Dad's death, many questions

How interesting to read your replies. I suppose both my parents were in denial right up to almost the end. This was compounded by some of the staff bustling about. I do understand that some movement is necessary but it seemed so cruel in some ways.

Nemos .....I had no idea what I was doing and had contradictory messages from the medics.

Bluebelle, sorry for your difficult situation

To those who question the “don’t give water”. As the body slows down towards death it loses the ability to digest food and more importantly to swallow liquid safely. This could result in choking to death which would be very unpleasant for everyone. The staff should have explained this to you. At the hospice we gave patients crushed ice wrapped in gauze to moisten the mouth and give comfort.

www.dignityindying.org.uk/

Yes farawaynanny I was about to ask had anybody questioning / ignoring the do not give water requests seen anybody with aspiration pneumonia?

My father was very close to dying in hospital and the nursing staff went to great lengths to make it as easy and comfortable as possible.

Along comes a young night sister who decided no one died on her watch. She rallied him and he lived another 18 months which were sheer hel l for both my parents and very difficult for me as I lived quite a long way away, running a business, and teenagers taking exams. My father, who had Alzheimer's constantly asked when will it all be over..

My relief when his coffin came into the crematorium was immense. A troubled soul laid to rest. I cannot forgive that bl---y nurse for putting the family through that stress.

I looked after my grand mother for the last eight years of her life. She was 94 when she died and was bed ridden by then. Our GP, was very good and kept an eye on her without me calling him out. On his last visit to the house he said he thought she was in pain and it was time to start the morphine. I was to go to the chemist to get the medicine and give her half a teaspoonful. Then he said he would ask a nurse to come in and fix a morphine drip into her hip. I did as he asked. She didn't wake up again after the small dose I gave her and died at ten o'clock that evening. The sad thing was, she had been laughing before the morphine at something silly I had said, so I doubted she was in any pain. But as you can imagine I truly believe I initiated her death, by administering the first dose of morphine. I still feel the guilt now even though it was several years ago. To me the doctor ok'd euthanasia and made me a party to it.

Oh how I agree . Doctors kept on treating my very sick mum and taking blood samples from her when she really wanted to be left in peace. Eventually DH spoke to the doctor in charge and asked him to think what it would be like if this was his mother. I persuaded them to put her on a morphine drip . They pointed out this would hasten her end and my answer was " so what, did this matter "

I’m with you on this Foradora9. I’m currently sitting with my 90 yr old Mum in the local hospital while she has a blood transfusion.
She’s very frail with multiple long standing heath problems and tells us she’s “had enough”. The GP ordered the transfusion despite the family questioning it and as he deems that she has capacity to make decisions, we cannot use the power of attorney. She fluctuates between lucidity and total confusion. She has lost her mobility, is incontinent and hardly eats. I could cry seeing my lovely Mum like this. ?

Oh Lily - how this chimes bells with me!

OH fell and fractured his femur and needed hip surgery about 4 weeks ago - he has end stage Parkinsons and weights about 6 stone.

After a few days, when he was weak, confused and in pain they wanted to ship him off for "intensive rehab" at a cottage hospital. And I said: "Rehab for what? - to what end?" It is just a knee jerk reaction, a protocol that is followed in acute hospitals.

The concept that someone's life is gradually coming to an end and they should be allowed some peace and dignity does not fit the algorithm.

I am very sorry for your loss.

My deepest sympathy.

I think the attitude shown by the staff looking after your father is caused by the fact that many people would rather be given false hope than be told outright that they are dying.

If your father had made it clear to them that he knew he was dying and had come to terms with it, the staff were very wrong to jolly him along, but if he or you had not made it clear that you both knew what the prognosis was, then you shouldn't really blame them.

My sister found it very hard to forgive the oncologist who told her bluntly, before she asked for a prognosis, that she would be lucky to live another two years. She lived less than one year from that day, and I cannot help but wonder whether she could have enjoyed that time more, or even lived a little longer if the oncologist hadn't been so forthright.

I am so sorry for your loss, Lily65.
My father also died in hospital when he had "final" stage bowel cancer.
On the day before he died he complained that he'd been given a vile-tasting medicine by mouth that he hadn't had before.
I wondered what it must have been and whether it had hastened his death but decided to ask no questions because even if it had hastened his death, he had suffered for long enough.

My Dad died before Christmas and I mentioned to family a couple of times. Why are they asking us to get something sweet down him to give him energy, we were just putting of the inevitable.
He was dying so just let him go as I couldn’t watch him suffer
It still baffles me now

Thanks one and all. I feel less alone now.

My father was in denial until practically the end. Desperately sad
I knew for at least one year that he was on his way out.

When he was admitted to hospital for a blood transfusion we were told he would be " home in 24 hours" I never swallowed this.

Near the end one of the nurses asked me what my understanding of the situation was. Once she had established that I knew he was dying, we were able to have a reasonable conversation, her and I and Dad and I.
It was a very difficult time and heartbreaking to see.

Sorry for your loss lily and having very recently lost my Mother, I like you, have now started thinking back and wondering if things could or should have been done differently. Mum had great care and much kindness shown to her, but I think that after the initial shock and then all the organising of funeral etc, we get hit with memories and questions after the event. Be kind to yourself. X

So sorry about your dad's death. I think it wasn't about money but simply that hospital staff know that death cannot be predicted perfectly. So the nurses get old people out of bed because it lessens the likelihood of them developing pneumonia and they continue to be cheerful because they really don't know and don't want to upset anyone. When my mum was in hospital I asked many times if we were looking at an end of life plan and was always told "No,". When mum died having developed pneumonia the staff were as shocked and upset as the rest of us (She was 94).
Mum often didn't want to get out of bed and one of the physics trying to persuae her once said "Come on we can't leave you there. You know a lot of people die in bed!"
My mum replied "That's where you're supposed to die."
It will take a long time for you to get over this but please believe everyone did their best.

Reading through this thread it would seem there are very different expectations of end of life care. It's difficult to know how each person and family will deal with impending death. Some people cannot even say the word others want to plan a funeral, hospital staff must try to get it right but don't always succeed.
Your father's last illness was only a small part of his life Lily try and remember all the other happier times you had together.

sodapop, I know you mean to be kind , as do so many others, but it was a very troubled relationship. Very.

Were the physios perhaps "chest physios"? i.e. getting him up so that he didnt gain a chest infection which is one of the most unpleasant ways to die and just because he was dying anyway doesnt mean he shouldng be positioned or sat out to prevent getting that as well ?

There are different levels of palliative care.

Not everyone who is for palliative care is for "end of life" care.. that comes later.

People on palliative care are often still treated with paliative chemo and antibiotics and other things to extend and improve their life for as long as possible. They can still have treatment for long term or new illnesses which may explain the positive updates. It just means they have something that will kill them and cant be cured, but can still very much be treated as other patients in other respect, so they can still maximise their life for as long as possible. Unless they state that they want NO active treatment and community care only, which can be done on a patients request if they are palliative, but not in their last days.

It is only when palliative patients are on "end of life" care that it switches to no treatment at all except for comfort.

Lily you haven’t said how recent your father’s death was, but I think it’s inevitable that it takes quite some time to process all the emotions of his last few weeks as well as all the regrets you have about the past.
Please don’t be hard on yourself.
Give yourself the time you need and then try to start living your life for yourself, without guilt or unhappiness about the past.

New Years Eve 2018, thanks jane.

Sorry for the loss of your dad Lily65.
I understand exactly how you feel. My dad died in February and had a very similar experience. I find it very hard to go back to his death.
Sending you best wishes, I hope with time it becomes easier for you and for myself.

Yes, also totally get how you feel, and the questions that are arising.

Nowadays, medical/nursing staff are terrified of being accused of hastening death, and that often translates into prolonging it - and I agree it is cruel.

I recently started a post on the subject of talking about wishes for end of life stage- we should all discuss how we feel about it, what we would wish to happen, how to be treated or not treated, artificially fed or not- antibiotics, DNR, etc.

Because of several friends and family who have found themselves in that situation, we have talked at great length with OH, and with DDs- and sibblings- so they know to respect our wishes. A god idea too to make advanced directives - with many scenarios envisaged. In Switzerland where we live, we can take this to the next stage and take matters in our own hands if we want to.

It takes a long time to come to terms with it all, take care.

Farawaynanny when your mum is having a lucid period try to get her to agree to a DNR. This stops any resorting to intrusive treatment and resuscitation if she becomes really ill. She will need to talk to the doctor about it. We did this with my mum when she was in hospital. I'm so pleased we did. She died quickly and without having her chest thumped and an oxygen mask covering her face.

maybe they were just trying to comfort you but had the opposite effect.they not really trained to help with the dying ,surely a macmillan nurse would have been availible.at least your dad knew you were their for him thats what really counts..