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……………………..

 

 

 

Alzheimer’s: Dreams and beyond 🌏

treebuttfly

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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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

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.

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?

 

How do you educate the world about Early Onset Alzheimer’s/Dementia – one group at a time?

I thought about the meeting with the pilot group for Early Onset Dementia and Alzheimer’s on Saturday and how it made me feel and now I have had time to mull it over, I can think about it a bit more dispassionately which is what I need to do.  (Please see the last post for details).

Firstly, am I over reacting? Yes I am, but it is true that many people working with professional bodies; statutory and non statutory, such as the Alzheimer’s Society need some education for their workers. I understand how easy it is to fall into a role of; support worker, organiser, being a person who is outside of the disability or target group, and focus group of the particular organisation, but that does not excuse the organisation from being educated to understand how to ‘walk in the shoes’ of those they wish to support by listening more and organising less.

What were my expectations? Sadly I think my expectations were a little too high for my own good! I should have expected less and maybe would have been content with how the meeting panned out. After all it was a pilot to find out what people wanted.

I have always been adamant that my hubby is NOT my carer he is my husband. I cannot think of a time when someone will need to care for me, and right now my present is important for me to wring every last drop of control and living well out of life. I cannot imagine him deciding what I would like to be doing right now, I have my own ideas and they are definitely not the same as his.

I know my last post focussed on individual conversations and did not elaborate on the bigger issue for me, so I thought I should balance that up so that you can understand exactly where I am coming from.

My issue is with the lack of education about Younger Early Onset Dementia/Alzheimer’s. (I think my next blog will be about the difference between the two so don’t go too far away).

Because Alzheimer’s and Dementia is being diagnosed much earlier than it used to be the Support world needs to catch up. Before, people were diagnosed with dementia only when their symptoms were blindingly obvious and by which time they were not able to understand that they themselves had a problem. This is about what is normal for each individual person, what is normal for one person is not for another, so someones difficulties must be outside their own normality. At this stage the family will be heavily involved (hopefully) in getting a diagnosis for their sibling, parent, spouse, child and also they may well be signposted to the world of Support organisations be it in the medical or voluntary sectors. That is when the services of Alzheimer’s Society has been a wonderful support for those families as a whole.

Today, diagnosis can be much earlier, right at the beginning of Alzheimer’s Disease, sometimes with only mild cognitive impairment (MCI), and as such may not be classed as dementia. The labels do not really matter because basically they are all under the same umbrella of dis-eases in the brain.

You walk out of your consultants room with this devastating diagnosis feeling absolutely shell shocked. You have no questions to ask yet, so are given a leaflet if you are lucky about alzheimer’s disease and dementia. You go home to start the first day of your life as a different person with a terminal disease. You may only be in your 40’s, 50’s or 60’s when you should be looking forward to the rest of your life planning what to do with family, work, or retirement.

This is where the services for people with Early Onset Alzheimer’s/Dementia (EOAD) fail because there is practically no provision. The only groups organised by many organisations are for elderly people and their carers in mid to late stages of dementia which is not appropriate for EAOD.

I started to search the internet for anyone who was like me, who I could talk to who understood how I was feeling and what life was like for me and found several wonderful people in online groups who chose to allow ONLY people living with the disease. I found the Dementia Alliance International, Facebook groups and joined them all. I have become involved in Dementia Mentors a group who can talk one-to-one online with newly diagnosed people to give an honest view with how to live well and positively with the disease. We are people from all corners of the world and I am so grateful to have them as friends. These groups are for those living with the disease in its many forms and are organised and run by the same people. I have been given a voice, and I am not a patient.

We all look to educating anyone we can about EOAD, to understand that we need support but we need to be empowered to do it ourselves.

When I was at the meeting with the ALZ Org I realised that they just did not get it. They had no understanding of Young and or EOAD, probably because they were so used to people with more progressive stages of the disease. They are used to organising people and activities to what the carers have said their partners have enjoyed in the past.

Working with Younger EOAD is different because we can mostly communicate well, and our intelligence is not affected, and we NEED to be in control of what we are doing until we no longer are able to. We need to live normally with our dementia the best way we can making our own decisions, we need everybody to LISTEN to what we are saying, understand what we are saying and not dismiss us to talk to our partners.

Partners do have a role to play in groups we attend for medical or social events because a lot of the time they drive us there, they support when we are there and support us at home, but primarily this should be our group, and there is no reason they cannot support each other at the group. I guess I am saying there is nothing wrong in have two separate sides to a social group, living with dementia on one side, carers on the other, coming together at times and respecting each others voices.

I am going to try and make a difference to the group that met through the workers who got it so wrong on the day. If I don’t try then nobody will learn anything.

Wish me luck as I feel it will be a hard slog and long process.

Thanks for listening.

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