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

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?

Caring for people living with Dementia across the world

I have to share this with you….

There is a lot work being done for people living with dementia throughout the world which needs to be shouted about as WONDERFUL

There is a blog I follow which is inspirational at least, that I would love others to look at, to read and to understand how truly wonderfully caring people can be.

The website is ADN – Alzheimers Dementia Namibia – please take time to read through the posts especially this one  Ndjinaa 

I am in awe of these people and think this site is so important because it shows the breadth and depth of care around the world.

Alzhiemer’s and the lack of memory to order prescription medication!

There I am carrying on as normal. la la la la la ……and then get up on Monday morning and find I have 3 tablets left of my Alzheimer’s medication!

On Monday’s I usually get all my medication drugs out with my weekly drugs box and methodically fill the day boxes, morning and evening with the medication that I take along with my  vitamins C, D, and E.

I find it easier to to sort out my medication on a Monday morning because it feels like the beginning of my week.  No longer working, each day is the same so often I have no idea what the day is.  Is that a problem or a symptom of my Alzheimer’s, no idea but I reckon it is the same for many who have retired.  When you don’t work the weekend is much the same as the weekdays and it soon merges into weekdays other.

So come Monday morning I know that my weekly routine is to get all the drugs and vitamins I take and on a tray and fill my daily boxes, but found to my horror that I had forgotten to order a prescription and had only 3 tablets left.

Yeah yeah yeah I hear you say what’s the big deal.  This is the medication I take for my Alzheimer’s and although it will not ‘cure’ it, it prolongs its affect on me (hopefully).   It says you should not miss a dose…actually why would I want to miss a dose?   No, I want to keep taking it so as I can prolong my demise as long as possible.

Forgetting to take my medication is a factor of this disease!  Forgetting daily routines is a symptom of this disease.

I asked for an urgent prescription, and collected it this afternoon.   I asked about having blister packs being made up for my two prescription medication to make it easier for me to remember, but somehow the pharmacist failed to understand.  “Yes but if you put it in daily boxes, it is easy to remember to take it?

I don’t know; she is being rational but it is hard for me to say:  ‘look, sometimes I find it hard to remember to take them, maybe if they are in a blister pack, which is bigger than my small weekly drugs boxes would help me remember’.

‘There are apps you can download on your phone’, the pharmacist said ‘to remind you’  My immediate thought was a phone noise irritating the hell out of me, but not necessarily making me get up and immediately take my medication.

I might pursue blister packs because it means I will not run out of my medication because I only have to remember to order them once.

Goodness, it should never be hard to remember to take/order medication but reality is that it is for someone like me.