Now let me die- very moving article

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).

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.

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

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.

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

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.

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.

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

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

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.

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 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.

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.

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.

A very emotional subject as I am currently helping to care for a 100 year old relative who has several relatively minor health issues. May I put in a word for the much maligned Liverpool Care Pathway. My late husband died peacefully in hospital with a gentle smile on his face surrounded by immediate family. He suffered a final massive stroke from which I was told he could never recover. He had a strong heart and with oxygen, morphine and fluids was kept alive. The LCP was explained to us and within half an hour it was all over. A very peaceful passing. I am definitely going to do a living will! Does it have to be done formally?

In the 80's I specialised in Clinical Nutrition, namely feeding patients intravenously, known as TPN (Total Parenteral Nutrition).
A life saver of course in many, many cases, but I also saw needless (expensive (private medicine)) treatment of those patients whose life should have ended naturally and peacefully and not been prolonged unnecessarily.
There should be just as much of an emphasis on a quality to dying as there is to quality of life.

I read this article, from Australia, just yesterday and thought it heartbreaking and excellent....
www.canberratimes.com.au/interactive/2016/the-big-sleep/

With three family deaths as recent as 2014, I can honestly say I have seen no evidence of any attempt to 'officiously keep alive', neither from family nor medical attendants.

There is perhaps another aspect involved. Family may feel 'guilty' or rather 'made to feel guilty' by staff and other people- if they do not insist on more and more treatment available, and ask for the loved one to be allowed to go in peace, with pain control?

My poor mum was kept alive for years through (misplaced???) kindness- eg persuaded to eat and drink when she refused- given foods she loved like chocolate mousse laced with multivitamins, etc. I don't know- it's been nearly 7 years- and I still don't know.

Can report here the story of 2 of my ex neighbours (both passed away no, and no family). He got cancer of the bowel aged 79- and after chemo, radiotherapy, a resection and more- he got better for a while, He then had a relapse and the doctors explained to her he was in terrible pain and that there was nothing more they could do. He asked to go home to die, but she went berserk with the doctors, threatening to sue them if they did not operate and calling them everything under the sun, calling them callous and just wanting to save money.

They gave in and operated- and he dies after 3 days after the op- it was so sad and tragic. If he could have gone home with support and proper pain control- he could have gone quietly as he wanted.

No-one blamed her of course. She was terrified and loved him very much. But we all felt dreadful that his wishes to die peacfully at home were not fulfilled.

Completely agree, the article resonated hugely with me. What does bother me sometimes is that I will probably die alone and not be missed for a while. However, I have faith that I will be going home so have to put my trust in a higher power.

My OH and I have talked about this and we have agreed that when/if the time comes, neither of us want to prolong the inevitable with harsh treatments or technology. Perhaps we should make Living Wills too so that the family are aware of our wishes. I will Google to see what is involved.

Monica- I think things changed hugely aftter Shipman. Doctors in the UK are also very concerned about being sued or accused.

But the article makes the point about family pushing and pushing for more and more treatment, operations, drugs, etc - to keep people alive far too long beyond any quality of life and dignity.

Sorry cruel world.

durham {{{hug}}}
It can be a gruel world