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.

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.

Travelling with Azheimer’s

So, I travelled to London to stay with my daughter for Christmas.  A one hour journey with one change which went well I got to Euston fine.  No sweat.  Next – two tube journeys to meet my daughter.

No problem eh?  First tube was ok, I started to feel a bit anxious but the instructions were clear, get the Victoria line Northbound.  Just follow the signs.. and yes I got on the right underground train.  I alighted at Highbury and Islington and had to get on the overground to New Cross Gate.  I couldn’t see the map on the top of the wall to see where we were, and started to worry that I was on the wrong train.  What if I was on a train going in the opposite direction?  My anxiety levels started to increase.  I was no longer sure about what train I was on.  This should be so easy, I have the directions on my phone as a list.  But can I be sure the list and the train I am on is the same?  The feeling of anxiety is heightened even though I am trying hard to convince myself to calm down; I am on the correct train.

Once upon a time I would take all this in my stride, no stress, on the wrong train – no problem just get on another tube in the right direction.  Sadly now that is a harder option because I am no longer confident in trying to sort out where I need to be.

I am well aware that I am at a very High End Functioning end of Alzheimers/Dementia  – thank goodness.  Keep going like this for as long as I can.

Anyway, I got there fine and we had a very nice time, nothing special, nothing racy, just quiet and normal.  We cooked a wonderful dinner together, we watched Disney films:  Frozen, Brave etc.. lovely!

And then……we just remained cosy and normal for Christmas days.  Eating, drinking (not too much) watching TV, chilling, sleeping..etc, just the relaxing time you would want for the holiday period.

Journey back:  just hell

No trains back from Euston.  Various routes:  but mainly from Marylebone – via Banbury/etc etc..  I had negotiate my ticket on the train because I was not on the Midland Mainline.  I had a change at Birmingham Moor Street with a walk to Birmingham New Street.  Sorry but I could not contemplate trying to find my way to New Street Station so i called Mr Hsg and he picked me up from Moor Street Station.

Phew, anxiety breakdown averted.  I feel so good that I did it.

I used to be able to go anywhere without much trouble, if there were challenges to work out the route – no problem.  Just find the destination and work it out.  These days I plan, I write out the plan, I get anxious that the plan is not working.  But, right now I can make it.

When you think of someone making a simple journey difficult, think hard.

A simple bus journey that you and they have always done, suddenly becomes the most complicated journey ever.  Don’t expect a person with Dementia to be able to negotiate a simple journey like they used to.  Written instructions may have no meaning, memories of the journey may be lost.  Do not assume that because they did the journey before, they can do it again.

Fortunately, I am still at a stage where I can phone people who I know can help me when I get confused.  But the time will come when I am no longer able to make that simple train journey on my own,

Before you assume your loved one can travel the same as they have always travelled, ask them if they still feel able to do so in the same way.  Do they feel confident? Has anyone written out their route for them?   Is there anyone who can meet them?

When I can no longer travel alone, who will be willing to accompany me to where I want to go?

These are the things that need to be thought of in Early Onset Alzheimer’s Disease.

Just thinking……………………..

 

 

 

My Dementia Dreaming

Adventures with friends!

My dreams are becoming more complex.  They are not scary, but they are so involved it is like watching a film.  It is not like seeing snatches of scenes but whole segments of an ongoing story.  It appears that I am weaving people, bits of television programs, reality and events into fantasy all involving myself into a nighttime world that I step into.  I have caught trains, been in airport terminals, I have been pregnant, built houses, had adventures, travelled with friends and companions I have never known before, with my friends who bear no resemblance to their real selves, and all in 3D and colour!

The dreams are relentless each night, and sometimes leaves me mentally exhausted in the morning, without the ability to retain the memory of the details of them.   I simply wake with my daily head pain, my brain stuffed full of mental activity, which by the time I have made a drink and takeDreams or realityn my tablets and ease into the day, dissipates.  But I know one day they won’t.

There is no real point in trying to work them out because they are garbled meanderings that have no meaning.

from_machination_of_dementia_series_by_lukaszwodynski-d5lssdw.jpg-142250I know that they may get worse, and hope that they do not develop into nightmares, common with some types of Dementia.

 

The problem with dreams is that as the disease progresses they become mixed up with reality.  I have had odd flashes of thinking of something and wondering whether it was real or did I dream it?  Did I talk about that to someone?  Did they tell me?    I don’t want the day to come when I am awake and the dreams are still real.   I mean that the people in my dreams are there in my waking, or the events in my dreams are part of the reality during the day.   When the day comes when someone starts arguing with me that what I have just told them is not real it will be sad.

Reality of Alzheimer's

So just don’t argue with me, I want to say now, my reality is not the same as yours okay!

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