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An emotive subject

Discussion in 'End of life care' started by Emily M, Dec 30, 2015.

  1. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    I watched my mother die in October. She had severe Alzheimer’s and an unspecified infection. It was suggested by the medical team treating her that she might be allowed to “slip away” by withdrawing the antibiotics and saline drip. With the Alzheimer’s and also not being able to walk anymore after breaking her hip the previous month, her quality of life was very poor. It would have been her wish not to continue in the state she was in. We were told that she may not respond to antibiotics and may not survive the night. As a family we made the decision that treatment should be withdrawn. But she did not die that night. With a strong heart and lungs she lingered for another 6 days. She was on morphine but this was withdrawn as they said she was not in pain. I did moisten her mouth as she seemed thirsty. The last words she said to me were “Thank you.” They say is didn’t suffer but who really knows what is going on in the mind of someone with severe Alzheimer’s?

    I have had a while to think about our decision and I can’t help feeling a sense of anger that the onus was put on us as a family to make the choice as to whether my mother lived or died. Let no-one feel that what we did by withdrawing medication is so very different than giving my mother a fatal dose.

    This year Parliament rejected the bill to allow assisted dying, we are told against the will of the nation. Of course if the bill had been passed it would not have helped my mother as she would have to have been of sound mind to make the decision to end her life. However, if I could make the decision now, whilst I still have my mental capacity, between lingering on and instantly falling asleep I know what I would choose and I know what my mother would have chosen.
     
  2. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Im so sorry that you had to go through this and that your mum did too. Your only comfort is that you did what your mum wanted and also that you were strong enough to see it through. I watched my dad die of cancer and 100% agree with you. I hope these memories are replaced by better ones some day.
     
  3. Emily M

    Emily M Registered User

    Jan 20, 2015
    178

    Thanks Quilty. I am sorry that you had to see your Dad suffer too. Awful for families to see their loved ones like this. One always hopes for a quick end. We are beginning to think of the good times that we shared.
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I understand what you are saying. I think the family are best placed to make the decision . I also had to make a decision on end of life for my Mum and I wouldn't have wanted anyone else to have made that decision for me - I think usually the family, especially if they have been carers, know best and when my turn comes I have been very clear with my children what I want - and I would want them to make that decision because then it is made out of love xxxxx Yours was too and I am sure that your Mum loves you even more (if that is possible) for supporting her right up to the end. Thinking of you xxxxxxxxxxxxxx
     
  5. betsie

    betsie Registered User

    Jun 11, 2012
    253
    My dad lasted 19 awful days once all drips were taken out. His legs were rigged, he developed sores and literally gasped for every last breath. I was also asked to make the decision to withdraw treatment.
    He was on a continuous morphine driver and many times over those 19 days I wished I had the strength to push the whole dose in ( I could have as the case was broken) and put him out of his misery. I would not have let my dog suffer like my dad did. If i could have legally ended his pain I would have done it.
     
  6. Emily M

    Emily M Registered User

    Jan 20, 2015
    178

    Thanks fizzie, I know we did the right thing.
     
  7. Emily M

    Emily M Registered User

    Jan 20, 2015
    178

    Thanks for having the courage to reply betsie. I do feel for you and agree with what you are saying.
     
  8. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,522
    Ireland
    My late husband developed aspiration pneumonia at the end of May and as the nursing home couldn't get hold of me in time, they had to make the decision to send him to hospital where (again, because they couldn't get hold of me) the doctors revived him. He'd never been hospitalised before, so there wasn't a DNR on his file. However, that illness took so much out of him, he was no longer able to swallow much. It was the beginning of the end. After talking with the doctors, he was sent back to the nursing home with no further treatment, but with all medication on hand to keep him comfortable should it be needed. He died in the nursing home at the beginning of August.

    The proposed assisted suicide legislation was also defeated over here. I have to say, at the risk of playing devil's advocate, it is a double edged sword. I can understand the love behind wanting to end someone's suffering, even when it means letting them go. It's agonising to watch someone die, for days or weeks.

    However - and I know that this is what swung our Government against it. There are so many vulnurable people, elderly, disabled or very ill, who might not want to end their lives, but who may feel, if assisted suicide were legal, some subconcious pressure to go that route, in order to save their families or the State the huge costs in both money and stress, of caring for them. The legislators here felt that it was better - safer - to vote against it, so that no vulnurable person would ever feel that they should end their lives because they were costing too much.
     
  9. betsie

    betsie Registered User

    Jun 11, 2012
    253
    I think each case should be decided on its merits by family and doctors. If a person with advanced dementia forgots how to swallow and all treatment is withdrawn death is certain. I think in cases like this a person should be helped along more quickly to avoid unnecessary suffering for all.
    I never realised that death could be so traumatic, I thought, hoped, that after his 10 year fight with this evil disease he would slip away peacefully in his sleep. He fought to the end and those last hours were like something out of a horror movie. I had to leave briefly to collect my daughter from school ( which is when he died) prior to this I had, had a very emotion discussion with the head nurse who called the palliative team down while I was gone, maybe they did give him a helping hand.
     
  10. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    I understand the arguments for both sides. I also understand that some doctors may be very reluctant to administer the "coup de grace".

    The point with my mother was that we as a family were being asked by the medical team to sanction the "coup de grace" by withdrawing medication. Anyone not given antibiotics and fluids by intravenous drip in her situation whether they are 8 or 80 will eventually die.

    There is the argument that if the law is changed people may be coerced to end it all as they are "a burden". Assisted suicide would only be for people who are terminally ill and close to death. The case of my mother rather turns the argument on its head. Nobody said that she was terminally ill, only that she may not respond to antibiotics. She may well have lived longer - we will never know. If she had been able to speak and was asked the question, "Do you want to be treated or left to die?" she probably would have said she wanted to be treated, albeit in her demented state. Had she been asked the same question 3 or 4 years ago before she had Alzheimer's, she would have said, "Don't treat me if I am in that situation, but please let it be quick." To be blunt she had actually said, "If I get like that put me out of my misery."

    We as a family actually assisted my mother's dying by another technique - withdrawing medication. I have no guilt for agreeing to this, as in the circumstances it was the "kindest" option available.

    Like you betsie, I do sometimes wonder if there is a helping hand given by the medical team, as the medication is at their discretion within the guidelines.
     
  11. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    My beloved mum is in her final weeks. I live 200 miles away but come up every 3-4 weeks and have done for the last 18 months since she became bedridden. You don't need me to tell you about zero quality of life for end stages Alzheimer's patients and their family. I have listened to her agonised screams and pleas for them to stop as the carers have changed her and cleaned her due to deep pressure sores. Total respect for all staff at the nursing home. She can barely see, hear, eat or understand. She has not been out of bed since March, not even to be showered. There has to be a legal way forward of ending this intolerable suffering.


    Sent from my iPad using Talking Point
     
  12. Emily M

    Emily M Registered User

    Jan 20, 2015
    178

    Sorry to hear about your Mum LeedsLass. Sorry for everyone in this situation and the greatest respect for the wonderful nursing home staff. I agree that there has to be a legal way forward, but somehow I can't see it happening any time soon.
     
  13. wobbly

    wobbly Registered User

    Feb 14, 2012
    313
    Mid Wales
    We lost my Dad on 22nd, funeral is tomorrow, he had advanced dementia but was just still mobile, otherwise needed total care, he fell and broke his hip and on admission to hospital had pneumonia. We had to fight to get him back to his nursing home using the LPA route as they wanted to keep hm there. The care at hospital was non existant as they were so busy, we fed him and gave him drinks, all the did was change him. He had been on intravenous antibiotics for five days with no response, pneumonia worsening, getting more agitated, was i pain with his hip which they surgically fixed and then gave him efferescent paracetamol for pain! The day after he came back to the home the GP came to pre warn us how ill Dad was but we knew and two days later the GP and nurse decided he was really end of life so they started a syringe driver with diamorphine, sedatives and something to help chest secretions, that was friday, Dad lasted till the tuesday morning but I think aspirated on the saturday which would have hastened things, it took a lot to sedate him and was awful to watch, my Mum couldn't cope and we took ner home and we took turns at staying over with him, the last 24hrs were a relief for all of us I think but I so know what you mean about us feeling we had to almost decide for them make that move and start end if life care. With a miracle Dad would only ever have got back to being like he was before he broke his hip, doubly incontinent, on thickened fluids and puree meals, agitated a lot of the time.....he would have begged us to help him die and I would have helped him, but it was so hard to see him go right down, I wish I could have cuddled him and spooned a little drink into him and for him to have slipped away in my arms, in half an hour max....not just for him but for us too...
     
  14. Emily M

    Emily M Registered User

    Jan 20, 2015
    178


    Wobbly, your story is similar to mine and I expect similar to many other people's. I hope the funeral went well. In time I am sure, like me, you will begin to recall the good times you had with your father. Best wishes.
     

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