Sorry for long post - but please read if you have a loved one nearing the end (sorry to be depressing !....)
I have been having a bit of a time of it recently as my lovely mum died on June 11th. Some of you may know that I rushed back from Mali , West Africa (where i live), on June 7th to find her , as she had been when I last saw her two weeks previously - that is to say totally unable to swallow, completely emaciated, bruised (side effect of frusimide medication i think), totally unable to speak etc BUT also with pneumonia that had been treated for five days with a strong broad spectrum antibiotic, to no effect. When one of the lovely nursing home carers started giving it to her again (in liquid form that she couldn't actually swallow - pills were out of the question), I said ' Do you have to ?' and she said 'only if you want'. I tell you it was like an epiphany (sp?) as i suddenly realised that actually it might be better to let the pneumonia take its course. So I discussed things with the GP who then signed off on forms to stop all treatment. What occured was totally expected - mum had some discomfort that was managed with morphine, slipped into a coma and then passed away relatively comfortably three days later. All this was fine.... until 3 weeks later ie now (!) I started to have a horrible guilt fest, and, in particular, weird dreams (!) about ' maybe I shouldn't have asked to stop the medication , as maybe in effect I killed her'... etc . I think the main point I go over in my head was that the antibiotics had already been started i e it wasn't like they were withheld from the beginning and I actively (and alone) suggested they should be stopped ( however to be honest after 5 days they had had no effect...). HOWEVER when I did an internet search of scientific journals yesterday it seems that antibiotics do not always work in the case of pneumonia in the last stages of dementia* ( they don't know why) and that also, it might be the way to go as actually slipping into a coma and floating away via untreated pneumonia is not such a bad way to go for those who are on the point of death anyway. In addition, the wonderful care home chaplain said to me at the time' if the GP hadn't agreed with you, she wouldn't have signed the forms ' - true !
So I was quite reassured.... and then..... I read this and became 100 x more so
http://www.hospicenet.org/html/choices-pr.html
What an amazing article ! - that sums up exactly how things were for me and makes me feel much more at peace and rational about the terrible decision I had to make about withdrawing treatment (it is written by a pastor and I am not even very religious ! ). I found it absolutely inspiring re dementia, quality of life at the end of life ,and spirituality (in the broadest non-religious sense) particularly in relation to how how there comes a point where you have to let go of your loved one and that medical technology is not the 'be all and end all'. The author makes the point that 'letting go' is not the same as 'giving up' and points out 'fatal isn't the worst outcome' (what a great phrase!) and that 'not having lived life to the full' is - or something like that !. I found it amazingly helpful -some of you may need it now and others might like to save it for when your loved one's time comes. For others it might not be appropriate. But I can't tell you how much it has just put things into perspective for me .
Sorry for details but I am sure there are others who have been/will be in this sad situation ...This article totally summed up my recent experience and the way i justified some of the horrible decisions I had to make- I found it very calming and reassuring and hope some of you do too.
Sorry for going on...am going to bed now and know I will sleep soundly !!
With love, Sarah
* Don't quote me on this - it is my understanding only. I am not medically trained !
I have been having a bit of a time of it recently as my lovely mum died on June 11th. Some of you may know that I rushed back from Mali , West Africa (where i live), on June 7th to find her , as she had been when I last saw her two weeks previously - that is to say totally unable to swallow, completely emaciated, bruised (side effect of frusimide medication i think), totally unable to speak etc BUT also with pneumonia that had been treated for five days with a strong broad spectrum antibiotic, to no effect. When one of the lovely nursing home carers started giving it to her again (in liquid form that she couldn't actually swallow - pills were out of the question), I said ' Do you have to ?' and she said 'only if you want'. I tell you it was like an epiphany (sp?) as i suddenly realised that actually it might be better to let the pneumonia take its course. So I discussed things with the GP who then signed off on forms to stop all treatment. What occured was totally expected - mum had some discomfort that was managed with morphine, slipped into a coma and then passed away relatively comfortably three days later. All this was fine.... until 3 weeks later ie now (!) I started to have a horrible guilt fest, and, in particular, weird dreams (!) about ' maybe I shouldn't have asked to stop the medication , as maybe in effect I killed her'... etc . I think the main point I go over in my head was that the antibiotics had already been started i e it wasn't like they were withheld from the beginning and I actively (and alone) suggested they should be stopped ( however to be honest after 5 days they had had no effect...). HOWEVER when I did an internet search of scientific journals yesterday it seems that antibiotics do not always work in the case of pneumonia in the last stages of dementia* ( they don't know why) and that also, it might be the way to go as actually slipping into a coma and floating away via untreated pneumonia is not such a bad way to go for those who are on the point of death anyway. In addition, the wonderful care home chaplain said to me at the time' if the GP hadn't agreed with you, she wouldn't have signed the forms ' - true !
So I was quite reassured.... and then..... I read this and became 100 x more so
http://www.hospicenet.org/html/choices-pr.html
What an amazing article ! - that sums up exactly how things were for me and makes me feel much more at peace and rational about the terrible decision I had to make about withdrawing treatment (it is written by a pastor and I am not even very religious ! ). I found it absolutely inspiring re dementia, quality of life at the end of life ,and spirituality (in the broadest non-religious sense) particularly in relation to how how there comes a point where you have to let go of your loved one and that medical technology is not the 'be all and end all'. The author makes the point that 'letting go' is not the same as 'giving up' and points out 'fatal isn't the worst outcome' (what a great phrase!) and that 'not having lived life to the full' is - or something like that !. I found it amazingly helpful -some of you may need it now and others might like to save it for when your loved one's time comes. For others it might not be appropriate. But I can't tell you how much it has just put things into perspective for me .
Sorry for details but I am sure there are others who have been/will be in this sad situation ...This article totally summed up my recent experience and the way i justified some of the horrible decisions I had to make- I found it very calming and reassuring and hope some of you do too.
Sorry for going on...am going to bed now and know I will sleep soundly !!
With love, Sarah
* Don't quote me on this - it is my understanding only. I am not medically trained !
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