I do agree. What a moving blog.

What a hearbreaking situation. I read this article over the weekend (or a similar one by the same author) and found it deeply moving, especially this para:

What gets killed, in a situation where death is delayed, is the memory and essence of the person who existed before. I had lost my bright and funny brother, he was buried under the eight years of non-life.

My MIL has had advanced Alzheimer's for years now. She was a vibrant, interesting, beauty who was full of life. It is almost impossible to not pretend that we are all literally just waiting for her to die. It reminded me of a saying I heard about something similar e.g: "Died in 2004, buried in 2014".

Another experience in my own family was my cousin's husband who was resuscitated when he had cardiac arrest, he was a quadraplegic afterwards and had no speech or any real cognition. She told me once that when she would wheel him into the clinic for check-ups and the staff would all swarm over them making a fuss, she would think "Your miracle is my nightmare". He died years later.

Very brave to broach this subject.

as a 90 year old I only dear that I may have to suffer though illness or dementia with no end in sight! I would rather die then suffer and be a burden on my family. I support the charity "Dignity in Dying"which promotes that you may need help to depart when you are very ready to go Alice

Thanks lacwhedy - I did not know about 'Dignity in Dying' - I've subscribed to their newsletter and I hope many more do! We might just be able to change the law eventually. Anny

Cathy, what a sad story and I so agree, society needs to have an honest conversation about these issues. My parents were both in their 80s when they died, they each died slowly over 5 or 6 days and at the time it seemed like torment for us but looking back it was instead a gift. My sisters and I were able to be with them 24/7 on a sort of rota and we were all with both of them when they died.
Dad was ill for months really and stopped eating, in the end we had to have respite care as he was too weak for us to manage. I was adamant we were not putting in a feeding tube for all the reasons in this sad blog - listen to your body has long been my mantra and Dad's body was giving up, or giving in. He was weary and ready to go, who knows how many months he would have lingered if he'd gone into hospital and they'd inserted a feeding tube?
I know with such a young man as your brother they were bound to try all they could but these things should be be irreversible, especially as you would not have any idea of the consequences when agreeing to it in the first place.

Sorry shouldn't be irreversible

Have got this book but not finding it that enthralling so it remains in my pile unfinished.Another book I received to review is Mortal by Atul Gawande.Now that is a captivating read.I could not put it down and read it over two days.This book is for anyone who is going to die one day! Filled with case studies .I am not lending this book out, hubby has it in his pile to read and then it is going in the bookcase where I will read it again.

lion I also loved Being Mortal and think everyone should read Atul Gawande.

I don't need to read the book, I am living it! 5 years ago my daughter aged 34, had a cardiac arrest, she was resuscitated eventually but not in enough time. She suffered severe brain damage. She walks OK but she is just not there, no, what they call 'capacity', at all.
Perhaps i should put it all into a book, her errant husband, my disintegrating marriage, my absent grandchildren. There is a lot to cope with.

I don't need to read the book, I am living it! 5 years ago my daughter aged 34, had a cardiac arrest, she was resuscitated eventually but not in enough time. She suffered severe brain damage. She walks OK but she is just not there, no, what they call 'capacity', at all.
Perhaps i should put it all into a book, her errant husband, my disintegrating marriage, my absent grandchildren. There is a lot to cope with.

I don't need to read the book, I am living it! 5 years ago my daughter aged 34, had a cardiac arrest, she was resuscitated eventually but not in enough time. She suffered severe brain damage. She walks OK but she is just not there, no, what they call 'capacity', at all.
Perhaps i should put it all into a book, her errant husband, my disintegrating marriage, my absent grandchildren. There is a lot to cope with.

I don't need to read the book, I am living it! 5 years ago my daughter aged 34, had a cardiac arrest, she was resuscitated eventually but not in enough time. She suffered severe brain damage. She walks OK but she is just not there, no, what they call 'capacity', at all.
Perhaps i should put it all into a book, her errant husband, my disintegrating marriage, my absent grandchildren. There is a lot to cope with.

I don't need to read the book, I am living it! 5 years ago my daughter aged 34, had a cardiac arrest, she was resuscitated eventually but not in enough time. She suffered severe brain damage. She walks OK but she is just not there, no, what they call 'capacity', at all.
Perhaps i should put it all into a book, her errant husband, my disintegrating marriage, my absent grandchildren. There is a lot to cope with.

at age 90 I am not afraid of death What does worry me is suffering where there is no help and even the family suffers more.
So please Gransnetters and all support the campaign to legaiise assisted dying for terminally ill adults
Write tell your MP what you think and why.Then we can all feel safer when we are old!

Treacle...So difficult. Doesn't sound like you have anyone on your side to help. Life is so hard sometimes.
You sound very strong and special. Blessings to you.

YesYes..write that book. So important for others and you.just start at the first day and the words will tumble out. Please do it
I want to read your story
And many others will. Sending you strength.

So sorry Treacle and Lucy to hear your stories.

We fostered a little boy who had a cardiac arrest and was resuscitated, but suffered serious brain damage. He came to us for assessment - the hospital said he was a vegetable! - he wasn't, but he would never be able to live an independent life. Far better for him and his family had he died then. He was a beautiful, delightful child with limited vision, cerebral palsy and unable to communicate. He stayed with us for almost two years until we found a brilliant children's nursing home for him. He would be almost 40 now, if he survived. His social worker was one of the best I ever worked with.

I think we do need to look at assisted dying for the terminally ill. I am in two minds about this especially when I look at the Hospice movement in the care of the dying.

Death is inevitable. From the moment we are born we know that we will die, sometime, somehow, somewhere. If we insist on prolonging the process with resuscitation, feeding tubes etc we prolong the process of dying for both the person about to die and the people who loved the person they were. Why does our society insist on doing this? We definitely need to look at our attitude to death and it's taboos. Treacle - no words, just a big hug x

treacle I'm so sorry to hear about your daughter and the sadness and stress you're experiencing.

I wonder if there is some sort of local support group made up of people in similar circumstances who you can talk to when you're feeling down or who can offer practical support. I believe the organisation Headway offers support and advice to people with relatives who have suffered brain damage.

Treacle, so very sorry for your awful situation, you must feel so helpless. I certainly think there are fates worse than dying, would not want to read a book about it. I certainly do not want to be resuscitated now, made my views known, but I am not young anymore, it is different for young people who quite naturally do not think the unthinkable so their wishes are not known.

I too have every sympathy with you treacle. I hope you are getting all the help there is.

This is a scenario that I know - not from a personal perspective, but a professional one. The last 10 years of my career were spent working with people with brain injury. It was very sad - especially those whose brain injury was acquired through a failed attempt at suicide, of which there were many. So often they were left with huge life-changing deficits, but no memory of what made them make the attempt in the first place - often young people who had a failed love affair and were left with no memory of the loved one.

The vegetative state is one that gives me shudders - mainly because we cannot know what that person is feeling in the way of pain or unpleasant physical sensations, so cannot know if the right steps are being taken to make them comfortable.

Many of the patients we worked with were young - one crazy bit of driving and their lives were turned upside down. There were some success stories, where new lives were forged from the mess, but also many for whom you had to wonder whether their resuscitation had been a positive move.

My daughter aged 31 died of leukaemia. The cancer was so widespread that it was in her brain and in her last days before she was put into a coma, it looked as if she had suffered brain damage. Much as I wish she was still with us, it is Posy I want not the person whose mind had been damaged beyond recall. Losing a child is the worst thing that can happen to you, but living with a child who is lost must be almost as bad. We after all have the good memories and the spirit of the person she was to sustain us.

My lovely husband suffered twenty years of illness,one thing leading to another. He spent his last seven months in hospital. His brain was active but he could only move one finger and had no quality of life. He would never able to come back home and would have hated going into care. I held his hand as he died,I was reduced to a seven stone wreck. I think they should have let him go sooner as we both suffered those last few months so much. Been six years since I lost him, still love and miss him so much. Just wish he had not had to go through all that suffering.

I have read several excerpts from Cathy's book & cried over all of them. And with the posters here, about the suffering of your loved ones - thank you for sharing your personal experiences.
I send you all my very best wishes, & especially those whose beloveds are still suffering.

I entirely agree with the sentiments of lacwhedy & also support the Dignity in Dying campaign.
If anybody is interested DiD are asking people to sign their petition on the " Care2 " website - but there are possibly other on different petition sites.
M.Ps will be debating this important matter ( which apparently hasn't happened for 18 years, so is long overdue an airing ) in the House of Commons on 11th September.

Doctors, scientists & researchers try to find ways to extend life, but to many people it is the quality, rather then the quantity of life that is the important thing.