So after Mondays meeting in Durham we all trundled in a taxi to the station…..but when the cab arrived the driver pre warned us of chaos at the station 😳……we all quickly began to scan our phones, me included, to find the latest updates, only to see a stream of ‘Cancelled’ or ‘Delayed’🙈
They suddenly announced that coaches would take us from Durham to Darlington, but they weren’t sure when🤯 and then we’d have to get another coach from Darlington to York, after which trains would be running south…mmmmm…..so Mara decided we’d all get a taxi from Durham to Darlington as we’d get a head start on everyone else.
We had to get 2 taxis as a poor Norwegian girl had latched onto us and was in the middle of the chaos in a foreign country so we couldn’t abandon her…..so 3 in one taxi, 3 in another…..
It was dark by this time and I just had to sit quiet. Travelling in the dark conjures up scary shadows in unfamiliar places so I simply sat trying not to panic at the knowledge I didn’t have a scooby doo where I was. But thank goodness I wasn’t alone.
It took us about an hour to get to Darlington where more chaos was in situe…….they directed us to another queue for a coach and this turned out to be the queue of all queues….snaking round and round the station with not a coach in sight…..🤐……more darkness….more shadows….
We suddenly realised Nick and Chiara were a few people ahead of us and Chiara took a tea and food order and trundled off as it looked like we’d be there quite some time….
When she came back with a welcome cuppa she suddenly had a genius idea…..could she advocate for me and ask them if me and Barbara could jump to the front of the queue because of my lanyard? Well in for a penny, I said anything was worth a try. If I’d have been alone, I would probably have gone looking for someone to help me, but because I was with others I just stood, not knowing what to do for the best, but knowing I was with them…..
A beaming smiley face came back and they’d agreed we could get on the mini bus that was about to leave…….how amazing and relief flooded through me and Barbara cos at least we would be moving….my lanyard worked in my favour yet again……..We trundled past queues and queues of people and I did feel guilty…for a nano second…
……couldn’t believe it was a mini bus and not a coach, due to the hoards of people but guess they had to take what they could get!
I knew neither of my daughters were free to pick me up from anywhere but also knew at some point that Sarah would look at the tracker to see I’d got home……so half way to York there was a ping on my phone and it was Sarah querying where I was 😂🥴……..at least she could keep me company but I also knew she wouldn’t be able to sleep before she saw I was home……tables turned …as I, as a mum, used to be laying awake until I heard the key turn in the lock when they were out as youngsters….🙃……
We finally arrived in York 4 hours later 🤯😳 only to find the chaos still present, just a different station……🙈….luckily I was going east and I managed to catch the last train to Hull as no trains were going south via Doncaster……but I’d had to leave Barbara.😔
Someone later told me that everyone going to London Kings Cross had to catch a train to Leeds and then a train from there to London……🙈🙈🙈🙈🙈 I so hope Barbara found someone to help her…
Prof Jan messaged me to check I was ok….nothing anyone could do, I just had to not panic…so I spent the journey from York playing solitaire to keep calm……
Once in Hull I knew I’d have to get another taxi home as no more trains to Beverley….but…..luck was on my side for a change and as I took one last luck on my app before we pulled into Hull, I notice the Beverley train had also been delayed…..as my train pulled in so did the delayed train for Beverley…..
I finally got home just over 2 hours later than planned totally running on empty
…..but at least I got home. Sooooo hope everyone else did too…..🤞
P.S. Turns out I was the lucky one as poor Barbara didn’t get home until 02.30am 🙈😳😔
Friday was a very special day as Gemma and Stuart were taking me to my paradise of Keswick for the Victorian weekend……..well that’s what we’d thought 🙄…..
I’d booked the trip months and months ago as Gemma has never been to Keswick but a Christmas trip swung it as she’s as bigger Christmasholic as I am…😂🤣,,,however…………..we hadn’t realised that those many months ago was probably when I started getting in a muddle with numbers and dates…..
For a start, I’d put it on my calendar as the 1st November, so definitely had the 1st in mind…but had booked our stay in Appletrees as the correct dates of 29th and 30th of November 😇……🥴
When I started getting excited the week before, I thought I’d just check the website for the Victorian Fayre……..😱🤯😳🙈……1st December…..starting at 10.30…when we had to leave at 8 to be back before Billys hotel closed at midday….🙈🙈🙈🙈🙈…….I double checked with Catherine at Appletrees to make sure I’d really booked our rooms and thankfully I had……but we won’t be there for the Christmas festivities ….the reason Gemma had agreed….🙄…..so how to confess in these circumstances …?…….well I decided Twitter was my best option 😂…..I put:
“If I confess via Twitter, will that mean I’ll be in less trouble….”…….🥴
Anyway, all was right in the Mitchell household and Gemma was just looking forward to seeing my paradise….
It meant Billy had to go in his hotel for 2 days and when I arrived he was fast asleep so wasn’t going to be impressed…🙈😂…..his hotel was actually closed but they’d agreed to open it just for Billy so he was going to be spoilt rotten, so me thinks his bad mood might change once he gets ensconced on King Billys throne 😂…..
We dropped Sir William off and left him sorting out his hotel room and off we set…….It was the most glorious day for a trundle to paradise…..with clear blue sky all around…
We stopped off on the A66 at the lovely farm shop there, only to find everyone and their dogs had also decided to take a break there 🙄….it had a lovely Christmas Cabin, which drew me and Gemma straight in 😂….deciding that queues weren’t for us, we got a cuppa takeaway Yorkshire Tea and some snacks for Gemma and Stuart and sat happily in the car for a few minutes before setting off for the final couple of hours…..
As we crossed the Penrith roundabout, the first sign for Keswick appeared and we were heading down my favourite road, passed Stainton, Pendruggan turn off and then Threkeld …..and then the calm washed over me…..the beauty engulfed me as paradise appeared….
We parked up, breathed in the air and took a walk down to my favourite spot
The Lake was so still, so calm that the reflections were crystal clear in the water…..
Gemma was being spoilt on her first visit. Even she noticed how clean and fresh the air was filtering easily through her lungs…..and filling them with loveliness…..her silence staring out at the water said far more than words. I think she finally understood why THIS is my paradise……
It was bitterly cold, but that added a newness to the beauty as I’ve never been there so late in the year.
We headed back to Appletrees to drop off our bags and my lovely B&B, along with Catherine the owner, engulfed us in a massive Christmas hug. Each room having it’s own sprinkling of Christmas sparkle.
It was getting dark so we decided to head into town to pick up my supplies for the evening. The town didn’t disappoint. We may not be there for the Christmas fayre on Sunday but the town was decked in lights and all things Christmas…
It had been a long day and we all ended up getting supplies for a snug night in readiness for our full day in paradise…….
We woke to find a beautiful white world had descended…….
After breakfast we ambled towards the river and walked alongside through Fitz Park, cheered by the sight of many happy dogs having their morning walk. Up one side of the park and down the other….
…..before trundling from one Christmas decked shop to another, buying things we never knew we needed….🙄😂……stopping for a cuppa halfway and playing trivial pursuits as cards lay in readiness to entertain on each table….a final push to the last shops before heading back to Appletrees for an afternoon snuggle before one last trundle to my favorite spot before it got dark……and we were greeted by an wonderful sunset to end our visit……❤️
An amazing 24hrs in paradise. Sooo lucky with the weather, crisp and white and sunny….before our long journey back Feeling refreshed and happy to be picking up Billy……..
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…….
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……
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.
‘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……
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.
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……..
Yesterday saw me trundling to Penrith in Cumbria……which is verrrry close to my paradise of Keswick. I’d been asked ages ago if I’d speak at the Annual Cumbrian Churches Dementia Conference and I must confess that I’d said yes without really looking at why I was going as it would mean a quick visit to Keswick in the autumn 🙄🙈
The people contacting me, Yvonne and David had sounded really kind on email and were asking all the right questions re support etc…..so it seemed a shame not to just got for it, even though it’s quite a trundle. Due to the distance they’d offered to put me up for 2 nights, which would make it less stressful…..
Anyway, we’ve had torrential continual rain for days now and it continued all the previous day and the night before. So much so that the taxi driver surprised me by coming from the opposite direction. He said he hadn’t been able to get through the village the previous night because of flooding 😳😱…….as we made our way slowly along the high street it became clear that it had subsided but you could see the debris piled up at the side of the road….we’re a very leafy village the autumn leaves falling always cause a problem with the drains…..
As we picked up speed the dark another flood across the road took us by surprise….must be scary driving and not being able to see the water in the dark…..
Once we’d settled we began chatting and he asked where I was going on my trundles this time….he confessed to having just downloaded my book and had been hoping for long airport rides so he could listen to more ❤️…….
The first train took me to Hull, and the chaos soon became evident as Doncaster had been hit hard again by the overnight rain and no trains or buses were heading that way…all were being diverted via Leeds……luckily for me I was heading westwards today towards Manchester ….🥵…it was silly oclock, still dark so no early morning piccies…….all I could see were headlights and the glistening of water everywhere……
As night became day the Pennines came into view looking soggy and drab but still beautiful
As we crossed from one side of the country to the other, the sun began to shine, the sky was blue and the ground less waterlogged…..what a difference……and the bonus of the patchwork quilt of loveliness…..
My lanyard worked all the way yet again, with the guards helping me at every stage even though this time it was Transpennine Train company ……made such a difference especially since my suitcase was full of books 🙄
Anyway, once at Penrith I took the taxi the short ride to the hotel to drop off my bag, trundled outside back towards the station feeling a lot lighter and thought I would have to wait an hour for the bus ……when suddenly in the distance I spied the X5 heading towards me…..I was nowhere near the bus stop but stuck my hand out hopefully and Mr Kindness was driving the bus as he stopped with a smile …….I would get an extra hour in paradise….🥰…..#randomactsofkindness……….❤️
Being out of season, the bus was quiet and I had the front seat upstairs with views to die for….
As we neared Keswick, calmness wrapped me up warm in a paradise hug and I settled down ready to be mesmerised by the autumn colours…….and even a dusting of snow on the peaks…..
I went down to the Lake and sat in my favourite spot………it’s a lovely warm glow inside when you find that special place to call paradise…….
More photos followed as the sun tried hard to shine through…but it didn’t really matter what the weather was like……the autumn was stunning wherever I walked…
I watched 2 dogs playing in the water chasing a very large branch and then each running to its owner with 1 jaw round each end, happily sharing the load…
It took me by surprise that the launch was running this time of year but It was a nice day so expect they were making the most of the opportunity…
So I ambled up to the boat cabin to see if anymore were going today…to find I was in luck ….along with a few other hardy souls I braved the outside, in order to get better piccies…….but ventured inside on the way back as my fingers had gone numb 🤣
I came across 2 people weaving willow branches looking out onto Derwentwater . I went up to chat to them and it turned out they’d been commissioned by the National Trust to make a “viewing spiral” out of willow, with holes woven into it through which you can get magic piccies…….they even left me help! So if you happen to see it and spy a dodgy bit, it’s probably the bit I did……🤣
I found somewhere to sit inside for my last while and the heavens must have been watching as it pulled the plug on the skies’ bath once more ………but what a wonderful few hours I’d had and at least the weather had waited until I’d finished…..
I’ve written so much for this journey that Me thinks I’ll have to publish this as an extra Saturday blog and the actual conference will follow on Monday….
Today is a simple blog for me as I head towards Penrith for a difference type of Conference for me on Saturday, which means I’ll be able take a quick trundle on the bus to my paradise of Keswick hopefully , just to say a quick hello to calmness…….think I said ‘yes’ to going before asking what it was a about ….🙄🙈😂
It’s 2 links……one, a vimeo made by the talented artist, Suki Chan, with some input from me…..on Consciousness…..I truly love the bee hive at the beginning that resembles the folds of the brain…..along with the haunting music that matches perfectly….it’s a short trailer as we’re planning on doing some more work around this…..it’s my voice at the beginning talking about the fog I experience…..
The second is a series of words and pictures around the same theme, some taken when Suki visited me at home…..”Suki Chan applied for funding through Developing Your Creative Practice, to focus on researching and developing CONSCIOUS. A new project that will explore consciousness, Artificial Intelligence and dementia”……….you need to swipe up from the beginning…
I was looking through the apps on my iPad yesterday and suddenly saw one for my Home Insurance…..it got me wondering how long I’d actually been in my village house….it must be more than a year, I thought to myself, but couldn’t work out how long. So I had to fo some digging amongst paperwork to find out…turns out ivebeen here almost 4 years to the day…😳😳😱😱😳😳😱😱…how can that be? Sometimes it feels like I’ve been here forever, other times, like I moved in yesterday…….how weird to think it’s 4 years…that totally shocked me and I had to check other paperwork to make sure it was true!
Anyway, the reason for typing this was when I looked around my house yesterday and realised how totally inappropriate a choice it was for me when I did move here….as I stopped to draw breathe at the top of the stairs 🙄
and looked out onto my garden that needed tidying…again…..
But would I change it and move again…?…..well I never say never any more, but I very much doubt it.
I’d spent my life loving the opportunity to move to a new house. The new adventure of discovering a new area, a new house to make my own, all the work needing to be done and doing most myself. I adored that part. But when I chose this house, me and my daughters just didn’t realise I just wasn’t capable of making the right choice. Dementia had already taken that logical ability away from me….we just didn’t know it at the time..
I clearly remember standing in front of the big picture window in the living room, staring out at the view, and saying, “I love it, this is perfect’. I doubt whether I’d taken any notice of the rest of the house. The 3 bedrooms I didn’t need, the gardens I certainly didn’t need, the steps I would trip up and down outside. So much was wrong, yet that one view sold it to me.
I live upstairs when I’m there during the day and chose the room at the front as my room. I could have chosen the bigger room at the back with the fitted wardrobes but the one at the front has the same view as the living room, only higher, so what’s not to like….?
I had to move to a cheaper area to pay off my mortgage. It was an expensive village so I had to choose the cheapest house in a beautiful village. I was lucky and had enough money to pay for the path at the front to be widened. I was continually making eye contact with the garden at each side as I wobbled over, so it had to be done. But the workmen put tramlines either side for me to follow so I don’t think I’ve fallen in since….🤔 well I did keep tripping up the steps so I just painted luminous yellow stripes down each, so they help now…..mmmm looking at this piccie, they need a refresh me thinks…
I couldn’t see the grab rail up the stairs as it was pure white and blended into the walls, so I stuck some blue electric tape at regular intervals and had another grab rail fitted the other side, so I use both to climb the stairs now and just accept that I’ll be puffed when I reach the top…
And the big spare room is my memory room where the walls are covered with photos and boxes of memories to calm me on a bad day
The small spare room an office that I don’t really need…
But we are where we are. The thought of the trauma of moving and getting use to somewhere new means it’s no longer an option, so we adapt as the challenges appear….
I could easily live in a one bedroom house, all on one level…..the ideal….but I don’t. Sometimes we make bad choices in life without realising it at the time. It’s how you deal with those bad choices that turn it into a success……..or a manageable success…….and how could I move from my view or my village……especially on such a lovely sunny autumn day…
Yesterday I headed to London ….I’d been emailed a while ago by Sky 1 ‘What’s Up TV’ asking if I would be part of a programme for them……In their blurb it says~:
“It’s a broadcast magazine show which focuses on providing engaging and inspiring content for a 16 – 35 year-old audience. The programme, now in production of its 17th series, reaches over 100,000 households, making it one of Sky One’s most popular shows. We have covered topics such as; SUDEP (Sudden unexpected death in epilepsy), Myalgic Encephalomyelitis (ME), Domestic Abuse and many more.”
So it sounded like a good content programme and the emails I got were also kind and reassuring.
The aim of the piece they wanted me to do was to raise awareness of dementia, highlight the lack of funding for dementia as well as lack of understanding……
For those of you that have been hibernating for the last week or so, there has been severe flooding all around the Doncaster area and there have been no Northern trains running from my area to Doncaster since last Friday, I think…..so I was getting a tad worried about my plans…..I needed to get to Doncaster to catch the London train so I needed a plan B……and a plan C for getting back home…..🙈
I spent Saturday trying to work out what to do but gave up as the situation seemed to change by the minute so left it until Sunday morning to decide…..and thought and thought…..took me forever…..the web sites were no help as some trains said they were running on one site and not on another…..
The reason I decided to put myself through this was the venue they chose to record it in……The Clock Tower room at St Pancras……
The number of times I’ve looked up there to get the time while being in London, not realising it had hidden secrets and now I would be inside it. So I couldn’t resist the inevitable stress I would go through just to get there……..
Anyway…..my plan b was to set off 2 hours before I needed just to try and get to Doncaster for my connection…..when I got to Hull the boards were full of ‘Cancelled’ heading towards Doncaster, but the only direct LNER train to London was sitting in the station. It was the 7am and I hadn’t even been due to arrive into Hull until 8.45 🤐………but the thought ran through my head that if you don’t ask you don’t get…….
I walked up to the guard, and he immediately clocked my lanyard….I’d also put a card in my lanyard. I don’t usually do this,
but thought today I would as I knew I’d be doubly stressed about travelling and it might just speed up being helped…..and it worked…..he immediately said:
“Come and sit down so we can chat, we’re not due out for ages’
And so we did. I told him my predicament. How I did have a ticket booked from Doncaster but not until 10.18 but wasn’t sure how I would get to Doncaster…….
He immediately found me an unreserved seat, and then said, “just travel with us to London, then you won’t have to worry about Doncaster”
That small act of kindness that cost nothing, meant a stressful worrying start turned into a calm relaxed journey. Yes I did get there 2 hours before I was suppose to but so what…….
The start of the journey was in darkness but as soon as the world began to wake I could see the devastation of the floods in the fields on farm land…..goodness knows how households are coping…😔as we pulled into Doncaster the once clear landscape was heavily flooded……
As we trundled further south the landscape began to change to green and brown again…and autumn colours highlighted the landscape instead of a watery deluge….
The train manager came and checked on me every now and then to make sure I was ok, and asked if I needed to phone anyone since I’d be so early. I said I was happy watching the world go by for the couple of hours but he insisted I wait for him to come and get me, he’d walk me to the LNER lounge where I could wait in the warm with tea on tap….again, such a simple act of kindness and compassion for a fellow human being….he didn’t have to do that but he did…….I tweeted LNER to tell them so……
Katie Moore, researcher for the programme, had agreed to meet me at Kings Cross and walk me over to the venue. We’d exchanged phone numbers for txting, so I txt her the change of plans…I’d also had to book a different ticket home so I wouldn’t have the same problem in reverse, but they’d said they were fine with that and just to go ahead…..they’d refund me both…
The train manager kept his word, unlike Assistance, which forgot me, so I’m reluctant to use them again …..and he took me upstairs to the lounge area where it was nice and snug and tea on tap as promised…..👍makes travelling alone possible and manageable if people along the trundle are kind…..
Katie txt to say she’d arrived a tad early for me and we walked over to the clock tower
and here was the amazing view from our floor looking down to the ground floor…..
And here was the view of Kings Cross from the window of the room…..only a few minutes before, I’d been stood on the outside looking up…
Katie told me how they weren’t being charged for the venue but instead the company would donate to charity and the location manager, Peter, would also donate……how kind is that…❤️ as I imagine that venue could charge a huge fee……also on the way up in the lift she told me how some of Harry Potter was filmed here 😳❤️❤️❤️ The location was truly magical and I could well see the appeal for film companies…
I met all the crew who were just setting up and sorting out all their stuff….
Nayha, the interviewer arrived……and we chatted happily about the questions and just got to know one another….the term ‘sufferer’ was used by both Katie and Nayha, so I told them why I prefer ‘Living with’……..we had lots of laughter about Katie’s Liverpudlian accent, and how she must never lose it…….and then the director sat quietly and asked me questions simply to help in his personal life……
Nayha asked me 5 questions that turned into 6 after speaking about the word ‘suffferer’ …..around the NHS, symptoms, positive outlook and advice to people living with dementia and those supporting, what the government can do with regards to care costs, adapting my house, why I don’t like the word ‘sufferer’ in everyday life…..
We recorded the questions and answers twice and I did warn them that I might say something different 😂🤣
For the question that asked, ‘what should the government do ….’ I answered….
“Treat those of us with dementia on equal terms as those with other conditions such as Cancer . If you’re diagnosed with cancer you have NHS support until death, whereas people with dementia have to fund their own care costs….”
Once finished and while I typed away, they recorded the ‘nodding’ shots, the background shots of Nayha…….soooo funny…..asking the questions without me there…
I climbed the stairs up towards the clock, with everyone but me freaking out at me climbing so high 🤣 and took this piccie of the crew, me thinks they were more worried about me than I was until I told how I’d done a skydive earlier in the year 😂🙄
Katie then climbed the stairs………
but hadn’t realise until then that she was afraid of heights and had to be rescued…..bless 😂🤣 …..and someone else took the piccie…..
They were such a lovely crew…….so friendly, so kind, so willing to listen and ask questions…and it all worked because Katie did such a wonderful job of getting to know me via email first and sorted out everything I needed so perfectly…….just how it should be……
It will aired in February sometime and the programme goes out at 11.30 am on a Saturday and this piece will also include a Labour and Conservative MP, 2 sisters who lost their dad, Dr Selina Wray from UCL, …….they will also put a link on YouTube so I’ll share it when I’ve seen it……..
Katie described it as a ‘Celebration of identity’…….even though you’re living with dementia you are still a person with a life to be lived……………wonderful…..fab day with fab people in a fab venue …….and because they allowed me to book another ticket home, which was a direct train, it was also a stress free journey home…….
A simple blog today after a mega busy week last week…..I found it lurking in my draft blogs so not sure if I’ve shared it or not so apologies if I have, just delete!..
The first is a link to an article I recently wrote about the parallel lives people with dementia and our supporters lead……in some areas now, it’s said that people with dementia’s voice has become too loud and carers are now forgotten……well what rubbish, one can’t exist without the other and surely those of us who speak out can help those who support to understand ? Both are equally important, just have very different needs. For many years it was only carers voices that were heard and now we’re simply addressing the imbalance me thinks…..
And next I was interviewed by Sue Learner and Jill Rennie for the ‘Let’s Talk about Care podcast, while I was at Cheltenham book festival.
I loved hearing the background of the Writers room in the background…..I spoke for 45 mins about the fog, speaking to those I’ve never spoken to before, ‘challenging behaviour’, value of pets, fake displays in care home, euthanasia, Twitter and much much more.
“Are we ‘celebratising’ dementia…?” A comment from an academic on Twitter last week……not sure if there is such a word….but hey ho……
It was in response to one of my tweets so I can only assume it was angled at me and maybe other playmates, didn’t know the person but jotted a note down to write this blog, then couldn’t find the tweet again 🙄……but ‘really’, ‘celebratising’? Are we not just speaking out in public to show we CAN? To show we’re no longer being silenced by society?
I asked my dear friend Google for a definition of ‘celebrity’…. It gave me 2….
‘a famous person, especially in entertainment or sport.’….well no, that’s not me….
The other being:
“the state of being well known….’
Well the dementia bubble is so small, yes I’m ‘well known’ in it, but even then, only in certain areas and many others have been around far longer than me and are more ‘well known’. I just talk along on Twitter whereas others use other ways…
I have fun on Twitter because I use it as a silent support medium….I show my weaknesses quite openly, because I hope it helps others.
Have I made dementia a ‘soft’ subject….a subject not to be taken seriously? I don’t think so. My form of activism may be ‘soft’ but it brings new people into the arena, a new audience who is listening. I’m loud on Twitter because I love that forum – my silent world of conversation enabling my fingers to do the talking and my fingers are far more articulate than my spoken word.
Does that make me “celebratise dementia”…… ? I really hope not as that’s not what I ever wanted.
As my daughter Gemma said on Twitter recently we live in an “inherently disabling environment”, surely any voice in any arena is a powerful message that we’re here, we won’t be silenced?
I can’t be the serious activist with all the Rights data stored in my head, because that’s not me – I wish I could sometimes but I can’t retain Human Rights data. Many others are far better than me at that sort of activism and equally, if not more well known for it.
Yes I’d preferred to be known as a mum, as an author who wrote a good book, but it was dementia that gave me that ability to succeed in an area I’d never entered before so I do have to give dementia some credit there. I would only be known as a mum if I didn’t have dementia and only by a few friends and my daughters, so, yes dementia has brought me many new friends, has created a new world around me – so if I’m known by more in this small bubble of knowledge that exists in the dementia world, does that make me a celebrity, or simply well known by some?
I like to show dementia warts and all because that’s the reality. I have fun, I have adventures, I have totally rubbish days where I wish it was the end….I enjoy the social contact that Twitter brings me…..me a ‘celebrity’ – I think not…… I just want people to listen to take note and to think……is that what a celebrity wants? I don’t think so….
To take the seriousness out of this and to show the fun side of me….I’ll show you the piccie my daughter Gemma took of me while we were shopping in Leeds at the weekend…..
Nope, I can never be serious for too long and laughter and fun help me cope with dementi….I’d probably cry otherwise…..