Now let me die- very moving article

Hospitals are philosophically geared to treating patients wherever possible and until relatively recently not necessarily in managing end of life care. For some doctors and, especially nurses, losing a patient can feel like failure and in the past I have experienced this reaction when we lost our DS and also my mother.
There are other alternatives to the tragic cases of suicide pacts or clinics such as Dignitas and I cannot speak too highly of hospice care. In an ideal world, hospices would be available to all with terminal illnesses or who have reached the need for end of life care. In addition to managing pain, they "treat" and care for the whole family who can trust that their loved one will not suffer unnecessarily.

dj

What a moving and self-damning article. Thank you granjura. It is something to be read and passed to one's loved ones, if one feels the same as the good doctor. Sadly, Shipman muddied the water for many a caring family doctor, who may well have helped many a patients to the pearly gates rather than prolong their pain and distress.

I have no fear of being dead, only of dying. I would like to be allowed to die peacefully. DH won't permit that and has told me that he would ask the doctor to do everything to keep me going, probably regardless of qualitly of life. DS2 has, bless him, promised me that he would override his father, if necessary with fisticuffs, so I could have the death I would like. I shall probably survive DH as he has cancer, is well at the moment, but has a more limited lifespan than me, but he would like everything done to keep him alive.

It is a terrible dilemma for the family/spouses. And there is no right or wrong way to act. But sometimes the families seem terrified of letting their loved one go.

I don't think this happens very much in the UK, there is no money to be made by prolonging care of the elderly beyond nursing homes and Nature is left to take its course. I would think it would be much the same in the US unless you have very good health insurance. When my Mum passed away in hospital (in the UK) the emphasis was on keeping her comfortable not prolonging her life.

The Do Not Resuscitate question : my husband has dementia and is disabled but at present his quality of life is acceptable to him. At our last hospital appointment the consultant asked whether we had had the DNR conversation. We said we had had this together as my husband is still able to understand and decide and my husband had specifically said he did not want to be resuscitated. This has been entered on his notes and at our GP surgery. aS his wife and carer, I know his wishes and will do my best for him with the medical profession if and when the time comes.

I think we are mostly reconciled to not prolonging the life of the elderly, in the UK, although there will always be cases of loved ones who can't bear to let go. However, my son has been married for nearly 12 years, for the past 11 years and 3 months of which his wife has been in a nursing home in a 'Minimally conscious state' following a brain aneurism 6 months into the marriage, caused, it turned out, by a weakness of the blood vessels present from birth. She is kept alive, moved from bed to a wheelchair and back each day, fed intravenously etc, mostly, as far as we can tell, unaware of what is going on, but at times will stare at you and for a few minutes and appear to understand if you talk to her. Once I felt a deliberate pressure on my hand, from her fingers, and once she mouthed the word 'help' when her tracheometry tube was clogged. She sleeps a lot but when not asleep, I feel that she is very much there but can't make the effort to engage. My son spends evert spare moment with her. There have been cases when a person in this state has come round after 27 years, only to relapse again. It would be illegal to withold treatment even if the family wanted to, which they don't, at the first sign of a chest infection, to which she is prone, and which could lead to pneumonia, she is taken to intensive care. She was 28 when it happened and will be 40 this year.

How sad for your son and all you love her bless you all can't think of anything else to say ?

Indeed- words fail me. Isn't it time your son should be encouraged to keep caring and visiting regulalry- but also getting on with his life too.

So so hard

GrandMattie- my mother asked to be allowed to go (and could have done very legally here in Switzerland) for more than 10 years. A magnificent, intelligent, open and talented woman- who had lost the use of her legs, blind and totally dependent- She hated it and lep asking to be 'let go'- but dad, a good Catholic, just wouldn't allow it, and begged her to stay with him. I lived abroad and just couldn't see him see that his request for torture for her- I don't think he would have ever forgiven me if I had called in Exit to help here as she wanted. We moved here partly so I could help- and she died 3 weeks before we moved. I still feel guilty she had to endure those 10 years she hated.

Thanks hulahoop and granjura I didn't mean to divert the discussion but it just came out. My son does have some good friends he sees maybe once a week or fortnight, and occasionally gets away to visit his dad (as he does not live near and does not travel far), and his brother and family. I don't live near but can visit. He and his mother in law are good friends as they share caring for her. (In the early days, thinking she would come out of it in a few weeks or months, her mother and my son were encouraged to spend time with her and help with simple nursing tasks, and there has never been a point at which they have felt they can stop doing that). When he is away from her she is on my sons mind all the time and he is keen to get back, or if he has times of forgetting, and being happy away from her, then he finds it harder to go back and face it all. For now, this is how he copes.

granjura I don't think you have any reason to feel guilty, but how very sad for your mother.

I don't want to be 'helped to go' as you put it granjura, I just dont'want to spend my last days stuffed full of tubes, needles and things just to stay alive. that's the difference. If I get pneumonia, so be it, it wasn't called "the old man's friend" for nothing.

And I'm so sorry about your mother -don't feel guilty, though ineveitably you can't help yourself... [hugs]

It is really difficult isn't it?

If I think about my Mum I feel that her quality of life in the Care Home is dreadful and that she wouldn't like it at all if she knew about it. But, the reality is that she is quite content to watch some tv, sing some songs, do some seated exercises etc. It is only in our heads that it is not 'right' for her.

Then there is the complication of the fact that she was not a 'nice' mother to us and what we think is the correct action now she is ill could be clouded by that. Despite everything, we continue to visit every day (between us) and to care for her needs - holding her hand and listening to her, reassuring her when she is scared etc .

After discussing it with the consultant and the GP we have put in place what we think is the best way for her to die when the time comes - without any intervention other than 'normal' antibiotics should she appear to need them, assisting her to eat and drink (if she wants to) and letting nature take its course.

It is not straightforward

Starbird, you must be torn in two. You must be proud of your son's behaviour but sad for his huge loss of a future with someone he loves. My son had an aneurysm at the age of 35 which left him disabled but he is able to live a fairly independent life although his wife brought him home to us and left him.

Alzheimers makes things so much more complicated, I agree Kitty - my mil had made it VERY clear when fit, well and active about how she felt- and would have hated what it did to her- especially in the last stage.

With my mum, it was different. She had also made it very clear a very long time ago, again, when fit and well. She never had dementia or Alzheimers right to the end, aged 94- and clearly asked to be helped to go- so very different. And of course, very different as Mattie says, to 'just' allowing nature to take its course- mum definitely wanted to shorten that stage (and legally too where she lived).

I think kittylester raises a very important point about quality of life. Just because, fully sentient, life in a care home seems everything life is not about does not mean that when dementia starts, and if the dementia does not appear in a form that makes the person suffering from it deeply unhappy, people can live very happily in a care home.

A DA and DU went into care when they were both diagnosed with severe dementia. Right from the go they were content; they had a nice shared room and during the day DA, with DU in tow would head for the large reception area. There they would sit and DA, always the most sociable of people would welcome everyone who came in and offer to help them. After DU died and DA mental state deteriorated she stayed in the lounge but whenever I visited enjoyed telling me about the different residents and staff. The life she led their would not have suited her had she not had dementia, but with dementia, she was very happy.

Seeing DA in care with dementia took away all my fears about ending in that state.

Sure our own experiences with loved ones influence how you feel- so glad that for you those fears have been taken away or lessened. For me it is totally the opposite- and of course too, our definition of 'happiness' can vary massively.

All I can say, is not for me, thanks.

I think what Monies and I are saying, gj, is that, as our relatives lived their lives in the moment they were content, if not happy, and it is only our perception of how life should be that makes us think they can't possibly be happy.

Bloody phone! Apologies MOnica !

Totally understand Kitty flowers]

kitty Nobody need apologise to me for typos. I am doing them all the time.

My family and I are all agreed that when the time comes, we should be allowed to go with dignity. That said, I'm not worried about food, but would expect to be given water; the idea of dehydration is a nightmare to me. But if I can't read, listen to music, enjoy my computer, get out into the open air, I would no longer be me. My mum had dementia and died in a home, and my severely disabled DH (we've been together for 34 years and is my best friend and soulmate) lives in severe pain and is not expected to make "old bones", I want him with me as long as possible. But would not wish either condition on my worst enemy. I'm not Christian, but have a strong religious faith and believe firmly that we will all meet again, so death is not a problem; it's just the fear of a painful act of dying. But has to be up to the individual and his or her loved ones. OH's grandfather, approaching 100, wanted to be allowed to die to be with his wife and we were horrified when he was rushed into hospital because he didn't want to eat. He complained to all visiting family that the hospital food had no taste and wanted salt, so we took some in for him, to be told by the nursing staff that "salt's bad for you, you know", and they refused to let him have it! We were really angry - would it really have mattered? He passed away the following day, in any case.

After 47 years of nursing I have had a number of elderly frail people ask me to not let anyone to do any more treatments .The words Let me go" echo in my ears . Why don't we listen and respect what any person wants .
Sadly in today's world death is a stranger to many of us .

skweek1- what a shame you were not able to insist your relative stayed at home instead of being rushed to hospital. Agreed that stopping him from having a little salt was just cruel. I've known the many rushed to hospital at the last minute- I really hope this never happens to me or any of my loved ones at that last stage. I want to die in my bed watching the birds outside, and not being poked and prodded on a ward. Please.

Ginny, thank you for all you did for so many. People like you have massive insight into the realities of dying in very old age x

my wife tigerhouse was addmitted into hospital on the 1st april last year for LVRS = lung volume reduction surgery, it was all planned, but complications set in after a week of the operation, half way through april while she was in intensive care, i was at her bed side when her consultant came in, she begged him not to let her die, he said to her whilst holding her hand that he might have to do some " horrible things " to her, but that would not happen, he said at that stage he hoped to get her well enough to leave in a couple of weeks !
on reflection was that a sign of leaving her to die at home ? i'll never know, over the next two weeks she the a full blown trachemstomy & was put on a ventilator, so for those two weeks i had to see her suffer & only able to communicate with me via a note book, it was heartbreaking to see my dear wife suffer so, being told one day that she was making progress, then the next day another doctor said to me , if we don't do something else, she would not last the day, my dear wife,took the desision to call it a day, see wrote as best she could that she could not live like that & wanted it to end,the doctors told me that as she was concious , they had to take her wishes into consideration first over mine, i eventually agreed with diane at her bedside, but never thought it would come to that, they moved her to a private room & i stayed with her to the end - holding her hand, she could't take , but waved to me as if to say goodbye, & we held hands all the way, sometimes she would sqeeze mine & i hers, she died on the 1st may in the morning, never thought i could feel such pain, but i must try & take comfort that i still have her at home as she wanted her ashes here with me until my time comes & we are together again.

oh tigerhouse- words fail me. Thanks for being with her all the way and loving her so much that you just had to let her go as she wished, I know you are a man, but even so may I send you some and (((hugs)))

jura