Yesterday was the date of the rearranged PIP (Personal Independence Payment) visit…..last month they were due to appear but failed to turn up…..you can read about it here if you missed that one…
Yesterday the letter said they were due to arrive between 09.00 – 11.00 and I sat waiting for Gemma to arrive. The nerves had been rising inside for days….that feeling of worry, that whittling and gnawing away in my head…….knowing what was to come…..or not knowing….
The early morning was a roller coaster fuelled hour as I opened my inbox to find a wonderful email from a company that I’m hoping will help me with my next fund raising adventure. My support group at York Minds and Voices, is running out of funds, so this year I’ve decided to raise money for them. I looked through the piccies of my sky dive last year and was transported back to that wonderful day….floating in the sky…..and for a moment it lifted my spirits…
They agreed to my taking part in the adventure….just need to find the right method to raise money now so WATCH THIS SPACE!!
After reading that, I closed my iPad and the worry returned, Gemma arrived, and we sat waiting for the Assessor to arrive…….
They were due between 9-11 and amazingly arrived at 9am 😳……my stomach churned as Gemma let her in……
We sat there for 90 minutes, talking about all the things I can’t do, about my vulnerability, my failures…obviously I wasn’t typing so this is simply what sprang to mind as she left…..
She was very thorough…appeared very kind. I was very vague, as usual, as I find it hard to remember the bad stuff, trying continually to block that from my mind every day. But luckily Gemma didn’t, and filled in all the gaps, prompting me where necessary….guiding me through this maize of conversation that left us both exhausted but glad it was over…..she did give us one helpful suggestion – for one of my daughters to become ‘An Appointee’. I’d never heard of that term before, but apparently it will make some things easier. We’ll have a conversation and do some digging around. How are we suppose to know these things if no one tells us in the first place…? But at least she did..
As the woman was leaving, she apparently said to Gemma:
“People like your mum shouldn’t have to go through this, but sadly it’s the system…”
Well at least she had a heart and saw that…..but it’s not her that makes the decision and someone else could look at her report and see things entirely differently. We will just have to wait and see….
As she disappeared and left me and Gemma on our own, we hugged and I cried…..simply the relief of it being over leaking out through my eyes………a system which tries to catch out the few and fails to support those with a genuine need…..
Todays blog is a mish mash of all the other stuff that happened this week….
On Tuesday afternoon I had an email from ITV news asking if I’d give an interview the following day, Wednesday, about the increasing cost of care for those living with dementia. The figures were due to be released on Wednesday morning. I emailed back saying I could but only if it was in the morning as I had something else in the afternoon and they agreed.
Apparently I’d done stuff for them before and they had some archive footage of me in my Memory Room, which they asked if they could use. But I’ve since realised that not everyone pictured in my room wants their photo popping up randomly on telly and I consider this to be my private space now, so I asked them not to unless it only contained views. Assurance given about this, we agreed a time. The headline read due to be released read:
“Dementia care costs in Yorkshire and the Humber are set to increase by 66% over the next decade, as pressure on families increases.
Care costs are predicted to rise by more than 70% across England by 2030.
The Alzheimer’s Society is calling for social care investment to be a priority in the Spring Budget.”
I may have stepped down from being an Alzheimers society ambassador, but anyone affected by dementia can see what a priority this needs to be in the spring budget.
Anyway, they were due at 10, so I sat in my chair in my own little world looking at the bird and squirrel activity in the paddock….they’re always too fast for my click, but they’re all there enjoying their day…
Helen and Jonny arrived at 10 am as planned and started setting up the paraphernalia that comes with TV. They were from the local ITV Calendar news to film a short piece about me and about the news out today and were lovely smiley journalists, very respectful of certain conditions I wanted them to follow…
I’d already typed a few sentences down so I didn’t waffle as I knew I would only have a few minutes. So I had to make the most of the time I had.
It’s always a bit pot luck what they keep in and what they take out of pre recorded interviews. That’s why I always prefer to do live TV, then whatever I say is there and can’t be removed.
Part of what I said was:
The Social care system is broken due to successive governments having ignored the inevitable ageing population that has been forecasted for years and the increasing population of those of us with dementia is forecasted to increase so the problem will get worse and those living with dementia appear to be at the bottom of the pecking order for support.
Also how:
Unpaid carers save the government billions, yet when they actually get to the stage of desperation and needing care home help we’re faced with huge bills often meaning we have to sell our houses to pay or families taking out extortionate loans to pay for that care – if we try and remain in our own homes we’re penalised in the benefits system so we’re meeting brick walls at every stage with dementia.
And finally around Care Home care…..
I’ve heard of some care homes costing many thousands per month, so far out of the reach of ordinary people like me, and yet there’s no guarantee of good knowledgeable care in any of them. Just because they cost a lot doesn’t mean they have staff who understand and all have specialist training in dementia.
I so hope some of this gets an airing tonight…
P.s – I watched it live but they missed out lots of the important bits, as always, but at least I’d documented my thoughts above…..and it got some airing on TV.
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That same afternoon I had to go to Humber NHS Trust as they’d realised I hadn’t had a DBS check. It’s needed to protect vulnerable groups of people from others, so this time, from me😂😳…..which makes me chuckle every time I think about it….but dementia doesn’t discriminate and I could have a criminal record like anyone else…..so I understood why the need for it…
Had to look up what it stands for but it’s ‘Disclosure and Barring Service’..apparently…..Katie from the Research Team picked me up and sat with me while I went through that process and then took me back home again……hopefully I havn’t forgotten about robbing a bank at some point 😳🙄😂🤣
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And so to the final extra. A lovely visit from the talented Suki Chan on Thursday!
This is my third visit from Suki. Last time she completed an amazing film which will have it’s first showing and be launched at the venues who commissioned the piece starting in Rotterdam next month. I’m one of the 3 subjects she chose and it is stunning…can’t wait to share it…..it’s in Liverpool next year and am hoping to join her on stage if they’ll allow.
This time Suki wanted to film using a 360 degree camera which also provides 3D images…very clever stuff.
So she arrived before the forecasted heavy rain, thank goodness….Suki arrived with soooo much paraphernalia it made me chuckle….and THEN she asked me the most amazing question of whether I would want to visit her bee man in Cambridge that has provided her with wonderful footage of the bee hives representing the brain…….I was overwhelmed and can’t tell you how exciting that is for me…Imagine the piccies I could get of me in a bee suit along with her little child also in a bee suit…..wonderful! You can see these wonderful bees on a trailer for one of the previous videos I helped with..
Anyway, excitement over and down to work….Suki had come to interview me again and we did that for about an hour or more. Describing certain things from my book, certain feelings and thoughts about the future and so much more…but I wasn’t typing so can’t remember anymore……
We then had our final filming to do with a 360 degree camera, which was amazing……we named it ‘Q’…..I hadn’t realised but ‘Q’ was the world’s first genderless voice, hoping to eradicate gender bias in technology and is known as the voice of the future…..it’s also the name of Suki’s daughter!
Suki wants to create a film for others to watch which would show the world through my eyes. …..it was totally fascinating watching it all unfold…..the wonders of technology!! I had to leave her to it in the end as my batteries were low as we’d done so much talking…..
However……Suki is such a clever unique artist and a joy to work with….can’t wait to share her work…
In fact it wasn’t a fog at all, more like an electrical storm in the diseased part of my brain….
I typed this in the evening while it was subsiding….my fingers being controlled by a sunnier part of my brain totally separate…Imagine the brain as a map of the world and my fingers live in Australia and the electrical storm was in the UK……and my way of dealing with what was happening…
I was in London for our ethics meeting – playmates in discussion with like minded academics. I spoke of the bad day in that blog…..
But it was more than being discombobulated but took me until the evening to be able to assess what was going on.
The day had started off badly, being rushed, losing my stick, getting lost, but now I realise why. I usually call it ‘The Fog’…but this felt different. When the fog descends I can make little sense of the world around me – the time, the people, the place – but this time I knew where I was, I knew the people, but this electrical storm inside my head was causing different problems….I often use this analogy to describe how dementia affects our ability..:
“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. That’s why I can speak and they can’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. Typing is my escape from dementia.”
Well last Wednesday my lights were certainly flickering on and off at an alarming speed…in our meeting, we’d been asked what we need to consider to set up our own ethics committee …..working in pairs, one person with dementia, one academic. I usually relish this kind of brain work. But this time I found this head blowing just to understand what I had to do…….
I understood the words in the question and understood the words on the flip chart for each section but my brain couldn’t put the two together. I couldn’t connect the 2. I could see the question, I could see the heading on the flip charts where we had to put our answers, but my brain wasn’t capable of connecting them…. It felt like there were flashes in my head as the light bulbs of dementia tried to combine question with answer…..for a while only 1 lightbulb would work at a time….it felt like an electrical storm in my head…
Philly offered me the chance to go sit outside in the peace of the courtyard, but I knew if I did, I wouldn’t come back in. I needed to ride out this storm, try and settle the confusion in my head.
Conversations around the room felt confused and loud. It was so disturbing. I tried to fight the need to scream, to escape to silence, to try and focus…imagine 20 people talking directly to you all at once and trying to make sense of what’s happening, trying to pick out one and them all becoming confused…..that’s what it felt like, even though I only had one person talking to me….or standing in the middle of the motorway trying to dodge the high speed cars……
As the day went on, the light bulbs, one by one, began to stabilise…the electric storm coming to an end, the flickering becoming less, slower and gradually I was able to connect questions with answers…not quite as usual, but I was getting there, able to contribute in some small way. It felt like I was being taken out of normality and into MY reality and the two not combining.
It was as the headaches came and went in the evening and the tell tale bruising appearing randomly on my body, that I did wonder if it had been a TIA (mini stroke)…I’ve had them before, just not like this. The medication dispersing the blood clots forming by creating bruises…..the vascular part of my dementia suddenly rearing it’s ugly head….who knows?
This may ring alarm bells in the heads of our ‘able enablers’. What they should do in these circumstances. I can’t remember if we have things in place already 🤔, but maybe having a quick check list of our wishes in order for them to avoid having to make emotional decisions would help? For example, them knowing my RESPect form is always in the front of my haversack. Not sure how practical this would all be but maybe worthy of discussion. The fact that I would NEVER want to be admitted to hospital….although I think I’ve said this often enough 😂. So difficult for them when placed in that position.
Some may say, Why didn’t I seek medical help?…..simply, because I rarely do. I feel medics know little about my dementia and I understand it best. I didn’t want to put those around me in a difficult situation. No way would I have gone to a hospital, as living alone, who knows when I would have been allowed to escape. I much prefer to deal with it myself, to ride the storm….
After all…the medical world seems to know soooo little about this most complex organ in the body….
I’m sat here waiting…..waiting for 11am to arrive….sat with dread in the pit of my stomach yet trying to muster a fight…..
It goes against all I stand for to concentrate on the negative, but when the assessor arrives, that’s what I have to do….
The first time I applied for Personal Indepence Payment, some 5 years ago, I had someone who understood. I was naïve, it was a totally alien experience. But the person listened. I showed her the maps and photos it had taken me to get to the meeting. She took note of the enormous effort I’d gone to and I was assessed as in need of PIP to remain independent.
But the reassessment 18 months later, was a different experience. It was demoralising, Because of the positive first experience, I went alone once more, but the reaction was so different. I had the payment taken away from me. I appealed and the process that followed was even more shocking. The Appeal deemed “I was getting better’….if only. They said I could do things I clearly couldn’t and quoted my ability to speak in public for the Alzheimer’s Society was one reason it should be taken away.
My MP was asked to support me but he wrote back stating the benefit wasn’t meant for people like me…..😔 Like so many, he looked at the outward facing me and failed to see the inward me, as a person with dementia…
I was so distressed, so demoralised, so depressed at the time back then. The stress it had caused me and my daughters led me to make the decision that I wouldn’t go to Tribunal – probably just what they wanted. But they got their wish, I just couldn’t do it any more.
In my mind the system was broken. As I said in my blog back then:
“Feels like I’m being penalised for trying to remain independent and out of the system – maybe I’ll give up everything and become a burden to the state, then I’ll meet their criteria……”
Well, this time, it’s the principle that’s the reason for me going through this trauma again. The local council have said I should have been entitled to be exempt from Council tax for years, but sadly I need to be in receipt of a benefit to qualify, PIP being one benefit….it seems crazy that I have to apply for one benefit to be entitled to exemption when my GP would happily write a letter.
Anyway back to this time……My daughter had to complete the form as I can no longer write legibly consistently. The whole process of having to think negatively just isn’t normal for me. It’s times like this when I wish I could switch to being a glass half empty person. Just the thinking negatively makes me feel sad. Having to concentrate throughout each question, on what I can’t do…..
I realise they have to know the extent of the effect of the dementia, but couldn’t they phrase it in a different way? Couldn’t they find out the extent to which you put strategies in place to cope – this would show them the lengths you have to go to simply to survive each day……😔
Gemma sent me each question by email, so it wouldn’t be too overwhelming; I responded and she added bits she thought I’d missed. It felt like it took us weeks. We had to ask for an extension as they give you a deadline.
The first appointment they sent us was the day I was going on my mini adventure so Gemma had to ring and cancel. She said they were unhelpful and unpleasant, after all we’re not suppose to have a life – not that she mentioned where I was heading as they would have looked at it at face value and immediately struck me off! If we’d have cancelled this second time that would have been it – 2 cancellations and out….but luckily we were both free.
So yesterday, Gemma arrived just before 11. I’d already started tidying and then thought, “What am I doing!”. I’ve never been a messy person ever, so they will always see a tidy house no matter how long it is since I noticed it needs tidying. But I hate strangers coming into my house anyway now, I feel vulnerable and suspicious. Today even more so.
We reminded each other to think the opposite to what we normally do…..where Gemma could speak openly for me as that’s what they want….🙈….how I should concentrate on what I can’t do 🤯..
“It’s an invasion of your well being” as Gemma quite rightly said……
Remembering that they were due to appear between 11 and 1….we sat and chatted…..and chatted and sat……1pm arrived and no sign. So Gemma rang, explained that no one had bothered to show up………….she was told the healthcare persons manager would ring her back…..no clue as to when…….
The warning on their letter clearly shows that if I’d have failed to be there then my claim would have ended……
Seems like one rule for them and one rule for us, sat there getting more anxious by the minute, waiting for them.
To be fair, the manager rang back within 30 minutes and said how the health professional was not available but hadn’t informed anyone…..how can a ‘caring professional’ do that? AND how can a system not have something in place to check in on these people first thing regarding their workload, especially when it’s a common occurrence as many playmates have spoken of them not turning up….and especially when they’re visiting vulnerable people 🤦♀️
If Gemma had been rung in the morning and explained why the appointment had been cancelled, it would have been acceptable …annoying but acceptable. But to have the tension and anxiety building during the 2 hour slot they’d given us, waiting when ‘waiting’ is something I find hard at the best of times….well simply inhumane..
The individual on the phone could not apologise enough and it’s the first time anyone has been decent on the phone, as all the others have been quite rude……
But what about the person before me who they’d been due to visit, are they still sat there waiting with no one to ring for them? and the person after me….what if those people are desperate for the money and have no advocate.
I was lucky, I had Gemma with me to hug when the stress turned to tears – not everyone is as lucky as me.
It just reflects the whole system as totally broken, a sham, not caring……it should be a caring process, about finding out who needs support, not this confrontational system we have right now….it’s inhumane to dump all this on people who are already going through the crap of dementia or any other condition….
The appointment they gave Gemma over the phone is in a months time….a month of more waiting and then another day of stress and anxiety….how can this be seen as a ‘caring’ system……
The weekend had been one of 2 halves…..Saturday, getting everything done before the storm arrived in case of power cuts and Sunday watching the storm develop…..
I’d done so much brain work on Saturday, planning my week, booking future train tickets, that by Sunday all I wanted to do was snuggle….I couldn’t think what to do about Monday….how to work out a plan B, so I did just snuggle, doing nothing in particular …
Before I went to bed Sunday night I did think to set alarms to check the trains were running as I was on the first train of the day and the taxi was due at 05.45…..an alert came through from the trains saying they were all running on time……well they were at 02.30…….🙄…..maybe that’s when it all went wrong, after all, it was me travelling…….
The stood by the window looking out for the taxi lights, being entertained by the owl in the paddock across the road hooting away in the morning dark…scanning my eyes for sight of it’s eyes or flight, but it remained hidden out of view, teasing me with it’s twitterwoos …..
I suddenly realised the taxi was late, pressed my phone to ring the number ( as they recognise my number, no need for explanation) and the voice at the other end confirmed my worse fears of the driver having been held up at the previous address…🙄…he wouldn’t be there in time to get me to the station😳…so would have to take me to Brough furher down the line to pick it up there🤯….not a good start but nothing I could do….
He eventually arrived, not someone I’d seen before. He explained the woman before me, going for the same train as me, wasn’t even up when he’d arrived🤦♀️…..he was due to Have finished half an hour ago, the reason why I’d never seen him was because he was a night time driver…. but had been asked to take me to Brough 🙏…..
Now taxi drivers always take the country roads to Brough and my little brain immediately thought, ‘was this a wise decision after storm Ciara….🤔….but he must know what he’s doing…🤪…..well to say it was like traversing a dirt track was probably an understatement….so much debris to navigate, fallen trees to swerve around and then a huge snow storm decided to add to the complications!….I simply held on tight….🙈……when we finally got to the station, I asked for my receipt, as usual, expecting it to be 3 times as much as usual, and he said…
“The office said this one is one the house, no charge…”….bless……..
I saw the waiting room was crammed with people….now this is a little station in the middle of nowhere but because all the trains stop here, has a sense of it’s own impotance….I saw the reason why so many people, as I squeezed myself inside out of the pouring snow/rain…
Cancellations and Delays…..😳
This wasn’t a good start to my day but impossible to change my mind stuck in the middle of nowhere with no way of getting home again. I just had to sit it out with everyone else….turns out it wasn’t due to the previous days storm but to a broken down train blocking the line 🙄……thankfully ours arrived eventually whereas others were cancelled…..
So here I am typing this on the train now….
I was heading to London for meetings at Dementia UK, the people that are responsible for the wonderful Admiral Nurses, specialists in dementia. Dementia UK IS Admiral Nurses…..The 2 phrases are often thought of separate but they are very much together……They are the only dementia charity who train specialists nurses, so, to me, more knowledgeable, and much needed in every area. At the moment they are a post code lottery, just like most support for people with dementia….but they have a wonderful helpline staffed by the qualified nurses too…you can find out more here along with their helpline number at the top right hand side…
I was due to be at the first meeting in the morning to discuss the Strategic plan for the next 5 years and another in the afternoon, about how we could help publicise and promote the need for Admiral Nurses, but something told me to go back early …🕵️🧚⚗️…….I would see how things were looking……..
It was dark when we left but as the world started to appear the devastation caused yesterday became very apparent. The storm may have swept through but in it’s wake had left flooded landscapes all around, hard to tell where rivers end and land begins…..
It was still breezy outside. I could tell by the way the train was buffeted in the wind and the draft going through the carriage 😳😱🙈
Anyway we eventually got to London, only a few minutes late! Think we must have had a tail wind blowing us down…….but we got there. I made my way to Aldgate where Toby Williamson, the project manager for the ‘Lived experience Panel’ would meet us…..
The old alongside the new in London….
It turned out that Toby was just meeting me! as others couldn’t make it for one reason or another, so I didn’t get my hug from playmate George.
The meeting was being held at Whitechapel Art Gallery and as we walked in we had a sneak preview of the exhibition starting that day……beautiful………we went into the room to be met by Hilda Hayo, and Paul Edwards……so I did get hugs….also there was a Twitter pal who I hadn’t met before, Sarah Russell who now works for Dementia UK as a practice facilitator for the charity.
Paul, Director of Clinical Services, welcomed us to the strategic workshop. Obviously I can’t type about the discussion, but it was all about deciding how to stake their claim in the health field about the value of their services…..Me and Toby there were representing LEAP (lived experience panel)…..amongst the meeting were Trustees, Comms people, fundraising, business development, HR, and many others…..
It’s rare to have so many people from different teams together, but it was all about how all teams can work together for the next 5 years, but today we were focusing on Year 1….
Sarah Richardson, responsible for the strategy led the day…..
Charities often have to think of the social and political climate and how it might impact on their plans….no more so than now….
The uniqueness of Admiral Nurses lies in their expertise in caring for people with dementia. I’d like to think that my daughters would have access to an Admiral nurse further down the line. Someone to support them, to advise them, to simply be there. At the moment they don’t exist in my area and it’s a post code lottery from county to county, but one thing is for sure….they are a NEED not a luxury…..
We sat round our tables and had an hour to discuss the different elements for the first year.
The lovely Suzy Webster, from the LEAP group had arrived by then so we focussed mainly on embedding the LEAP group into the organisation and what the Opportunities, Risks, Challenges and Resource issues for doing this were…..
We had a wonderful discussion and wonderful feedback session and the phrase of the day went to Twitterpal Sarah Russell, who called members of LEAP, those with lived experience as having:
“Practical Wisdom”…..a wonderful line to end on…….
Sarah, Toby, Suzy and me…
I decided not to stay for the afternoon workshop as the trains were all in the wrong place after yesterdays storm and liable to cancellations. I wouldn’t have got home until 9, which would have been ok if everything was normal but I’d taken a peek part way through the morning and noticed the first train of the afternoon had been cancelled so decided to call it a day.
The problem was, I was booked on the 17.33 train, so wasn’t sure if they’d accept me on an earlier one. I got to the station and found a smiley person who might be able to help and she took me to customer services. They then phoned through to someone, who came within minutes and escorted me to the next train, told the guard I could travel and found me a seat……..wonderful…..kindness really does cost nothing………AND it meant I would get home by 6……..❤️…soooo glad I made that decision to leave early as heavy snow started to fall as we ventured north…..😳..
Todays blog is just about some up and coming events That might interest some of you…I love it when people come up to me at these and say they read my blog as it makes people more real and I can than them personally for taking the trouble…..
The first is at York Festival. They’ve kindly invited me back again! Last year the lovely Jonathan Cowan from radio York was the chair, but this year I have the equally lovely ‘able enabler’ Anna Harrison! She also works for York Dementia Action alliance and they have generously supported my event.
I’m there March 25th 2-3.30
It does say I’m an Ambassador for the Alzheimers Society, which I’m not anymore, as I stepped down from that quite a while ago due to many things..…
I am hoping York won’t be fed up of me and they’ll be enough people who havnt seen me who will come! More details here on their web site:
The second is across the border into Lancashire at the Words Weekend at Salford. The Lowry building at Salford Quays is the setting for this weekend of words and I’m there Friday 27th March
The final piece of self promotion (🙄🥴) is my double act with Cathryn Hart. Our workshops for the Recovery College have been growing ever since we started then a couple of years ago. We’ve run them in Hull, Beverley and Market Weighton but this time we’re heading up to the coast to Bridlington. We’re not sure if they’ll be an audience there for us, but we don’t know ‘til we try! we always try and make this workshop as relaxed as possible and enable people to share ideas and stories, but only if they wish.
So here’s the gumf for that one…….
Living with dementia and things you can do to help…….
Tues 7 April 2020, 10.30am-12.30pm – North Bridlington Library
To book your place please contact the Humber Teaching NHS Foundation Trust Recovery & Wellbeing College on Tel: 01482 389124 or Email: hnf-tr.RecoveryCollege@nhs.net
”All are welcome (including healthcare professionals or those with dementia in their lives) to this workshop with Wendy Mitchell, author of Sunday Times Bestseller Somebody I Used To Know, who also lives with dementia, and a member of our research team. This workshop explores ways people with dementia can live well and be better supported and how they, and those who support them (families, friends, volunteers and healthcare staff), can help contribute to improvements in healthcare, treatment and support. People report this helps them feel valued and gives them a sense of purpose and hope for the future. Discussion will be encouraged to share good ideas for living as well as possible with dementia, which means everyone can take away ideas to help them day to day. This workshop will be mostly informal and you can get involved as much or as little as you wish.”
Maybe I’ll meet you at one of these……..that would make my day 😊
I’m here sat with Billy typing away. It feels so calm in his presence after what’s been a roller coaster break. I adore the run up to Christmas and Christmas Day itself but then my mood drops as the quiet begins and festive decorations look out of place, lonely and the magic of anticipation having left them….
I trundled in the dark early morning, thinking he’d want to go out but Billy thought it was more snug inside sat in his Christmas box…
The village feels so safe even in the early morning. I have my light on my stick shining a path through the darkness
Even a shadow appearing at the side of me didn’t spook me as I heard the panting of the faithful dog taking its owner for a walk…
This time of year is my least favourite and double edged. The joy and expectancy of Christmas followed by an uneasy lull, with decorations and lights suddenly looking out of place and wrong. The confusion everyone experiences of not quite knowing what day of the week it is – welcome to our world…….is more intense…
My girls often use to go to their dads Boxing Day, so that’s when my decorations always came down, Christmas over, so I suppose that feelings lingers on now. My heart use to break as they left and silence filled the house. But since dementia it’s become a different uneasiness, a sadness like no other.
I set out with all good intentions of ‘doing’ , of not letting it lull me into closing my eyes, but it never works and didn’t this time. That inability to help your daughters with the support they need and feeling that sometimes the support is one way and not the way I want it to be…
I’ve said this often before, that ‘doing’ is my way of keeping dementia at bay. I’m a great believer in keeping my brain active through all the events, talks and research participation. All of us who remain involved remain capable for longer. As soon as people stop doing those things and stretching themselves they decline far quicker. Dementia seeping in and clouding you’re thoughts.
With dementia, if you’re encouraged ‘to do’ that ‘doing’ helps fight dementia for that day. I’m not saying it’s easy and the Christmas break is a classic example for me.
There’s nothing more comforting with dementia than sitting with your eyes closed but that’s dementia lulling you into that false sense of comfort. But when I just sit, and close my eyes, within no time at all I can feel dementia seeping into my brain. I always say I’d rather die of exhaustion than dementia and it always makes me sad to see people just sitting for any length of time. But over the last 2 weeks I’ve found great comfort in doing just that, snug with my eyes closed. I’ve forced myself to go out for a trundle each day just because, otherwise I’d just close my eyes listening to the silence as it’s soooo nice.
I don’t blog as I’ve nothing to say. It would probably be sad blogs after Christmas and don’t want to bring everyone else down. No talks to type so instead poetry from my trundles have kept me typing. I really need a dictaphone or something as the poems pop into my head as I’m trundling along and when I get home and try and type them they come out all different as the moment has gone….but at least they’ve kept me typing and I’ve had some lovely trundles…..
I’m afraid Twitterworld has had to put up with me posting them on there..another world that goes quieter over the holidays….but Twitterpals have kept me company, new and old.
I say ‘no talks’, I did in fact have 2 to write but words wouldn’t come into my head. The fog hiding their existence as the routine of writing them had gone. It’s actually fortunate that it’s a slow start as I couldn’t cope going from zero to busy.
Over Christmas I could feel my brain becoming more and more gluey as dementia rubbed its hands in glee at my idleness. I find it hard to motivate myself as doing nothing becomes the norm and is wonderful. I tried drawing again but that was a disaster with shapes, once easy, were now difficult to master, so that idea was binned. Instead the faithful scrabble and solitaire repeatedly done over and over without becoming bored took its place along with the peace of closing my eyes….enjoying closing my eyes far too much without the benefit of a gratifying slumber…
Am I feeling sorry for myself? Probably….but now I need consistency and routine 365 days a year and the Christmas break just erases that and unsettles me……don’t get me wrong, I had the most magical Christmas; enjoying Stuart’s vegan delights, the company of Sarah, Gemma, Stuart, and of course Billy, going for walks, watching films but how I long to see a full calendar again….then I can worry about being too busy…..🙄……and today I have my first talk to give so hopefully tomorrow’s blog will be more upbeat…..
And Billy is there for me if I need reminding to enjoy the moment…..
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……..
Next time if you come out of Kings Cross, look up towards the right and that’s the Clock Tower above St Pancras …
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.
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…
