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……………………..

 

 

 

Dementia: ‘Communication’ – a post you should read

There are some blogs that are of immense importance to the education of the general public.   How would you understand what it is like to live with Dementia unless we tell you?

Nobody is immune to this disease and it is scary to wonder if you will be next to start noticing that things might not be right.

Truthful Loving Kindness (her legal name) is one of a growing number of inspirational people who work to bring awareness of living with Dementia.  She is a lovely person whom I have talked with in a Memory Cafe online with Dementia Mentors.  Her blog is very informative; she has worked hard to make it so.

Her latest post is about communicating with someone with dementia – forget what you think you know, read this to understand more.   To read this excellent post click below:

Truthful Kindness

I hope you will find it educational and beneficial as much as I did.

 

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!