Well now, what’s new?

Gosh it feels like ages since I have written and posted anything.  I am quite busy these days and need to get some time to sit and read, and also write.

Early December I lost my Dad.Scan 9

At 94 his heart simply stopped.  He was at home and had lost the reason to live after my Mum died last June 2015.   It was a sad time for all our family arranging a funeral for the second time in six months.   Now we have the hard task of working together to clear the family home, I don’t need to say how difficult that is.  We all miss him so much.

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So what else is new….well the biggest thing is that I recently tried to join a research trial for a new drug for dementia that has had some remarkable effects.  So I was keen to get on to the third phase.  Along I went and carried out the initial memory tests to see if I was eligible and was not really surprised to find out that my memory was too good for the trial!  Over time I have been feeling that my cognitive abilities have indeed improved and I discussed it with the researcher.  I have now been taking Rivastigmine medication (Exelon) for the last 2 (or is it 3 years?) and it has certainly improved things for me.  I have also worked hard in trying to keep my mental abilities active, by reading, writing, playing scrabble, sudoko and the like.   I think it is great news.   There are times when I know people have questioned their diagnosis (or others questioned the diagnoses of someone) when they do not appear to have any great cognitive difficulties or have improved.  It is very unsettling when someone has a diagnosis of dementia then told they do not have dementia because the symptoms have improved some what.  People want a reason for their cognitive difficulties.    For me, I would love to have a different diagnosis, ‘So sorry we made a mistake you don’t really have Alzheimer’s those empty holes in the blood flow in your brain scan was just a smudge on the camera lens’  and I still wonder if brain trauma looks the same as Alzheimer’s in a scan, but then know it is likely it leads to the same thing.  I even thought of trying to get a different diagnosis, perhaps downgrade it to MCI (Mild Cognitive Impairment) which I already have, but the reason for it was diagnosed as Alzheimer’s.  It all seems so complicated and simple at the same time.  What does it matter anyway – well I will tell you how it affects you.  I have to first remind you that I do NOT have Dementia, yeah yeah I know that Dementia is a symptom, but it is also a disease, and Alzheimer’s is classed under that.  You still with me so far?   Ok so having been told before by one GP that you cannot have Alzheimer’s without dementia due to it being a dementia, I have Alzheimer’s disease without dementia.  That fact still remains true at present unless anyone else can interpret my scans differently.    Holiday insurance: did you know that you cannot get a yearly insurance if you have a diagnosis of Alzheimer’s?  No matter that I may have only mild cognitive impairments, it is the word Alzheimer’s that is the crux.  I guess if I said my diagnosis is MCI then I would be able to get it.  I can get individual insurance for each holiday so I am told but at a greater cost.   (I have just booked a trip to Alaska with my daughter in August which we have been saving for! )  Driving licence:  I would have to apply for each every year with my doctors confirmation that I am able to drive.  I have however had to surrender it because my attention  is too poor.   Yet someone with ADHD, are they able to hold a driving licence I wonder?  Suffice to say the word Alzheimer’s in itself is a barrier to a lot of things regardless of the level of it.

It’s great though that my cognitive abilities have improved and I hope it will remain so for many years to come…….

I am involved in my local YPWD (Young Persons With Dementia) group and join in activities locally.  We had an arts and crafts course before Christmas which was fun, and since then it has been furniture up-cycling – something very close to my heart as I have furnished my flat with old furniture and am up-cycling it bit by bit.  I am really enjoying doing it and discovering what my style is!

On Monday I shall be speaking at the Berkshire Dementia Action Alliance Meeting.  When I was asked I felt a bit of a fraud but then I am more than capable to talk about how it was when I was diagnosed and what I have been doing since to keep my brain active – use or lose it as the saying goes, and how to make sure that I remember everything on a daily basis.  I can talk about how I still fear the future – when I allow myself to.   Also speaking with me is a guy  who is another member of the Newbury Empowerment Group so we know each other.   So I am trying to put together some notes for that.  Will let you know how it goes.

Next, I have been asked to be part of local nurse training giving information about early diagnosis and my experiences.  I can not only pass on what I know, I can also give them lots of information that they will not have even thought about!   I am so pleased to have been asked and can be a voice.  Not sure whether that will be by video or a talk.  Looking forward to being involved with that.

I have had some very small involvement in the West Berkshire Neurological Alliance, which is an excellent forum.  I regularly attend the Berkshire West Therapy Centre using their exercise machines to keep fit in a way that helps my Fibromyalgia.  It is such a unique place with only one other coming close to it in the country, I help out with raffles, and will help when they move premises on 1st April.

This year is already turning out to have the promise of lots to keep me occupied!

Dementia: Out of the mouths of babes..

I have just watched the most beautiful piece of film I have ever seen.  I can guarantee that you will have never seen dementia viewed in this way before.

How do you be with someone with dementia?  How do you communicate?   Children are the sweetest gift ever given to anyone and in this film young people talk about their grandparents who have dementia and how they deal with it.  If it doesn’t bring a tear to your eye then I will be amazed!

Produced by the BBC (British Broadcasting Corporation) for CBBC (the first ‘C’ standing for ‘Childrens’) this is a programme that is on air for children’s viewing times.   I feel that this should be shown so that all adults can learn from children how to help their loved ones with dementia.  Click on the link below to watch it.

My Life – Series 6: 3. Mr Alzheimer’s and Me

Josh, Ella and Hope all have one thing in common – they have a grandparent with dementia. It isn’t easy having to be ‘the grown-up’ when their grandparents get forgetful. But all three of them are determined to help them as much as they can. They all have their different ways of coping, which they want to share with other kids going through the same thing, and have recorded personal moments with their grandparents on their own cameras. Josh is determined to help his grandad remember and secretly gathers mementos for a memory box. Ella decides to organize a sponsored walk to help raise money for research into the causes of dementia. Hope’s granny gives dementia a character – Mr Alzheimer’s – to help Hope come to terms with it all.

29 mins long.

What is Dementia Friends? – I attend a talk

I received an email which said one word “Interested?”.   It was information about a talk being given at the Derby Women’s Centre about Dementia Friends (find out more here) which is an initiative with the government and Alzheimer’s Society.

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Should I go?  Then I realised that although I knew about Dementia Friends I didn’t really know what to expect of them so decided this would be a good time to find out.

There were a good mix of people there, and I introduced myself to the speaker.   Sorry but I can’t remember her name – I am not good with names, the whole world should start wearing badges with their names on!

She was pleased that I was attending and asked if I minded talking about my own experiences, which of course I didn’t.

What an excellent morning it turned out to be.  The talk was tremendously appropriate and informative.  I can see why they are so important to be spread across Britain – everyone should have the opportunity in taking part in one.

A Dementia Friend is someone who has learnt what living with Dementia can mean to people.  Everybody has a different experience but it is important to treat everyone with the same positiveness of what they can do rather than why you think they can’t do.  Never assume someone has less capabilities than they may have.

I was asked lots of questions about how I live with it, and was able to answer about how I experience my own cognitive difficulties.   It was great to meet these people and learn about the Derby Women’s Centre.  I hope to pop in again sometime.

This was my first time in public talking to strangers about myself living with Alzheimer’s and I think they were surprised because the image is always someone who is elderly and in the later stages of the disease.

How did this make me feel being there?

It was great to learn more about what education is available to everyone regardless of who you are, where you work, age, race or religion.  Dementia has no cultural specifics, and how we educate the world should be in the same manner.   I felt like I could contribute something positive, and show that life for me good.  My glass is half full not half empty!   I felt the warmth and interest of the people there and they reached out to me.  Lovely 🙂

Coping strategies with Alzheimer’s that invokes the feelings of guilt.

There is this wonderful site by Ann Napoletan, who was a carer for her mother with Dementia. The site is packed full of information on the disease. Who can help, support for carers, support for those with the disease; what is Alzheimer’s with signposts to tests to check yourself.FUNNY-FUN-FUN.COM

One thing that struck me when I was browsing through it was that I need to address the fact that I have a reluctance to ‘acknowledge’ the trauma of caring for someone with dementia.

This is a tough thing for me to write about because I risk not meeting expectations, and of being too honest with my thoughts.

At first I thought it was a simple case of me feeling somehow angry that they spoke so loudly about the trauma of being a carer, (which I was told was my own coping mechanism), but then that made me feel really guilty. Inside my head is a chamber holding contradicting thoughts each trying to have their say; caring vs living with the disease. Too much ‘shouting’ does not allow me to sort out the mess of emotions that make me feel the way I do about it. It would be so easy to simply shut down without processing any of it and become the ‘patient with the disease’ mindless, and accepting of the confusion, blocking any meaningful process of mental activity, blocking out the effect of my disease will have on my family and friends.

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What I feel when I read about the torment suffered by carers is: irritation and anger:
Question: Why?
Answer:   How dare they shout about a disease which they don’t have. They can get support from their own groups, because they are competent enough to seek them out and have their moan/talk about their guilt of moaning/loss of life outside of caring etc. They are not facing a slow lingering death with confusion but with the knowledge of being aware of it happening.
Comment: Is that fair of me? OF COURSE IT’S NOT in fact it is a hideous thing for me to say.

Independence is something most of us fight hard for.  Meeting friends outside of the home, choosing our own actions; what to wear, what to say, who to say it to.  What this disease does is end all of that but slowly and with the knowledge it is being lost.  Fighting hard to keep it can delay it but not stop it.  Being aware that you are the cause of your loved one’s change to their lifestyle can bring on the most heart wrenching guilt – sorry I never meant this to happen forgive me.  Watching someone you love battling with; trying to come to terms this change, with their future as a carer, again causes guilt.

This is still selfish of me to write this because look..somehow I have still not acknowledged the pain of being a carer. The life you wanted to lead has been diverted to a different path and certainly not one thats easy or pleasant to walk. You want to run away from it, because you know once you take that first step in acknowledging the journey you are about to begin, your life will never be the same.

See, I have done it again – spoken for you without addressing your pain.  Someday you will speak for me, guessing what it is I need to say.

What I am trying to say is that, I am scared to read your pain about how emotionally draining it is caring for loved ones, I want to empathise, but struggle to because it is too painful for me to think that I may cause that one day.  I would never willingly cause anyone so much suffering but it seems I will.   So, if I seem self centred I apologise but right now I cannot cope mentally with how I am going to change your life, the loss you may feel of a loved one or the lost promise of your own active future.

But, I recognise that this is my coping strategy, please forgive me.

Of course I can’t leave it like that because I will also acknowledge that there will be bright times when I say something that will make you laugh that I will be able to join in with that. Times when our love will shine through and be comforting.  Times when both of us will feel the best we can that day.

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The feelings of anxiety and TV commercials 😬

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Recently I felt anxious, not for any particular reason but for its own sake.  Alzheimer’s anxiety?  This is not the first time I have experienced it but let me explain what I mean.

Back in the 70’s there was a slapstick program called ‘Some Mother’s do Ave em’  (1973 – 1978) about a character called Frank Spencer, his young wife Betty and their baby.  Frank Spencer was played by Michael Crawford, his wife Michele Dotrice.  The character of Frank was accident prone and was constantly destroying things, his tolerant wife would just sigh and say ‘Oh Frank” in a wistful way.  He appeared so clumsy but was so innocent as he managed to get himself into another scrape whilst looking for a job.  I identified with him, being a ‘clumsy’ child myself (through dyspraxia) but instead of gaining sympathy in my clear lack of bodily coordination I would get a verbal and physical chastisement.  Yes, this explains why slapstick comedy makes me anxious but does not match my experience of anxiety with some everyday things and events.

NoiseThese bouts of anxiety comes and goes, but when it comes it affects me totally.   I wake in the morning with my head pounding, the muscles in my face taut and tense, pain completely engulfing one side of my head and face, the right side.  I am in so much pain I feel sick; migraine maybe, but not every single day, so no.  I try to relax my face easing the pain in my muscles being screwed tight.   Of course I have asked the doctors over the past few years why I get this pain in my head, it’s not normal is it, but so far no one has ever tried to find out why.   I think this is because I seem to have other things not quite right and so they focus on those first and never get round to sorting out the pain in my head.   At this point noise; sounds outside, inside, talking, bangings etc all make me feel more anxious and make me want block my ears.

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I digress, because this is about being anxious.   Lately as I say, there are certain TV commercials that make me feel very anxious watching them.   At present there is a commercial on television about an energy company, showing an orang-utan walking through streets of people, looking through shop and office windows, at light bulbs and people being together.  There is a blank expression on this orang-utans face: absolutely nothing.  What do I see when I watch this commercial?  I see the pain of an ape being alone in a strange place, his environment destroyed to provide something shallow and artificial for humans.  There are no other apes around, there are no trees just streets, buildings and lots of artificial light, he is lost and there is nothing left for him.  The last shot is of him is swinging on a street lamp, then it cuts to the name of the Energy company.  All the while I am watching this I feel anxiety building as I see all hope slipping away for the animal.  It builds so that it makes me want to roar in pain.   This is not the only commercial to affect me so physically and all are seemingly innocuous.

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People without patience getting visibly frustrated also makes me anxious, it doesn’t matter if they are throwing things about in irritation, verbally expressing their frustration, impatience on the road driving, or waiting their turn in a queue and it doesn’t matter who it is.   My anxiety builds silently until I want to shout for it to stop, stop, stop!  At these times I need calm and silence, so I silently withdraw into myself like a Buddhist monk in meditation.

Seemingly small things make me anxious and just know some inward silence, blocking out the world helps.

This all sounds quite dramatic but in reality these thoughts are well worn and fleeting as I activate my strategies to focus on something else and writing helps, even if it is about being anxious.  I try to get rid of all anxiety as soon as possible and peace resumes inside my head.

And breathe…..and relax…….

 

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Do not smile with pity in your eyes

Do not smile at me with pity in your eyes
because then I see an empty heart
Do not write with sadness in your tone
I can still feel every word you write
Or speak in a way that simplifies your voice
in case somehow I have lost my intelligence

When you think of me look at who I am
not who I was when we bounced against each other
Remember the times we had being creative
laughing and talking till all hours
Tthrowing our dreams in the air hoping
to catch them when they floated close enough

Listen when I speak to you because I am still here
I can still feel the same when you discuss a thought
I can still laugh and throw ideas your way
You may see a few cracks but don’t dwell on them
enjoy what I still have and am inside
Understand what I have to say is important
worth a serious listen and response
as you would anyone else in conversation

Think of me with the love of the friendship
we have embraced before, secrets we shared
happy days, the troubled times we put to rest
Now bring that to our communication
A knowing smile, words special to just us
Remember my personality and understand me
Its still lurking in me waiting to peek out
and surprise you.

How do you reach someone who appears a shell?

Speak to me with music that I listened to
being collected on my iPod ready for use,
Speak to me with photographs that I have taken
perhaps seemingly random but
those decaying buildings held sway for me once.
Read to me: poetry, a crime novel, no romance please
George Elliot; my favourite classical author

Know me, that I am not a stereotype
When touch is important, know that I HATE it
Unless I have a manicure or pedicure
Know me in dyspraxia and dementia

Brush my hair I love that feeling
Give me my 18” of personal space
know me that I needed that once

Know me that I love all things alternative
and that my sense of humour may be dark

It matters not
that you may not see these things in me
But know that is what shaped
my personality to the person I became
And to each of you, dear friends
I showed you a side that remained yours alone

So
Do not smile with pity in your eyes
Let me see instead, love, understanding
or a wonderful wickedness of a life enjoyed

Brain to mouth, Receiving, Over?……..(Silence)

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Yesterday when I got up I started reading a book, so I read from just before 8am and finished it around 9.30pm. I simply could not put it down it was so exciting. This morning lying in bed I was thinking about writing my review of it, but cannot for the life of me remember the name of the book or what it is about. I have absolutely no memory of it, nothing, other than reading a book so good I had to finish it in one go!

I am reluctant to look it up on my kindle to see what I have read as I wish to search for triggers enabling me to bring all the information to mind and there is a part of me that doesn’t wish to hurry this process. Take it slowly, do it right, no frantic word search in my mind to find the key, no frustrating inward shouting at myself ‘what is it about’. 

I will make another cup of coffee and see if I can work through this methodically to prove that I can remember it with the correct triggers I can give myself.

Right here goes: it was a thriller, but not horror …………. there’s the trigger and I have it – Before I Go To Sleep. Eureka! that was easy.  My first memory was a hotel room….can I remember the names; Ben, Claire, Dr ?, Adam, but what was her name..Christine! Eureka again!  Do I remember the details of the book?  Some, not all, if I try to give you an outline I would get confused, I would not be able to get the sequence right but it does not matter because I know how it made me feel when I was reading it. I was excited, on the edge of my chair, I couldn’t put the book down and felt guilty about all the things I should be doing as I was reading, but still I could not put the book down.   

catbookSo how do I review books when my memory about the storyline itself is so poor? I go on the fact that I know what I like, how a books makes me feel when I am reading it and what emotions am I get from the way the words make up the story.  Does a book make me think, do I break down the plot in my mind, can I see what the author is trying to show me. Did the book give me the escape that I enjoy?

What the author is looking for in a review is whether the reader loves the book on as many levels as possible. No book will be loved by ALL because we have different tastes and enjoy different styles of writing. I struggled with the first Harry Potter book and could not read the rest because I dislike the way J K Rowling writes, however millions of people love reading the series. I do however love the films and believe her imagination is wonderful.

When I look at my Goodreads read-books-list there are titles I have no knowledge of reading or what the books are about which means I could read them again as if they are fresh to me, but reading a style of writing that is comfortable is not challenging my cognitive processes. Finding grammatical errors in a book with writing that lacks the finesse of established skilled authors exercises my cognitive skills, because I am determined to focus on understanding the story. This is not always easy when there are days when I struggle with the construction of sentences and have to read the same paragraph repeatedly to make sense of it.  It is often easier for me to leave the book and do some writing.

In my thoughts words flow so easily, I don’t struggle to express myself and can say exactly what I want to say. The difficulty begins the moment I come to speak aloud, then the ability to retain this flow is completely lost; the connection between my brain and mouth is faulty.   I can however write better than I can talk and I believe this is because I am a touch typist. I think – and the words appear in front of me like magic, but if I stop to construct a thought to write it down it disappears. Sadly though this ability does not encompass my memory.  I do have to read over what I have written and rewrite quite a bit though because my fingers are sometimes wayward and write their own things down!  The process of writing takes more time and effort than it used to.

But today I am rewarded finally with some memory of the book I am about to review, so with the addition of flicking through the pages to remind me of the story and using the notes I have made whilst reading, I shall write my review.

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