*Distressful content* EOL life question to any doctors/nurses

[Footballfrenzy2021]

My DF has a terminal disease & was found in his care home severely dehydrated during the first week of December.
He was immediately admitted to hospital but despite efforts they could not rehydrate him & it was agreed by HCP & us that all treatment was withdrawn.
He hasn’t had any food or fluids since 8th December & is only receiving pain medication.
He tested positive for COVID on Christmas Day.
It so bloody awful seeing him like this (we can visit due to EOL).
His palliative care team review him every 7 days.
I’m sorry to be blunt but we are absolutely horrified that this is how he goes. His mind is still there & he is aware of everything around him.
How long can a person survive like this ? It’s agonising to watch 😢
I’m sorry if this is upsetting but we just don’t want him to suffer anymore

Hi all

I’d like to thank everyone as I’ve said before.
As PP EOL isn’t talked about & for me it was an incredibly distressing time. I was completely unprepared & had no idea it was going to be so agonising for us to witness.
I went from being so scared to seeing my Dad appear peaceful.
Dad survived for 23 days (he was a strong, stubborn man !) a feat that seemed unfathomable & cruel to us but I know now that’s how the process works.
He was very subdued for the last few days and finally died last night - the 1 night no one could stay over but I know he chose that.
This thread gave me an understanding that the HCP couldn’t so thank you.
He was ill for a long time but I still feel absolutely heartbroken but relieved he is no longer suffering.
Thanks to all xx

Im so sorry for your loss, but glad his suffering is over. Be really gentle with yourselves

@Footballfrenzy2021, if it's if any comfort to you, don't be upset that he was alone. He felt safe and comfortable, and it was his time to go.
I'm so sorry for you that he's gone.

I am so sorry for your loss.

@Footballfrenzy2021 I am so sorry for your loss. Your DF is now at peace. I honestly believe they choose to go sometimes. My Grandad had Long term illness and towards EOL he always said he didn't want anyone of us to watch him die. We were with him as much as humanly possible in the end. He passed when it was just him and my nana together. How he wanted. My mum had gone to get a drink after days of sitting by his bedside. I hope this brings you some peace.

I'm so so sorry for your loss. My Grandad was put on EOL care last year and it wasn't fully explained to us as a family at all. Very confusing, for example told nil by mouth and then he was allowed small sips of water after a few days. He went very quickly - 5 days, but we were totally unprepared for it. The doctor had been answering some of my nan's queries the day before about if he would be allowed home and in hindsight the very sketchy answers given, and the treatment over the rest of that day (moved to a private room, family being allowed to visit, increase in morphine) it's very obvious the medical staff knew the end was a lot closer than we did. I hope you've found some peace with the information provided on this thread, it's certainly been an education for me and has resolved some of the unanswered questions I've had for 6 months.

I’m sorry for your loss OP.

I would also like to say thank you so much for starting the thread, and to those who responded with such insights and wisdom. It has helped to bring understanding and closure to my gran’s passing (many years ago) and helped ease my fears of what may come for my elderly parents. Something that was very much praying on my mind. Thank you so much

I am very sorry for your loss OP. I totally understand what you've been through.

I purposely came on MN to see if I could find anything about people's experience on EOL care and I found your post.

My DM is in a local care home following 10 weeks in hospital after an acute illness. Treatments, whilst helped, were giving her no QOL so they decided to withdraw treatment (dialysis) and have her moved to a care home.

She doesn't want to be there; she wants to be home. She can't come home because there is no district/community nursing available for her complex needs (she needs 4 x per day care-abscesses on her spine have made her legs no longer work, type 1 diabetic, kidney failure caused by vasculitis). So she is in a care home, being looked after by strangers and I go in daily for 2-3 hours (taken holiday from work but due back tmrw). My DF goes in for 4-5 hours.

We have been told she is on EOL care but she eats 3 x per day, drinks water and tea all day and is lying in bed as she can't move her legs. I am distraught knowing she has all mental faculties, knows she'll never have use of her legs again and constantly asks why she can't come home. I explain about the community care situation and she ends up crying. She is so unhappy. I'm not sure she fully comprehends she is EOL.

As she is continuing to eat (very small amounts) and drink daily, how long is this awful experience going to last?! The consultant, when she left hospital said she could last 2-3 weeks once dialysis stopped.
The 3 weeks were up last Friday so we have been expecting deterioration since before Xmas but she hasn't deteriorated other than she has started wheezing when breathing. The care home manager says 'how long is a piece of string?' And she's an experienced palliative care nurse of 20 years so I'm going by her knowledge having never experienced this before.

Sorry to hijack your post OP but noone tells us anything about EOL do they? I'm frightened of what's to come over coming days/weeks. And I don't mean for this to sound awful (but it will), but I just want it over with, to end her mental suffering for hating being in a care home and not in her own familiar surroundings. I am utterly heartbroken for her.

Very sorry for your loss OP and am pleased he is now at peace.

Sorry for your loss OP

I’m so sorry for your loss. I totally know that mixed feeling of relief and sadness.

Honestly, I worked on an elderly care ward for a long time and did many night shifts. I sent exhausted family home with promises that I would call if anything changed, but I warned people that many people just seem to slip away when they were alone. It’s definitely a thing. I genuinely believe people chose to go that way.

Sending you lots of love and (unMNetty) hugs. Take care of yourself.

I'm so sorry op and onlyhuman. It's an exhausting and heartbreaking time and I'm thinking of both of you. It's okay for it to feel like a relief and okay if you're not there/weren't there at the end. There is no magic wand and no easy path through eol care.

Sorry for your loss

So sorry for your loss.

I've recently been reading a book about experiences of death and it suggests that often people do choose to go when they are alone, so I thin you're right and it's likely he did choose this.
Take care OP

Well I dont know if Im glad to have read this or not. I have terminal illness and am greatly frightened by the end process. I read with interest that Austria have legalised assisted dying, and wish it was legal in this country, although I know it has been mooted lately.
I really cant see the logic of letting people suffer, as many have said you wouldnt put an animal through it

@Starcup

I just happened to come across this post and I'm aghast at what appears to happen during EOL.

I don’t really know what I thought happened but the patients are basically deprived of food and water? I’d that right? Im taken aback reading this and my thoughts ate certainly with you OP.

Their bodies cannot process food and water when they get close to the end of life. All it would do is make them suffer more.

Thanks @Footballfrenzy2021 for starting this thread. I've been through similar in recent years, and it was a new and awful experience. Thanks to the people with EOL expertise that posted too for sharing insights. You do an amazing job helping patients, but also friends and relatives.

@TwinkleTwinkleLittleStarFightr

I’m sorry for your loss OP.

I would also like to say thank you so much for starting the thread, and to those who responded with such insights and wisdom. It has helped to bring understanding and closure to my gran’s passing (many years ago) and helped ease my fears of what may come for my elderly parents. Something that was very much praying on my mind. Thank you so much

Absolutely. Most people have no knowledge of the EOL process until it affects someone close to them, or indeed them personally.

Sorry for your loss, @Footballfrenzy2021

Oh op what a caring family he had, a brave strong man who at the end wanted to protect his daughters. I have seen it so often, the family leave the bedside and the patient just quietly slips away.
Sending you love, the grieving process can be very different when you have been through EOL care, however you grieve that will be completely normal.

Thanks so much to OP and other posters who have shared experiences and knowledge. Had similar last year with my dad, couldn't visit due to covid, but there were daily calls, mainly about hydration and what I would agree to regarding interventions. They worked so hard to get it right. It was a fine balance between giving him water and not distressing him. In the end they simply did mouth care. My main instruction was just give him all the drugs, which they promised they did and that he was comfortable. I've been mostly distressed about not being there at the end, but again this thread has helped me see that was perhaps a blessing in disguise. Hugs to all.

@SavageTomato, I'm sorry to read your post. 
What @Ducksurprise said is true though, although I think I have far less anecdotal evidence than them:

Some people actually prefer to slip away when they are on their own. (That's not to say people who are nearing the end of their life don't feel comforted by the presence of their loved ones though, just that they feel more able to go when alone.)

My sympathies to anyone who has trodden this difficult path. I know how awful it is to watch someone you love dearly when you know they cannot continue to live, yet also not knowing how long they will go on for. It's the most difficult thing, I think, that anyone will ever have to deal with.

I sincerely believe that the way patients are now able to have a syringe driver is a far kinder thing than leaving them to suffer in pain, fear and confusion. I'm so glad we are able to make that choice for our loved ones.

@thereisonlyoneofme
Im so sorry for you - it must have been an awful shock. I hope there isn't too much on this thread to upset you, most of the posts tell of well-managed deaths and talk instead of how upsetting it is for relatives. Personally, I prefer to read up about EOL care - none of us can guarantee what will actually happen at the end but at least now I understand about withholding water and food etc. Please don't let this thread add to your worries 💐

Thank you for the thread @Footballfrenzy2021. Despite having been in this situation three times now I have learned so much about EOL care. I am so sorry for your loss.

Our DF was adamant he didn’t want us there “when the time came”. DSis was adamant that she wouldn’t leave him. I did my best to cover the time she couldn’t be there (we both had young DCs and I lived 3 hours away). As it happened, he passed away when he was on a rare hour neither of us was with him. The very kind nurse said that this is often the case, the dying person chooses when they go - whether that’s surrounded by family or on their own. That was a comforting thought.

Sorry for the loss of your dad @Footballfrenzy2021 but I’m glad you were able to get some comfort from people’s experiences here.

I think it’s really important to talk about these things and hopefully this thread will be of some help to others too.