Closing a chapter…opening a door

You can’t have failed to have noticed that I have made some major changes to my website and myself.  I feel I am closing a chapter in my life.

Firstly, I have am in transition from being married to being single.  It is not appropriate for me to talk about that, only how I am redefining my life now.  Hence the name change, reverting to my maiden name.  ‘Gill Taylor Muses’  also introduced a new chapter in my life for me.

When I was given the diagnosis of ‘possible Alzheimer’s’ my life was turned inside out, upside down.  It felt like there was nothing left for me to plan for, to look forward to, that my mental demise would quickly overtake my life.  So I began making some wonderful friends across the world who also had been given dementia diagnoses.  Instead of just having support, they have inspired me, they have all worked tirelessly to show how anyone can live well with dementia, that education is needed world wide to enable everyone who has dementia can lead a better and indeed in many cases a productive life before the end stages.  They work to show people how to understand how dementia affects people, and how to communicate effectively.  I often hear people recalling their experiences of trying to talk or understand someone in the later stages of dementia who is seemingly talking nonsense and leaving everyone confused and frustrated.  I have learnt, however, how effective understanding and communication can make the experience  better for both sides.   It is simple really, all you have to do is learn about dementia and how it affects the brain, nothing technical just relating the personality of the person with dementia with their confusion.   Random sentences such as ‘I want to go home’ can simply mean “I am confused and am not sure what is happening, please reassure me”.    So a simple reassurance that a familiar person or place is around them, telling them you are they and everything is okay can help.    No need to talk about, where home is or isn’t.   That is a loose example that may not fit every situation but knowing the who the person was can help in how you talk to them.  My own mother never lost her sense of humour with her vascular dementia right up till the end.  So to bring humour into her life when we were talking was a really important way to make her feel safe and comfortable.

I digress.  I got out my diagnosis letters and re-read them.   At the time when you receive these letters all you can see is the word ALZHEIMER’S or DEMENTIA jumping out at you.   I was looking at it, and thinking about all the questions that were asked over various appointments and tests. Q: “How long have you notice problems with your memory” – this is a simple question isn’t it.  Answer:  Always.   Q: “Yes but more recently how long has it been getting worse”.  A: Well, I have noticed it more in the past couple of years.  Actually my daughter said to me “Mum, your memory is rubbish you should go and see about it”.

Why did I answer like that?    They were pushing me to give then a date, a time, but it has always  been a problem.  I remember at University, I was 40 years old and felt so excited to be given the opportunity to study but worrying that I would find it hard to remember any of the information that I had to learn.   See, that’s another thing I have always had a problem learning new information.    I studied Combine Science; Psychology which included how we learn new information, in fact my final year dissertation was titled Evaluation of Configural and Elemental Models of Associative Learning Using Visual Lexical Stimulus  – in simple terms that means looking at two theoretical models of how stimulus enables us to learn something new, using two categories of insects and their parts, and the cognitive process of learning which belonged to which.

For me it was the most challenging of studies because it was complex, however it gave me a good understanding of associative learning.    This does have a bearing on my diagnosis and my understanding of my own cognitive difficulties which makes up the reasoning behind my diagnosis.

My experience at University was such that I would have to read, and re-read the same things over and over.  Make notes and then revise those notes because I would not remember anything in them.   Lectures were a nightmare because I could not remember what was said in any detail whatsoever, my notes were a mess lacking in any cohesive form and made no sense once I had left the lecture theatre.  Short of writing down verbatim what was being said I had no chance of remembering details.  The worst part was the lack of any memory of the substance of many of my lectures.  I knew I had a real problem but never thought to ever question it with anyone.  Psychology is a long list of theoretical models by Psychologists and dates that have to be remembered in the correct order.  Arrrggghhhhh……..yes this was a nightmare for me but I would learn them by rote learning, and by making up ridiculous sentences with the initials of their first name.

I also studied History of Science, and with such a range of subjects, facts and figures I am surprised I managed to remember anything.  One thing I have always been good at is using my imagination and lateral thinking.  A learned skill from childhood when your memory is extremely poor.   During my finals, I had an exam whereby the questions arose of things that none of us had focussed on during revision and I wrote a complete essay using my understanding of the progression of science, and one paragraph I had read in a book on Alexander Von Humbolt and weather systems.

Following University I worked in IT and was fortunate enough to have a wonderful friend (thank you Darren) who would continually give me the technical instructions that somehow I could never manage to learn.  I wrote everything down, every single detail of instructions, and even then managed not to understand them.  And when I couldn’t remember something that I had been doing day in and day out, Darren would be the one who would tell me, yet again.    He did say on more than one occasion that he had already gone through a procedure with me, but thankfully always told me again.   This enabled me to be effective in the job I had.

Finally, as I was getting older, my memory problems was beginning to be more apparent.  The most apparent thing was that, not that I was forgetting, but I had no memory of events that day or previously.  Notes I had made seemed alien to me having no knowledge of writing them, and of course the information they contained I couldn’t remember.

So….was this new or was this something that has got worse as I have got older?   Who can say after 60 years of age that they have not wandered into a room and forgotten why they are there?  Or forgotten what they are talking about midway?   Or meant to do something important but managed to forget remembering after it is too late?

Back to my diagnosis.   I had a brain scan, the scan shows perfusion (reduced blood flow) in several areas of my brain.   Medial/parietal lobes, more so on the right, and an underdeveloped frontal lobe, but no perfusion there.    The underdeveloped frontal lobe is attributed to possible brain damage due to being dropped on my head as a baby (I asked = no), or repeated blows to the head throughout childhood from my mother.    I now would like to discuss with my consultant when I see whoever it is next year, my thoughts about this.  I can’t possibly have had Alzheimer’s all of my life.    It is written and was discussed during the appointment where I was given the diagnosis of possible Alzheimer’s that I do not have DEMENTIA.    ‘Not possible’, one doctor has said to me, of course you have dementia if you have Alzheimer’s disease because it is one of the dementias.  Confuses the hell out of me I can tell you!

So here I am with memory difficulties that I have had most of my life, preparing to become totally disabled through dementia, when I can no longer relate how I am to the ‘label’ of Alzheimer’s.

Is is wrong of me to say, I have always been like this and therefore know that it could be a long long time before dementia takes hold as much it will with anybody, so until then I will assume that my diagnosis is a label that cannot be proven until autopsy.

Of course I shall still be shouting loud at the ‘Empowerment Group’ for dementia meetings, because I can!   I shall be a voice that can speak for those who cannot.  I shall still be vehemently fighting for Dementia education for all, again because I can!

I am also getting involved in the Fibromyalgia Support group because that is what is affecting me the most these days with lots of pain.

Onwards and upwards, I feel it will be an exciting year of activities in local groups.

My first week in my new home

Think I have overdone the unpacking, sorting and painting of furniture this week and slept most of yesterday!

Things are sorted out in my new flat and looking nice and I am now getting used to living alone again.    I have noticed as I have been trying to organise new Doctors, Opticians and the like, how on a good day I am more than capable, on a wobbly day, I can be a bit befuddled.   I know that I need to keep in check my awareness of making good decisions, because I know that at some time that I will become less able to take the right one.   I need help putting my new TV together (putting the stand together and setting it up), but am so aware that I must be careful about who I go to for help.  I do not have the strength to screw the stand together so a handy man should be able to do that, but who do I know who to choose?   These are real worries.

I have talked to my bank and thankfully they are fully ‘dementia aware trained’ and was given some excellent advice as to how to manage my money safely.   Thank you and well done NATWEST Bank!

I have painted my new (second hand) furniture with chalk paint and am well pleased with how they have been transformed.  My pictures are up, and almost all of the boxes are empty.

I have finally managed to settled down to begin reading again, my absolute pleasure!

I follow a blog by Pippa Kelly and she writes about “Dementia Friendly.  What does it really mean?”   (click the title which is the link to take you there) which is spot on.   I love how she questions what it means and then shows us by recounting it in action.

For us who are living with dementia, wearing a badge, proclaiming you are dementia friendly is not enough if you have no idea how to implement it.   It means, writing things down for us, giving us clear instructions, signposting clearly and  repeating everything.   I always comment that I may look as if I will remember or understand everything, but that is a mistake to make, because in reality I will not remember what you said, or your instructions.

I am resting up this weekend and doing some more reading as my head is not ready to take on the world quite yet.

Living with Dementia: I am fine, maybe they got it wrong?

I consider myself to be high functioning with my Alzheimer’s.  In fact some days I can almost feel like there is absolutely nothing wrong with me.  I’m ok.  No problem.  Maybe the diagnosis is wrong after all.  Maybe I will continue being ok forever.  Yeah!

Then something happens and it throws me.

Yesterday, I went out.   It was 1:30pm and we went to a marina and I spent a little bit of time alone browsing in the shops.  In the handbag shop I chatted to the assistant about Radley bags, Kipling bags, and I bought a new slimline Kipling purse for my small bag.  I walked around another shop full of pale goods that have no function other than to look pale and interesting.  All very nice, all very expensive.

Next was another marina, I went into the shop and bought chocolate, and then sat on the bench outside to wait and watch the world go by.   On to shopping to get some provisions in.  We walked round the town, into the mall, around some shops, and on to the supermarket.  My fibromyalgia was flaring up, my body was/is screaming with pain, have done some brass polishing on my boat previously.  But, these things have to be done!

We got home at 6:10pm.  I hurt like hell and could barely move.  Took my coat off, dumped shopping in the kitchen, and bent down to take my boots off…………….

11030080_10153046372384463_7191676412642030365_n

 

HOW IN THE WORLD DID I MANAGE NOT TO NOTICE THAT!!!   

My first reaction was to laugh hysterically.  Well who wouldn’t.   Then, reality set in.  Fear of not being able to dress properly.  Ok this was not the worst thing in the world but it has ‘rocked my boat’ a bit.

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

images-11

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 🙂

Technology has got the better of my Alzheimer’s

ST TNG A Fistful of Datas 3

Eek!  Bear with me, I am having problems with my blog site domain name.

Having worked for nearly 10 years in IT, I am now finding myself unable to negotiate simple instructions.

I thought it would be great to have my own domain name, so I bought mine and have been trying to attach it to my blog.  So far with the help of several wonderfully patient WordPress support staff on the end of live chat, and I thought I had got it sorted.  I may have but the problem is, now I cannot access my own site!  After having cleared my ‘cache’ still no go.  So I have no idea if anyone else can see it!

In case you can:  Normal service will be resumed shortly (when I can find a 7 year old child to help me).

So, if I don’t respond, it is because I am the only one not to be able to access the gubbins of my own blog. Sorry.

Am working on it………

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.

26cf178efd3253be31c526ccaf33b81e

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.

2561