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.

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…………….

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

Alzheimer’s: Dreams and beyond 🌏

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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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Apathy and the constant challenge of challenging myself!

Some days need more of a challenge than others as I slip into an uncomfortable numbness.

The hot humid summers days have cooled. I welcome the coolness outside having hated the heat which exhausts me, but with the coolness and the humidity comes the pains in my joints especially my shoulders right now, but ok I can take a paracetamol, after all you can’t have everything.

Its Monday morning and I get out my medicines to fill my weekly box and blow me, guess what, I have forgotten that I needed to collect the remainder of my Rivastigmene from the chemists!   Good grief, have I not just gone through this a short time ago.  So, not only did I forget to order my prescription, which came in two parts, I have forgotten to pick up the remainder of it , how could I not have remembered that one?   I was going to write ‘what is wrong with me’ but thats laughable.   

The past few days I have been feeling apathy and something I can’t quite put my finger on and feel upset with myself for not overcoming it.

Maybe I am feeling apathy because I have allowed myself to sink into a routine that is so comfortable it is not challenging?   Maybe, my brain is just having a rest, maybe its part of Alzheimer’s depression (I don’t remotely feel depressed or less than happy).   I have somehow not phoned my family, friends, or kept up to date with anyone.  I realise that for me sometimes it is a real struggle to do these things, how do you explain that I can get ‘scared’ to make that call, or chat.  I don’t understand it myself only that once I do it, all is well, and I think what was all the fuss about.  

One thing I know, keeping positive is a challenge on a daily basis, and somedays I don’t manage so well.

Yesterday whilst the weather was on the edge of turning into rain, I took my camera out to take some photo’s and to check what the farmers had done to the field next to us.  For the past few days our eyes have been watering and we are told that they have been spraying lime on the fields and unfortunately the wind has been in our direction.   Having listened to the tractors early in the mornings I thought they had been ploughed but see that they are working through the patchwork around the marina spraying.   

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Last year the fields were planted with potatoes, this year oilseed rape, I wonder what will be in there next year?

Not a great start to my exercise regime!

So much for trying to get fitter with a daily walk around the marina.

Day 3:  today I feel exhausted and have no energy and realize that I cannot walk today.  Thought I would have some lunch and perhaps then walk a little way, rather than doing it all.  Made some lunch; a sandwich with Gluten Free bread, and promptly fell asleep, it is now 4:20pm and I have just woken up knowing that today I am unable to take that walk!   

Maybe I did too much on the first two days, maybe I have to remember that I have fibromyalgia and that my Alzheimer’s also affects and limits what I can physically do sometimes.  Damn them both!  I am waiting for my pedometer to turn up in the post so that I can measure how well I do on the days I can.

I will show them as tomorrow I have hydrotherapy at Derby Royal Hospital and will exercise them both into submission in a nice hot  pool.

 

There is no such thing as good days or bad days, it is just that some days I am able to do more than others.

Onwards and upwards 🙂