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APPROACHING END WITH MUM : EVERY DAY IS DIFFERENT

Discussion in 'End of life care' started by Jezzer, Jul 5, 2018.

  1. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hi, Ive posted on various Threads, including my own "Still unable to come to terms" etc but things have changed so much so I've started another. Just to repeat; mum has Mixed Dementia and although nothing is imminent, she is at end of life now. I just need to offload please. Mum is now bed bound and carers have to attend to her every need, which she would hate. Sometimes there is speech but less and less. Always, apart from one occasion, when I enter her room, I am rewarded with a smile of recognition and more smiles when I tell her I love her. Today nothing. Mum looked at me as if I was a stranger. My telling her I love her resulted in frowns. I know how this goes but today for some reason, it's really upset me. I can't stop crying and, well, I just needed to "say" it to my friends who understand. Tomorrow may be better, I just never know. Thanks for letting me express this. Love to all x
     
  2. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #2 lemonjuice, Jul 5, 2018
    Last edited: Jul 5, 2018
    Fully understand no amount of words can 'help' with those feelings. The longer it goes on the more one seems to have exacerbated emotional highs and lows than ever before.

    So just sending a HUGE HUG. (((((((Jezzer)))))))
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,666
    Female
    South coast
    Yes, every day is different.
    Tomorrow your mum may well recognise you again, but its still tough on the days when she doesnt
    ((((((hugs)))))
     
  4. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,460
     
  5. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Oh @Jezzer, I’m so sorry :( I don’t know what to say really, but your Mum not recognising you today must have been awful. As you say, tomorrow may be different. In the meantime, sending you love and virtual hugs
    Lindy xx
     
  6. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thanks and bless you all. Just a bad day and I needed to tell someone. Yes tomorrow may be better xxx
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,918
    Kent
    I`m sorry too @Jezzer. It seems like a one sided relationship when we are no longer recognised by those we are caring for.

    I had many experiences like this when my husband seemed to look through me but they didn`t become permanent . As the illness progressed , even though he may not have really known who I was, he recognised my face and my voice , he let me hold his hand and lifted his face for a kiss.

    Please don`t give up hope . The may be a lot of truth in the title of this Thread. One day your mum may surprise you.
     
  8. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,460
    Oh Jezzer this must be an awful time for you, I know I am dreading it with my dad but you have stuck with your mum through this and still you come on here to help others. You are a truly good and giving person and I wish you lots of strength to get you through this time. This illness is so unforgiving and just serves to prolong everyone's suffering but you have continued to be kind and gracious to all on this board while at the same time caring for your very poorly mum.

    'Hat's off' to you for being there for your mum and us who understand and if you want to have a good cry then do so, you have earned it. I hope things get easier for you and your poor mum.
     
  9. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you so much @Grannie G. I very much appreciate what you've said. Yes mum may well surprise me. She's tough and she'd move heaven & earth to speak to me if she could. I feel so much better having shared about today. I was not seeking sympathy; I just needed to get it out and TP is the only place I can turn to. xx
     
  10. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Oh that is so kind of you to say and whilst I appreciate your lovely words, I certainly dont feel I deserve them. So many people here - like you - have been, and continue to be, kind and supportive despite their own suffering and if I can offer the same to others, it's the very least I can do. I've witnessed so many times a new person joins TP in enormous pain and despite what's happening with them, a natural urge kicks in with TP members to try and support that person and somewhere down the line, the new person will do the same. One of the many great things about TP and in a cruel and often grim world, it's certainly restored my faith in people. You are a wonderful daughter to your precious dad. He will not necessarily go through the same situation as mum so please don't dwell on that. Thank you again and I send you and your dad love and hugs xx
     
  11. kindred

    kindred Registered User

    Apr 8, 2018
    2,126
    My darling, she knows how much you love her. Tomorrow may be better. How we need these signs of recognition, how much we do. There is something so deeply human here, what it means to be a human being. You inspire that. You know I know sweetheart. All my love and thoughts. so good you could post this. Geraldinexx
     
  12. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you Geraldine. I know you know and that is such a comfort xxxxx
     
  13. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you so much @Carmar . I had to walk out of mum's room for a while as I never want her to see me like that. Held it together until I got into my car then boom. It certainly did hit and I don't really know why it was so intense. I knew this was coming and thought I'de prepared but I realise however you get clued up and brace yourself, the reality is totally different. I'm just getting that HUUUUUGE cyber bear hug and it's lovely. Thank you Here comes yours .............. Xxx
     
  14. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
  15. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    354
    Dementia poses so may problems by the sheer nature of the disease. In as much as we can never be wholly sure as to what are the perceptions or feelings which our loved ones experience. But the bond which exists between say, a mother and daughter, that remains intact. The 'mask' of dementia can promote confusion and a sense of alienation, when recognition fails. We feel suddenly 'removed' for the very first time, from the person we know and cherish. That can be very hard. It can be equally challenging when the one we love exhibits aggression directly at us, or even demands that you 'get out' of the room. And then, maybe a few hours later or less, a completely different 'person' is smiling warmly at you as if nothing untoward had taken place. This one sees every day in the Care Home.

    But somewhere, deep down inside, the authentic person is living their life. The brain has been damaged and the
    behaviour accordingly seems to contradict all of that. But as we know that all behaviour is by way of 'communication', even when aggression takes place, that is a very important fact to retain at all times. Dementia seems to enhance what might go unseen through 'normal' eyes. Posture, tone of voice, the way you walk across a room, all of these things are perceived through dementia eyes in such a way as to constantly surprise one. This is not always appreciated by Carers as they go about their duties, so often under much pressure. But it is a truth. So too with recognition or otherwise. The dementia dictates all the rules and you cannot object to it nor question it, simply because it will not understand.

    But then we come to something fundamental and very true. The innate power of humanity - devoid of any desire or self-fulfilment, removed from the mundane day-to-day pattern of life - a power which really knows no bounds, because it is ancient and timeless and it inhabits us all. It goes beyond the actuality of any disposition, event or the specific individual subject to dementia with all its implications. And when you take hold of someone's hand and help them up from the ground, it is there. When you see someone in distress, in whatever part of the world, it is there. It is there in the young mother's eyes when she tucks up her child in bed and when the grandmother cradles her baby grandchild for the very first time. And it is there also, despite the 'face' of dementia which might gaze upon you blankly or seem to ignore you, or perhaps reject you. Because it goes beyond all of that. It is profound and it is real. And even without words, when you take hold of a hand, frail and tender as it might be, there is 'communication' between you and that other person. Nothing can take that away.

    It was there, as it had always been, the morning my late mother died. In the early hours she awoke, as she always did, just a little frightened, her eyes closed, me in a hospital reclining chair beside her bed. And for a brief moment, with her hand held tightly in my own, she opened her eyes, looked at me and spoke clearly, calmly, meaningfully, as if the dementia had been somehow spirited away. Then, she closed her eyes again and her words became inaudible, as she lay back on her pillow, never to regain consciousness again. Her hand held in my own, until the end of her journey came to pass.

    Nothing can ever take away that innate truth, which exists even when viewed through clouded eyes. And there is tremendous comfort in that, because nobody can change it nor claim it as their own.
     
  16. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you so much @Hazara8 . Your words so profound, comforting and greatly appreciated.
     
  17. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Wow, tremendous post @Hazara8
    Thank you so much, you reinforce what I feel in my bones to be true xx
     
  18. yak55

    yak55 Registered User

    Jun 15, 2015
    614
    That's such a sad post jezzer, I'm so sorry.
    Sending you hugs x
     
  19. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you Yak. Sending hugs back to you x
     
  20. malengwa

    malengwa Registered User

    Jan 26, 2017
    257
    Thinking of you jezzer at this time. I don't have any wise words to add, I was lucky in that mum recognised us right up to the last few days really, and I will always hold dear the kiss she blew me as I left her for the last time, even then not knowing I wouldn't see her again.
    Hold onto those happy memories, I have wallowed in those since mum died and it's helped me a lot. But above all else know your mum knows you love her and take care of yourself , these days or weeks or months are so traumatic.
    Xx
     
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