Now let me die- very moving article

My husband had been in hospital lots of times.
The last time he was in, he was found crawling on the floor to get to the toilet as none of the staff heard his calls for help and they had put his buzzer out of reach.
There was winter vomiting disease on the ward so I said I would take him home as he was waiting to go to a different hospital for radiotherapy for his brain tumour. Had to ring up our GP to get permission. She said she would take responsibility for him. It took them from 9 a.m. to 4 p.m. to get a porter to take him to the car. All the time we were worried that he would get the sickness.

A good reason not to want to die in hospital, I think.

While horror stories about care homes and hospitals get published regularly, compared with the many thousands in them the problems, however dreadful are relativly few. The problem is older people read them and expect every home or hospital to be like that.

But I have known several people, including close relatives who said they would do anything rather than ever go in a care home because they have heard all these terrible stories, then move into one and realise how nice it can be, the worry and stress of managing at home with carers and the pressure they know they are putting on dear ones has gone and they can relax. My DU went into a care home where he lived for six years and said he had never been happier. No responsibilities (those were all mine), regular meals and company.

DF spent his last three months in hospital, he certainly did not want to go to hospital. He had been trying to hide the severity of his illness to avoid it yet when he got there he could not speak too highly of the care he received.

Sadly too often people say things like they would rather starve or die rather than go into a care home or hospital because their perceptions about both places are imperfect.

It upsets me so much to think that someone would rather starve to death than go into a care home or hospital, that I don't want to think about it. But how many times is this happening, and why. All people deserve dignity and comfort to the end.

Having lost both my parents to AZ and my in-laws to cancer over a 2 year period we well understood the wish to let them go. Despite having dementia I firmly believe my father willed himself to die having seen my mum in a care home for 18 months which he hated before he too ended up in hospital. In the 6 weeks he was in there he stopped eating and lost over 2 stone in weight. When he went into the care home with mum he steadfastly refused to eat and after 2 more hospital interventions I was told there was nothing more they could do and I insisted he went back to the care home where I could be with him. I sat with him for hours holding his hand and playing music to him. He was unconscious but would squeeze my hand occasionally so I believe knew I was there. The day my youngest son managed to get up to see him (he lived 3 hours away and was very close to his granddad) I quietly told him he could now let go - he passed away a couple of hours later. Both my in-laws who were completely lucid to the last waited until they had seen all the family members and then quietly slipped away on there own. My FIL even told us to have a nice life when we saw him 2 days before he passed which gave us quite a lot of comfort when it happened.

Wendysue, my husband had a living will, and that was why he was allowed to die the way he did in his own bed, in the UK.

tigerhouse my dh also waved 3 times about 20 mins before he left us, he waved towards the bottom of the bed, I was sat at his side so I will never know who he was waving to.

Just want to add that some people can't face that dying person "by the window," can't manage to see that "little girl (or boy, as the case may be)" in their eyes, etc. So the contrast the article makes isn't fully accurate, IMO. I get the general point though, obviously.

I don't know if grannylynn is from the States or the UK or wherever, but here in the States, we also have such a thing as a Living Will, as well as Do Not Resuscitate forms. If a dying person has a LW that says they are not to be kept alive beyond a certain point, by artificial means, as far as I know, the doctors have to respect that. Same of their medical POA person signs a DNR. I know a number of people who have been allowed to die, due to LWs and/or DNRs.

Again, I don't know if that's true in the UK or elsewhere, also. But if it is, then neither modern tech or doctor's (understandable, I think) concerns about malpractice suits can keep a "shell of a person" hanging on - not if their wishes to the opposite (if that's what their wishes were) have been made known.

The article is very moving. But here in the States. at least, the sad picture of the elderly woman being kept alive w/o dignity and so forth, doesn't have to be if people think ahead/really don't want it that way.

My Mother died just under 4 weeks ago at home. She was 94 years old and very tired. From being a vibrant active lady until 90yrs old, she slowly declined physically with cardiac failure. She had a DNR and this was suggested and handled very sensitively by her GP, with me in attendance. When she died, i was able to hold her hand and stroke her face and tell her I was with her. I felt no guilt about not phoning for an ambulance or trying to reverse this sudden event. She passed in her own bed in her beloved home and I am so grateful. My Father had died in a busy NHS hospital and it was so different.
Please consider a DNR for an elderly loved one. Discuss it with him or her and the family and of course their health care team.

Growing old isn't for wimps is it? These posts are so sad and so brave

Starbird, you have the most wonderful son as you know, plus the most supporting family, can understand how he just wants to be with his wife, after all these years, to him she is the girl he fell in love with and married, wish a miracle could happen and she recovers but it must be the most difficult time for him.

Tigerhouse, you looked after your wife to the end and did as she wanted, as she would have for you. The pain of losing your sole mate never goes, but as time goes on you carry it in your heart and go on living. It's been a long time for me, I don't talk about it anymore because when I do it's as if it was yesterday, but I know I did all I could. I am lucky that I can go on holiday, I never go where I went with my husband, do things differently but get a lot of pleasure planning it, reading up on the place I am visiting.

To have your loved ones best interest and well being to the end is what matters, respecting their wishes, you can do no more. The medical profession respect that, so if your wishes are known, that is what will happen.

Thanks, biker. Hard to watch, isn't it? After four years, even though you know they knew what they were doing, it's still difficult to reconcile heart and head.
Easy to talk about, but doing it takes guts.

tigerhouse what a sad and terrible time you have had. It is so difficult when someone so dear to you goes from hoped recovery through complications and rising hopes then further decline. I had a similar experience when my father died. But losing your wife like that is so much more difficult because the bond is even dearer. I do hope you have family to support you at this time, like granjura all one can say is and sympathy.

durhamjen I can feel your pain as my dh did just that, he was in the lounge, dd had just left (4 months pregnant) he just turned round and said "I'm never going to see this baby born, he sat on his stair lift and said "I think it's time I went" I helped him into bed, he stopped eating/drinking, barely sipping anything and left us around 10 days later,peacefully.

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

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.

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

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 .

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.

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

Totally understand Kitty flowers]

Bloody phone! Apologies MOnica !

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.

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 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.