All posts by wendy7713

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

I needed to take a trundle ….poem

You know how sometimes you just need to escape the 4 walls and breathe in fresh air? Well one of those dayS was last Sunday. I didn’t hold out much hope of a dry walk as I’d woken to fog followed by heavy rain….but then, the skies cleared and suddenly the sun decided to shine so I took the opportunity …..

I needed to take a trundle today

To breathe in some lovely fresh air

I needed to take a trundle today

To simply wander and stare

I needed to take a trundle today

After all the fog and the rain

I needed to take a trundle today

Along my village lanes……..

and when I got home……it clouded over again…🙄

 

 

The Joy of a Village Bus Trundle……..

Last Monday I woke not wanting ‘to do’….my calendar was empty and I would normally just take a trundle into town in the morning for something to do….but this quiet slow period has left me in the hands of dementia and not ‘doing’ that morning seemed a wonderful option. Someone suggested yesterday it was just the January blues…..it really isn’t. I know how debilitating depression is and the need to get help, not that help is easily found 🙄 I know the feeling of the black cloud hanging over you and how hard it is to lift yourself into life again and not something I would wish on anyone…it creates a different need to the one I’m feeling…

But this is a sense of getting slower….and slower ….and slower…not in the body but in the brain, as dementia takes up more space due to lack of a specific kind of stimulation I need….the glue becoming thicker creating less incentive ‘to do’…..

I didn’t even follow my own routine of going downstairs, after my shower, to watch Breakfast TV 😳….instead, I took my flask upstairs, snuggled after my shower and watched it on my iPad….really not like me….

I knew this was wrong and bad for me even though the weather outside was cold, windy and grey.. I knew I had to force myself to put up a fight…..

The first village bus now leaves at 09.50 from the bottom of my road. Since the timetables changed it’s affected many villagers lives. They only run every 90 minutes now, so we have a longer wait to return. It’s messed up Gp and hospital appointments for many and catching connecting buses. For some villagers it’s their lifeline to the outside world. I’ve called it “The NHS on Wheels’ in previous blogs. For some, it’s the only time they see people, it’s the only time they have conversation, it’s the only time they share laughter and sadness. So it really is more than a means to get from A to B.

Anyway, back to last Monday. I knew I needed to force myself out ‘to do’..I didn’t need anything from town, which made it harder, especially the thought of 90 minutes just wandering aimlessly around until the bus back, but then I saw a piccie on Facebook.

It featured Beverley Beck, a walk the other end of town, I’d done many years ago, up along the old Beck and back down the other side. So that stirred my glued up brain into action.

I’m so glad I did, not for the trundle to the other side of town, but for the conversation that took place on the bus….

Before the bus had even arrived I shared a chuckle at the bus stop with someone. When the bus came we climbed on board and at the end stop in the village other usual travellers boarded too. All with cheery hellos and happy chatter.

It was then one started talking about childhood toys which they still had. Back to a time when  Kapok, the material now used to stuff toys, didn’t exist. Instead they chatted about grandmas making stuffed handmade toys with old stockings, and others spoke of the sawdust and straw inside theirs. They all spoke of how they keep them in a prominent position, much to the displeasure of family, who see them as tatty old relics that need binning. Their faces lit up at the memories of receiving them, of how they’ve always been there for a cuddle when no one else was, how they believe, when they’re dead and buried, how family will immediately discard them. But for now, they’re going nowhere.

They’re faces, so animated, staring with a sparkle in their eyes and reliving the past in that short trundle made their day. It made mine too as I shared mine with them..there’s not much I like to remember from the past, but if someone moved Ted from my chest of drawers, it would be like taking away that chink of happiness….

I did go for my trundle down to the Beck. It was like stepping through time and ghosts of a busy port of Beverley some 800 years ago kept me company.

An information board detailed the story of the once thriving medieval port of Beverley. The only barge barge now left being the ‘Syton’, looked after by the Beverley Barge Preservation Society…….

……..along with it’s own history.

Once serving the town Tannery which disappeared in the 70’s, this once busy strip of water became deserted. Enthusiasts restored this former working barge and it now rests peacefully alone on the Beck with only a passing duck for company…

it passed the time perfectly, and even though the weather was anything but inviting, it was a nice trundle……

 

P.s…….The driver we had on Monday retired last year, but missed the conversation and the driving of his village bus so much that he came out of retirement and is now back driving our village bus. So public transport is a necessity for all manner of reasons…….

 

 

 

 

ZOOM technology brings playmates together……..

I’ve spoken many times about how technology enables me to remain independent, well Zoom enables me to ‘meet up’ with playmates. This week on 2 such occasions …

Every Monday at 5pm, the Zommettes meet on line to put the world to rights, provide ears to listen and share laughter and sadness. There’s 10 of us, I think, including our ‘able enablers, Anna Harrison and Aimee Day. The wonder of zoom, is we don’t have to live near one another. It connects those in remote places with those in cities and towns.

We talk about absolutely everything, knowing we can trust those on the call and also, realising that within minutes of hanging up, most of us will have forgotten anyway…🙄😂🤣


My lovely Zoomettes….🥰

Aimee and Anna, our ‘able enablers’ keep us in order. Me and Agnes are usually snug in our beds, afterall, it doesn’t matter where we are or what we wear.

I could only stay 10 minutes this week as Stuart was picking me up early for my tea….but I couldn’t miss clicking the link just to say hello to those who had made it…and it’s always comforting to see playmates on screen…..

Yesterday was the second zoom of the week  for Dementia Enquirers Pioneers. This is the project where people with dementia are leading from the front on research and inviting academics through our door when we need their help. You can read more about our wonderful project here..

https://www.dementiavoices.org.uk/dementia-enquirers/

It was hosted by the Thred group from Liverpool (Transport, Health, Research, Economy with Dementia)  with the lovely Liverpudlian  Paul Hitchmough chairing and supported by his ‘able enabler, Louise Langham.

On the call were me, Philly, Louise, Paul, Mhari and Ron.

Paul, me, Mhari and Ron, all have dementia and Paul kept us all in order …..no mean feat, which he did brilliantly!

Paul and Louise filled us in on their project on Transport, how it impacts on our life with dementia. They’re well ahead of me and my playmates at Minds and Voices as they’ve organised an online questionnaire, which I’ll share when available and they’ve booked themselves trip through the 4 nations to hear from as many people with dementia as possible.

Minds and Voices havnt met for a couple of months but our project is all about Liviing alone versus living as a couple. We have decided on the questions (I think!) and plan to interview other groups.

I spoke of the difficulty in keeping up momentum when we simply forget it exists; when one meeting merges into another and we forget the smallest details and almost have to start all over again. We came up with ideas to help remedy this.

I wasn’t typing as we were on ZOOM, so any more detail has already left me, but I know we left feeling inspired, feeling we wanted to crack on and ‘do’. There’s nothing more wonderful than meeting up in person but it’s so costly so this is an alternative and allowed people to join from the Western Isles, across to the West and East and from the centre of the country……..and a virtual hug is also comforting…..

I work out ZOOM in the past, but I think it was Philly who talked me through it and gave me a practice run and now sends out a simple link for me to click on which immediately takes me to the meeting, making it straight forward.

There are 12 projects happening around the country, all led by people with dementia, all the research topics chosen by people with dementia. We have until May to complete and then hope to write our own publications and get the media involved as this really is a landmark project showing what people with dementia CAN do with the right support and encouragement……..

Hot off the Press……..!!

Today sees a major announcement by my favourite people…….

“Innovations in Dementia celebrates £700k National Lottery grant to help people with dementia have a say” 👏👏🙌🙌

It’s the launch of their Dementia Voices Programme and will include a continuation of funding for DEEP and Dementia Diaries…..both of which play an enormous part in my life…..

It was in the early days of my diagnosis that I came across Innovations. It was founded by Rachael Litherland and Nada Savitch who wanted ‘to inspire people to think differently about dementia.’ I first met Nada at the York Women’s Conference that appears in my book and that conference changed my thinking and took me into a whole new wonderful world.

Since that day, that day when I was inspired to think differently about dementia, they have enabled me and many others to take part in all kinds of events and campaigns. More importantly they have allowed people with dementia to meet each other and become part of the wonderful family that is the DEEP Network. Pre dementia, I was never one for joining groups, but when I was diagnosed I had this urge to meet others going through what I was going through. The moment I stepped through that door and saw ordinary people, just like me, was a life changing moment. That’s why Minds and Voices is so important to me. We’re just there for one another, to share ideas, to support one another through good and bad.  We can walk in feeling down and leave with a smile on our faces.

We’re part of the DEEP Network, as are over hundred groups now up and down the country. It makes you feel like part of a family, a different family, a special family. You can see if there’s a group near you, or just find out more, on their web site and if run or belong to a peer support group, please think of joining us….

https://www.dementiavoices.org.uk/

And through Dementia Diaries they have given me and my playmates a way to communicate with the wider world…..

You can listen to me reading this blog on Dementia Diaries …

https://dementiadiaries.org/entry/13556/wendy-celebrates-the-launch-of-the-dementia-voices-initiative

Amazingly there are only 6 people in this not-for-profit organisation, Rachael, Steve, Philly, Damian, Rachel and Kate. You would think there’s a whole army with the amount of stuff they do!…but those 6 people work tirelessly enabling me and all my playmates and together we make up this giant army doing our very best to bring about change and continue to inspire others entering this alien world to do the same….

Funding is always an issue for many organisations so I’m so thrilled the National Lottery has seen fit to back this project with the £700,000 grant. Yes they are a small organisation, but have an understanding of our needs far bigger than their size. They are the only people I trust to support me because I know they ‘get it’. They are willing to listen and learn continually. They never forget why they do what they do.

Me and my playmates would be lost without the work of Innovations. This money will enable them to continue, in their ever innovative way, to help people with dementia inspire each other and inspire others to think about dementia differently…..

This news has made made my day……..and this lovely piccie of the 6 mashed together by Rachael shows what a smiley lot they are – our ‘able enablers’ for all to see……from left to right, Rachel, Damian, Philly, Kate, Steve and Rachael…..although we must get a new piccie of Steve so he looks less scary and less like a convict!!

 

The Changing Face of My Dementia……..

I’ve written many times about the need to keep ‘doing’ with dementia. You stop, and within a short amount of time, you’ve forgotten how to do that simple task……for me, at the moment it takes a couple of weeks of not doing something before I start to get in a pickle…

That’s why the Christmas break always comes with a health warning as routine goes out of the window…..

I thought I’d covered most angles this year……typing poetry, trundles round the village taking piccies……but I hadn’t banked on dementia sending me a curved ball…..

Of course, I hadn’t travelled on a train for a while, or booked a cab to pick me up…..

So when my keyboard on my iPad stopped working, I had to go to the Apple store in Leeds….I booked the cab as usual, no problem there…..but when we got to the station it came as a huge surprise that I had to pay her!!😱🙈🙈……I usually have the right money in my glove already sorted but I had to faff about trying to find my purse……even the taxi driver commented how I wasn’t as organised as usual……

The train times have also changed and it was so hard to work out what time train to get back and work out which village bus I would get….the numbers just jumbled in my head…I’d also forgotten the existence of my sunflower lanyard that might have saved me the hassle of explanation when I needed help…🙄

Once I got back home with the keyboard, it also took a while to get use to…..I’d been without it for more or less a fortnight so had been using the keyboard on the screen…slowly…. So when I fitted the new one I just stared for a while thinking ‘ok, so what’s next’….then luckily just typing brought it back to me, but it took a while before all the words made sense and it was natural again…so many of the keys seemed to be in a different place 😂🤣

One thing I’ve never done in my life before is gone to bed and left the TV still on and entertaining itself…..but that also happened the other night. I don’t sleep much and could hear a TV somewhere but assumed it was next doors humming away. Once 2am came it was still rambling away and I thought next door had gone to sleep sat in front of it….it was until I got up for the loo that the talking became a tad louder 😳. I hung over the banister and sure enough,,,it was my TV!!!!!…I can only think that I’d gone out of routine of what I usually do l before I go up to bed, got distracted in some way, and simply left it talking to itself..🙈

Changing abilities comes hard, especially when you notice them happening. Many don’t notice, of course, or they don’t intuitively associate it with their dementia. The consequences of not sticking to ‘doing’ are quite frightening as you don’t even know the ability has become detached from you until you try and do it again…….it’s a fine balance and juggling act that we have to play when living with dementia. Some are aware of the game, some sadly aren’t…..even I become unaware sometimes……..and other times strange things occur without me even realising ….

I’ve still another quiet 2 weeks to get through before my calendar really comes alive, so I just need to find ways to ‘keep doing’ or getting back into the swing of things will be harder….

 

 

 

I needed to sea the sea today…..Poem

Over  the Christmas period, it was poetry that kept me typing. Twitterworld were the recipients each day but thought I’d share this one during the quiet January of the mo….it was a glorious day and I decided suddenly to take a trundle to the east coast. It was beautifully deserted and peaceful and just what I needed…..a nice way to end the week…

I needed to see the sea today
To hear the lapping waves
I needed to smell the fresh sea air
To feel sunshine’s rays

I needed to see the sea today
To feel the calmness of the waves
So i trundled alone on a deserted train
And soaked up the silent sea air

Asked to comment a TV programme……..

At the beginning of December I had an email from the Spectator magazine, asking if I would comment on a review one of their journalists had written about the TV screening of the fictional book Elizabeth is Missing, where the wonderful Glenda Jackson played the lead part of Maud, who was living with dementia.

Here’s the link to the article for you to read.

https://www.spectator.co.uk/2019/12/why-on-earth-did-glenda-jackson-give-up-acting-bbc1s-elizabeth-is-missing-reviewed/

Sadly my response came out in the Christmas issue but was behind a paywall so I can’t provide the link. They did cut my response down to fit the space, as often happens  but here it is in its entirety…

I’m writing in response the review of Elizabeth is Missing, ‘Return to Glenda’ by James Walton.

I totally agreed with Waltons comments on the absent years of Glenda Jackson from the theatre but also admire her for fulfilling her passion and belief she could make a change in the political world.

It didn’t surprise me that Jackson chose this role as her comeback after more than 20 years away as Dementia is one of the biggest social challenges this country and indeed the world faces. The social care crisis is one that politicians have avoided for too long and the one that will not magically disappear as the population ages.

However, now may be the time to announce my vested interest in the piece. Sadly I’m now unable to read the book or follow the TV programme as I too have dementia, so can’t comment on Waltons view of the programme itself. I’m just happy whenever dementia get’s an airing on national TV simply to get people talking about dementia.

Dementia is certainly a bummer of a diagnosis and it can strip away your self esteem, your memories, your abilities. But we never forget how people make us feel. We forget the detail in the blink of an eye, but emotions remain strongly embedded as it’s a different part of our brain that’s often left in tact. I’ve already apologised to my daughters if and when I forget who they are, but tell them to remember that I’ll always love them.

You may be wondering how I can possibly type so eloquently; type these very words when I have dementia?

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. We’re all different in the cells it affects.

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. I could never in a millions years simply speak these words. Typing is my escape from dementia and I watch my fingers in awe sometimes.

However I never dwell on what I can’t do. I never dwell on my losses, we have no control over either.  Personality has such a big part to play in how we cope with a diagnosis and I’m lucky as I’ve always been a glass half full person and turn negative experiences into positives because that’s what helps me cope. When the fog descends and dementia takes hold I tell myself ‘it’s not me, it’s this cruel disease’ and I’ll just sit quietly and wait for the world to make sense once more.

Clinicians focus on ‘There’s nothing we can do for you” instead of focusing on what we still CAN so.  That makes it even more important for those around us to believe in what we can do and support us to continue living. I have two amazing daughters, Sarah and Gemma, who enable me rather than protect me. The biggest thing dementia has taught is is the power of talking so when dementia throws a challenge, we talk and try and find a solution. My mantra is ‘There’s always a way’, we just need the kindness and support of others to help find that way out of the situation.

Dementia may be terminal, but then so is life, so I enjoy each and every moment, the simple things in life are now more precious, time has taken on a whole new meaning and if today is a bad day…well tomorrow may be better.

Wendy Mitchell

Author of Somebody I Used to Know

 

 

Filming with the two Liz’s…..

Yesterday I had a home visit from 2 Liz’s from Hull University……Liz Walker from from Hull York Medical School had asked if I was free to deliver a session to clinicians in February but I wasn’t so they asked if they could video me instead!

The medical school is introducing a new module looking at implementing treatments and care with evidence of direct benefit, for people living with advanced and chronic conditions. Liz believes It’s really important, in this context, to hear the voices of people living with health conditions and to understand the role they can play in research – perfect ….

I usually meet people in my village office, aka the local coffee shop 😂 but because they wanted to video, I agreed to them coming to my house. They’d both attended my graduation at Hull so I did know them…

Anyway, we decided on yesterday at 10am. A dull grey day greeted me as I opened my curtains….but the back of the house offered glimpses of a hopeful day

So I joked that I would need to change rooms in order to see the hopeful side..😂🤣😂

Any way Liz and Liz arrived as planned and then began much hilarity setting up. Liz Price had come as ‘technical support ‘ and we all chuckled finding the right way to set up a iPhone so it would be stable. Liz then came up with the genius idea of resting it on her open iPad and hey presto, we had a recording studio. All that was missing was the clapper board 🤣😂

It worked really well. Liz W had sent me the questions ahead of time so I’d been able to type my answers. Leaving it to chance means I miss out so much of what I want to say and I end up stuttering and faltering my way through…..but this way everything was in front of me.

They were there to ask about the value of involving people like me in research, about the challenges, payment options, and my experience of working with health care professionals and academics…etc

Part of my response about the challenges I’ve found was:

The challenges often don’t lie with us but with the researchers, to think carefully about our possible needs and react in a sensitive way.”

We did it in one take and all went wonderfully. They are such nice people and their values and beliefs on inclusion are perfect…..and they kindly agreed to a piccie

My video will be played to students in February……..

I then asked them a big favour….whether they were going via Beverley on the way to the Uni as I’d also promised to go to York if we finished early enough. Our able enabler, Anna Harrison, was running the stall on York market today and I said I would join her for a little while if I could get there. Well they did give me a lift and I did get there on what turned out to be a miserable cold blowy day, especially as we crossed the Wolds with the rain heaving down…but the bus trundle was still lovely, and the rain didn’t start until I’d taken this piccie as we passed the Westwood…..

……. I had nothing better to do and it was nice to get a New Years hug from Anna……..

I arrived and after hugs and a catch up Anna went off to get warm and a cuppa. It was a cold breezy day but nice watching the world go by. As Anna returned then playmates Eddy and Charlie each passed by on their way to the shops which was lovely. Our stall was promoting Minds and Voices, DEEP, Dementia Diaries, Healthwatch and all dementia related services in York, so leaflets galore, which did have to keep being saved from gusts of wind…🙄

Me and Anna both did the Skydive last year and are looking for our next challenge and she was delving into Google for inspiration. I did see my local hospice are doing abseiling down the tallest building in Hull but the vista around didn’t look that inspiring…….we’ll keep looking….

We didn’t have many visitors to our stall on this cold January day but the ones we did were well worth getting cold for……..and it gave me something to do……..😊

 

New Induction, new format…..

So yesterday, was my first trundle of the year. It was lovely to get to some routine although I do admit I need to go slow as I couldn’t possibly cope with one after another events at the mo……even though I would love to…

Each month I’ve delivered a session at the Induction of all Mental Health Trust staff with someone from the research team, but now they’ve decided to changed the format.

Instead of me having a few minutes at the end of a session, I now have 30 mins to talk on my own. Most of the learning is done online now but they’ve decided to keep a few bits face to face and wanted me to be included as that…….bonus!

Emma from the reasearch team picked me up and took me to the Trust headquarters and we had time to go upstairs and say hello to those who had started back that day….

It was a lovely drive there….

And we caught up on all things Christmas etc before arriving ……

Jade, from the research team, would be taking me back home so we sat in her office and I typed away……

Me and Emma went over to the lecture theatre

and were soon joined by Mandy, Head of patient and carer experience.  Mandy was up before me. She was talking about the importance of patient involvement in every department and not forgetting the carer when thinking about the patient experience as they know the patient better than anyone

There were about 50 new staff at the Induction. In the morning there’d  been a Market place including the research team. They’ve reduced the amount of power point presentations they have to sit through but kept the important ones 😊 but I was still going to sing the praises of the research team and the part other people must play…

Many  showed a video explaining how the patient and carer voice can improve the care thy give in Humber Trust…..”learning by listening”…..wonderful……

Staff attitudes have changed since working with patients and carers….to see both sides of the story. Changing a culture is always a mammoth task but the management team here are committed to listening to those who have the most important knowledge…..patients and carers….

There are so many ways that patients and carers can become involved in the Humber Trust, including forums, Recovery college, sharing storries, recruitment and research…….

Me up next to tell my story and then promote research…..30 mins to tell my story, promote research and the importance of language and body language …..I spoke about hyperacusis and told them to  …..

“……remember this sensitivity to noise issue in the hospital setting as clashes of metal on metal, slamming of doors can be very disturbing….”

The time was up in a flash. It seemed to go down well as we walked out…..and just time for a piccie of me and Mandy

I thought the Induction I’d always attended was for all Humber NHS staff but then my daughter Sarah started her new nurse job yesterday and we realised she was elsewhere for her Induction. It then clicked that the induction I attend is for the Mental Health Trust……Sarah commented how no one with patient experience spoke at her Induction …very bad  as they don’t realise what they’re missing in knowledge for their new starters, especially the medical staff, nurses and doctors….just saying……

p.s……Sarah later told me that a great video was shown of a patient so all forgiven….🙄

First blog of 2020……

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…..