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……………………..

 

 

 

Author: Gill

I read books and review them. Books are my escape. I have always loved books. I write a blog, I get involved where and when I can in things I feel that are important. I also have Alzheimer's Disease but it does not define who I am. I am in the early stages so you may not notice. So, I will tell you how it is.

10 thoughts on “Travelling with Azheimer’s”

  1. I feel your anxiety as I read about your journey dear Gill. Glad you made it and enjoyed a chilled celebration with Claire. I am sure this will help others to understand and think twice. Much LoVe, KarenX

    Liked by 1 person

    1. Am looking forward to Claire moving back to Greenwich next month hopefully, love it there. She is so good she usually meets me at Euston and takes me to her flat, but I so wanted to do it on my own for once. I will keep trying! Love to you all, and wishing you a good 2015 x

      Like

  2. Gosh, you’re so brave setting out of that type of journey changing trains and so on. I used to get more than a little anxious negotiating London’s Underground trains in the late 1970s when I first arrived in the UK, so I can only imagine how you might feel with the Dementia clock ticking away.

    I’m so pleased that you managed the trip safely and had an enjoyable Christmas, but it’s certainly a long journey and maybe someone needs to accompany you next time.

    I kept getting confused on Christmas Day trying to pour drinks & offer nibble food, be sociable to a new friend of my brother and keep an eye on my 88yr old father that…….. in the end, I just asked the ‘new’ friend to help me in the kitchen and hoped that my brother & Father were entertaining each other. I only socialise once or twice a year and I really can’t be a hostess any more. The ‘new’ friend used to work as a Carer of the elderly so she was brilliant at not overloading me. She ‘channelled’ my thoughts on what needed to be done and anticipated what I might want done as the meal progressed. I’d set the table 2 days before and put every non-perishable food item and kitchen utensil out in a row the night before so I didn’t have to think too much. And I don’t have early onset Dementia (that I know of) like you do.

    I stopped taking my B12 a few weeks ago (to save money) and my memory is really slipping. I’ll have to buy some more and reduce expenditure elsewhere.

    I sympathise with your anxiety. As long as people understand your condition it’s OK and they can offer to help.

    But when people tell me to stop being ‘silly’ (with my anxiety), I feel like strangling them !

    Liked by 1 person

    1. Good to hear your thoughts Vicki, I am so pleased that your new friend was able to help you through it, she sounds quite sensible and caring. I hope one day you will find some help for your difficulties. I know my medication helps my symptoms. I agree with you about people saying not to be silly – anxiety is not something you can switch off. I hope 2015 will be a year of peace for you.

      Liked by 1 person

  3. I recognize the Alzheimer’s related anxiety you describe so well. Reading your description of your experience reminds me to be more understanding when my husband voices reluctance about traveling out in the world. Thanks for your brave and articulate sharing.

    Liked by 1 person

  4. Thank you. The thought of travelling about, even in places you know well can be daunting sometimes. Before Christmas I was with a friend in a store shopping and had to leave because it suddenly got too much, too many people, too much noise. Its hard when someone has known you for so many years to adjust to your new difficulties when they arise. I think she was a little confused by me wanting to get out so quickly.

    Like

Happy to hear your thoughts...

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s