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Original poster

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

107 replies

Footballfrenzy2021 · 29/12/2021 18:41

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to hospital but despite efforts they could not rehydrate him & it was agreed by HCP & us that all treatment was withdrawn.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

OP posts:
WaltzingBetty · 29/12/2021 23:12

@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.

No not deprived.

If you read the thread you'll see it's already been explained
Patients don't want food or water as their bodies shut down. It's part of the normal dying process - what would you suggest instead? Force-feeding a distressed person causing then nausea and pain?
Please read the thread before making potentially distressing and uniformed accusations

Starcup · 29/12/2021 23:50

**No not deprived.

If you read the thread you'll see it's already been explained
Patients don't want food or water as their bodies shut down. It's part of the normal dying process - what would you suggest instead? Force-feeding a distressed person causing then nausea and pain?
Please read the thread before making potentially distressing and uniformed accusations**

Get over yourself.

How can asking a question be making accusations?! Most people in this thread know more than me so that’s why I asked.

dittheringdoldrums · 30/12/2021 01:05

@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.

As a culture we really struggle with end of life and death. Hopefully this thread will help some people to learn what is "normal" and expected at that stage. I remember my MIL being furious that the medical team stopped giving my FIL fluids. She absolutely could not accept that it could cause more distress. It's an awful thing to go through.
Starcup · 30/12/2021 01:29

@dittheringdoldrums

Thank you for your reply. I completely agree, we’re sheltered to some degree about death and what happens. I guess until it happens to our loved one, we don’t really know about the process.

lynntheyresexswappers · 30/12/2021 02:04

The syringe driver will keep him comfortable, and ease his passing. Palliative care usually involves a sort of sponge on a small stick, soaked in fresh water which is then eased into the mouth and around the lips to keep
Them from drying, cracking and being painful.
I have worked extensively with EOL patients, and I can promise the lack of food and fluids will not cause him discomfort or pain, in fact he would struggle to digest at this point. As long as they are keeping his mouth moistened, and his driver is in place, and he's being assisted to different positions to avoid any sores, he will be peaceful and comfortable.
I'm so very sorry op, a horrible position for you and your family to be in. May I suggest sending in a lip balm or Vaseline to help with his lips drying, this should also help keep him
Comfy.
Sending you love and strength at this time Thanks

WaltzingBetty · 30/12/2021 07:42

How can asking a question be making accusations?! Most people in this thread know more than me so that’s why I asked.

Because the question has already been answered so it's unnecessary and you're using words like 'deprived' to describe loved ones going through this process right now and telling us how 'aghast' you are.

The words you've chosen imply that you think people are being caused to suffer when thats not the case. Why else would you choose those words? You aren't just asking an (unnecessary) question, you're judging HCP and concerned relatives who are dealing with this difficult process right now.
That's unkind

WaltzingBetty · 30/12/2021 07:48

That was to @Starcup
Please consider that this is a thread of people currently dealing with bereavement.

Saying 'get over yourself' in response to being asked to rtft and not tell us how aghast you are at choices currently being made for our relatives is pretty unpleasant

Shambleseya · 30/12/2021 08:05

OP I just want to thank you for starting this thread. I had no idea what EOL care is like. If and when it happens to my loved ones at least I will now be a bit more prepared.
Sending you positive thoughts.

Original poster
Footballfrenzy2021 · 30/12/2021 08:06

I would like to thank everyone for your kind replies.
This thread has made me realise that we are the ones in distress & my DF is actually comfortable and calm.
We have never experienced this before & we were completely unprepared.
We are also very lucky that the hospital are allowing us to still visit (they have set a bed up in his room so my Dsis is staying with him).
To us it doesn’t seem possible that he’s not in any pain/hungry/thirsty but through your explanations I realise he’s not & unfortunately this is just the process of a body dying.
💐 to anyone who has or is having to live seeing a loved one like this.
For me it really is the most awful experience of my life but now I have a better understanding so thank you xx

OP posts:
WaltzingBetty · 30/12/2021 08:14

I'm glad it helped @Footballfrenzy2021
It does sound as if your dad is comfortable and settled and passing peacefully.

It's totally normal to have the concerns you (and many of the rest of us) have had but I'm glad you feel more comfortable with the process now.
It is still hard though, so take care of yourself Thanks

Starcup · 30/12/2021 10:08

@WaltzingBetty

How can asking a question be making accusations?! Most people in this thread know more than me so that’s why I asked.

Because the question has already been answered so it's unnecessary and you're using words like 'deprived' to describe loved ones going through this process right now and telling us how 'aghast' you are.

The words you've chosen imply that you think people are being caused to suffer when thats not the case. Why else would you choose those words? You aren't just asking an (unnecessary) question, you're judging HCP and concerned relatives who are dealing with this difficult process right now.
That's unkind

Oh, so I’m the only one that found it uncomfortable to read eh? Many people that have shared their experiences found it uncomfortable and explained why so I’m their posts….

My reactions was from the experiences that were shared and as pointed out by another pp, probably because most people don’t know what to expect.

Stop being ridiculous.

Starcup · 30/12/2021 10:09

To add, most people aren’t describing it as a great experience are they?! They find it difficult.

Starcup · 30/12/2021 10:12

@WaltzingBetty

That was to *@Starcup* Please consider that this is a thread of people currently dealing with bereavement.

Saying 'get over yourself' in response to being asked to rtft and not tell us how aghast you are at choices currently being made for our relatives is pretty unpleasant

Funny how no one else has brought anything up except for you?

No one else appears to have taken it the way you have. You’re the one creating something out of nothing.

I could hear the distress in the posts and that’s what I was aghast at.

DaisyNGO · 30/12/2021 10:21

@Footballfrenzy2021

I would like to thank everyone for your kind replies. This thread has made me realise that we are the ones in distress & my DF is actually comfortable and calm. We have never experienced this before & we were completely unprepared. We are also very lucky that the hospital are allowing us to still visit (they have set a bed up in his room so my Dsis is staying with him). To us it doesn’t seem possible that he’s not in any pain/hungry/thirsty but through your explanations I realise he’s not & unfortunately this is just the process of a body dying. 💐 to anyone who has or is having to live seeing a loved one like this. For me it really is the most awful experience of my life but now I have a better understanding so thank you xx
Yes, it's so hard for you all. He will be calm and comfortable and if you see any signs of anything else, they should alter the meds accordingly. Big hugs Flowers
WaltzingBetty · 30/12/2021 10:32

Stop being ridiculous

@Starcup perhaps if you find this thread so distressing you feel the need to repeatedly post a unpleasant judgements of bereaved people, telling us we're ridiculous, and to get over ourselves because you're 'aghast' at how we've managed the worst thing that's happened to us then maybe it isn't the place for you.

Posting here isn't obligatory. If you've nothing helpful or supportive to add, it would be kinder of you to choose to stop berating grieving people

Somebodylikeyew · 30/12/2021 10:34

@WaltzingBetty

How can asking a question be making accusations?! Most people in this thread know more than me so that’s why I asked.

Because the question has already been answered so it's unnecessary and you're using words like 'deprived' to describe loved ones going through this process right now and telling us how 'aghast' you are.

The words you've chosen imply that you think people are being caused to suffer when thats not the case. Why else would you choose those words? You aren't just asking an (unnecessary) question, you're judging HCP and concerned relatives who are dealing with this difficult process right now.
That's unkind

Well said Waltzing.

OP i have been where you are with an elderly parent, it was two weeks for us but deeply upsetting and stressful. Sending you love and hoping your Father’s suffering is over soon Flowers

Starcup · 30/12/2021 10:45

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk guidelines.

WaltzingBetty · 30/12/2021 10:53

Your unreasonable responses are exactly why people will still be ignorant in the future and still not full understand what happens. People like you will shoot them down for daring to ask.

You chose not to read the thread - where I and other posters had actually already answered your question

Instead you chose to use unpleasant words to judge us
I am not the only poster who has been upset by your posts - again rtft

You continue to choose to attack bereaved people who have repeatedly pointed out that your attacks are upsetting.
Please stop

Starcup · 30/12/2021 11:39

@WaltzingBetty

Your unreasonable responses are exactly why people will still be ignorant in the future and still not full understand what happens. People like you will shoot them down for daring to ask.

You chose not to read the thread - where I and other posters had actually already answered your question

Instead you chose to use unpleasant words to judge us
I am not the only poster who has been upset by your posts - again rtft

You continue to choose to attack bereaved people who have repeatedly pointed out that your attacks are upsetting.
Please stop

🙄
lynntheyresexswappers · 30/12/2021 11:49

Can you please stop bickering on a thread which is to support the op - it's unbelievably inappropriate.
@Starcup you have attempted throughout to make this thread about you. Out of respect for the op, stop picking petty arguments, and leave it there. This is the most difficult time for their family, and they do not need to listen to you shamelessly carrying on.

@MNHQ can you please take a look at this thread.

ShowOfHands · 30/12/2021 12:53

OP, I wish you all the love and peace I can.

I was with my Grandma through her eol care and she lasted 3 weeks. It's been 2 years now and I recognise so much of what you're describing. There is real strength and peace in seeing your own distress as separate from your loved one. I know that my Grandma was comfortable, cared for and not distressed and actually, in the strangest of ways, it taking 3 weeks was healing for us. It became the status quo, we had time to ask questions, we began to understand the processes and saw that she didn't need or want food or drink. It was gradual and ultimately, a very good death. She was warm, not in pain, surrounded by love and it was a privilege to support her through it.

It is so very hard I know and I feel for you watching your loved one at this end stage. But you are doing and being everything he needs. Eat, drink and sleep as well as you can. I hope he remains calm and pain free.

Somebodylikeyew · 30/12/2021 14:14

I’d also say please make sure both you and your sister keep up some “normal life routines”- showers, meal times, getting out for a short walk each day, trying to delineate day from night if you’re in the hospital etc. This will be a lengthy road- not just the hospital bit but everything that comes after someone passes away- so please keep looking after yourselves in it.

WakeUpLockie · 30/12/2021 14:19

I’m so sorry OP. My grandma went like this in the autumn, it is inhumane. As you say, he’s comfortable and the family are the ones suffering more, so that’s something. But I’m sorry it’s so traumatic Flowers

TillyTopper · 30/12/2021 14:32

My wonderful Dad was in the same situation just before Xmas last year. He stopped eating/drinking apart from wetting his lips and was like this about 12 days before passing. CV19 was really bad in the hospital and he also contracted it so was put into a CV19 ward. I was allowed to see him on the evening he passed away. I let it be known to a nurse that I'd like him "very relaxed" because I didn't want to see him suffer and we knew he'd not come out. Whether they upped a dose or what I don't know. But he passed away very peacefully 4 hours after that conversation whilst I was holding his hand. I guess what I am saying is do listen out for any "cues" they may give you. I hope and your family take comfort from the happy memories you have of him together.

Pinkchocolate · 30/12/2021 14:33

@Footballfrenzy2021

I would like to thank everyone for your kind replies. This thread has made me realise that we are the ones in distress & my DF is actually comfortable and calm. We have never experienced this before & we were completely unprepared. We are also very lucky that the hospital are allowing us to still visit (they have set a bed up in his room so my Dsis is staying with him). To us it doesn’t seem possible that he’s not in any pain/hungry/thirsty but through your explanations I realise he’s not & unfortunately this is just the process of a body dying. 💐 to anyone who has or is having to live seeing a loved one like this. For me it really is the most awful experience of my life but now I have a better understanding so thank you xx
It’s definitely worst for those watching, I’m glad your DF seems comfortable now. My heart goes out to you. I lost my DF at the start of the year and watching him literally waste away still haunts me. Like you said, it’s inhumane and seems so cruel. He lost four stone in two months. I also found it hard to process not being able to give him water, although the little sponges did help. I hope things are as peaceful as they can be for you and you have support to get you through this awful time. Sending strength OP. I’m so glad you are able to be with him, that will bring you comfort when the time comes.