Trouble dealing with sister's encephalopathy

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too much to handle
New Member

Date Joined Apr 2008
Total Posts : 2
   Posted 4/26/2008 11:25 PM (GMT -7)   
Hi everyone. I'm new to this forum. I've read many of the recent post's but haven't seen anything on coping with cognitive/emotional effects of encephalopathy in a family member.
My sister has hepatitis c/cirrhosis/end stage liver failure and has just been place on waiting list for transplant.  She is an alcoholic, but has been sober for over a year. (3yrs since rehab...had relapse 1yr ago (lasted a couple days).  The liver failure is fairly recent...Dec, that's when I found out about the hepatitis (she's known for abt 3 yrs).   Dec was the first time she had symptoms of acute liver failure.  I've tried to do as much as I can for her, but I really have a hard time dealing with her when her ammonia levels are too high!  I don't need a lab test to know when it's high....I can tell within a few minutes of talking to her.  I get so frustrated.  I know that when she hasn't had several loose stools per day her ammonia level goes up....but then she gets argumentative about taking additional lactulose or a laxative (usu mag citrate).  She'll call me and be emotional and irrational, but when I say "I can tell your ammonia level is up"...she'll say she can tell too...but then she won't do what she needs to do to help herself.  I get really frustrated and I think part of it is that talking to her when amm levels are high reminds me of when she was drinking.  It's the same "disjointed" thought process.  I keep reminding myself that it isn't alcohol this time, but it's still hard.
     I want to help her but many times I feel as if I can't handle anymore in my life.  So many times in my life tragedy has put me in the position to assume more and more responsibiliies that really shouldn't be mine.  I have two young children and my first responsibility is to them, but I can't abandon my sister.  She isn't married, she lives with her "boyfriend" who isn't much help. (She's 52, he's 68).  We have another sister in an alzhiemer's facility, and I'm her Power of attorney so I have to take care of her bills,etc. 
I think that part of me puts blame on my sister.  If she wasn't an alcoholic for so many years, the hepatitis may not have put her into end stage liver failure (at least for several more years). 
    She keeps trying to do to much(tried shoveling snow) when she has a good day, then that puts her in a decline for several days after.  But she won't listen!!! 
    How do you deal with the frustration??  How do you deal with the irrational thoughts from the encephalopathy??  How do you maintain you're sanity in order to help someone else?
   I'm sorry this is so long.  I'm just emotionally drained and I just can't afford to be.

Regular Member

Date Joined Mar 2008
Total Posts : 202
   Posted 4/27/2008 12:01 AM (GMT -7)   
Hi Annmae,
Welcome to the forum. I'm sorry that you need to be the support person for your sister in what is a difficult time at best.
While I can't be be very helpful to you since I am on the other side of the situation, with Hep C and a failing liver, there are many in the forum that will identify with your situation and offer their insights. I dread the time when I become too difficult and too heavy a burden on my family.
I hope that you will find a balance in your support of your sister that you can comfortably live with. All I can offer is to make sure that you pay attention to your and your family's needs. You will need to stay strong and focussed to effectively deal with the potential problems with a calm spirit. Sharing the lows and the successes with the forum members is a good start.
Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.

Regular Member

Date Joined Nov 2007
Total Posts : 460
   Posted 4/27/2008 1:01 AM (GMT -7)   
So sorry your sister is so stubborn. Like John I am on the other side. End Stage cryptogenic liver disease. I do realize when I am high on ammonia. So I have to regulate the lactulose myself. When I do get stubborn like your sister seems to be I have asked my caregiver husband to let me know. He does. He will say go take more lactulose your acting up again. And I realize whats going on. I am a stubborn person but I do in this case listen and do as I'm told. I have also told him I do not want to be a burden to him if things should get worse. At this point I have been (THANK GOD) fortunate enough to only have encephalopathy. Why don't you talk her into reading some of these posts, maybe she will come to terms with her condition.
Best Wishes Take Care Of Yourself First june

Veteran Member

Date Joined Oct 2007
Total Posts : 502
   Posted 4/27/2008 6:10 AM (GMT -7)   
Hi Annmae and welcome to HealingWell. I am so sorry that your sister is so ill. It is really hard sometimes being a caregiver to our loved ones. It sounds like you have a tremendous amount of responsibilities going on with your family. Liver disease is not an easy diagnosis to deal with and there is so much that caregivers and patients need to know about it that I think it may be overwheming at times. When you are feeling like things are just too much to deal with is when you have to stop and take time out for you. If you get sick or too "Done in" by all this then you are no longer able to cope as you know. Then it just snowballs and everything gets out of control for everyone. It is really important that you make time to care about your needs so you don't burn out. Dealing with encephalopathy is no easy task so I would suggest that you learn as much as possible about Liver disease and the different stages. Education is the key to coping. You can share everything with your sister once you have a grasp on it yourself. We are here for you so please post as ofetn as you need to or want to.

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."


Regular Member

Date Joined Mar 2008
Total Posts : 47
   Posted 4/27/2008 10:01 PM (GMT -7)   
Hi Annmae
There are alot of shoulders here to lean on when things get tough and some of the most caring people in the world type their advice and words of wisdom on this forum. You could not have come to a better place for an ear to bend :)
Just a thought, when my husband was having alot of difficulty controling the ammonia's and the itching, the lactulose just didnt seem to be doing as well as it was, the dr's put him on Neomycin antibiotic and cholestyramine. between the 2 of those it has really done wonders to keep the ammonias in check ( including the lactulose of c ourse) You might have your sister mention that to the dr's :)
Good luck and if you ever need an ear or need to rant, this is the place to be.
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