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Ever decreasing Circles

Discussion in 'I have dementia' started by Norrms, Feb 16, 2017.

  1. Norrms

    Norrms Registered User

    Feb 19, 2009
    Torquay Devon
    My world is getting smaller week by week. It has been for years but sometimes you can sense it. What i mean by this is losing your life skills, as well as your social life getting smaller. I am so grateful to have so many "Virtual" friends, so very very grateful, but heres just an example of what i mean

    I used to go to lots of quiz nights, but because of my sundowning i am unable to do so anymore. Close friends are going to one a week at the mo and we would dearly love to join them but cant because i`m not well enough at that time of day / night, i feel,as if i am losing half my life because after a certain time, most nights anyway, not all, i am unable to go out, and on the nights where i dont have a bad night, this illness is so unpredictable you never know when, or what time sundowning will happen, so frustrating!!

    i often sit here at my computer, trying to think how i could improve things, how i could change things for the better, and at every turn it seems dementia is there with a huge stop sign, Every street, every road seems to have a diversion sign on with " Lewy Bodys This way" Some People say ,

    You are so lucky you have lasted so long and are so well with it.

    "LUCKY ?? LUCKY ?? Since when was having an incurable terminal disease LUCKY!!

    I am so grateful i have had this time with my family and friends and i hope it lasts as long as possible, but i am a realist and know nothing lasts forever, a forgotten skill here, a missed conversation there, a misunderstanding of what once, would have been so simple to understand, all these things make your world get smaller, ever decreasing circles as they say, until the day comes when i am unable to do much.That day gets closer each day, each hour each second, and there is nothing i can do about this, the feeling of helplessness is so overwhelming at times. I have always been fiercely independent and have always championed the "Underdog"

    Funny how life turns out isnt it ?? Or is it ??

    Norrms, Diagnosed with dementia 9 years ago aged just 50, shrinking slowly

  2. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    I am so aware ( now) of how your particular version of Dementia causes you distress because you have such insight into how you are affected. You have taught me so much about the impact of LBD.

    I had not realised, however, until my late Mum developed Mixed Dementia, how much my world would shrink. Mum was affected physically and mentally but she actually became less aware of the amount of caring she needed quite quickly. My OH and I had to totally adapt our lifestyle ( and to an extent that of our family too) Some of the changes became permanent; eg a house move to be within walking distance rather than a 20 minute drive. Our friends and OH's pub nights ... gone due to same house move. My nights out at the much loved quiz....gone. Our caravan.... gone ( huge waste of money due to not being able to stay overnight). Holidays....gone, weekends together to visit family.... one of us had to be here. I ( stupidly ) refused surgery on my spine because they could not guarantee success and there was no one to take care of Mum ( she would not have permitted outsiders to care 24/7 while she lived at home) and now am permanantly troubled.

    It is amazing how one person's illness, can have such a huge impact on the whole family. I don't blame Mum, she did not ask for this to happen, but I, like you and Elaine, blame the evil monster that is Dementia.

    There is one really good thing that Dementia has done for me...... it brought TP and friends like you and the others, so dear to me now, into my life...... and for that, I shall be eternally grateful.

    Keep fighting the good fight Norrms, give my love to your dear Elaine, love Maureen.x.x.
  3. Norrms

    Norrms Registered User

    Feb 19, 2009
    Torquay Devon
    Thank you Maureen and will do xxxxxxxxxxxxxx

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