Dear all
My mum had a massive stroke 18 months ago leaving her unable to speak, swallow or move her right side at all. After about 2 months, the doctors decided to insert a PEG in to her stomach. She pulled this out.
Mum always wanted a quick end to her life, and all of us, my brothers (3) and myself knew this. When she pulled out the peg, one of my brothers was asked his permission to re-insert it, and unfortunately he gave permission. I would not have, but he was in the ward on that particular day, so they went ahead. There have been a few problems with the PEG as such; early days, she vomited a few times after its re-insertion(that we know of), but for the past 12 months while in nursing home, the peg has caused her little problems. Morally, I find it hard to cope with
Life for Mum is non existent, she has no quality of life. She has advanced dementia and confusion, does not recognise any of us, apart from a few lucid days she appears to recognise us as a 'friendly face' (not as her children though).To see her 'living' as she is, like a caged animal (she is confined to bed 24/7) breaks my heart. Until recently, she was never taken out of bed, not showered or bathed (other than bed bath) and life for her as been a living hell. For us too - having constant battles, to even achieve a minimum level of quality of life and attempting to protect her basic human right. Things have improved a little, inasmuch as they (the staff at the nursing home) have in the last year had her out - once on Mothers' day, and once when they had a few more staff in... !
I realise that everybody has differing opinions about end of life care, and I totally respect them. I cannot ever forget my Mum's wishes, and cannot ever forget her ethos over the issues. I feel terribly guilty that we as a family are having to be forced to turn a blind eye, to brush this under the carpet, and yet still try to live our lives. Hard, is an understatement. In my opinion keeping somebody alive, merely existing, may be right for some, but it was not my mum's belief and her wishes should be paramount! Our wishes at such a time in our life, have little bearing. Lasting power of attorney and changes to the mental capacity act, will help, but do not go far enough. We all believe we have control over our lives, but I know now we dont at all!
My mum had a massive stroke 18 months ago leaving her unable to speak, swallow or move her right side at all. After about 2 months, the doctors decided to insert a PEG in to her stomach. She pulled this out.
Mum always wanted a quick end to her life, and all of us, my brothers (3) and myself knew this. When she pulled out the peg, one of my brothers was asked his permission to re-insert it, and unfortunately he gave permission. I would not have, but he was in the ward on that particular day, so they went ahead. There have been a few problems with the PEG as such; early days, she vomited a few times after its re-insertion(that we know of), but for the past 12 months while in nursing home, the peg has caused her little problems. Morally, I find it hard to cope with
Life for Mum is non existent, she has no quality of life. She has advanced dementia and confusion, does not recognise any of us, apart from a few lucid days she appears to recognise us as a 'friendly face' (not as her children though).To see her 'living' as she is, like a caged animal (she is confined to bed 24/7) breaks my heart. Until recently, she was never taken out of bed, not showered or bathed (other than bed bath) and life for her as been a living hell. For us too - having constant battles, to even achieve a minimum level of quality of life and attempting to protect her basic human right. Things have improved a little, inasmuch as they (the staff at the nursing home) have in the last year had her out - once on Mothers' day, and once when they had a few more staff in... !
I realise that everybody has differing opinions about end of life care, and I totally respect them. I cannot ever forget my Mum's wishes, and cannot ever forget her ethos over the issues. I feel terribly guilty that we as a family are having to be forced to turn a blind eye, to brush this under the carpet, and yet still try to live our lives. Hard, is an understatement. In my opinion keeping somebody alive, merely existing, may be right for some, but it was not my mum's belief and her wishes should be paramount! Our wishes at such a time in our life, have little bearing. Lasting power of attorney and changes to the mental capacity act, will help, but do not go far enough. We all believe we have control over our lives, but I know now we dont at all!