1. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    It occurred to me today while watching mum at the care home that it's like watching the lights go out in a previously lively city. Her spark has gone.

    I imagine her brain is having light switches flicked off and every time I see her another switch has been turned off.

    The carers say she can change from hour to hour. From shuffling around exploring (or searching?) to slumped motionless in a wheelchair.

    We used to spend all day walking miles, shopping, having hot chocolate in caf├ęs. She was the one person who knew me inside and out. I loved spending time with her. My best friend.

    While I sat on my day off, drinking my hot chocolate, all alone. I missed mum because she should be with me, giggling and gossiping.

    It occurred to me that a huge light is being flicked off in me too.
  2. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    Oh I so understand that feeling, Anongirl :( xx
  3. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Nice metaphor you've made, I'm sat with my wife on the other side of the sofa and everyday another light goes out in the Christmas tree of her personality, eventually no more lights just a bare twigs with a heap of pine needles lying under it, yes, it will have taken a toll on me & our children. My mother died with AZ so I kind of know the script, doesn't make it any easier.
  4. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    A very apt description, AG. That's exactly how it seems. xxx
  5. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    My Mum is running out of candle light now..... and I'm flickered out!!:rolleyes:

    You know I had three children of my own, I childminded for 10 years and I have 6 grandchildren now. :eek: I have watched the years roll back with Mum as her skill sets have failed. I guess she's about a 9 month baby stage now...she can stand if helped, walk with her ( baby) roller and one person on either side for two or three inches. Eats with her fingers, drinks from a sippy cup, soils and wets unknowingly.
    The main difference between her and a nine month old...is that a nine month old gets pleasure from life......and Mum struggles on, waiting to die.

    It is such a sad end to a life fully enjoyed.....and just as sad for those of us who witness it standing helplessly by.

    Sorry to be so depressing...I'm feeling a bit blue today.:(
  6. Strafford

    Strafford Registered User

    Jan 19, 2015
    Sending you hugs.... having a "statue" rather than a "pigeon" day with it all here too x
  7. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    I had an extraordinary moment with my mum when a light suddenly switched back on.

    I was on one of my day-long visits and as you describe, there was no interest, no communication on her part, just a blank black look in her eyes.

    In order to find something to talk about and make another few of those hour-long-minutes pass, I picked a craft book off the CH shelves. At least I could turn the pages and talk about the pictures.

    No response as usual...until we came to a knitting pattern for a baby's bonnet...and it was like pressing a switch on Mum. She grabbed the booked and started talking to the baby, smiling and kissing the photo. I remember just sitting there in total astonishment.

    I'm not saying your mum would respond in that way, but don't give up hope. The library is a good source of large books with good photos covering a vast array of subjects.
  8. Ladybird23

    Ladybird23 Registered User

    Feb 28, 2014
    When we went to see Dad yesterday his "light" was out, fast asleep. We woke him and the smile on his face when he saw me was so wonderful and that will be with me forever!
    He grabbed my hand and held it tight. Took all the strength not to sob.

    He also had a fascination with my sister's coat that was lying on the floor.
    Then he was asleep again. Hopefully dreaming nice things. :)
  9. irishmanc

    irishmanc Registered User

    Jan 14, 2015
    Like you, Ladybird, my Dad now sleeps more and more. It is definitely like watching a light slowly fade out. It's great when he wakes up & recognises me or another family member - like his whole face lights up. There's still a small occasional spark in there somewhere...
  10. angecmc

    angecmc Registered User

    Dec 25, 2012
    Just so true AG sending hugs xx

  11. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    I know what you mean. Mum was led into the lounge at the CH yesterday and she looked like a small child. Some of the other visitors looked at me with a sort of pity in their eyes. I found that hard. Very hard. I tried to act normally and put my arm around mum but it upset a great deal. I can't thinking about it xx
  12. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    I know what you mean Chemmy, a week ago mum was sat at the table when I walked in and her face lit up when she saw me. Those visits make it all worthwhile. She will usually try to engage in conversation when I mention the children but sometimes there's just nothing there.

  13. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    Ladybird and Irishmanc, mum always seems to know me even on bad days. Sometimes she squeezes my hand. She often says my name even if she can't say anything else. I always whisper "I love you" in her ear and sometimes she can say it back.

    These are all the little sparks that hold us together aren't they? They are the only things that stop me dissolving into tears at times! Xxx
  14. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    Thank you all for the support. It's hard not to feel alone sometimes. Even in a room full of people xxx
  15. Sue J

    Sue J Registered User

    Dec 9, 2009
    You are not alone AG but it does sometimes feel like it but that also shows our feelings are not always the be all and end all, very consuming though they can be at times. Your Mum knows when you're with her I'm sure. XXXX
  16. Ash148

    Ash148 Registered User

    Jan 1, 2014
    Dublin, Ireland
    Hi Anongirl, another light switched off for me and my mum today too: for the first time, I don't think she had any idea, or cared, who I was. She's often been unsure which of her three daughters I was, but today I not only might have been a stranger, but she couldn't be bothered to acknowledge me. Poor mum, she's still fighting will all her might, but the lights are going out nevertheless. Our poor mums and poor us watching it happen, helplessly.
  17. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    Thanks Sue. I do hang onto that xxx
  18. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    I know that feeling. On New Year's Day mum sat in a wheelchair with her head down. She didn't acknowledge me and had no idea who I was or why I was there. I felt terrible. The day after she was sat eating biscuits at the table and greeted me with a lovely smile. Now I just expect the unexpected.

    I hope your mum has a better day the next time you visit. I always hope for a little light now, however dim xxx

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