Liver disease and personality changes

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Linda80398
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Date Joined Jan 2012
Total Posts : 4
   Posted 1/10/2012 1:52 PM (GMT -7)   
My brother-in-law has liver disease as a result of Hep-C.  He acquired Hep-C via a blood transfusion when he was young.  He and my husband were very close.  In January 2009, their mother passed away and within six months of her death, my brother-in-law had a complete personality change.  In 2008 he was on the list for a transplant but rumors are he is no longer an acceptable candidate and his name has been removed for a donor liver.  He will not speak to my husband and will not give a reason for his anger and refusal to talk to him.  One family member with whom he does communicate says he is sullen and angry.  We don't understand.  I read somewhere that personality changes were symptoms of late stage liver disease.  We have received second and third hand reports that he sometimes hallucinates, sleeps all day but up at night.  His abdomen is distended (ascites?), he is now diabetic and has forbidden any member of his family to speak to any of us.  The only disagreement we have had is that he wants to sell my mother-in-law's property for about half of it's value and my husband and their sister have refused.  He said he wants to spend the money and enjoy himself before he dies.  This is definitely not how we expected him to act upon the death of his mother and is totally out of character for him to think this way.  Since he won't communicate with us, we have no idea how far the disease has progressed.  My husband is desperate to try to re-connect with his brother, especially since he made the statement about dying.  We're at a loss.  Are severe, profound personality changes indeed an indication of late stage liver disease?  We're clutching at straws.  We know that.  But we can't just sit back and watch him die (if that is what is happening) without trying to heal our family.  Does anyone have any insights of suggestions? 

healthynow
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Date Joined Oct 2010
Total Posts : 1773
   Posted 1/10/2012 2:54 PM (GMT -7)   
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

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/10/2012 3:48 PM (GMT -7)   
Linda, welcome to the forum! I agree with Emma/HealthyNow that your BIL is probably experiencing hepatic encephalopathy which does cause behavioral changes. He should be on Lactulose, if this is the case. I don't suppose you know if he is under the care of a hepatologist or any doctor? He should also be taking a diuretic for the ascites. I wonder if the reason he was removed from the transplant waiting list is because he is using either drugs or alcohol? Those would also further damage his liver and cause personality changes. He is probably also reacting to the removal from the list and difficulty accepting this. However, he could live quite a bit longer if he gets proper medical care.

It's very difficult to assess a patient when you have no contact or much information. I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources. There are descriptions of liver disease and its stages and a lot of good info that should be helpful to you.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

Linda80398
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Date Joined Jan 2012
Total Posts : 4
   Posted 1/10/2012 5:12 PM (GMT -7)   
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.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/10/2012 5:22 PM (GMT -7)   
Linda, you can't really help someone who doesn't want to be helped. Your husband should try from time to time to make contact...maybe even showing up at his doorstep. But don't force it. I have no explanation for the change in personality except for hepatic encephalopathy, if he is not a druggie or drinker. He could be suffering from depression, which also sometimes changes people to angry individuals who just want to be left alone.

Emory is top-notch. My original surgeon at Mayo left to go to Emory...was there for several years and now back at Mayo. Hopefully, your BIL is taking his medicines correctly. He probably has been placed on the "inactive" list (for whatever reason), not taken off. It could be that his numbers improved. I was deactivated once in the same month as transplant...when I had a respiratory virus. Once it cleared up, they reactivated me. Do you happen to know his MELD score by any chance?

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

Post Edited (hep93) : 1/11/2012 7:39:21 AM (GMT-7)


Angie1953
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Date Joined Jul 2011
Total Posts : 937
   Posted 1/10/2012 11:58 PM (GMT -7)   
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

A.Ziffle
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Date Joined May 2011
Total Posts : 2072
   Posted 1/11/2012 6:55 AM (GMT -7)   
The source of this issue seems to be related to personal grievance firstly and then possibly Hepatitis . Go to the source and work from there , Everything written so far seems to tie into the dispute you guys are having . As you see it's difficult for you and impossible for us to know what is really going on without first hand info from a medical perspective . I think maybe you are trying to intermingle the issues and perhaps rightfully so , But you aren't gonna make head wave with Hep. C problem without taking on the dispute first . Can't say what that will take and it's not my call .

As Connie mentioned earlier , Things can level out with his treatment . As for myself I have Liver disease and very little liver function , My MELD scores have been all over the place in the last few years but now are almost normal . I am aware that this may be a temporary lull for me , Personally it's frustrating if I dwell on it . It's down right depressing sometimes and to top it off I can be a horses rear without the stress of the disease . I try to isolate those thoughts and enjoy my life and replace the stress with laughter , Maybe he is having trouble coping with the rigors of facing endless health care . Who knows ? Key issue is overcoming what is making him miserable if that's possible . Just my 2 cents .


A. Ziffle
I learned long ago , never wrestle with a pig . You get dirty , and besides , the pig likes it .

G.B Shaw

**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 1/11/2012 7:36 AM (GMT -7)   
Make up your mind, are you a pig or a horse...
Have a nice day!

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 1/11/2012 9:59 AM (GMT -7)   
Ya know , After I wrote that sentence about the hoses arse I wondered how long it would be before you or Connie said something . smilewinkgrin


A. Ziffle
I learned long ago , never wrestle with a pig . You get dirty , and besides , the pig likes it .

G.B Shaw

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/11/2012 10:49 AM (GMT -7)   
That one went right by me, I'm so tired.
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 1/11/2012 11:11 AM (GMT -7)   
Sounds like Connie needs some irritating misspelled words posted here to liven her up a bit , I'm a little busy at the moment but give me some time and I'll fix you right up .


A. Ziffle
I learned long ago , never wrestle with a pig . You get dirty , and besides , the pig likes it .

G.B Shaw

Linda80398
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 1/11/2012 12:02 PM (GMT -7)   
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.

healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1773
   Posted 1/11/2012 12:47 PM (GMT -7)   
Linda,
"rob you of love" --- never thought of that. Good point.
It sounds like you have a wonderful, loving family. It would seem that only good can come out of that. Your BIL is fortunate that his siblings are willing and ready to help financial with their mom's house. I agree with Connie, keep on reaching out, and hopefully the walls will break down.
Emma

Angie1953
Veteran Member


Date Joined Jul 2011
Total Posts : 937
   Posted 1/11/2012 8:03 PM (GMT -7)   
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 !!   shocked
Angie1953

A.Ziffle
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Date Joined May 2011
Total Posts : 2072
   Posted 1/11/2012 8:59 PM (GMT -7)   
Angie was that a shot at yours truly ? Is it still hog season ?

A. Ziffle
I learned long ago , never wrestle with a pig . You get dirty , and besides , the pig likes it .

G.B Shaw

Angie1953
Veteran Member


Date Joined Jul 2011
Total Posts : 937
   Posted 1/12/2012 8:41 AM (GMT -7)   
Here in NE every day is hog season. We have bacon every morning, that's alot of oinkers :)
Angie1953

A.Ziffle
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Date Joined May 2011
Total Posts : 2072
   Posted 1/12/2012 4:29 PM (GMT -7)   
WEEEEEEEEEEE ........ WEEEEEEEEEE , Cursed humans , You guys will eat anything .


A. Ziffle
I learned long ago , never wrestle with a pig . You get dirty , and besides , the pig likes it .

G.B Shaw

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/12/2012 4:59 PM (GMT -7)   
Ziffle, have you seen the ad with the pig on the zip line....saying wheeeeeeeee, wheeeeeeeeee, wheeeeeeeeeee? smilewinkgrin

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 1/12/2012 5:33 PM (GMT -7)   
Yes Connie that's my brother Wilbur Ziffle , I don't claim him ever since he moved to Hollywood and started dating this chick from San Diego . Although he and I do share the same handsome looks our taste in women and such differ to say the least . Pure adrenalin . Ha , He stole that line from me .



A. Ziffle
I learned long ago , never wrestle with a pig . You get dirty , and besides , the pig likes it .

G.B Shaw

**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 1/12/2012 5:47 PM (GMT -7)   
"You guys will eat anything." That's a good one Mr. Swine Flew.
Have a nice day!

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 1/12/2012 7:07 PM (GMT -7)   
Flu , Are you trying to "steel" my job here ?


A. Ziffle
I learned long ago , never wrestle with a pig . You get dirty , and besides , the pig likes it .

G.B Shaw

Linda80398
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 3/18/2012 12:01 PM (GMT -7)   
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.

MamaLama
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Date Joined Oct 2010
Total Posts : 4806
   Posted 3/18/2012 12:16 PM (GMT -7)   
Linda, thanks for getting back in touch.

What a difficult situation. Your BIL has a terminal illness, and it would be so wonderful if he and his siblings could have some time together to let the past go and support one another.

But families are complex.

At this point, you can't do anything more is how I see it.

For a long while, my partner, didn't want anyone to KNOW he was sick. He was in denial about how sick he was and became down right ugly over time...the symptoms and HE were AWFUL. He was so negative and mean.

I wasn't to tell his daughter what his numbers were. I wasn't to tel lher he was still drinking. He wrote a paper about not notifying anyone in the family if he died. Etc. I didn't pay attention, I kept up with the family and he was MAD at me...really mad. So what was new about that?

He quit drinking during his down hill slide and eventually DId qualify for a transplant and since May 2011 he has been doing pretty well. He talks more openly about his transplant after than before and we got a licenseplate holder that encourages organ donation. I've see him show perfect strangers his scar. Maybe now that he is not dying he doesn't have to pretend to others that he's really fine.

Of course, he still has Hep C, so who knows how long he will be well this time!

I think you need to forgive yourself for whatever it is your BIL has going on in his mind. Send a Holiday Card and a Birthday Card and focus on your nuclear family.

Best,
Carol
Mike received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 3/18/2012 6:36 PM (GMT -7)   
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
I learned long ago , never wrestle with a pig . You get dirty , and besides , the pig likes it .

G.B Shaw

stillhere
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Date Joined Mar 2016
Total Posts : 1
   Posted 3/28/2016 9:03 PM (GMT -7)   
confused
My 54 yr old mother was diagnosed with stage 4 colon cancer that metastasized and is now also stage 4 liver cancer not even a month ago. Over the past few years her mental health has declined and memory has gone out the window. The memory gets explained away as 'chemo brain ' which I don't buy since it's been declining though we never knew how sick she was these last few years. I've been thinking that her liver is poisoning her mind and have discovered that that may be the case. But, until I saw this thread I didn't even realize anger could also be a part of this as my mother has become more difficult than ever. Her own mother who came to stay and help her out is at her wits end after 3 weeks. How did BIL fare? Is this reversible? Will my poor mother die with everyone hating her for how vile she has become? It's getting bad rapidly and may be to a point the Littles will be kept away
so they don't become affected by her viciousness. Its hard when you don't know where to turn and I can't make it to appointments to talk with the doctors.
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