Dementia and the sometimes silence of my world

I was talking to Social Services the other day and was struck by how I lost my words.  This is not usually me, I can talk for England but this particular day I was really struggling, and realised that it was not an isolated day.

My brain registered this new ‘mini demise’ with curiosity.  Hmm, is my dementia progressing more than I perceive it to be doing?   I am comfortable analysing myself and what is happening this way more than worrying about what is happening.  If I was at a desk studying myself I could write it down and make a graph of very slow decline.  But, a decline nonetheless.

What does this say about me and my dementia?  Well, for a start it says my emotions seem somewhat unconnected with my situation.  Maybe fear of living alone and progressing without a certain future is what stops me from from associating with my illness, or maybe through dementia I am losing emotion.  It certainly is a coping strategy and one which works very well for me, thank you!

Oh yes, my dementia certainly has progressed a little.  I am simply unable to make rational or good judgements these days.  I can ask myself – should I do ‘this?’ or ‘that?‘ and the answer that appears is, ‘I don’t see why not‘.   And, that is a dangerous situation to be in.   How do you know who or what to trust when you have lost all manner of good judgement?  It’s all very well knowing what you should or shouldn’t do in a situation, but to stop yourself from making a bad judgement is virtually impossible when you have dementia and that part of you is broken.   Dementia makes all of us very vulnerable.

On the brink of getting involved in my local community for Alzheimers/Dementia awareness, I have missed the challenge of thinking about strategies and physical action of being involved.  Talking to other people on a different level, exercising my mind and it has had an effect I think.

I do have conversations with people, I have joined a local ladies club…which is probably not my sort of thing but I need to get out and meet people.  It is fun, there is a lot of chatting as people have lived in the town a while, cups of tea (people bring their own mugs, cakes and traditional meat and potato pie).  Bingo is played, and that is challenging for me!  I look at people playing five strips at a time and I struggling to keep up with three, but it is a place to go and mix.  They do not know I have dementia because I haven’t told them, I am not sure why.  I can’t say I look forward to going, but the mainly white haired ladies can be entertaining.

I don’t know if it is the same for others, but I realise I very much spend a lot of time within my own head.  Is it because I live alone and it can be a silent place to be?  I don’t mean by sound but by company, and if I had company I would probably long for the peace of my own space.  It is sometimes easier to withdrawer from the world than it is to pretend to be normal and I don’t know why I feel I have to.  Actually I think I do, the world hasn’t caught up with dementia being just another normal illness yet, and has no idea how to interact with it, especially in the North East of England where it is definitely not acknowledged yet.  There is some serious work to be done in educating people, services too; GP Surgeries or Psychiatrists/memory clinics do not appear to be dementia friendly, they have no idea yet….. The funds for this sort of thing falls far short in the North of England.  It is rural, but very family orientated so that people with dementia just remain in the family who have little knowledge of dementia.

Meanwhile I plod along, reading my books in my silent world, learning embroidery art, occasionally unpacking another box from moving and still trying to sort out my bathroom.

Author: Gill

I photograph things that take my eye. View all posts by Gill