Confused about ability to communicate during late stages

Discussion in 'End of life care' started by Ardnas, May 20, 2016.

  1. Ardnas

    Ardnas Registered User

    May 20, 2016
    6
    Hi

    Mum was put on an end of life care plan last week and we are devastated although we knew that this day would come as she has deteriorated since entering the CH in December last year.

    SALT have now said that she needs her drinks thickening which is like feeding her jelly! She is still eating a little although being fed. She is awake and talking although incoherent most of the time. We have decided that it is best for her to remain in the care home where she is comfortable and familiar.

    The GP cannot tell us how long it will be before she passes, but as she is almost skeletal with no quality of life we are praying it will be soon we could not bear it if she were to linger for long in this state.

    We sit with her and chat about our childhood and hers and she can hear but looks at you with that blank stare.

    What is really upsetting is that she still keeps asking Can I go now and saying I want my mum. Last night when I stood up she said dont go and leave me as plain as anything I stayed until she had her night meds and was asleep. Is this normal that suddenly from being incoherent they will make perfect sense at this late stage. Mum also has MS and currently her body is very rigid and she is having difficulty swallowing.moving and speaking all of which could be MS or dementia. When we arrived she was staring into the corner of the room talking incoherently and didn't appear to recognise us although she held my hand tightly and wouldn't let go.

    Has anyone else had experience of this?

    Thank you
     
  2. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,942
    North East England
    Yes I have. You are, in my opinion, doing the kindest and hardest thing a daughter can do. You've made sure Mum is comfortable and pain free. So you sit, hold her hand. Talk, laugh, remember. Include her in the conversation....as in " do you remember Mum, when...." but don't expect an answer or you talk around her her to whomever is there...." did you watch x last night?"
    Life and death go hand in hand.... Don't fret if she does not want to eat, her body does not need the energy now. Give her a drink if she needs one and can swallow, moisten her lips if she cannot.
    And tell her that she can go now, thank her for her love and for bringing you into the world. If she asks for her own mother, tell her that she is waiting for her to come home.
    If it is her time to leave, she will not be long in departing this life. Let her go in love and peace.
    I sat in your seat last year... it hurts....but the end comes to all of us eventually.
    Thinking of you...Maureen.x.x.
     
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,570
    Merseyside
    Welcome to TP :)

    I'm sorry about what you're going through with your mum. My mum mumbled a lot at the end interspersed with the odd very clear comment.
     
  4. Ardnas

    Ardnas Registered User

    May 20, 2016
    6
    Thank you Maureen

    That helps more than you know, It's so painful to hear my mum asking for hers, but I will do that tell her she is waiting for her to come home and that it's ok for her to go if only I can get the words out without breaking down.

    I want to be there when she passes, do you think the CH will tell us in time to get there?

    Amelia
     
  5. Ardnas

    Ardnas Registered User

    May 20, 2016
    6
    Thank you Maureen

    That helps more than you know, It's so painful to hear my mum asking for hers, but I will do that tell her she is waiting for her to come home and that it's ok for her to go if only I can get the words out without breaking down.

    I want to be there when she passes, do you think the CH will tell us in time to get there?

    Amelia
     
  6. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,942
    North East England
    I sat with my Mum for many hours....many many hours over the three years that she was in the CH. I left her at about 10pm. The CH rang at about 5 to 6 am, but she was gone before I got there shortly after.
    Mum was still warm, but she had left us. I opened her curtains and told her "Go with God". The Phillipino Lady who was the Night Senior had dressed Mum in clean PJs and had put her wooden cross into her hands and told me that she had been there with Mum at her passing.
    I sat with Mum until the undertakers came. Different members of the Day Staff came and went. There was laughter and tears and hugs. I rang my sister in South Africa. my Aunt, my OH. Life went on around us and it was good.

    It did not matter to me if I was not there for her final moment. All the pain and anguish had left her body. She was at peace.

    Peace is good and peace is kind to all concerned, I wish you and your Mum Peace.x.x
     
  7. Ardnas

    Ardnas Registered User

    May 20, 2016
    6
    Thank you
    Amelia
    x
     
  8. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    My mother died in my home, with me holding her hand. For the three or four days previous to her death, when she *could* speak, she would say, Okay, take me home now. She would try to get up sometimes, even though she hadn't been able to walk in months. I'd ask her what she needed, and she'd say let's get my coat, I'm packing to go home now.

    I'd take her hand and tell her I'd like to help her but I was afraid I'd get lost. Couldn't we wait til daylight, so I could read the road signs.

    Then she'd calm down, but sometimes she'd ask to go home in a different way.

    I truly believe it was her way of saying she was ready to die, and I was glad she was finally released. The last weeks were an agony of time - and then, once she was gone, I thought it all happened too fast . . . .

    I'm sorry. This is the most loving and hardest thing you'll be doing.
     

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