My dear mother is close to the end after almost 10 years.

Discussion in 'End of life care' started by JeannieJ, Mar 23, 2019.

  1. JeannieJ

    JeannieJ New member

    Jan 6, 2019
    I don’t know how this writing will be received. My mother is getting very close to the end now. She is in a Nursing Home and I have heard she is delirious and uncommunicative. She cries out for her mother and has even gone back to her former language, which she has not spoken in 50 years.

    She is suffering and I, her daughter, who loves her with all my heart, cannot go see her. I am terrified to see her in this state. It’s been ten long years and I have tried to help to the best of my ability but I cannot go there now. I cannot watch her suffer and die. I know I am not up to this.

    I know people will say I should go, but I am afraid if I go I will break down completely. My health is not good at all. Several years ago I had a mild stroke and there have been other issues as well. It is all I can do to hold myself together now. I cry frequently, I pray, and I try to hang on.

    I have a real fear of dying and of funerals (goes way back) and I also just don’t want to see her suffering. I don’t think she recognizes anyone now and she is sleeping (mercifully) most of the time. Other family members go see her but she does not communicate. I guess they are stronger than me.

    I know in my heart that I love her dearly and that she would (if she could) tell me that it is okay not to go. I know she always knew that I love her dearly. But, I feel awful and guilty for not going. I try to force myself and I panic.

    I dont care what people will think or say because I knew and she always knew that we were very close (best friends, really) all our lives. But I feel guilty anyway.

    PS: I hope my words made sense because I am very upset as I write this.
  2. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    East Midlands
    My heart goes out to you. Honestly there is no right or wrong way to do this. See my posts. My mum is on end of life care at the hospital. I’m not going to lie, it is a horrific experience. She is still on a ward & it must be horrible for everyone to see her like this.
    The syringe driver was put in on Tuesday & to be honest, no one expected her to still be here on Saturday but she is despite severe Vascular dementia & Alzheimers, the infection that she came in with, severely reduced kidney function although she is still producing urine, aspiration pneumonia as well. She hasn’t eaten or drunk much for days & still she is fighting.
    We didn’t see eye to eye much but she is still my mum & I love her but this is hard.

    I hate hospitals. I watched my dad die 19 yrs ago & felt that I didn’t have a choice in that because my mum wanted to be there & I had to support her so I well understand your fears. Don’t be afraid to post.
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hello @JeannieJ
    there's no need to justify yourself, and there are no shoulds - you need to do what is best for you - you can change your mind if you wish
    you have stood by your mum, you have made sure she is well cared for and you know she understands you

    I would only say, in your heart feel for yourself that you will not look back later and think you might have done anything differently - plenty of 'what ifs' will cross your mind anyway - I've found that I am content as I am certain sure I did everything I was able to for my dad and I too know he understood me and forgave my limitations

    best wishes to you both
  4. lis66

    lis66 Registered User

    Aug 7, 2015
    Sending (((hugs ))) to you xx
  5. Karen22

    Karen22 Registered User

    Nov 3, 2012
    Don't feel guilty; listen to your heart and what your mum would say to you. It's such a difficult time.
  6. JeannieJ

    JeannieJ New member

    Jan 6, 2019
    Thank you for your replies. I am sorry for taking so long to answer. I dont understand what is happening to my mother.
    It has been over 5 weeks now that she is unable to stand, talk or eat. And she cannot talk and yet they say it is delirium. How much longer can they do this? They will not do Hospice because they say she has a 1/3 chance. Chance of what? I am so upset. She is suffering ... and yet, they say no to hospice. I asked about Palliative care and they say they dont know if she is in pain. Of course not. She can't tell them. She has congestive heart failure for 12 years now. I feel powerless as my brother is running this whole thing and he is in some sort of denial. If I ask him anything, he just says "wait" ... wait for what?
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    (((((((((((((((((((((((((hugs))))))))))))))))))) @JeannieJ
    Your mum is in a nursing home which is probably the best place for her.
    My mum passed away in her care home and I would not have wanted her moved to a hospice - much better that she stayed in the place where the staff knew her. The nurses aught to be able to tell from her reactions when she is in pain - they were able to tell that my mum was in pain even when she was semi-comatose and unable to say anything at all.

    If she has delirium then she may not be at end of life - delirium can often improve, although it can often take weeks if not months. Even if she were at end of life, this stage can go on for much longer than you would normally expect - the body shuts down slowly, often over several weeks.

    I know that you are finding the waiting difficult, but unfortunately it is probably all you can do at this time.
  8. Ray96

    Ray96 Registered User

    Sep 29, 2018
    My mum lost 10kg in a couple of months, she was refusing most food and drink, went from 60kg to 50kg. She was given a month to live when in hospital last October and sent home to die. She is under the hospice. None the less she started taking some liquid food again, then shakes, some soup, water, and five months later she is stable and a lot calmer, the Mirt did the trick in her case.

    End of life can be a rollercoaster ride when our loved ones have late stage alzheimer's, I was close to organising the funeral three times last year, and yet here we are, looks like she's going to celebrate another mothers day after all.
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I knew by the expressions on my husband`s and my mother`s face when they were in pain. My husband was in pain when personal care was being administered. Surely the care home staff will know if your mother is experiencing pain when they handle her for personal care. Perhaps if you ask them they will be able to reassure you.

    Hospice care is often unavailable for people with dementia because the end of life stage can be so variable in length. Most hospices only have the beds to offer short term care.

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