I have one other question. The hospital have advised us that they feel that my mum should not be given antibiotics should she suffer another infection or pneumonia. They feel that her quality of life does not warrant any treatment that may make her suffer more. Therefore their advice to us is that she should just be made comfortable if this should happen.
Has anyone made this type of decision? My mum never set our her wishes for us so we have no idea what to do for the best. Somehow it feels like it would be giving up on her to take this advice but at the same time, I don't want her to suffer
Cate
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CateT
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It's a tough decision to have to make No-one can really tell you what to do for the best, you just have to trust your instincts. I think the thing to do is ask yourself honestly whether you want her treated for her sake or for yours because you're not ready to say goodbye. What ever you decide I know you'll do the best you can for your Mum.
Hello Cate, is it really such a dilemma? You and your family have to ask yourselves, what quality of life has your mother got.
It is so very hard to let go, I know. When my own mother was suffering and dying from cancer many years ago, as a very new young mum, I wanted so desparately for her to live and see my newly born son, but in the end, she did not survive.
It takes a long long time to rationalise and come to terms with your emotions, but you do and you eventually accept that suffering does not make us noble or a better person and, if it can be alleviated, it should be.
What a huge decision for you to make. I feel for you. God bless your mom and may the decision be taken from you by things taking a natural course. We had advice from the Hospice where my hubby attends Day Centre. They advised us to put things in place for this eventuality some time ago, when Tony was able to make his own decisions. Reading of your dilemma now I am so glad we listened to their advice. My heart goes out to you and your family, but whatever you decide your mom would never judge you, and she would hate knowing that you are struggling with this situation, because as a mom myself, I can think of nothing worse. Take care my dear and try to stay strong. You will know in your heart what to do and no one will judge you, whatever you decide.
Hello Cate. I feel your nightmare because a few weeks ago during a scare with my husband, the GP's at his care home asked us for our end of life decisions. This was never a subject Eddie and I had ever taken the time (or had the courage) to discuss. Anyway, after some research, taking advice from the medics and talking to his daughter, we decided that we would not ask for a peg but just let nature take its course. What would be the point of prolonging things for someone who is only going to get worse, who has such a narrow quality of life as it is? What I deperately needed reassurance about was that he would not suffer or be in pain or distress. They assured me that if there were any signs of thirst they could supress it, any signs of pain or distress he would be given morphine to relax and settle him comfortably. And then let him fade. I'm crying just writing this because as we all know on this site we must anticipate the inevitable but must find the strength to face it. As Kathy so rightly says, we must make the decision for our loved one, not for ourselves. Never think you are giving up on her.
Hi Cate....I feel for you having to make this decision not knowing what your Mum would want. In your heart though you probably do know....I doubt she would want to suffer any more. Fortunately Frank & I had already discussed this whilst he was still able. In fact we had both made an Advanced Directive a few years ago when we made our wills. We also discussed PEG with the relevant nurse in plenty of time & Frank had very definitely said NO. Although it was hard at the time I'm so glad we did it. He also said he wanted to be at home so I made sure he was. He was never in hospital apart from trips to A & E. District Nurses were always on call & medication was here if he needed it. I know it was the right decision for both of us.
My thoughts are with you....you would not be giving up on her!!!!
Having lost my first wife to CJD a rare brain virus I think you have to make a decision your mom would want. One bit of advice, when my wife was in the last stages (couldn't eat) they installed a cath tube and an IV of basically fluids. This keeps the patient hydrated and comfortable near the end. Without a cath and fluids she may be under duress. Perhaps someone medical could comment on this (hydration and cath). My wife was struggling without the cath and fluids but once they set them up she relaxed more and eventually passed somewhat peacefully within three days.
Jimbo
We have had the same recommendation given to us for when the time comes that infections are repeating. Given the huge set back mum has after every infection I know she will have had enough if they become continual because she fights back so hard each time. I have already mourned the person she once was and feel that I would rather she had one good day or week than months of misery and feeling rough only to go anyway.
There is no real quaility of life if you are feeling ill all the time- think how you feel when you have a fever or flu. Would you like to be constantly feeling like that? Then you will know the right decision. I wish you well. Dianne x
Thank you everyone. This disease seems to continuously put difficult decisions in our path. My mum has a PEG. I can now see that without it she would have left us already as she barely eats anything by mouth, but I am not sure how good it is that she is still here as she has no quality of life at all.
Hi Cate , less than 2 weeks ago we were faced with the same decision when my brother got a chest infection and a kidney infection .He had refused the peg on numerous occasions and was barely able to swallow . We spoke to him about not treating the infection's and he gave us a thumb's up . That night he was fitted with a morphine pump and he passed away peacefully last Wed . morning aged 61 .. We will always love and miss him but we miss the brother we once had even more . .. My thought's and prayer's are with you at this most difficult time ... Aine xx
Hi Cate. I have been faced with the same advice - but at the end of the day - it is not up to them and measuring quality of life for another person is not for them either especially when they do not know that person. We know how PSP plays out it's just a matter of when. Many times I was accused of being cruel for treating my dad but he wasn't ready to go and I knew it. Dad was cognitive but debilitated and a debiliated life is still one to fight for. We treated my dad until treatment no longer worked and then we knew the time was near. My father passed peacefully - - in his own time - -not a day sooner. I have not one ounce of guilt as I did everything I could to make his life worth living and comfortable everyday. Follow YOUR gut and everything will work out.
We were 'lucky' as my father & I had the very difficult end of life discussion when he was still able to talk fairly well. He made it very clear that he did not want any treatment that would prolong hi slife in any way& he also was clear that he did not want PEG
He was admitted to hospital after suffering a series of infections & his folder with his wishes came with him. Despite going thorugh everything with the medical staff on the ward - unbeknown to us he was given intraveonous anitbiotics. This upset him greatly & he became extremely agitated. As soon as it became apparent what had happened we asked them to stop the treatment & eventually they complied.
Quickly after this he went to the hospice where he had a much more comfortable time & was soon fitted with a pump for morphine to ease his pain & eventually 3 weeks later slipped away from us pain free.
I always take comfort that we followed his wishes - although I wish he was still with us - to quitely slip away & no longer have to suffer in a shell of his former self was much the best thing for him & that is afterall what it is all about , it has to be what the sufferer wants in many ways the wishes of the carer are not important.
Of course this is my personal view - but 2 years on from his death I wouldn't have had it any other way (other than of course my father not getting the bugger of a disease CBD)
I encourage all who face this disease & their carers/ loved ones to have the end of life conversation, it isn't pleasant but in the long run it brings peace of mind tfor all parties.
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No-one can really tell you what to do for the best, you just have to trust your instincts. I think the thing to do is ask yourself honestly whether you want her treated for her sake or for yours because you're not ready to say goodbye. What ever you decide I know you'll do the best you can for your Mum. 
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