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 dothis?’ 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.

IMG_0178-1
Creating and sewing before my move.

Author: Gill

I was diagnosed with Early Onset Alzheimer's in Dec 2012 aged 58 after 20+ years of memory and other cognitive difficulties. It was both a relief and a shock getting the diagnosis. But, I am determined to live a happy and productive life with this disease. Enjoy what I can do and push as much as I can physically, mentally and emotionally will always be my mantra :) My plan is to live simply, create a wildlife garden for birds and bees to enjoy when I can no longer garden.

2 thoughts on “Dementia and the sometimes silence of my world”

  1. Hello Gill. Tru here.
    wondered how progress was going for your new bathroom. Yup; several folks have mentioned concerns that my abilities have slipped a rung on the Ladder also. New adjustments for my “new normal”, LOL. (so i am writing about that also, to publish tonight after i put together a graphic). Love your self-analysis on emotions regarding new normal. But especially love the bit on decision-making. There is a blog in itself !! Love you, my friend.

    Like

    1. Hi Tru,

      Slipping a rung on the ladder is a good way to say it, not great to have but it is just the way it is isn’t it! We fight on though 🙂 The struggles encourage me to be stronger than I feel at times, but also to enjoy my life as it is now, and gives me courage to accept. You give me such a boost towards the fight for recognition of normality and I feel your love Tru and I feel so lucky to know you.

      My bathroom sadly is still mainly empty! I am really struggling to get an estimate to see how much it will cost to complete. Three workmen have come in and told me that they will give me a quote to say how much it will be to finish the work but not one has done that! I am at a loss for words as to why. It is hard for me to get the motivation to keep contacting them to find out why they refuse to quote for the work, or ask yet another Company to come and see if they can finish the work. You would think I am asking for the inside of a space rocket to be built instead of a simple shower. Just a shower, and a radiator in the bathroom. !! I just wish I had someone who could make those phone calls, chase people up and give me the support to get it done. Never mind, challenges help to make me stronger. Love you too, my friend.

      Liked by 1 person

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