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I am taking care of my mom, who doesn’t want doctors, hospice or anyone. The only person she allows to see her is me. She doesn’t get off the couch and her appetite is going, she is not even drinking. It’s hard, emotionally. I know God is the only one who knows, but I’m a planner it helps me mentally. I’m looking for other people’s stories on taking care of someone with ESLD in their final days, what was the actual cause of death (cardiac arrest?) and how long was the care for. I’m also asking because I'm hoping my mom could maybe pass peacefully in her sleep.



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You won't be able to handle this without medical care. It will become quite devastatingly painful and you won't be able to manage care on your own. There will be a requirement for lactulose and without it death will approach much more quickly.

It is time now to access medical care whether mom agrees or not.
If she will adamantly refuse it you will wait until she is in enough pain that she allows you to access the system. While often liver failure is a very peaceful death with onset of more and more sleeping, in the case of alcoholic cirrhosis it is NOT.

The medical team will answer your questions on what to expect better than we can, but in medicine the truth is that you will have to expect the unexpected. Things are very difficult to predict and dependent on a whole host of factors.
I wish you the best. I am so very sorry your poor mom is going through this, and you as well.
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Sararose4 Jun 1, 2024
Thank you for this, it is the kick in the pants I need to do something. My only concern with hospice is, I don’t know if she thinks she is dying. She doesn’t think there is anything wrong with her. I have also been recommended adult protective services to help out as well
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I’m sorry you’re in this sad situation. Don’t we all want to pass peacefully in our sleep? I had an uncle who died of liver failure, he hung on far longer than the predictions of all his doctors. In your shoes, I would call the doctor for a hospice referral, even if my parent didn’t want it. They were a godsend to me when I took care of my dad in his final weeks. They are expert at keeping people comfortable and pain free. If there are aspects of their services your mother doesn’t want, she will be free to decline. But if she wants a pain free death, their meds are the best way to help in that happening. I wish you both peace
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I’m sorry I can’t help with your original question, but I would recommend telling your mom that you need hospice to support you in taking care of her. At least have them come out to talk to her and then you could call them in yourself later. It’s a much easier situation when someone dies under hospice care, no need for a medical examiner, etc.

I once called hospice in when I felt my husband was dying because I was not going to handle it alone. He ended up going to the hospital but earlier this year as he was declining, I told him that I needed the support from hospice in order to care for him and he was willing, thankfully.

I don’t know if you’ve heard of hospice nurse Julie on YouTube, but a quick Google shows that she has some videos about end-stage liver disease
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Reply to MidwestOT
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https://healthmatch.io/liver-disease/end-stage-liver-disease

I agree--I'd get hospice. You can talk to them about your mother's wishes that they be non-intrusive, but hospice is to help make the passing easier on both patient and the caregiver's. It's a lot to try to manage on your own alone, at home. They will have access to medications that can keep your mom comfotable and ease her passing. They'd be a good support to you both.
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My father had cirrhosis diagnosed in 2005 when he had a GI bleed. He mostly stopped drinking. Had another bleed in 2007. He went on feeling mostly fine until mid November 2021 when he complained of fatigue. By early December when I saw him he was jaundiced, no appetite. His labs had actually been normal for years. But then in December they weren’t. He spent the next weeks at home getting weaker, pain, ascites. Coukd barely walk, eating about what a toddler would when I prodded him. We went through a medical nightmare with 3 ER trips and outpatient tests before he was finally admitted to the hospital on Christmas Eve after 3 liters of fluid were drained and they suspected infection. The next day they began talking hospice. They saw “innumerable lesions” and “high suspicion of malignancy “ on his CT scan. He wasn’t able to cooperate with the MRI. They offered to do a biopsy but since he was already terminal we didn’t want to put dad through that. He left the hospital to go to a small board and care type of place with hospice on Dec 29. He began to sleep more and more. Could still get up to bathroom with a major effort. Hospice had mentioned a catheter was coming soon. He died at 2:50 am when he got up to the bathroom and collapsed on the aide who was helping him. I don’t know what was the sudden cause. I’m going to guess it was cardiac arrest from the fluid overload. (Ascites). I believe ascites was on his death certificate.
Im so sorry you are going through this. I think if you are POA you should go ahead and call hospice. You will need their guidance. Your mom will need pain relief. Also, if there is a death at home that is “expected “ aka hospice is notified, it won’t look suspicious to the authorities. Sorry to put it that way. Even if your mom refuses hospice, it’s on record that you tried to get her help. Again I’m so sorry. Please let us know how you are doing.
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Im so sorry you are going through this, it is not an easy road, in November my neighbor died of liver deasses and I supported her though it.

He didn't have much pain just a lot of uncomfort. And slowly got more and more confused. The last days for him and his family, where relatively quiet, and peaceful.

That's his story and they are all different. I don't want to scare you but I want you to be aware that sometimes the liver ,can burst at the end. A nurse on this forum can explain it much better. Because of the trauma that my friends family went through, I thought you should be aware of it

A friend of my mom's pased quite a few years ago of liver cancer and just before she did she bleed out. I'm not sure how common this is but I do know it was traumatic. Please Alva, or any of you nurses , correct me if I'm wrong

My neighbor also mentioned something about fluid come up before he passed.

Very best of luck to you, anything else or just to share , we are here to listen. My heart goes out to you
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There is no way that strangers on a caregiver forum can tell you when your mom will die.

I am really sorry that you are dealing with this alone.

Please call hospice. It doesn’t matter if your mom is in denial or not. It’s the sensible thing to do. Neither you or your mom should be alone right now.

My oldest brother died of liver failure.

One time he went into an ‘end of life’ hospice facility. He stayed there for a few days and ended up walking out. It wasn’t his time.

Many months later, he went back to the hospice facility. He had been like a cat with 9 lives for so long that I thought he might walk out again.

His nurse looked at me and said, “No, not this time. Your brother is dying.” The nurse also said that she had seen patients who they thought would die quickly linger on for a while.

My brother did linger for a few days and then he died.

He was on morphine to keep him comfortable. He had access to clergy and a social worker.

The social worker and clergy are provided for the family as well. They will continue to be there for grief counseling afterwards.

Wishing you peace as you go through this difficult time.
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