Category Archives: Reblog

An Extra blog with an Extra plea…….

Yesterday we had the terrible news that the BBC is making massive cuts and one of these cuts is the axing of BBC 2 Victoria Derbyshire programme.

It’s campaigns, it’s revelations  & commitment to the public having their say made it pretty unique in daytime TV. It was honest, real and truthful and amongst other subjects gave dementia a regular voice.

This programme is very special to me as it introduced me the the wonderful journalist Jim Reed.

Over five years ago, at the time of the release of the film Still Alice, the BBC asked me, Keith Oliver and Christopher & Veronica Devas to film our lives for a month using a camcorder. From the footage we recorded, the wonderful reporter, Jim Reed, produced this short film….how different I was then compared to now…

This was just after my diagnosis and I was still working full time. From making that film, I made 3 wonderful new friends. We’d been brought together through a diagnosis of dementia. Our paths would never have crossed if it hadn’t have been for the diagnosis and I’ve made so many more wonderful new friends since. Every cloud…….

Then 3 years later, back in 2017, we were asked to make an updated version to go alongside this one and here’s the link to that…..what a difference 3 years makes…..

https://www.bbc.co.uk/programmes/p05zqw0m

Apologies if my overseas friends can’t view the links, but fingers crossed…..

Now the BBC in their wisdom have decided to axe this wonderful programme. Victoria Derbyshire gave dementia a voice, revealed the sexual abuse going on in football – just 2 of many many important issues, raised and reported on with dignity, truthfulness and openness …..now unless we campaign, it will automatically disappear.

But Jim has asked previous participants on the programme to appeal to the BBC and I’ve written the requested email. But you can help too by signing this simple petition that will only take a minute. We’re trying to get as many signatures as possible simply to make the BBC reconsider and see the support this programme has….

https://www.change.org/p/bbc-stop-the-victoria-derbyshire-show-being-axed-victorialive?recruiter=46688801&utm_source=share_petition&utm_medium=twitter&utm_campaign=psf_combo_share_initial&recruited_by_id=3080dae0-81e6-0130-db26-3c764e049c4f

 

 

What Makes it All Worthwhile….revisited……

Third reblog of the week from 3 years ago ….I suppose after the amazing words of the man from Pontefract on Mondays blog led me to reblog this one. Everyone needs a reason to do the things they do. The kindness of others is one of my reasons….it makes all the grief, the struggles, the trauma of travelling worthwhile…

 

What makes all the hassle, all the travelling, all the preparation for meeting, events and talks? Basically it’s being drip fed nuggets of information from people who have been affected by what I’ve said or done……it’s the small changes that have happened as a result of what I’ve said. People very kindly send comments through my blog which mean so much and keep me going……..

“I’m no longer afraid”

“Thank you for the insight. It’s helping me to understand how I can help my mum”

When I was diagnosed, I never imagined the poor state of so many things that were dementia related. At the outset you say ‘yes’ to everything, as you think that interest will be short-lived. However, you soon realise that this is not the case. Purely from a personal perspective, you’re not quite sure how long you can manage to do all those things – will your brain deteriorate quicker than you imagine? So you cram everything into a small amount of time ‘while you’re still able’……
Soon you realise, your brain may play ball for longer than you think – you may meet new issues along the way, but you become accustomed to adjusting.

What you also become use to is being listened to and then professionals going off and reverting to type………..when you do or say something and change happens, then it’s worthwhile; however, the most frustrating times are when promises are made, ‘changes will happen’ but, in fact, nothing changes and nothing happens……..

We see and hear this on a daily basis. Kate Swaffer, from Australia and Agnes Houston here in Scotland, are forever saying, ‘We said that years ago’. Yet here we are again, and the only difference? – the same words are being spoken by a different person……..
Words about inclusion, words about language, words about post code lottery services – none of these are new, yet here we are simply repeating what’s already been said many times before…..

I recently spoke to my local Governing board about my dreadful experience since moving into the region. Since that talk the region has finally woken up to the fact that they need a Dementia Pathway and they want to involve me in its design……..yet when I emailed after weeks of silence, I was simply told no date has been sorted to start this process….will this be another case of false promises? – hopefully not….

I often say that rambling on and speaking at events and meetings is my suduko…….well, you know how sometimes you get fed up of playing the same game………….🙄 It’s been an exhausting few months and sometimes you just want to forget about dementia and do normal stuff………..that’s where I am this week as I’ve given myself the whole week off and most of next week…….…….. who knows how I’ll feel next month….…

Instead, I’ll simply chill with Bill……

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P.s today on Twitter, Bradford University released my Graduation speech I gave to the students….needless to say, I’d forgotten what I said, so here it is if you’re interested…..

Changing emotions ….revisited…

Today another reblog from 3 years ago, this time about emotional states. Whilst we never forget how people make us feel I’m convinced we can lose certain emotional states.  Know some may think this a contradiction but I can’t think of any better way to describe it…….anyway, even after 3 years I’m still left with these 3, but feel I’ve come off quite well as I could have been left with negative ones…..rather an appropriate one to have found as we trawl through the PIP forms again……

 

I’m sure I’ve written about emotions before. When I was talking to someone recently about ‘losing’ the ability to get angry or annoyed, they said people mellow with age. However, those people can usually still get annoyed or still get angry if they really wanted to – the difference with me is, I’ve lost that ability..

I have 3 emotions – happy, sad or content.

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I really believe that people with dementia can lose emotional states. We’ve heard of the type of dementia that affects and changes peoples personality, well I think this is closely related. If anything was going to test my theory, it was the PIP (Personal Independence Payments) being turned down. I’ve got no doubt in my mind that pre dementia I would have been angry and been able to channel that anger into appealing . But now I no longer feel anger. When I got the letter I simply cried as it made me sad – I couldn’t feel anger or simple annoyance.
It’s very difficult to fight something when it makes you sad as no one wants to be permanently sad and that’s how I would have felt.

Is it going to be a good or bad day…..revisited….

A quiet week this week so thought I’d look through some old blogs to share again….This one is from 3 years ago….after a bad few days last week, this reminded me that not much has changed as this still happens yet so much has changed…..and showering is now exhausting……

 

Thought I’d share my early morning today where I try to work out whether my brain is cooperating ……. I wrote this as soon as I got out of the shower on Sunday to remember as much as I could…

On Sunday I had a very frazzled morning. I’d had 2 very busy days, On Friday I’d had a very long tiring day in London and on Saturday I’d had a very busy, lovely christmassy day with Sarah – so Sunday was never going to be a breeze…….which is why I knew it would be good to document here…….
On days like these the day starts off slowly and not without its challenges…..

On Sunday I stood in the shower and forget to wet my hair before adding the shampoo – so there I am trying to wash my hair with shampoo before it’s wet – believe me that’s a very strange feeling …….and it took a minute to work out what I hadn’t done.I realised I wasn’t standing under the water and then all becomes clear…. ever tried to wash your hair without water? Give it a try, very confusing…….

I have ‘hot/cold’ ‘on/off’ on my shower which gives me something to refer to when I get confused – this is why I have so many problems in hotel showers as the prompts are missing…….

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Now me thinks I need to laminate a sheet to remind me to stand under the water……

The mizzle eventually clears and the world is a nicer place……….I know one day it will take me longer or not make sense at all so I’ll appreciate now…..

On muddled days, it takes more than a while to make sense of the day, but if you don’t panic, you can get there – it just takes a while……

The importance of Time – revisited…..

A simple reblog today….I was guilty as anyone pre dementia. I wished for the weekend, wished for the end of the day, the week, the next holiday…..yet dementia has given me a new perspective on time and enjoying now….dementia may be terminal then so is life…so enjoy today and make the most of each moment as no one knows what tomorrow might bring……..and here’s a blog I wrote in 2015…..my thoughts havnt changed….

 

The fear I felt when I was diagnosed began to subside when I saw that writing was my way of keeping alive and positive and hence this blog was born. My blog and Twitter opened up a whole new world, new communities that have become my friends – some very good friends. I didn’t need many friends before but now I value them all dearly. It introduced me to so many people from all walks of life and all sorts of experiences. I’m not sure if it’s the disease that’s made me more gregarious – I used to be a loner – but whatever caused the change, I’m happy that it did.

Which brings me to the next change – TIME.

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‘Time’ has taken on a whole new meaning. I’ve also seemed to have lost the same sense of time as I once had as I so easily get distracted and ‘lose’ time.

Due to the very nature of the disease none of us know how much time we will have or how quickly the disease will progress. That’s why bureaucracy is now even more frustrating as it takes so long to bring about change.So many unnecessary hoops to clamber through……Time’ almost creates a fear inside; a fear that time will escape me and all the things that need changing will still need changing a year from now. Kate Swaffer in Australia, often speaks of the same frustration and the fact that I’m banging on about the same things as she was 6 years ago is very frustrating……

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Some days there’s a desperate panic to get everything said or written before I forget – time is more important and I’m now a tad obsessed with cramming everything in while there’s time. Always was highly organised – but now there’s a ‘need’ to be meticulous with instructions, maps & pictures.  I have to print out emails and have everything printed and out on display that needs doing for the week ahead otherwise it doesn’t exist.

Paperwork for the week ahead out on display on the worktop
Paperwork for the week ahead out on display on the worktop

I need so much more time to get myself sorted. I get confused so easily if I try and go at normal speed

But I suppose allowing more Time and wanting others to give me more Time are simply strategies to enable me to continue happily.

Often all we need is TIME – please consider that if you have a loved one with dementia or who is simply slow at doing things. What does it matter if it takes me an hour to do something you can do in 10 minutes. Don’t be tempted to do it for me simply because it’s quicker as that is ‘disabling me’ before I’ve lost the ability to do that task. Go off and do something else for an hour while I’m taking my time to do something.

I’m sure there could be a lot more negatives if I thought about it but luckily I’ve probably forgotten them – bonus!
One thing I’ve learnt from this year – don’t worry about the niggles in life – in the grand scheme of things – what do they matter…….but TIME still plays heavily on my mind……..

"Ok Wendy, that's enough of blogging......TIME to play with me........."
“Ok Wendy, that’s enough of blogging……TIME to play with me………”

 

Wish List…….revisited…..

After yesterdays’s contentious blog, I thought a reblog of this one fitted in quite nicely. There’s a fine line with dementia, between being the person I want to be, as I am now, and  going over the edge into someone I wouldn’t want to be – whether happy or not…..this blog was written for the eventuality of being unaware that I’ve fallen over that cliff edge…….not somewhere I want to be but with this cruel dementia you just never know when it will take hold and win……..

I found a list written by a young girl on the thepurpleelephant.org web site. She wrote her top 16 messages to her family. She wanted to make sure that her family hang up her wish list wherever she ended up living should she develop dementia…..

I’ve redone it and  narrowed it down to my top ten…………

•  I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it. It’s the world I’m in, you need to join me.

• I don’t want to be treated like a child. Talk to me like the adult that I am. Don’t surround me with fake images of the seaside – take me there to feel the sea air on my face.

• I still want to enjoy the things that I’ve always enjoyed. Help me find a way to do all these things.

• If  I become agitated, take the time to figure out what is bothering me.

• Treat me the way that you would want to be treated.

• Don’t talk about me as if I’m not in the room.

• Don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live but please still visit me and make sure they have WiFi to FaceTime me!

• Don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.

• Know that I still like receiving hugs or handshakes.

• Remember that I am still the person you know and love.

I’d be quite happy to have this list on my wall…….

 

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…

An Alternative NHS on Wheels……..revisited….

Amazingly I wrote this back in June 2016…..it still stands today……or even more so.

last week the villagers heard that our bus time is changing yet again…..for the worse. 😔. Our service currently runs every hour between 8.15 and 5….now they’re going to run every 90 minutes, they won’t go to Hull and the last bus out of the village will be at 2.20…..😳……..yes, the afternoon buses may be quieter, so why not put on a smaller bus? AND the only reason it’s quieter is because there aren’t any buses back! The village bus is a lifeline for soooo many, yet now our lifeline is being reduced further…….so sad and so unfair…..

Anyway, this is what I wrote 3 years ago, which shows the importance of the village bus……..

Since moving to my lovely quiet village, I’ve begun to appreciate the value of the village bus service. The impact it would have on people’s lives if it was cut would be catastrophic.

Catching the bus is some peoples’ only contact with other people.
So many times I’ve heard people say that they wouldn’t see anyone if they didn’t have a trip out each day.

People often go to the bus stop early for the simple reason, to catch up and chat with their fellow travellers.

It runs once an hour but the last bus home is at 17.10, which is a bit of a nuisance, but it provides a valuable community service. Many residents catch the first free bus at 10am – the first one where you can use a bus pass. I join them when I’m home as it’s a fountain of knowledge for everything that’s happening in the village. You hear who’s ill, who’s better, who’s on holiday and where; you hear stories from the past. This week I heard all about the time the village was cut off by the snow. Goodness knows how we got onto that subject but it was lovely to hear the stories. My own street had been wall to wall snow and the snow plough had come to a halt outside the village so everyone had to trundle through the drifts home, helping each other back to their houses. It was all told with tales of excitement, adventure and community spirit. Everyone at the bus stop had lived there a long time so could remember except me! I might be an outsider but everyone is so warm and welcoming. No-one passes by without a smile and saying ‘hello’.

As soon as people get on the bus there’s lots more greetings and smiles from everyone. Even the driver knows everyone and everyone seems to know the drivers by name. Due to the passengers being of a certain age, the drivers appear to automatically be more considerate and jolly.

It may be that the driver takes little money on these journeys as most people have a bus pass but the service it provides is so much more than a transport service. It’s a social connection that would otherwise be non existent in many people’s lives.

I like to call it the NHS service on wheels…..and far better than pills and potions……..🚌

A ‘Dear John’ Letter to Dementia….revisited….

I’m sure I published it many years ago but dementia didn’t listen then and I’m sure it won’t listen now…….🙄

Dear Dementia,

We have to sit down and have a heart to heart………..

I preferred my life when you weren’t apart of it but now I can’t live without you – sadly – but there’s no need to be with me 24 hours a day. I’d like some time on my own please. You’re in my thoughts – constantly….however, sometimes I’d like to forget about you and you me, and return to days gone by, before you’d entered my life.

I know we’ll never part, and I know some days you’ll be insistent on making your presence felt, but some times it’s just nice to be single again and roam around and mingle like you weren’t there……to have conversations that don’t involve your name; not to have to think of plan Bs to accommodate your presence……..to simply be me…..without you…….

Some days you can stifle me into submission. On these days I accept we’ll just sit together and while away the time until you feel able to leave me alone once more.

If you ever feel you’ve made a mistake and want to leave me forever, I’ll be happy to wave you off and wish you well………….

Living Alone versus Living as a Couple…..reblog…..

Another reblog ……this time from December 2016……and quite related to yesterdays blog about our course as the topic is included in one of our sessions!

No one gives you a handbook when you’re diagnosed and one of the most difficult things for couples to accept is that you will need help and support and ‘training’ on how to support a loved one with such a diagnosis. It must be a difficult concept to come to terms with. After all here is someone you may have lived with for 20-30 years – why on earth would you need training? But why wouldn’t you need training on how to support someone with a complex brain disease?

Training and support for couples in the practicalities is something else that’s sadly lacking post diagnosis.

It got me thinking about how lucky I am, in many ways, to live alone. It’s a family joke that my eldest daughter, Sarah, moved out of my home on the day I was diagnosed. This wasn’t due to Sarah ‘running for the hills’ at the prospect of what lay ahead, but a happily made decision to set up home with her partner.
However, it was actually a blessing in disguise. When you live with someone, it’s quite natural for one to move things around, tidy up, be messy – all of which would be unhelpful for me.
It’s human nature to do things for the kindest of reasons but which would annoy the hell out of me in reality.
I’m an independent kinda person who likes to be left to her own devices. I used to be really tidy and not have papers everywhere, however, if I now file papers away, they no longer exist. So on my stairs at the moment are various bits of paperwork where the subject matter is still outstanding. All the paperwork around me moving house is there – because I havn’t moved yet; all the paperwork that would normally get filed away because I would remember to deal with it is still there until it’s happened – then it can be filed away.

I’m fortunate in so far as I was always an organised person so I havn’t had to learn that new skill.

The worktops in my kitchen are far more cluttered than they ever used to be. Each week I lay out paperwork that I need for the coming week. My calendar gets stuffed with paperwork relevant for each month so I don’t forget to deal with it.
Notes lay strewn everywhere to remind me to do things or as a reminder that something is happening.
If there was someone else living in the house, it may become impractical or seen as a nuisance, maybe annoying or something may get moved accidentally – all of which would lead to confusion.

I don’t have someone rushing me or questioning why I can’t remember something.
I don’t have to give excuses or reasons for my action.
I don’t have someone doing things for me because it’s quicker
I don’t have someone fussing when I’m having a bad day
I don’t have someone urging me to eat when I’m not hungry
I don’t have to think whether I’ve upset them
I don’t have to worry that I’m having to do things differently
I don’t have to worry about being slow
I don’t have anyone correcting me when I get the wrong word or date or name
I don’t feel like I’m letting anyone down
I don’t have to justify why I’m behaving as I am.

However, there are things that I miss…….

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I don’t have that hug available when things go wrong
I don’t have that someone to help jog my memory
I don’t have that support when I find things difficult
I don’t have that back up brain to remind me
I don’t have the constant company
I don’t have that someone to laugh with
I don’t have someone to switch off the cooker when I forget…..😳

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But all in all, I enjoy my own company and am happy to muddle along alone and my daughters are only a ‘whatsapp’ away………..how the world has changed…….

Not sure why or how Snoopy has come to mind but used to love Snoopy years ago😊
Not sure why or how Snoopy has come to mind but used to love Snoopy years ago😊

Damian has done some brilliant work with couples in York with a programme called ‘ Getting along’ – more can be found at: