Liver Failure and cirrhosis death, anyone go through this?

[Mary Z]

If you have lost a friend or close relative to liver failure and cirhosis, please share with me the amount of time they had in "end stage". We are trying to get some idea of what to expect....I have posted on the liver forum...but decided to ask here as well. Thank you all for your time!
Mary Z

[Jim's son]

It's probably the most asked question by family members and friends. Unfortunately it's a really difficult queston to answer - it varies

Generally,  when a person stops taking food and fluids, is bedridden, is unable to effectively clear respiratory secretions, and has a significantly decreased level of consciousness then they are considered moribund - meaning imminent death, which could translate as having only hours or days left, but certainly not weeks. Until the person reaches this point there are only educated guesses

This is only reliable in the face of supportive care only. In other words no heroics. And an accurate assessment of level of consciousness may be skewed in the presence of drugs used to make the person comfortable. However, there is validity to the premise that pain will actually keep you alive longer, and it's always an ongoing challenge to find the balance of pain and/or anxiety control. Remember, too, that acute co-morbid events, ie: coronary, pulmonary or spontaneous bleeding and clotting can occur at any time and hasten death

Additionally, it is not uncommon for liver failure patients to wax and wane in terms of their mentation, confusion and overall state. Paradoxically, it's a laxative (lactulose) which can improve their mentation by converting and clearing amonium from the system - which is a function of a healthy liver

So it's a roller coaster I'm afraid.

[Mary Z]

Yes,
The rollar coaster you DONT want to be on. It has been difficult and she forgets things from one day to the next. Not everything...but her short term memory is bad...long term good. She is NOT drinking at least.  The lactulose is already being administered. Today Hospice came again and she thought she wasn't dying. She called me over to the house to tell her the "truth". I kept it honest and short. I said...your liver is not working and it is not making your prognosis very good.  I'm just the daughter-in-law and she had a daughter saying....we'll save you...you won't die. I went and got my husband. I feel so bad, but the daughter really is hurting her by telling her she will get a transplant when she is not a candidate, and will not qualify.  I can handle the illness, but not the well meaning people who want to give her "just one or two glasses of wine". They think they are helping, but it will kill her much more quickly!
Thank you for your response. It sounds like you have a lot of medical background.

[Anthem26]

My father, who had recently passed away in early June from liver cancer (he had cirrhosis and hepatitis too), endured pretty much all of the manifestations that Jim's son described... During his last days, my father was essentially absent to any physical activity. He was prone on his deathbed, mute, and deadlocked (like a vegetable). The only movements he made were swift and agonizing hand gestures (he would motion his hand over his crotch area when he leaked). My father, at that point, had stopped eating and taking in fluid, making him very listless and insensible (he would usually sleep most of the day with his breath dragging - it sounded as if he was grasping for air after being choked). Although he was physically blunt, he was still mentally able and felt (He managed to lift his spirits, gather the last of his strength and give my sister and I a hug before he left for hospice). When he arrived at the hospice center, he was relatively in the same state, except he was shedding tears all day and night when my mother was there to comfort his last hours (My father was a man who never showed his emotions, let alone talk about them. Through all the terrible tragedies, I've never seen my father shed a tear. He went through the deaths of two siblings and never cried about it, and yet here he was...the hug he gave my sister and I before he went to hospice was actually the only time he has shown any type of affection for us - but of course, we always knew that he loved us very much). He died the very next morning, right after when my mother gave him a kiss on the forehead and right when she went outside to give some calls to close family and friends (I believe he went that way so my mother wouldn't have to witness his death). His passing has suspended reality for us. It was way too soon and completely unfair. Although deeply sadden about his passing, it's still feels very surreal to think of him as being literally gone. Even though i know I'll never see him again, his presence and memory will continue to live on in my heart...

[Jim's son]

Anthem26 - you describe a traumatic experience, and I can empathize, as I've just recently  been through a similar experience with my dad.

You summarize almost identically the way I felt shortly following his death.

During the last days looking after my dad, I almost wished for his death in the hopes his suffering would be over. As such  I also thought I'd be greatful at that point, and that I could move forward knowing this terrible and sad ordeal was over.

As inexperience  taught me, I was very wrong about that. In fact it was only the beginning - at least for me.

I prounounced him dead May 25th at excactly 0221hrs - a date and time forever etched in memory, and I am no closer to moving forward from this point in time as I am re-living it.

For me the "sureal"-ness  changed into intense anxiety at times as the cold, hard reality sets in. There is also a sadness about me - an actual physical thing, I can feel behind my eyes, something I've never experienced before. There are times when I can block this, but only if I'm distracted. Under the surface it's always there.

So my life has changed dramatically, and I'm not the same person I was before. I am the worst person in the world to show you how to handle your grief, as I am failing at it miserably.

I just wanted you to know, you are not alone

[Mary Z]

Hey,
You know something......you are dealing with someone whom lost their own father ten years ago and their own mother seventeen years  ago. I am not thinking you are failing miserably......just being honest with someone who understands how awful it is to lose a family member and that sometime having medication is a GOOD thing. Do NOT fail to recognize that you have needs and must meet them. The people that say you should not have it are not thinking of you, just their predisposed notions that medication is NOT good. I believe it is for someone like you who is in distress. I care about you and wish and pray for you the best in the future~!

[Jim's son]

Mary

Thanks for your support and kindness

I'm in agreement with you in that your mother-in-law needs to know the truth. However, the liver has remarkable reserve (some people don't even show symptoms until it's 90% damaged), and I know of many who are still alive today who really should'nt be.

I would imagine a transplant would be out of the question, unless she is rich and/or famous. I know of very few people who would be willing to donate an organ to someone who has either willingly or unwitttingly destroyed their own

A family meeting involving the doctor and perhaps a social worker (I'm a big fan of SW) to discuss these issues might be a good idea. You may not achieve consensus, but at least you can say you tried. Besides, an objective third party is often useful in bringing some clarity to these difficult and emotional issues

Good luck. Thoughts are with you

[Old Hippie Chick]

I'm 51 F and have several illnesses that I am dealing with. Cancer, MS, Liver has enlarged to reach into my left ribcage and is pressing up against my stomach. So I have liver issues. Have had for many years. Now I have a Friend whos Mother is in final stage liver failure. This is a recently reunited bio-adoptive family with only 18 months with their Mother before her kidneys then liver failed on the 13th of this month. She was sent home to Hospice Care the 16th. She is a diabetic added to list.

Hospice care took Mother off 10mg morphine yesterday afternoon. Mother became restless, wanted out of bed, tried to get out of bed, the thoughts of restraints crossed their minds last night. She is unable to rest comfortably, pulling at clothes, picking at body, tossing hands and arms, then breaking finally to sleep, when she can.

Urine output is low, feet and legs are blue, body is swollen, but she will ralley to wake and see people as she has been able.

She has had conversations with unseen what would seem to be family members, who she had clearly told "Because I'm not ready to go! That's Why!". That was in last 24 hours.

No food, no water, no medication. Not even an air line for easier breathing.... I had thought I would use Hospice care when I am finally in need... But my God...what is happening here is not kind to the family or the patient. I would hate to think that this will be allowed to happen to me...... Thank God I live in Oregon where I can say when....

Any words of advice for my friend and her family.... any hints for me later?

[dlr2007]

I'm sorry to hear about your health problems. You are a very giving person to be helping your friend with her mother.
  I can;t believe Hospice is taking her off her morphine! They are supposed to make one's last days comfortable. My mother-in-law passed in March of this year and she had hospice- they were wonderful, I thought. But she was in a nursing home, withthe nurses administering Percoset, then Morphine and Ativan in her last couple days. I don't know if Hospice is anti-med- it wouldn't make sense if they were, since in the last stretch it should be about being relieving symptoms, not suffering through them.
  I just realized this post is from August. If youcheck back and read this- how's it going? I hope the issues with Hospice and meds got resolved.
  Best of luck to you with everything.
Hugs and Prayers,
Dee