End of life question - sad subject

[SunsetSkies11]

My lovely dad is now at the end of his life. He has dementia, and has recently suffered a stroke. The doctors withdrew feeding and fluids, we are now in the heartbreaking waiting for the inevitable stage.

His oxygen saturation level is showing 65 on the finger monitor. It was 75 earlier today and has been dropping all day.

I'm now left wondering the question no one knows the answer to... how long do we have left?

I'm so sad.

I'm so sorry. I don't know the answer to your question, but also lost my dad with dementia to a stroke, so just wanted to respond.

The waiting is awful, you don't quite know what to do with yourself do you? I played my dad his favourite music and just held his hand for hours until he peacefully went.

For me, the only relief was that he was free at last from the hideous dementia that had already taken his personality, his humour and his spirit.

Take care of yourself, so sorry.

Oh so sad - sending a virtual hug. My lovely mum took a couple of weeks to slip away even after she stopped eating. Feet and sands getting colder are a sign that it's coming

@SunsetSkies11 firstly, let me say that I am thinking of you OP.

My dad died in July last year, shortly after my first baby was born. It’s horrible to see them like that.

From experience, we were given the news that he was receiving end of life care on 4th July, his birthday. He passed 8 days later on the 12th July.

I am going to go into detail here, so please only read if you feel ready.

I don’t know too much about oxygen levels as dad was at home, however he stopped eating and drinking as he couldn’t hold anything down and my mum would rub a wet sponge on his lips.

His voice gradually lost its strength and became weaker until he couldn’t speak. I would say this was 2 days before his passing.

The day that he passed he had his eyes open but he wasn’t really looking at anything. It was as if he was looking past you. He was unable to communicate at all.

He died peacefully that evening.

I am sending you all of my love and strength at this difficult time. Please feel free to message me if you would like to xx

@FuzzyBrain3000 yes that's it... the relief will come I know. Dementia hasn't been kind to him at all. I'm actually grateful the doctors suggested withdrawing all care as they could've decided to continue, which would have left him long term in a semi conscious state.

Im sorry for your loss too. It's been a couple of weeks without food. Only a few days without fluids. The doctor said he could survive like this for up to 10 days as his body doesn't require any energy.

@Capricorn8990 I'm so sorry for your loss. Thank you for replying. I'm sat with him now and don't know what to do with myself.

@SunsetSkies11 hold his hand tight and talk to him. Talk about all the good memories you have and how much you love him. X

I'd echo talking to him, hold his hands. Tell him things about your life, things you remember about him, happy times.

I'm sorry OP.

I’m a nurse and I’ve worked in a service providing end of life care for a while now. I work in the community so we don’t have monitors on at all, but we do look for other signs that death is imminent. Saying that, the honest truth is that you never truly know when death is going to happen until you’re right on the cusp of it, and even then some people take you by surprise.

If there’s anything you’d specifically like to ask please feel free to, but I know there’s a good thread in AMA which has lots of information about end of life care.

Take care of yourself

I'm so sorry. Where is he? Could any of the palliative care staff help advise? Not the doctors. Staff who are used to spending a lot of time with end of life patients.

Just before my Dad died, we had Marie Curie night nurses at home and they were well able to say 'I don't think it will be tonight' 'he doesn't have long left' and 'you'd best get anyone in the room who wants to be here'.

Sorry op, it must be so hard for you and your family.

No one can say how long.

My advice would be to try to not focus on or take any notice of the numbers on things like oxygen saturation monitors because at this time his body will be shutting down and it will not be accurate so it’s not giving any meaningful information.
Look at your dad instead. Does he seem calm and peaceful, is he sleeping and settled? Does he look comfortable and pain free?
That’s what matters, not numbers on a machine.

Hi op I really don't know what to say but just to say I'm thinking of you.
It must be very hard, very weird and very sad.
I have no experience of being with someone when they pass but often see threads like yours and think gosh what do you do, how do you cope.

It must take enormous strength in the face of the unknown.

Sending hugs to you both xxxx

So sorry OP, just keep talking to him.
Tell him how your day has been, what DC, nieces, nephews (or anyone special to him) has been up, what youre planning to do, talk about nice, happy memories you have of him etc.

They do say the last sense to go is the hearing?
Just keep talking, as normal as you can. Play his fave songs, talk to him about his fave tv shows etc..

So sorry youre going through this, I can remember holding dads hand, I was only 20 at the time, I'm almost 32 now and I have had a child since which I know he would have doted on. So sad he never got to meet him.

Keep your chin up OP, it's going to be tough but it does get better.
Sending you lots of love and hugs xxx

It's an impossible question to answer 💐 and an awful position to be in. I sat and read a book to my dad when he was dying. When DH was at end of life I just used to witter on to him about all the things we'd done. On the night he died I told him it was ok to go and see his mum and dad if he wanted to, I think that was probably the hardest thing I have ever said but I knew that sometimes the dying needed permission to go.

Holding your hand from afar.

I agree. Earlier on, the day before, he had been talking and saying random names of people who had previously passed (even people I'd not heard of) who were apparently, as he'd said - there at the end of his bed, he was determined were in the room. I just agreed.
Then when his breathing changed at the end, I said "you can go now dad it's ok, you can meet "previously mentioned person", you can go dad, it's ok"

It's so hard but I really believe it helps them to go peacefullly ❤️❤️❤️ sorry you're going through this OP xxx

Sending lots of love OP. I have no experience or advice but my parents are getting on a bit and I just hope I get some time to say goodbye even though it must be heartbreaking. Wishing you every strength xxx

Thank you everyone for your replies.

He is currently sleeping, comfortable and peaceful. I've put on his favourite music and I'm talking to him

I'm sorry for anyone else who has gone through this. It really makes you wish for a kinder way to end human life in these circumstances.

I'll take note of the medical advice... his oxygen level and heart rate are both fluctuating wildly so the finger monitor has been taken off as it wasn't giving any helpful info.

How are you OP? We're here for you and thinking of you and your lovely Dad x

Thank you @Season0fTheWitch He's been stable today. The palliative care team have prescribed him more drugs to make him more comfortable. I'm exhausted. They said he could go today but I think he'll be here for another few days at least - He's a stubborn guy!

So sorry, OP.

My lovely mum had a massive stroke, many years ago, and was on fluids only (no liquid feed). The saline was withdrawn after a couple of weeks, and she survived for 2 days. It's a horrible situation all round xx

I'm so sorry, this is really hard on everyone involved. I hope there is someone who can spell you for a bit if you need to go and have a quiet cry. Dont be surprised if he finally slips away at 3a.m, especially if you've nodded off for a few minutes. Or if you visit the toilet and he's gone when you get back. Some people seem to feel a need to go with no-one there.

I have also done the OK to go if you wish but we'll be here with you if you want to stay, they died the next day.

If he is religious read to him from the kinder parts of the bible, like the 23rd Psalm. If not is there a favourite book or something he read to you as a child? Maybe remember some of the holidays you went on. If there are dead people he was fond of remember them, it's not unusual for people to see someone "waiting" for them. If it's a hallucination at least it's one that makes departing easier.

This is so sad. I hope he goes peacefully

OP, have you been offered support from Marie Curie? Their wonderful night nurses could allow you to catch up on some sleep? (I know it won't be able to help with the emotional exhaustion, but it's a help)

I sat next to my DM and read her a book from her bookcase at home. Keeps you busy doing something, if she was listening and understanding so much the better.

My DM was being fed by a tube, and the tube came out shortly after we wrote that the family's wishes were not to put it back in. So that was all nourishment including liquids. She passed 8 days later. Was a huge relief.

@anyolddinosaur
Thank you. He's not religious so we have declined the religious services. It's not his thing at all.
But I do like the idea of talking to him about 'the stuff beyond'. He has family members who died many years ago as well as more recently so I might have a quick chat about them. I hadn't thought of that so thank you.