not for resus?

[robinw]

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Dear robinw, I am sorry to hear about your mum and the dilemma that you have been put in.Unfortunately these mega-questions of life and death always come to us when we are least in a position to be able to answer them.I think you should carry on with your original instructions because you based these on your knowledge of what your mum would want.From what you say she did not suffer another stroke so the question may be irrelevant in that the situation of resuscitation will not arise.Her condition may improve or deteriorate in the coming days,weeks or months but you can always reassess if you feel that she is suffering or the situation has changed radically.My thoughts are with you both.

robinw - poor you and I am so sorry to hear about your mum.
Can I add one thing, and this is from listening to my dh talking about resus, as he worked on a Care of the Elderly ward for a year.
He said once that once people are as old and frail as you Mum sounds, there is only something like a 1% chance that resus will work. The resus process is degrading and undignified and then doesn't work. He was of the opinion that people who were given resus were deprived of a dignified death, of having the family round them, and that the family in the end were more distressed by the failed attempt than they were by the fact the person was dead.
I know you are talking about IC rather than actual resus at the moment, but if she was ill enough to need IC then resus may likely follow.
You have to do what your Mum would want, but I thought it was a good idea to give you more of the facts.
All the best to you and your family, and thinking of you.

this must be awful for you robinw losing my grandmother a few months ago I can appretiate how you want everything done that can be done no matter how poorly they are you want them to get better. Also being a nurse I understand the clinical implications. Resuscitation in the frail and elderly is often barbaric,undignified and often end up worse off .families get very distressed when resuscitation is discussed but it is important find out what you and your mums wishes are should the need arise. It is only early days yet you have to take It one day at a time as it can be tough.

robinw, lots of sympathy to you. There is no clear cut answer to this is there? And the burden of the final decision falls to you. Taking things from day to day seems to me the only course of action.

You say your mother is very frail, but is there any chance of talking to her again about the prospect of resus or further treatmen? do you thing she might then change her own views? If she is so afraid of dying, would it help her listen to someone trained in counselling the elderly?

When my mother became very ill`and lost her power of speech, I knew she could still understand what was happening and so I felt I could still understand what she wanted. Sometimes it was difficult for me to convey this to her nurses. Kind as they were, they believed they were dealing with someone who was not that aware of things. I felt she was more aware than they assumed. Natural really.

By and large mum, I and the nurses felt the same way about things but I do have some regrets over one decision in which I took the nurses advice over my own gut feelings about what my mother wanted (she agreed to the action at the time, but then was unhappy with it and we had to reverse it). However I came to realise that no decision would have felt 100% right. I think the only thing that helps is to try to keep communicating right to the end and to keep seeing your mother as a person, not just a patient.

robinw, my FIL had Parkinson for 20 years , lived a ver full life until he hadand a stroke, unfortunately SIL wanted him resussed, it was a barbaric and unkind thing to do, he was 89 and had had enough. She then kicked herself everyday until he died, saying why did I do it?

My DH sat with him one day and FIL sat up in his bed and said clear as a bell "LET ME GO" he knew, and that's what he wanted. So DH told the nursing staff no more medication or interference, the next day when all three children arrived at his bedside at his bedside, he smiled and then just slipped away. It was so calm and pleasant for him and all concerned.

I know how you feel, it was awful while FIL was in hospital, the staff were wonderful, but food was put in front of him, he couldn't eat it as he didn't have the strength to feed himself, so it was just taken away untouched, he couldn't wash or shave himself, so we had to do it and it was so unfair on him, he hated everyone having to do this for him.

it is not an easy decision to make, especially as it's your mother. My thoughts are with you, take care.

I remember someone who'd been through this telling me that she'd discuss this with her nearest & dearest while she was still young to avoid it happening to her/her family. most of us feel uncomfortable talking about death but I'm sure would want a say, even if speech was beyond us when the time comes. robinw do you know what worries your mum about dying? being on her own? pain? or the actual death? lots of love at this very difficult time, to you & your family

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robinw , please dont feel that the doctors dont want to treat her much longer, that's really not how they feel. What you all want for your mum. I'm sure, is for her not to suffer, and have a dignifed death. "No heroic measures", and a comfortable end with her family is the kindest option.

robinw, I am off to Switzerland tomorrow, but I shall be thinking of you, it sounds as though you have got some very difficult issues to deal with over your mother morally and emotionally.

It is all very well for us to say what we think, but you are having to cope with it, be strong, we are with you in thought.

Robinw - thinking of you

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Robinw, my thoughts are entirely with you. I can't add any constructive comments as I have not been in this same situation - my father died in 2000 but of a sudden heart attack, not old, etc. so I never had to deal with this kind of situation.

I think the hardest thing for you is that your mother doesn't want to die. It must be a lot easier when you see they have suffered so much (if they have had a long and protracted illness) and you (and they) know that it is "for the best" (as much as these things can be "for the best". It must be so much harder when she feels that she is not able to let go (although this isn't necessarily the time to let go) and it must be so difficult for you as you are now having to make decisions that you don't want to have to deal with and it must be hard to see your mum like this.

Sorry, I have waffled a bit - and what I have said seems complete nonsense - but I wanted to add my thoughts let you know I am thinking about you. I am just not very good at putting into words what I would really want to say.

robinw, I think your mum is very lucky to have you, you sound like you're being a real tower of strength and willing to do the best for her even though that makes it harder for you. you're in my thoughts.

Robinw I'm so sorry about your mother. We had to make the same decision for my father, four years ago. Although he was 91 he was still interested in life but would never talk about what the future held. He eventually 'had a turn' and became very ill indeed, but lingered on for another two weeks. At that point the hosptial asked what our wishes were and we were unainimous that he not be resussed. He didn't want to die but nor did he want to live in that state. Just once when semi-comatose he said something like 'I want this to end' which could have meant that he wanted to die or that he wanted the illness to end somehow. My mother observed that really, it would have been better if he had gone the day he had the turn, because the next two weeks were pretty hideous.

By that time he was so sick and the writing was on the wall so that it would have seemed the ultimate cruelty to have made him go through such an awful process again. The day he died I went into his room that morning and couldn't help blurting out to my mum "Dear God, you wouldn't keep a dog alive like that." And it wasn't as if he was in pain or distress that we could see, he'd just reached the end of the road. Even so, when he died that evening I did almost ask the staff to resus him but I think that was selfishness on my part, I didn't want him to go.

No one can advise you on your mother but hopefuly these stories will help you come to a decision and of course, you can always change your mind, later. But from my experience I suspect you'll know when enough is enough for your mum. Thinking of you.

Oh robinw, I'm so sorry to hear this. It sounds very, very difficult. If your mother is still conscious in some way, can you ask her what she wants? I don't know, is that realistic? This must be awful. Is there any way it could not be just your responsibility though, can you get the rest of your family to talk and agree something that you can all live with? I really am thinking of you: as you know my dad died 18 months ago - the difference is that he had accepted (he said, is it ever possible though, we can't know can we?) that he was going to die and said he was ready. Once the readings on the monitors started going down we knew that it was nearly all over and that the doctors wouldn't do anything as there was nothing that could be done. In your case though maybe, if she's improved a little, there is and you could leave this decision for a little while if possible? Much sympathy.

Robinw, so sorry to hear what you are going through. What a very difficult decision to have to make, much sympathy from here too.

This is such a difficult time RobinW, I don't think that any decision you come to will ever feel like the right one all the time. My mother died in March 99 after fighting cancer for the second time. She knew she was ill and so did we, but she was the type of woman who didn't want to know just how ill she was, thinking that ignorance was bliss, although I guess deep down she had an idea. I always knew in my heart she wasn't going to pull through this time, but was still taken aback by how quickly the end came.
The night before she died was the last time she was coherent. My sister was staying the night with her at the hospice and they were talking into the night. My mum without any warning suddenly said "I'm dying aren't I?" to which my sister replied that the doctors were doing everything they could to help her. Her response to that was to say "Please dont let me die". The depth of responsibility that left us was enormous. We both knew that she wasn't going to make it, and even thought that it would be better for her to go quickly as her condition was only prolonging her suffering and ours, watching the woman who had loved us, fed us clothed us though a lot of hardship without ever complaining, turn into this tiny little skeletal sparrow who weighed no more than 5 stone riddled with pain. She died the next night with her family holding her.
Three years on I still feel pangs of guilt that I could do nothing to help her, that she begged us not to let her die and we were not able to do anything, yet I know deep down it was best that she went when she did. I guess after all that I am saying that whatever decision you come to will be for the very best of intentions, because of your love and compassion for her, but you will always wonder "what if?" because it is only natural. I'm sorry if this is a bit long.Good luck in coming to your decision.

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I noticed you hadn't been around, Robinw and wondered how you were doing. I'm glad you have been able to talk a bit with your mum. Has the hospital asked you/your mum if she wants antibiotics for the infection? They asked us if we wanted them for my dad and also when FIL was near the end, about 12 yrs ago. In both cases we declined but if you feel differently then it isn't a massive intervention like resus.
Thinking of you and your mother.

I'm so glad you've been able to talk to your mother, robin, at this difficult time.

You say she told you she saw no light the last two times she was near to death - I wonder if you could ask a bereavement counselor, nurse, doctor, hospital priest - anyone you trust and can get hold of easily - if there is a comforting answer you can give her about this to try to set her mind at rest. I'd imagine for those who encounter very sick people, it's an issue that has come up before.

Thinking of you, and hope you can grab some good moments with your dh and dd.

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Good luck and thinking of you robinw.

best wishes, robinw. thinking of you at this difficult time.