having to face reality

Discussion in 'End of life care' started by Helen12, Jun 16, 2016.

  1. Helen12

    Helen12 Registered User

    Jun 16, 2016
    6
    My mum has Alzheimers and is at what I believe is stage 7. She doesn't know any of us, stares blankly, is incontinent (both ways), doesn't speak,stopped walking very suddenly in March and now seems to have forgotten how to swallow. She is in a good care home and the doctor saw her Monday . Her diabetes is bad and he has started her on insulin , also meds for high blood pressure. She spends a lot of time in bed , either sleeping or just staring. She is not my mum! I feel like she went months ago but I hate to see her like this and the effect it is having on dad (88 with Asbestos and on oxygen!) and my brothers is just horrible. It seems an awful thing to say but I wish she would just slip away! Her quality life appears to be nil but my dad and one brother seem to be holding out for some kind of miracle and keep thinking that's med or that drug could "bring her back". I don't know if its because Im the oldest or because the only female but I feel I have to be strong and more practical as I'm sure we are getting to the end.I know from reading the posts that a lot of you are there too, but how do we get through it while trying to remain upbeat and positive but knowing that she could go anytime?? How long does this stage last??Just being able to write down my feelings has helped, so thank you all for reading.
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,263
    Yorkshire
    Hi Helen12
    my heart goes out to you - what a sad time for your family
    I'm glad in the midst of all this that you have found TP as you're so right, somehow sharing experiences makes each of us feel less isolated in our own situation
    my dad isn't at this stage, yet, however many members know how this is, so I'm sure some will read your thread and respond
    now you've discovered this wonderful community, do keep posting
    best wishes to all your family
     
  3. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Oh poor you. Yes I do think us women do tend to take on more emotionally. My menfolk seem to be much more practical and say "It is what it is."

    How do we get through it? I wish I knew the answer to that one. Just putting one foot in front of the other and waiting till nighttime when sleep gives us some relief for a couple of hours. (Sleeplessness too.)

    No-one can say how long the final stage can last. I know my heart dropped when I read the seven sub-stages 7a-f, each of which can last 18months average and even then when they reach 7f can last an indefinite time.
    Keep on 'keeping on' is all we can do.
     
  4. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,108
    hertfordshire
    Hi, so sorry to hear about your Mum. It is not wrong to wish your Mum would just slip away, this disease is horrendous, nobody should have to suffer in this way. I have wished the same for my Mum too. We are constantly at the point where we think we are at the end only for Mum to keep coming back, it s so cruel. My Dad is like yours, he truly thinks there will be a miraculous new medication that will make Mum better. I have no answers. For you sadly, we were told most people can survive 8-10 years, well my Mum has had this for over 10 years now. All I can do is tell you we are all here for you, use this forum to vent your anger and sadness. Sending you a virtual hug(()) xx

    Ange
     
  5. Jaff

    Jaff Registered User

    Mar 28, 2016
    95
    Hi lots of hugs... and kisses.. I know what your going through.. going through it my self..... take Care love jaff
     
  6. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Am so sorry Helen. Try to get some rest if you can.. not always possible. Also please eat as you need to keep up your strength. People cope if different ways and it is so sad. They are doing their best. Your Mum is getting the best of care.

    Sending you lots of support and virtual hugs.

    Aisling
     
  7. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    308
    Helen I to am glad you have found TP. This is the one place I can actually say what I feel and know people genuinely understand.

    I have no words of wisdom but I just wanted to say I understand how you feel.

    Please take care of yourself and also be kind to self xxxx
     
  8. Helen12

    Helen12 Registered User

    Jun 16, 2016
    6
    heartfelt thanks

    I am so pleased I found Tp too. Its such a relief to know that I'm not a monster and that other people have and do feel the same way. When quality of life seems non existent I wonder what its all about, so thank you to all who have responded and offered support. i really do appreciate it.
    In terms of how mum is doing, the doc has reduced the anti psychotic meds and taken her off amiltripiline- no wonder she's been so out of it. We all thought she'd been taken off both ages ago. Hoping when I take my 130 mile drive to see her at the weekend, that there is a slight improvement in her awareness if nothing else.Thank you all again
     
  9. Helen12

    Helen12 Registered User

    Jun 16, 2016
    6
    thanks

    Thank you so much. You take care of you toox
     
  10. Helen12

    Helen12 Registered User

    Jun 16, 2016
    6
    Thanks for the hug- much appreciated

    Its such a relief to know that I'm not a monster and that other people have and do feel the same way and what a cathartic thing this forum is ! When quality of life seems non existent I wonder what its all about and thats what gets me the saddest and also feeling the most guilty!
    I live 130 miles away from mum and dad and twice weekly drives back and forth the same day are starting to take their toll on means that makes me feel guilty and rotten daughter too!Thanks again for the (virtual) hug, sending one back- you need it too.x
     
  11. Helen12

    Helen12 Registered User

    Jun 16, 2016
    6
    another hurdle to cross

    Mum been rushed into hospital with various infections and, they think, a bleed to the brain.I hesitate to ask "whats next" as for sure something else will be thrown in the mix but honestly this roller coaster has to end sometime. Don't know how I feel at the moment!!
     
  12. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,947
    Ireland
    Thinking of you, take care of yourself too.
     
  13. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    Thinking of you at what must be an almost unbearable time. Much sympathy and support, and wishing strength for you all to see this through x
     
  14. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Only posting to say, Hang on in there.

    Roller coaster it certainly is.

    Having been where you are now myself just over a week ago. My Mum just slept for 2 days. Every time it takes her slightly longer to recover than the time before.
    This awful disease doesn't just affect them but the whole family.

    Take care Helen12
     
  15. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    gentle suggestion

    Hello. I lost my mother on Feb. 28, and I fully understand your expressions about *when* is this going to end - for your parents' sakes and indeed for your own.

    I have just the gentlest of suggestions and hope you understand it comes from a feeling of compassion for everyone concerned . . . that perhaps it's time to talk with your mother's doctors about taking her off *all* medications and seeing how she fares. Sometimes the medicines keep our loved ones going long after they might have liked to have passed on.

    My heart goes out to you and to others at this similar place. I lived in this sort of place for about two months. It was very hard indeed. My mother died in my home, where she had lived for about 9 years. I still miss her, but I am ever so grateful she is no longer suffering as she was at the end.
     
  16. Helen12

    Helen12 Registered User

    Jun 16, 2016
    6
    lost mum yesterday

    Thank you everyone for all the understanding and support. Mum died yesterday morning after a horrible 4 days of suffering. Your words helped me though the most difficult moments when we were willing her to go. :(
     
  17. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,942
    North East England
    Hello Helen, I'm very sorry for your loss. The final days have been awful for you, but eventually that memory will soften. Try to think of Mum and talk about the daft, silly funny things she did, The caring, loving memories of time gone by and not the sad unhappy times recently seen.
    She is at peace, let yourself be too.x.x.
     
  18. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    412
    Thinking of you and your family today Helen12.
     
  19. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    Helen, I haven't responded to your posts but I have been reading them. Your Mum is now at peace and I am sure this is a relief even though your grief must be overwhelming. You have been strong for her and your family, just make sure you look after yourself now. Your Mum wouldn't want you to make yourself ill. I am sorry for your loss, I am waiting for the call about my Dad and have been since March. Such a cruel illness to the pwd and everyone round them.
    I send my thoughts to you and your family.

    Red x
     
  20. Julia B

    Julia B Registered User

    Apr 13, 2015
    80
    so sorry

    sorry for your loss Helen x
     

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