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.