liver disease and near death

Hello everyone. I'm new. Although my mother does not have hepatitis she does have liver failure. I could not find anywhere else on the site about those with live failure due to alcoholism. I figured some would understand what I'm going through on this site.

I won't go into too much detail as a history except my mom has relied on alcohol since I was probably 5. I am almost 26 now. I wasn't able to recognize what was going on until I was 11 or 12, but it fully set in before that. 2.5 years ago she was in the hospital jaundiced and almost died. She came back and was given a second chance. At that time the doctors said if she continues to drink she will die. Supposedly she stopped a few months, but then started back up. She has had cirrhosis for the last year and never told anyone. Lied when she said every test came back normal. Gave different test result numbers to almost everyone who asked so we still don't know which one was correct, if any. She lives in severe denial.

Anyway, she went to the hospital a few weeks ago. The doctor said she has 6-12 months to live. She needs a transplant now but cannot be eligible to get on the list until she is 6 months sober. My family worked so hard to get her accepted into an inpatient program. Her doctor bent over backwards for her to allow her to be accepted. Finally she was admitted but once there her denial continued and her physical ability deteriorated. She's still dark yellow, her abdomen has been drained three times. I don't think she's made it over a week without needing to be drained. Her ankles are the size of her thighs right now. She was taken out of rehab (after 3 days) and is in the hospital again. She had fluid around her lungs this time. After another fluid drain and hard core diuretics she's feeling better. She also had a blood transfusion since her red blood cell count was very low for whatever reason. I think the rest of her life will be in the hospital. Every time she leave she swells up quickly. She's about 90 pounds now.

I live 5 hours away for school, but i do not have a good relationship with my mother. At this point I am mostly very disconnected. I am more worried about my dad and how he's handling everything. My sister was with them during the prognosis and he immediately started shaking and crying. He's heartbroken. I have a good relationship with him, but I'm just not sure what to do. My sister has kind of taken charge and is figuring things out (she's 19 years older than me).

One of my aunts is a nurse and looking at her progression she doesn't think she'll make it to the family meeting June 12. Her doctor wants a "family meeting" and we can only guess it's about end of life. Right now she has a 50/50 chance of making it 90 days. I'm reading about stages of end-stage liver failure and all the symptoms, etc. and I really don't want my dad being alone for that. My sister already flew back to Chicago for now (she'll be back in a few weeks). I just don't know if I can go right now due to personal situations going on. We've mentioned hospice once, but to him that's too final and he can't deal with that thought right now. I'm terrified of him coming home from work finding her in a coma or dead. I know he already blames himself and also feels I blame him, which I don't.

I start to ramble, I"m sorry. I just don't know what to do right now. I have a lot on my plate (just graduated, seeking a job in the limbo time of life, now this). Any words of wisdom or comfort? Any idea how quickly things may progress? Although she lives in huge denial, she may be slowly coming to terms. Today my aunt said "maybe we can all meet at a time share as a kind of family reunion" and my mom said "yea, that time share in the sky...sorry, that just kind of slipped out...." Her denial must be wearing down, i don't know. Either way, physically it's too late and she'll be gone soon. I know many people lose their parents before 26 (unfortunately) but 26 is still too young. My dad is 76 and I'm sure won't be around too much longer either...

Thank you for listening. I had to ramble and get things out. I apologize if things are sporatic or don't make sense right now. I'm not sure where I am with my head.

T2.. you have it figured out.. it's hard to say what will happen and when it will happen but as you know it probably won't be good unless she decides to live. She hasn't made that choice yet. You came to the right place and you don't need to apologize. I would highly recommend Alanon for you. If you can find a local group it would be great. It helps one to sort out all the enmeshed relationships that happen with alcoholism. It will help you understand your dad's feelings. Read about co-dependency. It will help you understand all the guilt and shaming that goes on. Your mom has many people who care about her that are in those roles. You need to focus on your life and moving ahead so that you can have a full productive life down the road. Yes, care for your dad and your mom but understand that you need to sort you out. Your mom needs to focus on what is left of mom. Dad, yes he's gonna need your love and support. Take care of you!! Take care of you in the chaos. We have both a grieving and a caretaking thread here. Caretakers and people who have lost someone to this disease talk and support each other. T2 we care and have walked the pathway that you are on. Come back and share some more. We'll be here. Sandia

T2, welcome to the forum. I have asked our Administrator to change the title of this forum to Liver Disease, but he apparently doesn't want to. Hepatitis simply means "inflammation of the liver." But most people don't know that and assume it's viral hepatitis. Alcoholic liver disease, especially with cirrhosis, is certainly hepatitis...in your mom's case, alcoholic hepatitis. We have a number of members who have fought that particular demon and also caregivers with loved ones who have fought it or given up. Your mom sounds like the latter. She has to know that all her ills are due to drinking. What does she think, that it's just bad luck?

Why does your dad blame himself for her condition? Did he encourage her to drink, perhaps in younger years when they would have cocktails together? Nobody starts out being an alcoholic or wanting to become one. It's an invisible line that is crossed from social drinker to heavy drinker to alcoholic. I am an alcoholic with 26+ yrs. of continuous sobriety. I had 7 years of sobriety when I was diagnosed with Hep C...contracted in '68 or '69 through a short period of IV drug addiction. So by the time I needed a transplant, these former problems were no longer an issue. That's the only thing that was easy about my fight with liver disease.

In your mom's case, the end is probably near. But I've also seen people come back from the brink. It depends on how much damage has been done and their ability to stay sober and change their lifestyles, diet, etc.. I had cirrhosis for at least 4 yrs. prior to transplant--probably more, but didn't have a biopsy between '94 and 2007. Hep C, which caused hepatocellular carcinoma (HCC/liver cancer) twice, has been my biggest problem. I needed a transplant to survive.

I saw myself in your words about your mom. I first realized that mine had an alcohol problem around age 10 or 11. She would often get drunk and be passed out by the time I got home from after-school activities. I was left to fend for myself as far as dinner. (Was divorced from my dad while still pregnant with me. He was not in the picture, though I had a stepdad in my teens.) I basically raised myself, so I became a very independent and self-sufficient person. I knew I couldn't count on her for anything. My mother was a successful dress designer in New York City's garment district, but 17 yrs. later, she was unemployable. After another 15 yrs. or so, she had a "wet brain" and made no sense, was bitter and nasty, and I had to cut off communication with her for my own peace of mind. I never regretted it. I looked her up on the SS Death Index about 9 yrs. ago and found that she had died the previous year, at age 81, of a heart attack. She was living in a NH, so I know she had stopped drinking at some point. But the damage was done. She did not know her own name, from medical records I obtained. Just wanted to mention this to let you know I understand where you're coming from.

I agree that your dad needs support and help transitioning if his wife dies. How old is she, by the way?
You might also want to check out the folder at the top of the page entitled Hepatitis Resources. There's a lot of good information in there about liver disease. Also, visit the Caregivers Sharing thread for support.

My thoughts and prayers are with you and your family.

Hugs,
Connie

So sorry to hear that your Mom is so ill. That has got to be really really hard. Can't imagine going through this at the college graduate age, but sounds like there it is..... staring you in the face.

Personally, I think it would be a good deal to move in with your Dad and you can help each other out... if you have a good relationship to begin with.

Hope you have the strength to go ahead and see your Mom and are able to set aside any squimishness about how she looks, and try to spend some time with her. You don't want to look back and have any regrets. Yes, it will be hard to see her so ill and not looking well, but that is part of being a family...bad with the good. This is just my opinion...but wish I would have had more strength and less squimishness when my grandma was so ill when I was just finishing college. Here's sending you strength.

Angie1953
Caregiver for deceased hubby, who died about 3 months ago from ESLD after 2 years of illness. RIP...my Lovey on this Memorial Day.

In addition to my mother, my cat (16) has cancer and will most likely have to be put down soon, and my other cat (17) has to be taken to a shelter or put down too for other reasons. This is just all happening at once and it's kind of overwhelming and sending me into a depression. I am aware of this and am trying to pull myself out before it gets bad.

T2L,
So sorry about your cats...that makes things extra difficult. Being a big cat lover, I know how hard that has to be for you. Again so sorry, that is the hard thing about animal friends...they move on to the other world faster than we do.

I had a troubled relationship with my father....and when he was sick, I really didn't want him to die and me stuck with all these things not resolved. So for me, I needed to make peace with things. What helped me was to realize (with the help of a counselor)that I could set the tone .... I was the one that was more mature emotionally and intellectually..that I could be the example for him...that he was too damaged to be the "good parent" ...by his upbringing.... he did the best he could with his limitations...Anyway, hope you can look at it that way. You probably have already way surpassed your Mom's abilities and emotional maturity. You can be the leader in your family..and for your parents. I know that sounds like a reversal of roles...but that is what may give you the freedom to free up some of the confusion (They should be comforting you as their child..but since they may not have the ability to do that..you become the comforter and the family leader.)

I am sure that it is confusing because you are still at the age where you want them to be there for you, but sounds like they are struggling themselves. Hope you find the strength to deal with this matter head on, so that you will have no regrets. I know this battle with liver disease is pretty ugly, and hope you can rally to do it. Wish I could send you one of my 7 kittens...they are uplifting...so joyful. Take care of yourself and hope you are able to work through all the emotions and confusion. Thinking of you.
Angie1953 ...and kittens

t-2.


Welcome to the forum. I suspect you will be here often because this is by far the best site for support and info.

I think you need to know some of what your dad is facing or will be soon. I am just going to say it.. sorry if it sounds blunt but dad needs to be prepared.

End-stage liver disease, we will all tell you, is not for the faint of heart. Before dad makes decisions he should know that he will be busy cooking and feeding mom, washing her very often because of the "accidents" she is sure to have with her diarrhea type stools, doing much laundry, especially linens, tracking her vitals and administering meds and the dreaded lactulose (helps get rid of toxins and avoid encephalopathy), dealing with the frequent ER visits for fluid buildup in the abdomen and lungs, possible serious esophageal bleeds, hepatic encephalopathy which you are probably already familiar with, Dr. Appointments, she may need a wheelchair to get around, frequent nausea/vomiting, loss of appetite, chills, etc etc. I sure hope he lines up some help and lots of it.

Sorry but it's the sad truth. I just went thru it with my brother.

I guess I just wanted you to know. I myself was unprepared.

Bless your family.

Mae

Post Edited By Moderator (hep93) : 5/28/2013 6:16:58 PM (GMT-6)

Not sure if I want to start a new thread or just continue this one. I think I'll continue this one for now. I was just informed that my mom was going to the hospital via ambulance. This morning she seemed fine, but when my dad got home she wasn't (a 4 hour span). She went to the bathroom on herself in the bed, then went a few times in rooms she thought were the bathroom (closet floor, etc.), then when my dad was home and helped her to the bathroom she didn't know how to wipe herself. We're thinking her amonia levels sky rocketed but we'll know more later. My aunt is unsure if she'll make it to the 10th when my sister and I planned to come up. I am not sure what is going on right now. I guess we'll take it minute by minute. Does anyone have any insight on the level she is at right now? Is there any coming back/getting better or will she just continue to decline? I'd like to be prepared and understand the process of what will happen....

T2
There were lots of times over the 2 years that my husband was in the shape (mentally) that you describe, and then after sleeping a lot (22 hrs sometimes) and taking the lactulose and using the bathroom (needed help finding it sometimes), then he would be his old self for awhile, mentally.

Up and down, up and down, ...that's why this is called a rollercoaster ride for the ill person and the family. It is so unpredictable. What will work to help clear her mind one day, won't the next. (That's my experience anyway....being a caretaker for 2 years.)

Sleep seemed to help a lot. If my hubby could sleep whenever he wanted to uninterrupted...and took his lactulose regularly for regular BM's he did so much better.

So sorry you are going through this...The key for use was the 3 BM's a day...if that didn't happen....his mind got cloudy fast.

Hope some of this is helpful...however, like all say on here...everyone is different. This is just my experience. Thinking of you tonight.

Angie1953

Post Edited By Moderator (hep93) : 6/1/2013 9:51:20 PM (GMT-6)

T2, when the amount of Laculose that a patient is taking is not working, the answer is always: MORE LACTULOSE. If that doesn't work, Xifaxan is usually added. If nothing works, then you've got a problem.

I also wanted to offer condolences regarding your cats. about 3 yrs. ago, I had to put down my 2 cats that I'd had since they were babies...they were both 20. The first one didn't go well--new vet--and that feline was such a sweetheart. It broke my heart. I still have visions of her struggling and howling. For the 2nd one, I used my regular vet, who comes to the house. That went very smoothly. Both cats had old-age problems and I'd given them both a great life (they were rescue cats.) So I do know how you are feeling. It's the hardest thing I ever had to do. about 2 years later, I adopted another rescue cat--this one from a terrible environment--and it's a pleasure to watch him grow into a beautiful, healthy, loving pet, after a rough beginning.

Hugs,
Connie

Thank you all for the support. Reading some of your experiences gives me hope that she can pull through this, but at the moment I'm not too sure. She now has pneumonia, was unaware of what she was doing, and oxygen levels down to 84%. She was holding at 90% last night but they plan to send her home today (if things don't get worse) with oxygen. Even with the pneumonia and fever they are doing another paracentesis this morning. My sister is flying in tonight or tomorrow morning instead of next week due to these new events. Multiple people have said they're not sure she'll make it to the family meeting on the 12th.

Yes hep93, they are for the most part. Today she asked my dad to complete the paperwork. This is huge for my mom and it seems as if she realizes it's the end.

I finally talked to her today and she's very breathy and weak. My aunt (a nurse) was highly suggesting they do not put her on a ventilator because once she's on and sedated, that's basically it. My sister is flying in and will discuss with the doctors how aggressively to treat the pneumonia. She said....it's a um better death with pneumonia than continue the path of liver failure. My aunt also said the pneumonia is a sign her respiratory system is failing and one organ will fail after another.

T2. Hope your Mom is improving. When you have time please file us an update.

Hugs,

Post Edited By Moderator (hep93) : 6/7/2013 12:13:16 PM (GMT-6)