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End Stage Liver Disease....My mom is dying... what should we expect???
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End Stage Liver Disease....My mom is dying... what should we expect???

In 2007, my mother was diagnoised with End Stage Liver disease. They only gave her 3 months to live and was placed on hospice home care. Her disease was brought on because of alchole, but fortunately enough, her liver still had a little more "life" in it, and she pulled through. After a year on hospice, they decided that her liver was well enough to function her off hospice. The unfortunate part is that she continued drinking... non-stop.
In 2009, her liver began to show signs that she was ending back to where it was.
She is a very small frame (only about a size 6) but looks like she's pregnant with twins. The doctor's did all they could to stablize her but unfortunately, with all ther doctors were doing, she'd go home the same day and drink.
In 2010, she's slowly declined. Now, as I type this, I'm sitting next to her in the hospital. Christmas day, I brought my mother to the hospital because she was bleeding out her nose, vomiting blood, and her feces where bloody. Doctor's placed her in ICU and "tied off" the verisee veins (spelling??? ) in her esophagus, which so far is successful. Then later that day, "drained" 7 liters of fluid off her stomach and did an ultrasound that determined that the TIPS was clogged (preformed in November 2010). A couple of days ago, doctor's said her amonia (ammonia) level was at 96 (below 20 is normal) and her kidneys were (I don't know if I'm right on this one, I may have misunderstood) at a 2 (failing). And yet again, that evening they "drained" another 6 liters off her stomach and "unclogged" her stunt. This morning, I was told there was a TINY improvement where her amonia (ammonia) level is 91 and kidneys are a 1.73 (which lower is better).
We have tried to not get too excited, because the doctor's are saying they are exhausting all options in helping her now and we are waiting for tomorrow to see if her Primary Care Team, GI Team, & Kidney Team of doctor's have determined wether or not her kidneys are failing because of her liver. They say if it is the case, they only give her 3-4 WEEKS to live.
My mom has her final will stating that she is not to be resusitated nor intibated, and she's requested no dialysis. She refused a cathiter for the first 3 days in the hospital because it was uncomfortable, until I begged her to do it, but if I leave for a second, she pulls it out and bleeds alot. I feel that she's given up.
I think now though, she sort of has a regret for drinking and not stopping when she was well enough to "recover", but she's trying to refuse all options.
I respect my mother's wishes, and if it is to die, so be it. I will not like it, but I will support her. So, as I go down this road with my step-mother (they are life partners), we are left to wonder what is going to happen. We've heard how it will be painful and that it's a slow death, but does anyone know details??? What will happen to her? She is sleeping 90% of the time now (not medicated, nor has pain medicine, not even an IV). The 30 minutes a day she is awake, she is dilusional and doesn't comprehend anything. She seems almost like she's in a dream. She's slowly not talking much with when she is awake and when she does talk, we have no idea what she's talking about. She's a yellowish color (jaundice maybe?).
Anybody who has been through this with a loved one or a medical professional with this experience with ANY information would be helpful. We would like to know a little more at what to expect in the sense that we won't be blindsided by anything that will happen with my mom. (Will she bleed out more? Will she pass in her sleep? Will she fight for her final breath? Will she asperate? Will she slip into a coma?) Details are preferred and trust me, I'm not faint at heart by no means, so please, if this site will allow, I ask of you to tell it.
Thank you & God bless.
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18 Comments Post a Comment
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Avatar_f_tn
I do not know the exact details, step by step, but your mother will slip into a coma, her body functions will shut down and she will die.  If need be, they will keep her as comfortable as possible perhaps to the point she will not be aware of her surroundings or anyone in the room.   If she has any lucid moments it would be a good time to say good-bye and tell her you love her.  

I'm sorry for your loss,

Trinity
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Avatar_f_tn
Recently, my mom was sent home on hospice. Her decline is not was expected. She has taken a major turn for the worst since she left the hospital. She's almost like in a coma, but sometimes wakens and is dilusional or confused about everything. She makes attempts to get around (out of bed, to the bathroom...which I will remind you is at the other end of the house). She's fell atleast 2 times every day, of which only 3 she's actually hurt herself. She talks about things that make absolutely no sense at all.
As of yesterday (1/11/2011), she started urinating on herself, which now, hospice has put a cathiter in. She woke up for a little while when I first came back in, but all she did was look at me. She smiled a little and looked like she wanted to say something, but didn't have the strength to say.
I begging that if ANYONE who has experienced this, or by chance a physician who has treated a patient this bad off, or if you have experienced this with a loved one.... ANY information is helpful to what more we could prepare ourselves for. My mom's life partner is far more emotional than I am, which to me, is completely understandable (a mother/child love is completely different than that of a significant other). We are asking for you to please look back at what did happen in your situation and try to give us a bit of aspect of what we could be looking foward to.

I will continue to post additional comments to keep everyone and anyone updated.
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475300_tn?1312426726
Please help my confusion, is she at home or in the hospital?
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Avatar_f_tn
Thank you... that's what we are expecting for right now. Considering she does not want life support...can she live in a coma??? I know that there is no way to determine (especially online) but is there a possible estimate of how long my mom will continue to suffer???

And thank you for the added comment with saying our good-byes :)
I feel I have done so...My mom & I have NOT had the best of relationship & most could tell you, they would of never thought I would be by her side as I am (they figured it would be my brother because they were much closer). I've let my mom know all the details of how I feel about her and that I'm ready to let her go.

By the way...I'd like to share this with everyone else. If you get the chance, listen to the song Mama's Song by Carrie Underwood. We cried together listening to it.

And again, anyone else with any other information is greatly appreciated.
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Avatar_f_tn
When I had my first post, I copied it from a previous discussion forum where I had no responses. I found this website....

She is now at home on hospice home care.
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Avatar_f_tn
I have no information to offer you but did want to extend my sympathies.  I hope that your Mom doesn't suffer.  I am glad to know that you are at peace and hope that always remains with you.  I hope that you find some solace at this web site.  

For what it is worth - many nurses have observed that often when someone is terminally ill they will have a brief time (12-48 hrs.) of seeming to be better.  Anyone in your family who needs to say goodbye might like to know to keep an eye out for this response.  Maybe have your hospice worker ready to make some calls as necessary.
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475300_tn?1312426726
Well you found a good site and thanks for clearing that up for me.  I don't have any knowledge to offer you but am extending my sincerest sympathies.
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1523804_tn?1316564509
Hello cherishedlove, I have seen several people prepare themselves for dying, one from ESLD. It is not clear that your mother fully understands her situation. I cannot comment in a medical capacity, but it appears that your mother does not have long left to live. When someone understands they are dying, they go through several stages till they come to accepting the situation. An acquaintance of mine died from Hep C related cirrhosis when in his early 50s. His belly became very swollen, but he was lucid the whole time. He passed and vomited blood at times and then final fell into a coma and died after several hours. He was only bed-ridden for about 4 days before he died. Before that he could move around with a little help. He had no problems with dying and left peacefully. It seems your mother also is not going to 'fight to the last' so hopefully her final days and hours will be spent peacefully. A terminally ill person doesn't need to hear that "everything is going to be alright". A loving family member or close associate needs to be supportive and accommodating, caring and strong. It is difficult for someone to leave if they think that things will fall apart once they have gone, but at the same time they don't want to be considered irrelevant. I am sorry I can't be more specific with what to expect, but I wish you strength to get through it and hope you and your mother are spared unnecessary suffering.
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1477908_tn?1349571310
My heart goes out to you and your family during these dark days. Some time ago I found this thread asking the very questions you are. It's been ongoing for a couple years and sheds alot of light on those final stages from others that have walked in your shoes. There may be some more current that you could PM if you wished. Hope this helps a bit.......

http://www.medhelp.org/posts/Grief--Loss/Liver-Failure-and-cirrhosis-death--anyone-go-through-this/show/40139
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897070_tn?1320656229
My deepest sympathy to you, this is such a difficult time. My father died from liver failure and all I can say is that for him it was peaceful as he eventually went into a coma and died after about four days.I dont know much about these things but imagine that he had no consciousness at all so I dont think there was suffering involved, it was quiet and peaceful.

Godbless You and your family
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Avatar_m_tn
sorry your mom and family are going through this. although it can be one of the worst ways to die most of the time it is like many other diseases that cause death. Like the others posted usually a coma precedes death. Since your mothers wishes were not to be put on life support it shouldn't be a lot of suffering. Sometimes hospice can give morphine to make the patient comfortable.
All you can do is be by her side when the time comes.

My prayers go out to you
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374652_tn?1311302831
I think if there were anything you would like to say to your mother, such as. I forgive you for anything you may have done and I ask your forgiveness.
Also at this time your mothers "energy" may be separating from the body and this is a time of confusion so you may put your own energy into guiding her to the light and encouraging her not to be afraid.  
You might guide her into a beautiful, safe place where she can feel love and move along her journey leaving behind the suffering she experienced.  Remember love never dies, this body is impermanent and the best thing we can do for someone is to support them on their journey.
I wish your mother a beneficial rebirth and I hope my belief does not conflict with yours
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Avatar_m_tn
Your mother sounds like she has been very lucky to have you by her side through her addiction and illness. You obviously have a lot of love for her and I know it has not been easy for you to watch her decline.

I think people covered what the end looks like. It takes a lot of strength to be as realistic and honest with yourself as you are.
Say your goodbyes and take care of yourself,

Dave
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Avatar_m_tn
I wanted to add something, you make me feel blessed that God gave me a daughter.

I will never forget what an old man told me when  my wife just gave birth to a baby girl,
He said,
"you have been blessed. you now have someone to take care of you when you are old and sick"

Now I understand what he meant by that.......
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Avatar_f_tn
its october 21 2011 I am not sure if your mother is still with you but  my heart goes out to you eaither way it is a very hard  thing to watch someone you love dyeing, and even harder when it is alcohol related ESLD,
I am going threw the same thing at this time with  my BF and it breaks my heart to know it did not have to be this way , he also choose to continue with the drinking despite the doctors best efforts to keep him alive and try to give him a better chance, he has also gone in to kidney failure and has the very large abdomen with vericee bands in the esophagus, he is heavily  medicated on roxinal and incoherent but still gives the appearance in facial looks that he is in pain often, occasionaly he will blurt things out from the past or say things that make no scence but doesnt seem to know anyone anymore or even where he is, his doctor gave him less then 2 weeks a month ago and he still hangs on I dont know how as they say his liver is so large it is crushing his heart, I dont really know what the end will be like I dont feel he has had that moment or hours of clarity that we could all say goodbye ,I think to respect a persons wishes is right although very hard when the choice is death, but for me atleast there is an elemate of anger as well as sadness because of the knowing they could have stopped or atleast slowed the process of the disease and choose not to , knowing that so many people would be left behind to greive there loss , I know alcoholism is a disease in itself but there are so many places to turn for help if a person wants the help. so I feel for your loss deeply and I dred the comeing of mine, and to those of you who may read this and have this horrible disease PLEASE!!  stop what ever is destroying your liver get help love your self and your family & friends enough to stop this distructive disease and embrace the life god gave you , God Bless you all.
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Avatar_f_tn
Does that sound harsh? To say they're selfish - does it sound harsh?

It seems you are all in the US, I'm in the UK. My mother died July 27th 2011. I nursed her for 2 of the 6 years I looked after her life. I am livid. I did everything within my power to make her well. Other members of the family abandoned her, saying that she had made her 'choices'. It wasn't a choice I could take. I took over her finances and household management 6 years ago, and managed to help her save a sizeable sum of money. Unfortunately, this seemed to put her back in favour with those who didn't deserve mom. Still, they never came. She was in and out of hospital. Everyone thought she was such a cheeky little thing, in hospital and she always recovered well - that ascites? Yes; it makes them look like they're pregnant. It's like the tide coming in. And it can take some turning around. It fills their body cavities - all of them, the organs too - and if the tide rises high enough, it fills their lungs, and they drown.

It's agonising, to listen to your mom breathing though water. Crying about missing her family when you know she's dying and they're not here. To sit there and say "They do love you, mom. I think they're struggling with their own lives at the moment." when really, what you want to say is ... they're selfish.

Two weeks before mom died, they came and took her away from me. Her money disappeared but it wasn't important. What they did to cover their tracks was important. What I realised, about the way she went, that was important.

I felt a constant compulsion to make a project of her health. I invaded her privacy, by discussing her every health issue with her doctor, and attempting to introduce new diets: low sodium; high calorie. She wanted 6 sugars in her tea, and salt all over her food, several times during her meal. I couldn't stop her. She, quite rightly explained that she had given so much up. What could I say?

Then, I lied about going away. I went for three days, with my partner, to a forest cabin. She had tried to go shopping, in the car, got in a mess in the car park until the store's parking attendant called the police to check she was okay. They, very kindly, but non-the-less, gave her a ticket. She called me, and she was so frightened that she said she wanted to die. I got angry and said that I was sick of hearing it. I told her how she had to meet me half-way; that I could help her if she didn’t help me to. How that, if she was that intent on dying, she should go ahead; that there was out of options and there was nothing more I could do to make her want to live. She called the family. They said she made some story up about how I hadn’t been round for weeks or months or something.

They came. They took her. They didn’t know about her tablets or her healthcare. Her health declined. She pretended to take her tablets. She refused to go into hospital. She died two weeks later. Something that I had not allowed her to do.

Three months on, everyone’s moved on. If you were in another country, missing your folks, no one would expect you to stop yearning for them after three month, but people think it’s a reasonable distance to expect to recover from grief. In truth, it hasn’t really happened yet. I’m currently just missing mom. I haven’t even begun to understand what ‘gone forever’ means. That will be my next step.

I had arranged and paid for her funeral – with mom’s money, not mine. I had mom bought back home, as no one had wanted a funeral. As I waited at the funeral parlour, to see mom, I had a call. My eldest brother had threatened the funeral directors with legal action if they did not return mom to them. He is an alcoholic of the worst degree, and he threatened to exclude me from the funeral – I don’t know how he managed it but I was no longer privy to the arrangements. With some personal risk, the funeral directors detoured the coffin to a sub-branch, and arranged for me to say goodbye to mom.

I made it to the funeral, and stood alone, my family on the other side. When the service was over, Moon River began to play, completely by coincidence. It was the last song we sang together.

Preparing for death doesn’t prepare you for death. Trying your best to manage, and giving yourself plenty of time, once they’ve gone, is the best that you can do. You’ll need a long time, but you will recover, and the sky will look blue again.
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Avatar_m_tn
I'm so sorry for your loss.  I too, just lost my mom on 1/22/12.  It's awful.  She was my best friend.  I took care of her all my life, happily.  What I would do for one more day.  She had liver cirrhosis, we think from Sarcoidosis which she also had.  She never drank, but they say it could be from a blood transfusion she had in Hungary years ago after having guillian barre(paralyzed from waist down until plasmopherisis cured it in Hungary) and lymes disease.  Yes, she's been through so much and never complained.  She was just happy to be loved and never said a bad word about anyone, just a genuinely kind person.  
I keep going through what happened and how upset I get when thinking to myself, "Did I let her pass away?".  I know I didn't, I guess I just need to torture myself a bit.  Since no drs. felt she was strong enough for a liver transplant and/or tips procedure and her kidney dr. said dialysis wouldn't really help I just feel like we let her go.
After being in the hospital for 7 days they sent us to a hospice facility. She had no IV fluid, no food, no water but they say when you are in LF/KF you don't even feel hungry. I felt terribly guilty about not being able to feed her, but sadly she stopped talking, seeing, walking, eating and lost all ability to use her muscles. Gosh this is hard. The nurses (angels) gave her morphine and tylenol suppositories to keep her comfortable. I'm a massage therapist so I massaged her daily to help with any fluid and it made a tremendous difference, thankfully. On that sad day, I noticed her breathing got heavier/faster. Then they gave her morphine and after 7 days of no food or water, her breathing slowed down.  She looked up to the ceiling and to the far right and passed. No doubt in my mind someone came for her, no doubt.  I think the only reason I haven't gone completely crazy is that she passed so peacefully.  I was holding her hand and I'm so glad I was with her.

I can't wait to be with her again someday. Year's ago I choked on mozzarella cheese and was lifted above my body and saw a white/yellow tunnel getting bigger. My 20 year's of back pain disappeared and I felt great being up there.  I almost didn't want to come back, but my ex-boyfriend did the heimlich on me and I floated back into my body. I was a HUGE skeptic about this stuff, but I guess I had to go through it to become a believer in life after death. I know we'll be together.

Thanks for listening and know that we all have each other.  I pray with each day that we all have a little less pain, but be true to how you are feeling at the given moment.  As Dr. Suess says, "Be who you are and say what you feel because those who mind, don't matter and those who matter, don't mind."

Be well.  

Isabella NJ
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