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!

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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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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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.

Hearing and the changes I have noticed with Alzheimer’s

Today I had an appointment at Boots Opticians and hearing shop.  I wanted to have my hearing checked because I had an idea that my hearing was a little worse than about 6 years ago when my hearing was checked.

Turns out that it is mainly age related, my left ear having less sound range than the right, so no great problems, not enough for intervention with an aid of any sort.

Interestingly she talked about the way that Alzheimer’s affects the way that hearing is processed.  Imagine a room full of people talking, along with other sounds, and trying to focus on only one person in the middle of the room talking to you…very difficult.  That can be what it is like for someone with Alzheimer’s trying to hear normally.     I do experience this even in a quiet room, I am spoken to but I might be on the internet, or reading and somehow do not hear what has been said.  So I have to say  ‘sorry what did you say?’ over and over.  Irritating or what!

So my focus of attention needs to be on only one thing to process what is being said.  This is important for me and others around me to understand because when I am thinking; I have not heard, it may be that I have not processed what has been said.

She said I need to use change of behaviour to help any hearing problems, such as sitting with my back towards a wall in a restaurant so that I have no noise behind me.  Facing people straight on when we talk so that my focus is on their voice – easier said than done when I have difficulties in maintaining eye contact!

All in all I am pleased that my hearing has not got worse, and interested to learn how my Alzheimer’s has an impact on how I process sound.

Punctuation malfunction in my brain and my increasing fear of commas.

There are days when I notice my Alzheimer’s seems to be a bit worse and try to remember to record it for my Alzheimer’s Journey.

So, I will get an apology out the way first – sorry if my grammar and punctuation is all over the place but today my brain cells have gone on strike.

Cats woke us up extremely early at 6.30am – little darlings (smiling through clenched teeth :))) ), and I settled in my chair with my coffee to start reading a new book.

Right from the start I found I couldn’t understand the sentence because those pesky little tadpole commas seemed to be in the wrong place.  I read the first paragraph again slowly but it really did not make much difference.  As you know a comma in the incorrect place can put a totally different meaning on sentence but today for me, every comma seems incorrect.

As I write now I am having great difficulty in knowing if I am putting commas in the correct place and it has suddenly become a real issue.  I have no idea why I am stressing about it so much because if I stop maybe the fear of commas will just fade away again!

I am also misspelling words more frequently.  Being a touch typist I have no mental idea where my fingers are on the keyboard; I think and they transfer my thoughts by themselves.  If I had to think about where the keys are or how to form words I would fail to write anything.   Lately what I think is not what my fingers are typing, how can that be?  It is as if the diseased part of my brain has taken on an identity of its own, one which may be a little dyslexic and mischievous.  I can see words forming on the page that I have not even thought about and not even Freudian slips, but words that are incongruous.

I think sometimes that my macbook changes the words as I type and I fail to notice it which leads me on to how I read.

I am finding it really hard to read what I have written and with short term memory problems I usually have no idea what I have written minutes after writing it, so if it gets mixed up on the page I wouldn’t necessarily remember what I was trying to say.  When I am reading it back I am constantly questioning my grammar and punctuation but often than not I have no idea any more if it is correct.

I gave up trying to read my book earlier and thought I would surf the net.  I will read my own blogs from time to time because I don’t always remember what I have written and have a need to check that I have not made any major gaffs.  So, I looked at my latest book review – Broken Monsters, and was horrified to see that it was all over the place with spelling mistakes.  I am sure I proof read it before I posted it but guess now that I cannot trust my own ability to do so, which is why I  go back and re-read it the day after.

It makes me feel so embarrassed to make these mistakes for all to see because it somehow makes me less literate than I used to be (was I ever that literate!).

Dementia is such an insidious disease which is less understood than it should be.   As you can see I am not in the middle or later stages, but at an early stage so I am very aware of these small changes which I cannot do anything about.

Do you judge a blog by its grammar and punctuation?   I used to but now I understand that it is what people are struggling to say that is more important, but are people less likely to read a blog that has grammatical errors in even if the content is interesting?