Listen to the Silence…….Poem….

Although it was a wonderful 24hrs at Woodbrooke, with lovely playmates in beautiful surroundings, the inevitability of a banging head was impossible to avoid. All the thinking, listening and talking takes it’s toll and I find it exhausting, even though I wouldn’t miss it.
So today’s blog is simply a poem about the evening, once I got home….

Listen to the silence
Let the brain relax
The pressure release
And feel it breathe a sigh of relief

The effort of listening
The effort of thinking
The effort of talking
Is so hard

So now relax
Close your eyes
And just listen to the silence
Until peace takes over

In my sleep, wake, sleep wake state,
The early hours fall totally silent
As nature too takes it’s rest
The first sound to be heard?
My white owl gently announcing its presence

What a beautiful sound to keep me company……
You can hear the world outside
Regaining its composure
Just like my brain
Ready for the start of another day….

24 Hours at Woodbrooke….

So back to the beginning of our Dementia Diaries meet up  ……..

We listened to Professor Amanda Lazar from America, talk about her research project. How can technology be designed to be more useful for people with dementia? She was here to find out what we get out of it and how the design of technology could be better for people with dementia.

It was then Rachel’s turn to ask us about our experience of dementia diaries….

We said that Dementia diaries existence needed to be available more widespread. People mentioned some amazing ideas…….Howard described it:
“As a window on what might be – virtual peer support.”
Wayne said it’s a ‘safe outlet to vent’….
It’s a way to raise issues that people might not normally talk about, e.g incontience, death etc.

Dory said the best thing about the diaries, ‘is the huge variety of topics’ people talk about.

Cuppa tea time, thankfully, as my head was exploding……so I was very unsociable and went back to the room to be on my lonesome for a while.

After a cuppa we spoke about how it felt when we joined and how we feel when we make a recording. Sadly, because I can’t use the phone anymore, the process makes me feel sad as it’s a reminder I can’t use the phone. I send Philly the transcript and she records it for me.
I suppose that’s why I rarely do many anymore…..quite sad for me and made me feel a fraud for actually being at the gathering……however, over a cuppa Dory spoke about her use of the technology, Alexa and it’s many uses and suddenly we thought how Alexa might be able to dial the number for me so I just have to speak……mmmm, there’s always a way. Must look into it more.

We spoke of how we can promote more people to record diaries.
We ended with a session around feelings – what makes us decide to record, how do you feel while doing it, how do you feel afterwards?

We asked what measures are in place for Rachel when listening to them? As some can be very sad, distressing and worrying. I said how the diaries is a success because of Rachel and the type of person she is. We trust Rachel, we know how she’ll look out for us intuitively because of the her character. If someone was in the role simply as an IT person to upload and promote, it wouldn’t give us the same feeling of being valued and trusted.

I said what a valuable historic web site it was and will become. Nothing like this has existed before, so it’s a wonderful legacy.

We finished for the day, all very tired, but having shared lots of ideas. We had a quiet hour before supper to chill and settle into our rooms.
After supper I walked down with Philly to light our evening campfire….and soon everyone joined us for a lovely evening of chatter and laughter before I left them all having a singsong round the fire to finish off the evening…….

And so to the final morning session before our trundle home. Philly sorted out people’s expenses, me and Howard sat with Prof Amanda and answered her research questions, then cups of tea in situ and we were off…….

Rachel spoke of the editing decisions she has to make…..there has to be a trust in Rachel that she will make decisions for the right reason, and we do.
We then heard from OT, Fran Hamilton and her role as transcriber and how much she enjoys transcribing and how much they teach her. Scripted or not, all are equally important. I always write something before I speak, otherwise I would waste time rambling instead of saying what I need to say. That’s my coping strategy. I speak very differently when I don’t have a script, very disjointed.

After a nice cuppa tea, I went back and recorded my ‘Dear Dementia’ blog to put on Dementia Diaries, which will be on the web site in the next few days.

It was then time for Dementia Diaries ‘Live’Performance…..with Dory, Wayne and Shelagh..

They each read various diaries, emails from volunteers and from people with dementia thanking the existence and discovery of Dementia Diaries and the value they place on them. It was lovely to hear the diaries delivered this way and would be wonderful to use at many events to promote their existence and in a theatre. The ‘performance’ was so powerful with diarists reading others recordings and linking them altogether……magic……

We finished off with a final section on Opportunities to Influence………..and Philly talked us through Research, Drama and Art opportunities …….

After wrapping up and before our final lunch, we were given a luggage label to write on how we felt about the 2 days and hang on the tree outside

………mine was this and in case you can’t make it out, it says……24 hr hug…..

I compare Dementia Diaries to a Time Capsule that is buried and opened many years later. How wonderful to think that in years time that Dementia Diaries will be used as historic evidence of living with dementia now.

No one should feel alone with dementia and Dementia Diaries opens up a new community for those diagnosed, allows new learning for those wanting to know more and makes us feel valued and part of a bigger family.

I shared 24 hours with the most wonderful people in the most wonderful place.

So here’s the web site again for anyone to listen to our recordings, for anyone with dementia who would like to know how to become a diarist and for anyone with 10 minutes to spare who would like to volunteer to transcribe our recordings…

https://dementiadiaries.org/

Annual meet up of Dementia Diaries – Part 1

So yesterday so me trundling to Birmingham for an annual meet up with playmates from Dementia Diaries. As always everything had been meticulously planned and sorted by Rachel Niblock and everything sent ahead of time with step by step details……always helps.

However Birmingham New Street is my least favourite station……🙈…The trauma of navigating this maze of a station will be tempered by the outcome, if I survive of meeting lots of my friends with dementia.

The last 4 or 5 nights had been filled with nightmares about the travel bizarrely. I sleep, wake, sleep, wake all night bit would wake distressed and then fall back into the same nightmare. I lost my phone, my suitcase, my red haversack and was panicking looking for them. I never did get to New Street in my dreams, so fingers crossed as I’ve got the trial of travelling there twice this week😳

When I get to any station, I usually find getting off first helps as the people on the platform are still and you don’t yet have the swarm of movement when all the passengers start to disembark. But at New Street you have to contend with the dark narrow platforms that are often heaving with people waiting to get on. It’s dark and oppressive as the platforms are underground so no daylight to help. That’s only the start of the trauma…..you then have to find your way up to the concourse and then work out which way out is the right way out😱 I’m sure, if you look carefully you’ll find some poor soul who’s been wandering around for days trying to find the right way out
But Rachel had promised to meet me on the platform so time will tell………

Anyway, back to the start. The first day was due to start at lunch time so my journey started at 07.30 with the taxi ride to the station. He was late🙄 but contact with the office soon told me he was on his way. The first train was suitably on time, and I was happy to tap away on my iPad and snap piccies

Rachel had already txt me to say, not to worry and she would be waiting for me. This is my first journey to an event for months…..well seems like months…probably a few weeks. Bizarrely I hadn’t written out a plan of the journey😳, I’d forgotten what I needed🙈 but then realised, thankfully that Rachel had written out just that for me – a detailed plan. Thank goodness it was Rachel sorting me for my first outing………💐

I had a 7 minute turn around before my next train at Sheffield😶 but Rachel had provided me with a plan B just in case I missed it…….⭐️

As it turned out I thought I had no chance of making the connection as my train was running 7 mins late🙈 but when I got to Sheffield it turned out my connection was running 5 minutes late so I just managed to catch it – result! Never thought I’d be grateful for delays. It did mean I didn’t have a chance to look for Howard though, but Twitter came to the rescue and he joined me in my carriage.😊

Rachel met us both at the station as promised and we trundled our way to the beautiful Quaker setting of Woodbrooke…….

I couldn’t believe how many playmates there were who I hadn’t met in person before…as we had hugs and a catch up over lunch.  I finally met Twitter friend, Occupational Therapist, Fran Hamilton as Fran had come along to help and she transcribes lots of the recordings….I then had a quiet walk round the beautiful quiet grounds as my head was banging

At the start of our afternoon session we went round and simply introduced ourselves……

We been joined by Prof Amanda from Maryland USA who is doing some research and through funding has enabled us to meet here today……..so we had American flags on our tables……Lovely to see America taking an interest in Dementia Diaries ….

Part 2 of the detail tomorrow……but here’s the web site if you want to listen to some of our recordings in the meantime…all made by people with dementia….and if you’re someone with dementia who wants to add your voice, we’d love to welcome you to Dementia Diaries….you can find out more on the link below and click, ‘How can I become a diarist’ at the top or feel free to contact me.

Also if you have 10 minutes to spare anyone could volunteer to transcribe our ramblings, which would help us enormously – click on the link below and then select the appropriate link at the top of the page. The wonder of technology means you can be anywhere in the world and volunteer to transcribe😊

https://dementiadiaries.org/

A Letter to Dementia…….

I found this the other day. It was a blog I wrote a couple of years ago but felt it needed a new airing as still relevant….

Dear Dementia……..

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

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

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

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

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

My intuitive self……

Someone posted this comment on Twitter recently:

Dementia is bad, but not all bad. There is still much to be shared if we understand that our loved ones are not losing their intuitive thought skills, or their experiential selves.”

Along with this image…..

Dementia has certain given me a stronger intuitive self or maybe it’s made me look more closer at people and things in general, so that I pick up on clues more easily, I’m not sure.

I seem to know instantly whether I like someone or not, whether a situation is good or bad. I remember having this skill before, just not so fine tuned.

It’s very easy for people to take advantage of you when you have dementia. I’m not one that seeks out friends, but some people, once diagnosed, are grateful for any offer of friendship, that on the face of it seems genuine, then turns out to be a sham. A cruel trick to take advantage of their vulnerability. Some pre dementia friends abandon us all too quickly so anyone offering a new friendship is a grateful sight for some. But how cruel some can be.

It nearly happened to me when I moved house. I needed to get quotes from lots of workmen and I hadn’t realised how cruel some people could be. Maybe stupidly, I always made it known I had dementia, because I needed them to be patient and provide a specific service in a specific way. Most were kind and genuine but one workmen quoted me £5000 for a job I eventually got done for less than £1000……..My intuition took over and I knew he wasn’t a nice man even before he gave me the quote.

Other people I meet along my travels, have the same effect. Some I instantly know are nice and genuine others simply not. I can’t describe the feeling but it really is instant.

Our minds are less cluttered through necessity  of surviving dementia so maybe that leaves room for us to hone certain skills. The simplicity of our thoughts, of having to concentrate on one thing at a time, gives us more time maybe to concentrate on the moment.

The pleasure a moment of looking at a bird sitting on a beach on a tree outside my window is inexplicable……..but I’m mesmerised in that moment.

I never used to stop and simply enjoy the moment, the simple things that nature provides in abundance, if only we take a moment to look.

Maybe this makes no sense to others but it’s my ramblings for today…….

Friday Reflections……

I’m very good at appearing well, especially through my writing as that makes me happy. Even on a bad day I can appear happy on Twitter because Twitter makes me happy. Meeting people on a bad day can be stressful as I don’t want them to worry and on bad days I have that nagging feeling that people will be reluctant to see ask me to do things, feeling threatened at how I might be, not understanding that today was simply a bad day. But I wrote this on Tuesday and Tuesday  was a bad day, hence the slightly melancholy blog. It feels right that I should write about the down days. But please, I don’t want sympathy, I’m just speaking of the reality. So here it is…..

As I’m sat here waiting for August to end and the normality of September to begin, I found a half written blog lurking in my iPad with the title ‘Four Years ago Today!!’

It should have been published on the 31st July, as that was the date 4 years ago when my life stopped and stayed silent for a while as I came to terms with the diagnosis of Young Onset Dementia.

I can still feel the emptiness I felt back then, the confusion as to why me? The same thoughts that many others have gone through before me and many more since. But at the time, that feeling of loneliness, of being abandoned to the disease, no matter how illogical that may seem, was uppermost in my mind. Then that thought being overtaken by guilt of what lay ahead for my daughters. That state of limbo, long before knowledge and my resilience kicked in.

Four years ago today, I was in a period of numbness. I’d only been diagnosed for 10 days. If only I’d known then how my life would change. How so many opportunities would come my way. How new friends would be made. Would it have made that time easier? Or did I simply need to go through that process to realise there was still a life out there?

In the early days I was able to lock dementia away in a cupboard and escape without it in tow and feel on top of the world, as if a mistake had been made on diagnosis and dementia free. But such is the stealth of dementia that it would creep up behind me and remind me of its presence. Back then I was truly alone sometimes…..but not now.

Now I have dementia permanently handcuffed to me, it’s thrown away the key so won’t let go. Always a shadow walking next to me, never leaving my side.

Only me and my daughters are witness to the slow decline in all its glory. Others only see the façade I portray. When I’m with most people I’m often just happy to see them and in a happy mood, so they don’t witness the bad days. The days when dementia comes to the forefront, trying to take over. It must be hard for my daughters, as the minute I see them I’m instantly happy, such is the joy of simply being with them. But they witness what dementia is doing to me and in those moments, life must seem very unfair.

Yes today is a rubbish day, but tomorrow may be better and if not tomorrow then maybe the day after. I always cling to that thought on bad days.

But in the 4 years since diagnosis, look how much I’ve achieved. Look how my life has changed in a good way. I have to keep those thoughts firmly in my mind to help me through the rubbish times. That’s what keeps me going.

How strange this life of ours can be…This bitter sweet success.

The Consultant who handed me the diagnosis in that small office 4 years ago, a clear image still in my mind of her sorrowful face and sad tone of voice…..Would her eyes have been quite so sad or her tone of voice quite so regretful if she could foresee what adventures lay ahead of me?

The Future Lost or the Moment Gained…..?

Today’s blog is the link to another article I wrote for Psychology Today…….It questions our continued focus on the future or the past, especially when dementia comes into your life…..

For those of us with dementia and those closest to us, the future can be a scary place, the past can remind us of losses, so why dwell on either? The moment can take on many meanings. For some it may mean an earlier time if they’ve regressed back to an earlier moment. But it’s still their moment. That’s why we always say:

”Live in our moment”……

Have a read and see what you think…..

https://www.psychologytoday.com/gb/blog/which-me-am-i-today/201808/the-future-lost-or-the-moment-gained

Billy’s been on his hols……

Hello, Billy the cat here. Today is International Cat’s Day…..well I thought everyday was my day …..So it seems appropriate that I’ve snatched Wendy’s iPad in order to tell you all about the recent holiday I had…..what do you mean, ‘Cats don’t have holidays?’. We need our breaks just like you humans…….although I am very grateful fussy……..

Anyway, Gemma and Stuart went away for a few days, giving me the chance to live the high life to be forced into a cattery…….Naturally Gemma gets upset leaving me so Stuart and Wendy took me. It’s a shame they don’t trust Wendy to feed me properly as I’m sure I could get a few extra meals out of her we’d have great fun……

Whenever I see my cosy little carrier cage,  it can only mean one of two things…….a visit to the vet or a nice little holiday a stay all on my lonesome. I wonder if I can escape before they catch me…?

Nope, not quick enough……I can tell by the length of time it takes to get there. Vet is quick, so it wasn’t the vet – phew! So I must be going on my hols they must be abandoning me…….

Wendy sat next to me on the back seat rabbitting away trying to distract me to calm me down.

I was very suspicious as the time passed as it was a much longer journey and Wendy began to nod off Wendy started to hold my paw as my meows got louder….

We arrived and I was unceremoniously gently lifted out of the car. I saw the sign

This wasn’t my usual 5 star residence 🙀…..My cage carrier was parked in what seemed like quite a nice residence. But I wasn’t going to show too much excitement straight away….I put up a struggle and refused to come out, but curiosity got the better of me, Stuart tipped up the carrier so gravity won in the end.

I had a look round. Mmmm nice house, front door, roof to sit on and window…….not bad……

What’s this? Mmmmm nice perch to show all the other cats who’s boss survey my surroundings…..

Yes ok, Wendy, I’ll stay….but only for a little while after all I will miss you you will miss me……

One of my rare outings in August….

Yesterday I was speaking at the Induction Day for new starters at NHS Humber Teaching Foundation Trust. I speak each month but assumed August wouldn’t exist for some reason so it was a nice surprise when the usual email popped into my inbox.

I usually speak alongside Cathryn Hart, Assistant Director Research & Development at the Trust, and talk about why research is important in all their roles. But Cathryn wasn’t available this week so had the pleasure of talking with 2 of her staff, Saba and Lauren, both Research Team members.

Lauren had agreed to pick me up from home and arrived right on time. Lauren is the Research Assistant who usually visits me at home when I’m actually taking part in research so it was nice to have a catch up.

We arrived at the Trust Headquarters and went up to their office where a cuppa tea magically appeared❤️. I stopped all 3 working then by chatting away, mainly about cats (😻} and Billy’s recently holiday (blog to follow soon) until it was time for me, Lauren and Saba to go down to meet the newbies.

While we were waiting outside for the Chief Exec, Michelle Moran to finish her bit, one poor newbie arrived late……I told them not to worry and to sneak in with us and no one would notice 😂🤣

It’s only the second time Saba and Lauren have done the induction, so both were nervous, but everyone has to learn and one time has to be the first.

The room was full with a big intake of new staff. These are staff from any department, clinical and non clinical. I made sure I got the obligatory piccie of me and Lauren before we started, with Saba behind the camera.

They went through all the good work being carried out in Humber and why research is everyone’s business.

I ended the session with but weirdly it sounded strange to be speaking out loud to an audience again, even though it must only be a few weeks since I did just that. It felt new and strange. I remember faltering, losing my place.  Only I probably noticed anything was wrong, after all the audience was new so their expectation of me would have been low anyway.  It’s the one reason I dislike August; my routine gets disturbed. I forget the ‘how’.

But I finished off and said….

You may be sat there thinking, well what’s research got to do with me, it’s not part of my job.We have to normalise talking about research and to do this we must have every healthcare professional, no matter what their job, all coming on board and promoting research. To normalise talking about research would normalise involvement. If you don’t think research affects you, you may change your mind if you or someone close to you was given that devastating diagnosis of dementia.”

Lauren and Saba did a wonderful job and we’ll be the Three Amigos again in September😊

On the way out a newbie introduced herself to me as a new Clinical Psychologist and she was aware of the lack of post diagnostic support and would keep in touch…….well let’s see if words are turned into action……..

On the way out, I spotted one of my playmates Pam and her daughter Jo from Lancashire on some Alzheimer Society leaflets in reception………They travel well!

Why the ‘Eloquent me’ only exist on paper…..

Many people have kindly said how eloquently I write. Some others, however, have questioned how I can write so well when I have dementia…….and question my diagnosis.

Writing is my way of fighting off dementia. I can type far more eloquently than I can speak. I could never randomly speak the words I type as they simply wouldn’t be there. That’s why I always read my talks at events. By reading words, it means I don’t have the stress of having to remember words or topics I want to talk about – it would just never happen.
That’s why I could record the American version of my book, as the words were already there.
Reading cuts out the middleman of having to think of the words and make the sentences.

That’s why I like Twitter because my fingers can type a response quicker than I’d be able to think of the words. Also, my co-author of my book, Anna Wharton, taught me an awful lot about writing during our time writing  – not that I remember it all! But she taught me an awful lot and showed me how to enjoy writing.

Some have said that by doing this I’m not exercising my brain……what they don’t understand is that dementia has rid me of that ability. Yes, I can speak, but certainly not as I type. Yes, I can have an intelligent conversation, simply not as fluently as I type.

The part of my brain which gives me the ability to type has not been invaded by dementia. I can type words faster than I can think them and produce sentences automatically that I could never speak as quick.

So please, simply because I can write eloquently don’t think I can’t possibly have dementia. Not only is it insulting but it brings me down and makes me sad.

Typing is my one escape from dementia at the moment. My one semblance of normality. Many of my friends have lost that ability but can speak to an audience without words in front of them. It simply shows how our brains are affected in different ways.

Please don’t think I’m looking for sympathy, because that’s the last thing I want, but a little understanding goes a long way.


This quote on Google summed it up perfectly….