1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Sara-Jane

    Sara-Jane Registered User

    Aug 31, 2005
    5
    Somerset
    :confused: I havent posted for a while things have gone from very bad to alot worse. For those of you who have read my posts before heres a refresher, my 56yr old mum has a rare for of AD which has been described as a cross between motor neurones and MS. She is now permantly in a nursing home, bed ridden, incontinent, not eating, screaming and shouting constantly as she can no longer talk and is permantly on a s/c drip (which we have been told is her life support). We have had a meeting with her drs and they have told us that we have to make a decision - take her off the drip and let her slip into a coma within the week and then peacefully pass away or keep her as she is and let nature take its course. What an impossible decision to make on one hand i dont want her to suffer anymore but on the other hand how can i live with myself knowing that i helped to kill her, i know that is not the way to look at it but how can you look at it any other way when i look into her eyes and see mum staring back at me. I am pulling my hair out, one day i can wake up and think right i am going to agree to removing the drip and then i sit and think about it and bottle out i stuck at crossroads and really dont know which way to go.
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Oh Sara Jane, what a truely awful dilema. No one can advise you what to do, but whatever your decision it will have been made with love and compassion. Please try not to torture yourself, but ask, if the position were reversed what you think Mum would do.

    My prayers are with you. Take care, Connie
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Sara-Jane,

    All I can say, is that we're here for you, little help that that may be in such a terrible situation. Thank-you for posting this because there will be others like you who have to go through this (I have often thought that I maybe one day in this position too and have wondered what I will do :( ) who may find it comforting to know they are not alone. This must be very hard for you though, right here right now.
    You love your mother so much, I can see that in your posts, either decision when it is made will be based on that. I like to think that one day Dad when he is gone will be able to look down on me and see how hard I tried to do the right things and will love me for that with no earthly judgements to be made, he will know how much all of this hurt for me and will want me to stop hurting because he will be okay then.
    My thoughts are with you, your decision will be what is best for your mother, because she has her daughter's love with her always.
    Take care,
     
  4. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Sara Jane

    Well, with some trepidation, I'm going to bite the bullet and say 'let her go'.
    (And I know that a lot of people here are going to think I'm a wicked & callous person to say such a thing)

    Of course you're tortured by the situation, and it's a dreadful decision to be asked to make, but is this tormented person still really your mother? Is there any shred of her original personality still recognisable, apart from her face?
    Look into her eyes again, Sara Jane; if you really think you can see your Mum, isn't she pleading to be released from the insane limbo she's trapped in?


    I'm desperately sorry for you both, and I hope my cold, stranger's appraisal of the situation doesn't hurt you, but I think that would have to be my decision in your circumstances. And I say that as the daughter of my AD-mum. "There, but for the grace of God ..."
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Courage failed me but the post that I wrote then deleted was so, so similar to Lynne's.

    Lynne, a cold stranger would say "don't do it", because they have no cause to care.

    We know differently.

    I would give my Jan peace in such a situation. And of course would always have to live with the decision because it is irrevocable. But I would know it was right for her. And damn anyone who would say otherwise.
     
  6. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Sarah Jane,

    This must be such a difficult time for you and your family - my thoughts are with you.

    You might want to take a look at the Society's Position Statement on palliative care:

    http://www.alzheimers.org.uk/News_and_campaigns/Policy_Watch/palliativecare.htm

    These are such difficult decisions, with conflicting emotions, it can be helpful to know what the Society's position is.

    Take care,

    Sandy
     
  7. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    #7 Rosalind, Oct 26, 2005
    Last edited: Oct 26, 2005
    Dear Sara Jane

    Did you ever talk about this sort of thing before she was ill? Did she express any views on people in a vegetative state, for example?

    Are her screams those of anguish?

    If you were her, would you want to stay as she is, or check out?

    Whatever you do, you are going to feel guilt. Everyone feels guilt when someone dies, about all the things they could have done or said.

    But it you do decide to stop the drip you will not have been responsible for killing her. The disease is killing her, and medical science is only slowing up that process.

    I think I know what I would do, and what I would want done to me, but you need to be certain in your own mind that what you are doing is best for your mother, which ever way you decide.
     
  8. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Dear Sara Jane,
    I feel so very sorry for you: I think we all hope and pray that we never find ourselves in that position! You should not have to bear the responsibility of that decision on your own.
    Your post, and Rosalind's reply, have reminded me of the Living Will I made many years ago, and I don't think I have ever mentioned it to our now grown-up children: it is based on my opinion that if life is only sustained by artificial means (machines, tubes, medication, drips etc), without reasonable hope for a recovery to a fair quality of life, then the medical team should make an informed decision not to prolong the agony (for the patient AND relatives alike!). I would not want my husband or children to have to make that decision though. They should be consulted, of course, but I would hope that they would also be advised and guided - and reminded of my wishes!
    This is not going to make it any easier for you, Sara Jane, but our thoughts and prayers are with you, and I wish you strength in whatever you decide.
     
  9. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    I would also say from the sound of your post Sara Jane, letting your mum go maybe the best thing for her and you both. Don't feel guilty for any of this.

    I will now say for the sake of wanting the other side represented as usual... a person who chooses to keep their loved one alive should not be judged either if this is based on their personal knowledge of what that loved one wanted, their day to day feeling as to what their loved one is trying to communicate with them (what do their eyes say each time?) or it can be part of their whole way of life/religion. This is an individual case by case situation.

    I do not suspect it applies here, I agree with everyone who has posted, please don't take offense, I am aiming at no one and just putting it out there for those in the opposite situation where nurses and doctors are pressing them to let their loved one go and there are reasons as to why they are not ready.

    I think I've worded this okay....?
     
  10. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    It seems to me that if the drip is keeping her alive and turning it off ends her life, that she will die naturally. It is the medication that is keeping her alive unnaturally. I would like to think I will be able to let my Mom go knowing that she will finally be free of this disease and in the next life, herself again.
    Bless you and be at peace with your decision.

    Debbie
     
  11. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    When enough is enough

    Hi

    My husband David drew up a Living Will with our solictor when making our Wills when he was diagnosed with AD in 2002. He has given specific instructions on not being artificially kept alive with life support, resus or medication etc. The one thing he wanted to avoid when the time comes is for me or our son Mark having to make the decision of when enough is enough. This is just typical of David, the caring, thoughtful and very organised person that he used to be.

    Katiex
     
  12. mandyp

    mandyp Registered User

    Oct 20, 2004
    150
    Glasgow
    What a heartbreaking decision. I agree with everyone here, please don't feel guilty I know that whatever you decide will have been with your Mum's best interests at heart. It's a really horrible decision, but with my Mum, have to say, I think I'd feel that she's suffered enough. I would also say (and I don't mean in any way to belittle the situation), but we have pets put to sleep when they're suffering in order to release them from pain.

    It's also as everyone said, without the drugs your Mum would have slipped away by now. I'd also agree that it's a good idea to try to imagine what your Mum would've wanted.

    Sorry, can't be much help, but thinking of you.

    Mandy
     
  13. Sara-Jane

    Sara-Jane Registered User

    Aug 31, 2005
    5
    Somerset
    Thank-You

    I would just like to say thank-you to everyone who has posted a reply to my last post, i was very touched by the comments Thanks again.

    I know that if my mum knew the state she was in that she wouldnt want to go on anymore but it was a taboo subject, we never spoke about it, when she was first diagnosed and we mentioned AD the subject would be very swiftly changed. Mum was a very private person before she was diagnosed as a kid i cant ever remember hearing her say "Im just popping to the loo" and now that she cant do anything for herself is heartbreaking so i honestly do think she really wouldnt want to have lived this long with this awful illness let alone as she is now.

    I know what the answer to the decision is - let her go, but i cant bring myself to say it out loud I have got my dad so im not on my own but he will not budge he says that because every now & then she smiles that she is responding to us but im not so sure, again this is now a taboo subject and when it gets brought up the subject is yet again changed. How can i possibly begin to tell dad that my decision is to end her suffering when he is still struggling to come to terms with mums illness and he believes that he will be killing her. im stuck i dont know what to say or how to say it without offending my dad.
     
  14. Dianne

    Dianne Registered User

    Sep 5, 2005
    17
    Flintshire
    Hi sarah jane

    we 'let my dad go' just over a year ago. It was very difficult and i did feel guilty (I suppose it;s hard not to) but probably the best thing for dad. The hospital asked us to make a choice either wait (he'd had a massive brain haemorrhage) for nature to take it's course and the bleeding would just get worse or take everything away and let him slip away. we chose to let him slip away and it was very peaceful, we said our goddbyes and let him know anything he'd missed, updates on the family etc, we were with him at the end and he looked as if a weight had been lifted from him.

    Whichever choice you make will be hard but I'm sure you will make the right one for all of you. My thoughts are with you.

    Dianne
    x
     
  15. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Dear Sara-Jane

    Can you imagine hearing your mother saying "Please keep me here as long as possible by whatever means" - or can you imagine her saying "Please allow me dignity and peace"?

    I can't think that any of us would want our lives to be extended artificially in this situation. I certainly wouldn't, and have written an Advanced Directive in the hope that I will not be forced to live longer than I would want in physical or mental distress and with no quality of life. I have discussed this with my doctors and my sons, and they are all aware of what I would want, and that they need not feel any guilt.

    Yesterday I discussed this issue with my husband's consultant at a Care Policy Review meeting (my husband is in an NHS Dementia Unit and is at a late stage of AD). I have made it clear that my husband is not for resuscitation if, for example, he should have a major heart attack or stroke. The issue of medication, for example if he were to get pneumonia, was also discussed.

    Many years ago I had to decide whether a very dearly loved elderly relative who had dementia should be given antibiotics for pneumonia. Her quality of life was non-existent, and I decided that antibiotics should be withheld. The doctor pointed out that if it was not her time to die, then she would pull through, although I knew that the chances of this were very small. She died peacefully a few days later, and although I grieved deeply for her loss at the time and for some time afterwards, I have never felt guilty, or felt that I did the wrong thing for her.

    You are faced with a decision which you will make with love. Whatever you decide, you should not feel any guilt, as it will be the right decision.

    I will be thinking of you.

    Ruthie
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Sara-Jane

    The crux of your situation is your Dad.

    You have two people to care for here. He must be in agreement with any decision regarding his wife as, if only in legal terms, he has the responsibility. If anything were able to be done without his agreement [and my belief is that legally his agreement would be necessary] then it could seriously affect him.

    There are many sides to the "should we/shouldn't we" discussion. Mostly people tend to centre on the 'rights' of the person who is ill, and certainly they do have the rights. Often the rights seem to take precedence over the needs. And anyway, what right? The right to live - or the right to die with dignity?

    But also importantly, there is the effect on close family. Too often the debate is couched in terms of a family placing its wishes in front of the needs of a sick relative. Whichever way: to say 'yes' or to say 'no'.

    The responsibility for a decision is huge.

    I have thought long and hard over the years about my Jan. Before her illness it was easy for me: if their quality of life is, as far as we can determine, nil - then let them go.

    Once I had someone so close to me so badly ill, I thought over and over. At night, towards the end of her time being at home, when I had seen her in torment all day long, I would wonder whether I should put the pillow over her head. That shows how close to the end of my tether I was.

    Yet that was never really a serious question for me.

    But sometimes you have to test yourself to understand your true beliefs. It is also something that is the least possible option because the person, when asleep, looks perfectly normal once again, and of course they are totally defenceless.

    Since Jan has been in her care home, a number of other Early Onset residents have come, and some time later, they have died of an infection or of heart failure. I have seen the grief of their relatives [as we are all 'in it' together, relatives of residents become quite close] but have always thought "if only..." But Jan seems stronger than any of them, including very fit younger men who have just...gone.

    But even now, as I have to lie alongside Jan on the floor each day since, recently, she has lost the ability to crawl, while I still think 'I wish something would take her from all this', I also see that odd smile [and they are becoming less and less frequent] and think 'it wouldn't be right' 'what will I do after?' 'How will I feel?'

    If the doctor said - and I know they can't - "I'll just give her this jab and it will be all over" I think I'd say no, to hang on until I am completely sure 'Jan' is gone.

    When the ultimate happens, my belief is that I will feel relief. For her. For me. But also immense grief.

    I have a new life to build and I am desperate to get at it, as time marches on for all of us, but I must not let my massive wish to be getting on with that [and my guilt at not being able] to affect in any way how Jan's time concludes.

    The decision is forever, not just for discussion.

    ...these are all just a husband's thoughts/agonisings
     

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