Liver disease and personality changes

Hi Linda,
I am sorry that your BIL has hep-C, and that your family is dealing with his illness, current personality change, in addition to the passing of your MIL. I do not have any experience with hep C or end stage liver disease, but there are many members here that do. I am sorry that you have had to find us, but you will find that Healing Well is a group of very caring individuals, patients and caregivers, that ask many questions and share information.
I have read that personality changes and increased sleeping and hallucinating is due to high ammonia levels in the blood. There is a medication, lactulose, that will help to eliminate the ammonia via stools. Large belly can be due to ascites. I am sure that another member will be along soon to answer some of your questions.

Emma

Thank you, ladies, for the responses.  No, he is neither a drug user or a drinker.  Your response gives me hope that perhaps there are reasons for his removal that might reverse, perhaps a temporary medical event.  We "heard" that his "numbers" had reached a point where a transplant was contraindicated.  Because of the "rift" in the family, we don't have first hand information.  My husband has tried several times to talk to him with no success.  We don't know if it is best for his physical well-being to leave him alone or better for his emotional well-being to continue to try to "force" a dialogue.  I think I mentioned that he and my husband were very, very close and in addition to the worry we are bewildered in regards to the changes in his personality - a change from an incredibly pleasant, loving man to this cold, angry person.  As I said, we're looking for some kind of guidance is how to handle this instead of just throwing away a lifetime of love.  I can't stress enough the complete change in his personality, a near total opposite of what he has always been before this.  He is under the care of mutiple doctors (Emory University, no less) and it taking multiple medications.  Just hearing someone say that he could live quite a big longer is a blessing.  I know that's no guarantee, but any positive thoughts are so welcome.

Dear Linda,
Well... I could write a book about how my kind, loving, generous husband changed into an angry cranky nasty tempered guy completely out of character once it became clear to him that this disease (ESLD) was going to kill him. Whether this was due to the depression, Heptic Encephalopathy (HE) or the oxycodone for pain, was hard to tell.

But I was totally stunned to be taking care of this nasty stranger, after 14 years with a man that was the kindest, gentlest nicest, most dependable person I've known. After about 6 months of that.(and many posts on this forum about how crazy I was going and what could I do)...the Dr. changed his pain medications from oxycodone to morphine and gave him anti-depressants. Now, I don't know if that is what made the personality change back....but it was as if my husband had returned. He still was sick, he still took celexa for depression (which was prescribed after he fell into a funk with the END STAGE diagnosis), he still has memory problems and confusion from the HE, but his old personality is back. Thank goodness.

While taking oxycodone, he suggested to me that we sell everything, house horses cars and travel in a motor home across country because he wanted to "do it before he dies." Now this is a man who spent his whole life traveling across the US and other countries in a motor home, so it wasn't like "HERE"S THE ONE THING I ALWAYS WANTED TO DO AND DIDN"T GET DONE AND WANT TO DO IT BEFORE IT DIE." What he suggested just didn't make sense, he was too sick to travel anyway. His Dr explained that many people with ESLD feel the need to "run away" or "distance themselves" from friends, family, spouse, etc and what they are really trying to run from is the fatal disease. And they end up angry at friends and family, when they are actually angry that they are dying. This made sense to my hubby and he revised what he wanted.

Don't know if this is what is going on with your BIL. But, when I read your post about the personality change, I said, OH YEAH..I know that story.

For us the solution was a combination of Dr. explaining to hubby feelings he was having and a change from the oxycodone painkiller to morphine. Don't know what will work for you, but for me I just had to keep showing up day after day and telling myself, "something is wrong with him, this isn't the man I married, he is sick and I will be there, even if he is cranky and nasty as it must be the illness." BUT...it was a heartbreaker every day to feel like he hated me and there didn't seem to be a reason. :( Hope some of this helps. It was the most painful 6 months of my life.
Angie1953

Make up your mind, are you a pig or a horse...

That one went right by me, I'm so tired.

Wow!  It feels good just to have people respond and tell me their stories.  As much and I hate that others have had to deal with the "personality change" issue with this disease, it does make me feel better to know that it is common and there is hope.  As for a dispute, we don't really have one.  My husband (and his sister) haven't refused to sell the property - they just want it's value.  And a point I didn't mention is that they are both insistent that when the property sells all the money will go into a trust to provide for his needs - cost of the transplant (pray God we get one), medications, living expenses, house payments, whatever it takes.  We were a very, very close family before we were hit with the double whammy (losing my mother-in-law and then news of my BIL's serious health issues).  My husband and SIL just don't want to throw the money away on frivolities when we know we'll need it to keep him alive.  As my husband said - "That's what Mother would want us to do."  Thanks for the advice to just keep on trying to make contact.  We didn't know if that was what we should do but it's what we wanted to do.  One other note:  The wife of the BIL has always been jealous (for lack of a better word) of the bond between my husband and his brother so she's throwing up road blocks there, too.  Talking to all of you does give us hope and that is a blessing.  Being without hope is the worst feeling in the world.  I wish I knew about his MELD scores but we have no idea.  It's been a little over three months since we've tried any contact.  It's time to try again.  Thank you, everyone, for simply responding.  This disease doesn't just rob you of your health, the effects of the disease robs you of love.  We'll keep on trying.

Linda,

  I understand how difficult it is to see the personality change and you your husband and his sister are trying everything to help (use $$ from house for transplant, etc).  I would have been heartbroken had my husband passed away while he was so hateful (totally out of character).  It would have been really hard to live with thinking I could have done something to change it.

  So I really understand that.  This summer when I would complain to my Mom (86 years old) about how hateful he was being, she would say "HE"S SICK" "YOU DON"T GET IT, HE"S SICK"  By that what she meant is that I can't take his behavior now and look at it like this is who he is..."HE IS SICK"  So I'm paying that bit of advise forward.  "HE IS SICK", and it may be someone else that is feeding him info about what "baddies" you are, and he can't sift the truth from stories now with the HE and the meds. 

{I think it would be easy for me to turn my husband against his family if I were so inclined ...WHICH I AM NOT...but he is so vulnerable to whoever is taking care of him and what they tell him, and suffers from cognitive problems.}....just say'en.

  Hope that you all just keep trying to keep in touch with him.  JUST A THOUGHT.  Doesn't sound like you all have the best relationship to BIL's wife, BUT...if she is caring for him at home, she is overwhelmed and is probably on the receiving end of his personality change herself.  I thought I was a very strong independent professional woman, but after months of taking care of Hubby with ESLD and nasty attiutude, doing all work around house, caring for pets, and trying to get all bills paid, while trying to get hubby qualified for funding for transplant, and Dr. appts, etc,  I was a basket case. 

  Hubby's family, who I really like, but live along ways away, called and wanted to know if they could send something to help.  I asked fthem to send an electric razor for him (he took them all apart for some reason).  This was in August, and on his Birthday Oct 19 they send a razor.  I know this was a little thing, But I was so hurt that it took them that long to do it, when I felt I was drowning and only asked for one little tiny thing.  Anyone, just the perspective of a worn out exhausted caregiver.  May not relate to her or you all, but it is hard to understand how truely worn out and alone caregive can feel.

  Best to you and keep posting.  I am lighting a candle tonight, but to help keep warm,  It's supposed to be -10 degrees and 40 mph winds.  Cold enought to freeze pork solid !!  Porksycle !!  

Angie1953

Here in NE every day is hog season. We have bacon every morning, that's alot of oinkers :)
Angie1953

Ziffle, have you seen the ad with the pig on the zip line....saying wheeeeeeeee, wheeeeeeeeee, wheeeeeeeeeee?

Hugs,
Connie

"You guys will eat anything." That's a good one Mr. Swine Flew.

I "lost" the site but found it today. Thought I would update those of you who were so nice to offer advice and hope. We continued to try to communicate with my BIL. Now he nor his wife will answer the phone calls at all. The last time anyone was able to have a conversation with him, we were told that if we wanted to say anything to him, write him a letter. My husband tried the "showing up at the door" thing and was told by the SIL if he came on the property again he could be arrested for trespassing. We had the attorney from my MIL's estate send a letter telling him we were willing to sell everything for his benefit. The response was "sign everything over to me and leave me alone". We learned last week they may be having financial difficulties. Via the attorney, again, we offered to send money and asked what we could do. The response - give me everything and leave me alone. We have given up. He has had to have the fluids removed from his abdomen a few times lately (cirrhotic ascites is what I believe it is called). One of his children spoke to one of our children but was told to not tell anyone because their mother told them (and our BIL) that if they communicate with any of us at all she will make their life "hell". Her words, not mine. She has always been a problem in the family to the point that my MIL all asked us to get along with her to make life easier on the BIL. Out of respect and love for my MIL we all complied and continued to do so after her death. I don't want to blame it all on her because from what I am reading, these symptoms are a result of the ESLD but to be honest - I'd like to slap her. She is denying her husband the love and support of his family for reasons we simply do not understand. As I said, just thought I'd update from last March. We've lost hope and do not feel there is anything else we can do.

Linda , Got a feeling if ya leave him alone and just ignore them for awhile this disease will get the better of him and that creates a chain reaction . When HE gets him real good and his health becomes too much for her to handle , she will do one of two things . Leave him or she'll be so sweet sugar wouldn't melt in her mouth when she speaks to you looking for help . Sorry things are still so crappy but hopefully things will come round soon enough .



A. Ziffle