End of life care - how long?

[Namerchangee]

My 88 year old DF was put on end of life care 11 days ago. He has pneumonia from aspirating and a bowel obstruction that is inoperable due to his age and fragility.

He’s comfortable and has been on a syringe driver for over a week. He is very heavily sedated. He hasn’t had food for 11 days and stopped being able to drink fluids about 3 days ago. We’ve been called in twice due to breathing changes but they have righted themselves both times. His breathing is now even and shallow.

He has lost so much weight that he looks almost unrecognisable and I’m finding it all so painful. I feel totally numb and that I have no more tears left to cry. I am finding it so hard to cope with and can’t quite believe I will never speak with my dear old Dad again.

Has anyone had any experience of this? Particularly it all lasting so long?

I'm so sorry OP, it's really tough. Sounds like it will be the next day or two. Rattly breathing is a sign that it's hours away.

Thankyou @SapphosRock - so don’t want to wish my Dad away but I really hope it will be soon. I just want him to be at peace.

I’m so sorry for what you’re all going through OP. It’s truly unbearable - I’ve been there and I feel for you.

Generally, it is not many days after fluids stop. But you should ask the palliative care team looking after your lovely dad for what to expect.

You won’t regret being there - but worth a word with the professionals on what to expect. You will feel numb, it’s so surreal. Please remember to eat, drink and take a break. Your dad isn’t eating and drinking because he’s dying - he’s not dying because he’s not eating and drinking.

Much love from a stranger tonight.

No. Our end of life relative only lasted a few hours. It must be so hard with it taking so long and seeing him like that. One thing I will say is our person waited until we left the room. That’s what I believe anyway. Apparently it’s quite common.

I am so, so sorry this is happening to you and your beloved dad.

My mum passed 6m ago of aspirational pneumonia, though she was a lot younger than your dad. She lasted about 2 weeks after the pneumonia started, but with about 5 false alarms where I had to run to hospital. In the end, I knew the day she was going to leave us and I stayed as long as I could (newborn at home) but she passed in the wee hours not long after I left her. She too was on a syringe driver for pain relief and symptom management, and slept and was NBM for the last week or so. All we could do was dab her lips to stop them drying out. It remains the most traumatic experience of my life, watching her fade away and jumping at every phone call.

Sending you lots and lots of love, PM if you have any questions.

@Namerchangee I’m sorry to hear you are going through this at the moment with your dad. I went through the same last year with mine for a similar amount of time. I can’t imagine it will be much longer, maybe a couple of days. I know how agonising it is to watch someone you love go through this even though they are heavily sedated. You’re not wishing him away but you want his body to be at peace and for you to be able to grieve. This part it is the hardest, I always thought that death is the hardest part but for me the anticipation was the worst - consuming and gut-wrenching. Your dad will still be able to hear you until he passes, you can still talk to him.

Thankyou all so much. I’m so sorry that we have all experienced similar situations. We are heading into day 12 today and while I am hopeful that it will be the last I am struggling to have that thought in my head as it means my Dad will pass.

This feels exactly where we are at the moment @crispyeggs and I am so sorry that you went through this too. My DF is/was a very private person so I imagine that he will pass without either myself or my DM with him.

So sorry to hear you're going through this with your dear DF. It's so hard to watch and wait. He's struggled for so long that the final rest, despite being so sad, might come as a relief. Look after yourself and those you love.

Sending you peace for the days to come, it's so hard💐

I'm so sorry for you and your dad. We sat with my best friend when she was dying, and it was three weeks of hell for her so I'm glad your dad is comfortable. No-one could believe she was still going because of the amount of drugs in her system which should have killed her much earlier. She obviously had a strong heart and I'm assuming your dad does too. We held her hand and talked to her, even if she seemed unconscious. I hope your dad has a peaceful end.

So sorry OP. We also went through this with my mum. She was on the syringe for a few days. I'm sure it won't be long. We were willing my mum to let go in her last few days, it is so tough.

I'm really sorry you are going through this OP. I hope your Dad has a peaceful end of his life.

My dad was also put on end of life care 11 days ago OP. He has kidney failure, had broken his hip and has a mass on his lung. The cocktail of drugs he has been taking for the past six years can no longer be balanced and medication has been withdrawn. We were called in 10 days ago and told he was deteriorating and was moved to a quiet hospital near us. Since then, he has rallied and is eating and drinking but is not making any sense when he talks.
However it's obvious he is getting weaker and more confused. He is now being moved to a nursing home as he no longer fits the criteria for an end of life hospital bed. He is 87vand this will be the 4th move since around Easter time.
Our problem is getting my 87-year-old mum to accept that he isn't 'getting better' when he has a good day and he will never come home.
It's hard. On some ways I wish he had gone when we were called in as the roller-coaster of good and bad days and managing mum's expectations are horrendous.

I’m so sorry you’re going through this @Katypp.

My dear, sweet old Dad died peacefully this morning. Thankyou for all of your kind words.

I’m so sorry for your loss,

💐rest in peace, dear namenamchange’s dad!

I'm so sorry for your loss and am glad for you that your lovely dad died peacefully. Look after yourself x

I'm so sorry for your loss, very glad he went peacefully xx

I'm so sorry.

So sorry OP. The world feels a different place when you lose a parent doesn't it.

Take care x

Sorry you've lost your Dad @Namerchangee. I lost mine 3 weeks ago so I know how you're feeling. He's at peace and you did your best for him, take care of yourself x

Sorry for your loss OP, he is at peace now. Hopefully you feel some relief that his body can finally rest. Thoughts with you and your family

Sorry for the lost of your DF, OP. Lots of hugs. Xx

Rest in peace xx