Alzheimer’s: When prosecution of child sexual abuse is unable continue due developing Alzheimer’s

Before I start, I must state that this is my opinion only.

Lord Greville Janner has allegations going back to the 70’s for child sexual abuse when he was an MP in Leicestershire, UK.   It is said he befriended manager(s) of children(s) homes for access to young children.    I remember one case in particular regarding a children’s home in a small town where I used to live.   A friend of mine worked there and gave evidence during the court cases when it was first investigated.

Greville Janner’s name was mentioned way back and I am not going to go into details because you can read the facts in the news today the evidence regarding whether he was involved in child sexual abuse, and the failure of the CPS to bring him to court on several occasions.

The Crown Prosecution Service has deemed him unfit to bring to prosecution because he is living with Alzheimer’s disease.   So the case will not go any further meaning those adults who are living with the heritage of being a victim of sexual abuse at one of these children’s homes will never be able to see justice.

This is a very emotive subject, but one I think that is important.  Without the recognition of a court judgement, will these people feel betrayed by the justice system?

Lord Janner may be unfit but if there is a case for prosecution, surely he should lose his title?  As a Lord he remains to sit in the house of Lords, Alzheimer’s or not.

Surely having Alzheimer’s does not absolve someone of previous crimes committed against people, unless they are not able to mentally distinguish right or wrong at the time of the crime.

Is it right to let them off?  Should they still be prosecuted even if they are unable to serve a sentence.  For the survivors of the abuse it would mean a public acknowledgement of this man’s crime towards them.

I feel very strongly about supporting survivors of any crime, because they need our support in a world where justice may seem very cruel at times.

My personal view is that yes – he should be prosecuted because I refuse to believe that his memory of his whole life in the 1970’s and 80’s has been forgotten.   I can also see on the other hand that this would also be very difficult to do.

This is not an easy debate to have but one which I feel must come.

The importance of ART and MUSIC in dementia

All places where people have to visit, or where they live such as care homes or in their own home should be places that are bright and homely.  Seeing pieces of artwork or hearing sounds that they know may promote something that they have been interested in.  It is important for music to be played at times with classical, pop, folk, country (not just a radio stuck on with a channel that the staff think will do too low to hear,)  and then add some quiet times.  When music is important the type of music is also important and a whole range of music genres.

It is becoming well known that music is important to people with dementia stimulating some memories, and obviously that music has to be appropriate to each person.   In fact we all have different tastes in about everything there is; music, colours, clothes, books, places – the list is endless but you get my drift.  My interests include psychology research (because I took my degree in psychology and learnt that the mind and brain is truly fascinating, even if I struggle to remember what I learnt).

I came across this article on art and thought it made interesting reading, because I believe it has a bigger picture to offer us (excuse the pun there!).

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Night Geometry by Jack Vettriano

Basically is shows that seeing art on the walls in a gallery have a more powerful effect than being shown a photo of a picture.   I love art and there is nothing better I like than seeing a piece of art on a wall somewhere, not just in a gallery, but anywhere.  Art with meaning in a cafe, shop, corporate building, or someone’s home.  I have my own collection of art  by various inluding a signed prints by artists Jack Vettriano (Night Geometry), and Susan Howells amongst other interesting artists.

Not So Fast Please
Not So Fast Please

I am not a keep lover of some of the meaningless pictures you can buy in any high store depicting the fashionable ‘picture of the day’ such as a photo of a white flower pot with coloured plant in etc.

How does all this to relate to this article?

I think that ALL of these public and private places should be respect the cultural differences and display a whole range of good ( I reiterate that) GOOD artwork on the walls of these establishments.  Nothing wrong with good prints in decent frames.   Lets see some decent artwork around.    People with dementia may have been art lovers too.

So people working in care homes around the world, take a step back and think about what it is you would like to hear and see around you.

Just saying…..

Inspiration I take from other people living with dementia.

I just have to share this with you all.   My friend Truthful, whose blog I have referred to before has worked hard on putting together thoughts from us people living with dementia to show some great positive stories.

She asked me if I would answer some questions and whether I would mind them being shared globally.  Of course I don’t mind.

Today, I see she has posted a list of positive stories on her page and I was so inspired reading through them that I want everyone to see them.

Each of us have different types of dementia, we live in all parts of the world and have different stories, BUT each one of us feel strongly about education how we live well with this disease.

Please take a look and read through our thoughts, the link below will take you to the page.

She has called it:   PWD (Person With Dementia) Success Stories

Thank you Truthful, you are truly inspirational in your tireless work for Dementia education.

 

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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Review of my Alzheimer’s of 2014

Looking back on last year I think I have become more settled with myself. I am very proactive in looking for solutions for difficulties I have and not worrying too much if I don’t find a solution. Here are some things I think might help for people with dementia.

• I use a calendar to record everything, (as much as I remember) even writing on the notes section when on the phone and recording information I know I will forget after the phone call.
• A blackboard in the kitchen is vital when I run out of something as I write it down immediately, and photograph the board when I go shopping.

There are lots of ways to help yourself when you have dementia, and also to help others who are living with the disease. I found a great idea recently when I was reading a crime thriller. Yes, really! The main character had brain trauma which affected her short term memory, so she started to develop strategies to help build a memory database by using her mobile phone to photograph everyday things and writing a description. For instance:

new doctor: photo+name.
New appointment: take a picture of the building and label it so you can see where you have been.

How many times have we been to an appointment or an event somewhere and not been able to remember the building, or even match the building with a person who I am seeing. I get confused with who is where, and who is what service! Yes it’s an easy mistake to make but when you keep making them it gets kind of stressy. Taking a photo of the building and the person could make things easier – obviously you’d have to ask their permission to do a mug shot.

What other challenges have I met last year? Well, it has been a tough time for both my husband and I coming to terms with my diagnosis. However, he has been trying very hard to understand when I repeat something, or to explain when I can’t understand a simple sentence without getting irritated. It takes the patience of a saint when someone with dementia is constantly asking what you mean because they can’t process what you have said.

I am trying to do as much as I can to keep myself mentally healthy. Okay I know the day will come when I am unable to keep my own control on everything but hopefully I can have a good number of years before that happens.

Getting things sorted is getting harder. As you might know from my book review blog I receive books from publishers, read them and write reviews, easy right? Say what I like about a book – no sweat.  Wrong: even though I know why I liked a book putting it down in words gets harder and harder. Firstly I have to motivate myself to start writing, next comes my thoughts, but that’s where I have to really push myself. I love writing, I love words, and I love books, so why does my brain become tongue-tied when I attempt to write it for the publisher?   This really is hard work for me but I will not give in, my encouragement is the odd email from a Publisher or an Author thanking me for my honest detailed review.

Travel – I no longer have my driving licence, and I miss it like anything. Could have I carried on driving? Possibly, but really my attention is not always great now so I would rather be safe on the road than sorry that I caused an accident. I am now becoming a train and bus traveller – alone I might add! You bet I am terrified before I travel, and stressed whilst I am travelling, but so proud that can still do it.
I have downloaded a LIST app to my phone and put in every detail of my travel details, departures, arrivals, times, places, other information etc etc.
So far it has worked. Travelling to London and then across via the underground can stress out even the most season traveller, but I have learnt to be single minded follow my instructions. If, like my last journey, all the trains ceased to run out of any of the stations I was travelling from, I managed to negotiate with any official looking person in a Network Rail/British Rail uniform on which train I should be. Oh yes – bring it on (actually it was really stressful but I did it). A simple journey is no longer simple – see my last post.

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Socialising – I find myself wanting to be in large groups of people less and less. I might of want to be with groups of friends before, but now it somehow fills me with apprehension. What has changed? Too many people means I can’t always process what people are saying, combined with the fact that I don’t always get jokes. When everyone is laughing because someone has said something funny and I have no idea why, it can leave me feeling outside of the ‘group’.
Hearing – I am finding it hard to process what people are saying, even though what they are saying might not be complicated. Also, if more than one person is speaking I have absolutely nil chance of hearing one voice! One person speak at a time please. I am no longer willing to meet people in pubs anymore because there is too much noise for me to hear only one voice. It is like being deaf in a sea of noise.
Vision – Definitely need several different glasses but doesn’t everybody as they age. Some days when I read the lines on the pages are wavy, or they get smaller on one side which is to do with my Alzheimer’s. Or sometimes I cannot understand the sentences on the page and have to stop reading.  My perspective is worse I believe. I can look up a road and not be able to work out the perspective of the street, houses and pavements are. Another reason I don’t drive now.
Memory – Apparently goldfishes have more than a 7 second memory, unlike myself at times! I think my memory remains in the same state thankfully, somethings I am ok with, some things I have no memory of. I recently received a copy of a letter from my consultant Neurologist, with information that I agreed to phone her after six weeks of our appointment to discuss my medication. I have no memory of that conversation so obviously I haven’t yet phoned!
Communication: I met an online community of people living with Dementia who have inspired me to try and get involved in bringing awareness to the realities of living with this disease. That is my most significant undertaking ever. So roll on 2015 when it starts.

The thing I have learnt the most is that I STILL CAN attempt to do anything I feel able to do, but I don’t beat myself up when I fail.

Alzheimer’s: Dreams and beyond 🌏

treebuttfly

Just been scrolling through and reading some posts of the people I follow, and some I haven’t met yet.  I love reading travel blogs and seeing pictures, something interesting, not just blurb about the places that can be read in any travel brochure but personal experience.

Thing is, I seem to have a ‘compulsion’ to seek out personal experiences in remote places.  I am not totally sure why this is, but I feel as if I am always searching for something, some truth or peace.   Is this something new?  No, I think I have been like this my whole life.   I enjoy seeing the simplicity of people’s lives, and even though I know it is a hard existence I find myself imagining what it would be like to return to basics, to be filled with the simple pleasure of seeing the mountains/forests/rocks/grasslands around me.

I found a great site called Gypsy by trade and devoured their experiences feeling so envious.  How wonderful to work and save for six months and then travel by bike around remote places.   To meet the people they have met, seen such wonderful land around them.

Of course it is an absolutely ridiculous thing for me to feel envious of their lifestyle, I am too old, too decrepit and in pain with Fybromyalgia, and I have Alzheimer’s, but it doesn’t stop me dreaming.

Hope is a waking dream.  
– Aristotle

I believe that my peace is without luxury, it is plain, natural, and honest.  It is in silence in the midst of the roar of nature.  I think if I were remotely religious I would be a Quaker.  I once attended a course on debt at the Quakers House in Leicester and remember the feelings of peace being there with the simple style of plain wooden furniture and the calm of the gardens.

I feel sometimes as if my life has fallen through the holes of sieve. The excitement of my youth with dreams and plans trickled through with lack of confidence to live, fell through first…

Now; I feel a contentment in myself, I am terrified for my future with Alzheimer’s because there is nothing I can do to change it, but right now I am comfortable with who I am, and how I am.  I have the peace of being on water, waking up to the birds each morning, and most days no industrial noises.  Only when the wind blows one way does the traffic intrude.

However, that yearn for travel is still with me, searching for the love of experiencing other places.  I love the excitement of getting on a plane and landing somewhere I have never been.  Early this year it was Budapest, a wonderful place, and memories with my daughter.  We drank in the architecture, the history and culture.  We walked and walked finding enjoying the different areas.

Our next adventure will be to Alaska, my dream place to be.  Our once in a lifetime holiday whilst my mental abilities are still good.   I am not sure how long it will take me to save up but I am already excited to breathe in the remoteness, the stillness, and moments of being surrounded by peace.

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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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