climbed on board and a jolly launchman welcomed us aboard, each passenger having their own agenda for being there. Happy dogs scampering down the steps…

The water was was beautifully calm and still, the only ripples created by the boat itself…

Nichol End first before heading for Hawes End, where many disembarked to scale the glorious Cat Bells. The mountain and clouds displaying their beauty in the mirror of the water below

As another launch passes by, passengers wave from one boat to another…..Brandlehow, then Lodore, where we were assured the waterfalls were in full flow for anyone venturing to the top, then back along to Ashness Bridge, which used to be my stop in days when I walked instead of wobbled, having climbed down from Walls Cragg. We were then heading back to Keswick.

If you look carefully you can see the Crane on the waters edge…blink and you’d have missed this majestic bird……

One last photo shows the rocky fells kept snug, with nature covering them in  a patchwork quilt of loveliness….

And before long we were back, one boat load of passengers being replaced by another and so it would continue on this gorgeous September day.

I managed to capture the last launch of the afternoon heading home and it was still full with happy visitors….me thinks business has been good for the launch this week…..

My ability to type sometimes works against me….

Being able to type and write often works against me as it gives people a warped perception of my life…..It seems to make them forget the struggles I have but I’ll keep writing for as long as I can and nice to be asked to write for the Observer for World Alzheimers month…..I can’t help being a glass half full person but often face criticism for it….but their problem not mine…it doesn’t stop it wearing me down though especially if I’m not having a good day.

Maybe in it’s own way, this is a gift from dementia…to enable me to communicate in a way I never could, solely through word of mouth…as I’ve said before, I’m often mesmerised by my fingers typing and astounded at the sentences they produce.

But the inevitable criticism this brings is so hurtful……why can’t people be pleased for fellow human beings who have found a way to outwit the challenges of life and in particular, in my case, dementia? I find criticism and doubt very strange. But that’s the human race for you……

Simply because we CAN creates criticism, doubt and questioning…..if we focused on the CAN’T then we’d be fitting with the sterotypical image and the critics would be happier……🙄 I could write a a long list of what I can’t do but why should I? It would depress me to be constantly reminded of the losses. If professionals concentrated on the ‘CAN’ from the start, our lives would be so much more hopeful from point of being diagnosis.

Professionals often see people in the later stages and so find it difficult to understand people in the early stages. Many misjudge us through lack of knowledge. Families often focus on the late stages, which undoubtedly are difficult, but forget their loved one would have had an early and mid stage. They may not have registered or got a diagnosis until the late stages so find it difficult to understand how I can manage to function…..

Anyway, for those that havn’t seen it and maybe interested, here’s the article I wrote for them…

https://www.theguardian.com/lifeandstyle/2019/sep/14/facing-life-with-dementia-and-discovering-a-positive-path

 

The story of a trundle……

Yesterday, I needed something to do on my trundle as I was feeling anxious from an event the previous day. I’d woken with a headache and feeling discombobulated, needing assurance that normality DID exist…. So I thought I’d type a story as I was trundling to paradise for my last visit before winter…….just to keep me occupied and calm my head…….

It was a beautiful September morning and the sunshine had put the taxi driver in a good mood too. It’s not long since his wife died and he often has a sad aura surrounding him, but today, the sun had brought a smile to his face.

He died me off at the station, which is also where the taxi cab office is situated and I’d decided to take them a box of ‘Heroes’ crocs instead of the usual biccies. I’m not sure what happened at the weekend but they’d sent me a taxi at 06.10 Sunday morning when I was fast asleep instead of Monday. It was probably my fault as I’d booked quite a few taxis and often get in a pickle, so they were to make amends. They were gratefully received and all thoughts of diets quickly disappeared………

The first train was on time 🙌……and the trundle to Hull was uneventful. Two fellow passengers also had walking shoes on and were looking very happy and relaxed. I wonder where there paradise might be?

The Manchester train was also surprisingly on time….😱…..I’d even scanned the information board for a plan B assuming I might need it, but not today……

It was a more respectable time of morning when we trundled past the Humber and the sun was in the perfect position to have it’s piccie taken……..even making the murky water sparkle and glisten

Once past Brough, the familiar sheep were basking on it’s banks

Selby, Leeds came and went and then onto the climb towards the Pennines. Fellow passengers, some busy working on laptops, others enjoying the views. A hum of conversation of peoples lives divulged in a snapshot. Two men comparing home lives, moans of teenage antics, long working hours and wishing for the weekend. Another on the phone oblivious to his loudness in revealing office secrets, of others, the sigma earring and disappearing and the continual sound of ‘hello’, ‘hello’…….

Never ceases to amaze me how much people divulge on a train…….amazing the conversation and snapshots you hear of peoples lives on a train…….maybe they think they’re safe as they’ll never meet those people again, or maybe they don’t realise they can be overheard…🤔

As I look out of the window, the skies are filled with aeroplane trails, Leeds airport being close by. A plane full of expectations of a wonderful holiday to come or bring home memories of a holiday just taken….?

Dewsbury, Huddersfield…..the streets full of cars and people going about their daily life. Are they happy or sad? Is it a good day for them or bad?

As we pass by houses with washing on the line, gardeners at work, I often make up stories in my head about that moment in their lives that I glance in a second……who knows what tragedies or joyous moments are occurring or simply a mundane normal existence is happening as I trundle along my way fleeting past peoples lives……

You can feel the train start to climb, like a roller coaster, climbing out of Yorkshire and dipping down into Lancashire……..as we crossed the Pennines from East to West…I love this trundle, the views so calming…through tunnels carved through the Pennines which never cease to amaze me ..

Now Mossley, advertising it’s Northern Lights followed by Stalybridge signals we’re almost at Manchester and time to change for the Penrith train with new travellers, new stories, new scenery……and more importantly half way to paradise…..

Arriving at Manchester, the train spotters huddled at the end of the platform with flasks and sandwiches for their days recording, I’d left my self plenty of time to simply sit and work out the next step and went outside away from the crowds and it’s always sombering to see this statue entitled “Rebuilding Lives after Sight Loss”

My train to Penrith was also on time!! What is happening today!!

The passengers were quieter, all sat alone, deep in their own world. Some brought out their sandwiches, reminding me, maybe I should eat…so a packet of crisps filled whatever gap there might have been….I’m probably eating far more crisps and biscuits than I should, but they’re simple to eat…
The skyscrapers of Manchester disappeared as we headed towards Preston, Lancaster, leaving the Industrial north for Oxenholme, which is called the Gateway to the Lakes’……and also means the next stop is Penrith 😊

As office blocks and the hustle and bustle of busy cities and towns turned into fields and animals grazing leisurely…..I began to feel calm. Their presence turning the discombobulating head into a quiet zone of peace…..I could ‘feel’ paradise approaching….and this view is always a sign of it’s approach….

The arrival in Penrith was, again on time 😳….I could have shown you a hundred photos more of the route there but, after a short wait for the stunning bus ride into Keswick…I’ve the delight and anticipation of ……my favourite view of all…….

Did you notice how all the trains were on time 😳……maybe I should write about my trundle like this more often….🤣😂 hope you enjoyed my journey as much as I did…

Oooooo I know I said ‘last visit before winter’…..but……..they say Keswick is lovely when they switch on their Christmas lights and I’ve never seen paradise dressed in it’s winter finery………..maybe…just maybe…..……..you’ll hear about that……

Second Audiology appointment for Hyperacusis……..WOW!

A while ago I finally got an appointment with the Audiology department to discover whether I had Hyperacusis. It turned out that yes, they diagnosed hyperacusis in both ears but I’d been referred to the wrong department. 🙄 ..So I was put on another waiting list for the right department to see if they could help me…..🙈 Well yesterday was that appointment. Luckily I didn’t have to wait another year!

You can see what happened at the last one here if it helps:

https://whichmeamitoday.wordpress.com/2019/07/30/my-hospital-appointment-finally-arrived/

Not sure how much you know about dementia but one of my first senses to be affected was my hearing. I’m not going deaf, it’s just that certain tones of noise physically hurt my ears.
Now audiologists are recognising it’s affecting many people with dementia and diagnosing them with hyperacusis and I suppose I’m here today to find out what help they can offer me.

I was due to travel to Newcastle in the morning ready for a meet up with playmates at another DEEP group for their 10th birthday and their even bigger event on Thursday. But my calendar is chock a for the next few months and I knew it would be hard to rearrange. So I had to dip out of the festivities this afternoon and travel to Newcastle after my appointment ready for the big event on Thursday……

Seem to be in waffle mode today….😂…..anyway back to the appoinment…..because I was getting a taxi at lunchtime I had a different cab driver. We chatted amiably on the way there. She has cancer and also has an interesting story as a cab driver trying to keep her head above water. I’m always saying, everyone has a story………

This appointment was at my local Community Hospital, so again, I didn’t have to go to the dreaded Hull Royal. It’s a light airy waiting area

I just had to hope everything went smoothly to catch my train …..I was the first appointment of the afternoon……so no reason why it shouldn’t be……….🙄

The audiologist came and called me. I instantly liked her for her smiley face and calmness. It was then we began the most AMAZING 2 hour consultation.

Yes, I did say 2 hours……she doesn’t believe in 8 short quick appointments so she has 2 hour appointments to get the patient sorted out in 1 go……..instant triple brownie points…….she couldn’t understand why I wasn’t referred to her in the beginning…….

We immediately clicked because I didn’t just want her to solve the problem and send me on my way, I wanted to understand what was happening, I wanted her to explain so, like a child, kept saying ‘Why?’…..which she liked.

She showed me the pictures of my right and left ear and explained what it meant.

The line is suppose to be straight……🙄

Obviously I wasn’t typing as I needed to listen so am typing this as soon as I’ve left starting in the taxi. I continued on my journey and I had the normal sleep, wake, sleep wake later that night, but little images kept coming through from the audiology appointment so I kept adding to this blog, trying to convert the images into words to capture as much as I could and this is the result ……..

She then went through a series of tests with the hearing aids, explaining everything patiently and even drawing me pictures to take home. She explained the problem on a diagram, explaining how there’s a gate between the ears and the brain and my gate is permanently open. When those without hyperacusis hear loud noise, it’s simply a loud noise, when I hear the same loud noise it’s as though a raging bull is crashing through my head. Their ‘gate’ closes, mine doesn’t.

She explained why ear plugs don’t work effectively – because they don’t ‘close the gate’.

Because I’d already had the hearing tests she didn’t need to do them but instead of just showing me the door, she spent the rest of our time asking about dementia and seemed genuinely interested in hearing the answers. She admitted not understanding the connection with dementia, but wanted to know more. Her daughter is autistic and people with dementia have so much in common with those with autism, including hyperacusis …….

The 2 hours flew by. She wrote me post it notes to help remember different things. Stuck a sticky label on on each box to say which to use and which to save. We decided I’d just wear the right one for now to see how I go as the left one was causing more disturbance. At one point she asked me to close my eyes and point to where her clicking finger noise was coming from – I pointed one direction and I was a few inches out – can’t remember the detail but it made total sense.


One tiny aid that could change my world……fingers crossed….might not be for everyone but for me at the moment it’s WOW…..

She could see I had a jaw problem, which I wrote about some time ago and said how that could well be causing the issue with wearing the left one because of one side being more dominant than the other. She adjusted, tested, readjusted.

It’s not that the loud noise is reduced – it’s still just as noisy, it’s just the intensity of the tone that is dulled which takes away the pain ……

I was amazed when she said, that I’ve probably not heard ‘S’ and T’ in words. Which explains why I can’t follow conversations sometimes. But with the hearing guard set correctly, it made her voice subtly different. I didn’t know what the difference was until she said that. It’s like when the optician puts a better lens in front of your eye and the letters are sharper – her voice was subtly clearer. Apparently not everyone picks up the subtle changes so think there’s no difference so no point in wearing them. But my senses are now so heightened so much, that maybe that’s why I did. AND maybe not every professionals takes the TIME to explain what will change in such a clever way as she did……

What I’ve typed probably sounds a muddle and I wish I could have recorded the whole interview to transcribe as everything made sense at the time. We swapped coping strategies for sensory overload, which would come in handy for her daughter. We spoke of the NHS and generally put the world to rights

She then got her 2nd bucket load of brownie points by saying how if I had any questions at any point then here was her email……😳🤩🤩🤩🤩🤩🤩🤩🤩⭐️⭐️⭐️⭐️⭐️👍👍👍👍👍

We finally finished with a few minutes to spears before my taxi and I thought she would say goodbye at her door, but no…….she walked me through the maize of corridors to the front door and made sure I got to my taxi…….❤️

Maybe I’ll wake up and all this will have been a dream, but if not, in that 2 hours, my faith in the NHS was certainly restored by a professional who knew her stuff but was also willing to listen and learn.

While it takes time to get use to hearing aids for anyone, I wore it straight away and whether it was psychological or not, I didn’t flinch when the train pulled in and the brakes squeaked…….now I just need a siren to test it fully………….I’ve already learnt that it’s a good job I have short hair over my ears!

One happy bunny……..and my mood was as bright as the rays beating down as the Humber as I trundled past on the train to Newcastle……

A Contentious Blog on my end stage dementia – revisited

I’m almost sure this would have been a contentious blog the first time round but the subject seems to have been doing the rounds on Twitter again so I thought  I’d reblog. It all started when one organisation was questioned why they didn’t have anyone with dementia talking about end of life views at their conference. They had a Carer viewpoint but not someone living with dementia. In my opinion you can’t have a conference about OUR end of life without one of us speaking from our view point. Anyway, there response was that they didn’t think we talked about end of life. We pointed out quite vociferously that there were many of us who spoke  regularly about end of life, me being one.

They took the criticism on the chin and now the lovely Dory from Wales is speaking – better late than never I suppose, but why are we still having to highlight the omission of people with dementia at events that are about us?

My views havn’t changed and can’t see them ever doing that. So here is what I wrote back in June 2018.

I am known for talking about adapting to ‘living’ with dementia; emphasising the positives, living in the moment. However today I also want to talk about the end stages when I may not be able to talk about my feelings then, so what better time than to do it now while I’m still able. To express my views of the time when the blogging Wendy no longer exists and when dementia has won it’s cruel game of hide and seek.

This is in response to the article by Polly Toynbee in the Guardian last week:

https://www.theguardian.com/commentisfree/2018/may/29/assissted-dying-katharine-whitehorn-alzheimers

Polly Toynbee starts off her article about former Guardian journalist, Katharine Whitehorn, who is living in the late stages of dementia, by saying:

Before Alzheimer’s claimed her, the legendary Observer writer made clear her view that the ban on assisted dying is cruel”

As someone diagnosed with dementia 4 years ago, I too am saying pre and post diagnosis that the ban on assisted dying is cruel.
I’m asking the question – is death better than allowing my brain to be claimed by dementia? I believe so.

Toynbee came under criticism on social media for her comments and I for one fell under the spell of retweeting these comments simply because I trusted the views of the person and not because I’d read the article for what is was – an honest, thought provoking article –

That’s what her two loving sons say and they want it written the way she would have”

Would I want my daughters to be criticised for wanting to express my thoughts once I tip over the edge into someone I don’t know? The thought of that makes me so sad – So I’m stating that now for all to see and for those who do criticise, to refer to my writing in the future.

We must remember that everyone is entitled to their opinions of assisted dying. For some it will be totally against their beliefs, their desires, their religion even. For me personally it’s a conversation that needs to happen and I admire Toynbee for writing such an article as it certainly got the conversation going.

Her old self would not recognise herself in this other being who sits in the care home dayroom. What or who she has become is a difficult philosophical question, but she is no longer Katharine Whitehorn as was.”

Yes, I do believe, as others do, that you should see the person, not the dementia. I just don’t want me as that person to be seen at all.

It is often said that once I’m gone over the edge it is my daughters who then ‘suffer’. When I’m no longer able to question the language used. When the word ‘suffering’ become an insignificance for the me that will be. The fight being over.

One of my 3 greatest fears is going over the edge into someone I wouldn’t recognise today.

Would I want to sit in a care home – No
Do I want to be dragged over the edge by dementia? No
Would I want to sit blissfully happy yet unrecognisable as the me that is currently – No
Would I now want my future self to fail to recognise the 2 most precious people in my life – of course not.

So why shouldn’t there be an alternative?

Some people have said, ‘You havn’t thought it through, what happens if your happy and content in your new self? You don’t know how you’ll feel’ …….I sigh at this point…..they’re missing my point. I don’t want to be that person……I’m making that decision now. Once again……..as I’ve said it before

I refer to Euthanasia in my book, Somebody I Used to Know.At the moment the only alternative is to fly to Dignitas. But I don’t want to fly to a strange land, to be in a building I don’t know, to be in a room I don’t know. To know now that my daughters would have to fly back alone. Even the proposed new laws in Guernsey refer to those terminally ill with a limited time left – but we’re never going to have that luxury of time defined end. Another prejudice against those with this cruel disease.

But why should dementia winning this battle be the only option open to us. I have signed the ‘DO NOT RESCUSCITATE’ forms, but often those with dementia have strong hearts that end up being the allay of dementia and keeps beating allowing it to turn the screws tighter.

We are in a catch 22 situation ……the law is on the side of animals not suffering but not humans ……..

Yes, it is an immensely complex moral, ethical and legal issue but should it also be considered as a simple matter, simply as a matter of choice? There will be those who fiercely negate such a thought – that is their choice – but shouldn’t those of us who believe in euthanasia also have the same right to choice?

Someone recently said ‘Very few of us experience a natural death’ – can’t for the life of me remember who or where I saw it…….but it is true – we die as a consequence of some event, some disease, some tragedy, some accident……but if dementia is our only way to death, it can be a long slow process if the rest of our organs are still functioning…..

All of this contentious, I know, but simply my views – please remember these words in the future if dementia sneaks up on the blind side and wins its game…..and especially if a journalist relays my thoughts as I’ve written them now, just as Polly Toynbee tried to do on behalf of Katharine Whitehorn and as I’d like my words to be told in the future, unless the law changes……..unless……..

I’m fighting for a Good Life with dementia, so surely I should have the Right to a Good Death too……and if you don’t agree with me, live in my shoes for a day……

In Toynbee’s final paragraph she writes:

But even those who think carefully about how they definitely don’t want to end up find that rational plans, made in good health, usually slip away during a step-by-step medical decline, no longer in sound enough mind. Too late to say stop”

That ‘cliff edge’ is a very unpredictable precipice – no one knows when dementia will pull the mat from under you and let you fall. This is what makes assisted dying so contentious.
If we had cancer, medics could hazard a guess at the length of time left when near the end, but dementia doesn’t allow us that luxury.

I’ve said often before – I wish I had cancer, because then I could refuse treatment and I would have a legal way out of this world.

I applaud Toynbee for her writing. As her sons said, “……..without doubt, that if the real Katharine could see herself now she would be horrified” just as I would be horrified to see myself in such a situation when dementia makes its final move and I’m no longer capable of outmanoeuvring it – will people criticise me then for the thoughts I have now? Will they criticise a journalist for speaking my words for me?

The fighting dementia in the mind goes on long after it’s seeped deep into our brains, and when, for a moment we win, the screaming emerges, just as it would from me…

Mostly, Katharine Whitehorn is placid, but in rare flashes of depressed lucidity, her sons say she asks for it to end, to stop now.”

Well you’ve heard my views from me now while I’m able and I hope journalist will take up my mantle and speak out for me if dementia is allowed to win me over…..on how I will hate the end result and want that choice of the final release…

Articles for World Alzheimers Month……..

I was recently asked to write two articles in preparation for World Alzheimer’s Month and  they’ve both now been published. It never ceases to amaze me, when I’m sent the links, that I remember nothing or only a hint of ever having done them.  Yet being asked to write is so important to me.

I know I’ve probably said this a thousand times but I can type as though dementia never entered my world. I can type words far quicker than I can think and speak them. Watching my fingers type is often mesmerising as the sentences they put together so easily often astounds me. Typing is my escape from dementia so I’m always more than willing, if time allows, to write articles.

Anyway…the first is one on NRS Healthcare, which has many lovely piccies I’d forgotten about…

https://www.nrshealthcare.co.uk/articles/news/living-with-young-onset-dementia

and the second for the Elder Magazine which was in a Question and answer format…

https://www.elder.org/the-elder/dementia-wendy-mitchell/