I have questions about Encephalopathy

  My husband has had problems with Encephalopathy for awhile, he is on the transplant list and actually doing quite well other than the encephalopathy and a mouth auto immune problem.  I've been having trouble with knowing if his behavior is encephalopathy at times.  He will say things that don't make a lot of sense and will act like we just met and we've been married for 30 years and then the next minute he seems just fine.  He acts distant sometimes.  He acts like he is in his own little world. He's 53.  I wasn't sure if this was encephalopathy or he is going through a mid life crisis.  His attitude has changed almost like he really doesn't care about much.  He sleeps a lot and he is on kristalose and Xifaxan.  If he does anything physical one day he will be really tired or sleeping for the next 4 days.  His thinking is slow and if you say to many things at once he is lost and doesn't get any of the conversation.  My daughter took him shopping and when she got back she said to me he couldn't stay focused on what he was doing.  I've seen the same behavior and was wanting to know if this is what others have experienced as well?

Thanks,

DDMom

DD, My wife (59 yrs old) has had problems in the past with encephalopathy, in that she has lost track in mid-sentence of what she is saying, walking into a room and then forgetting why she went there, etc. She also tires very easily, and like your husband, if she does anything physical one day, it may take 3-4 days for her to recover, and she may sleep day and night for a day or two.

Charlie

DDMom .. Mike had all of those symptoms... he was 53 also... he acted goofy at times... my thoughts and prayers are with you.. Sandi

I spent 5 years feeling "slow," due to a failing liver. Even with lactulose (30 cc., twice a day) and xifaxin 200 mg. twice a day. I hated that. Reading, writing, remembering and speaking, required an incredible amount of concentration. Plus, I was tired most of the time, but I made myself get up and work (I'm a tile setter). Ten months ago, I had a transplant and all of those problems are over. To me, those years were painful, mostly because I knew I wasn't stupid, but couldn't help it. For me, I was lucid almost all of the time, just slow. Good luck! **David**

Before my wife had to retire for medical reasons, she used a computer 8 hrs a day doing her job, as well as keeping up with her personal email. This past year, her friends and family have urged her to get on the internet so they can exchange emails, instant messages, etc. I purchased her a cheap "Netbook" so that she can connect from any room in the house via our wireless router, and set it up for a very simple boot. I even typed her user name and password for a web-based email account and taped it on the computer. She tried time and time again while I was at work to use it, and finally gave up, as she just couldn't understand how to log into her email account. We both know that it is her disease that has caused her memory loss and confusion. It just breaks my heart to see her cry because she can't function like she used to do.

Good to see you back here, Scott.  I thought maybe we had lost you to "that other sitse." 

Hugs,

Connie

Thank goodness today is another day and so far a good one. Yesterday was rough and I wasn't dealing well at all. I read these posts to my husband and it made him feel a lot better knowing that it's the disease and not just him. Charlie, I know how you feel it's not easy being the spouse/caregiver or the person who has the disease. I know the hard part for me is what my husband says that he doesn't either remember or he doesn't seem to care because he is agited. I have to try and remember not to take it personnally but it difficult at times because one minute he seems his normal self and the next he has gone off the deep end. This one time he said that he has no feelings for me for 4 days and it came for out of no where and so I said do you want to call it quits after 30 years and he said No. Then I asked him do you want to move out and he said NO. So I asked him do you want me to move out and he said NO and then he turns around and asked me why would either of us want to move out. Now I can understand one bad day but 4 in a row. I should of took him to the hospital or had him increase his medication. Now sometimes some of the stuff he says can be quite funny but not while your in the middle of it. My husband worked on computer programs for K-12th grade and commuted to work in heavy traffic and it was getting really difficult for him to concentrate on anything and his work told him it's time to take a leave of absence and his hep doc said he would probably get a transplant within a year or two. He has been home 6 years now and his health is to good to have a transplant which is good but he still has all the side effects. We are grateful that he is doing good but I think the time he is away from work is playing on his mind. When he left work he was in real bad shape and I think his health has improve because of medication and sleep. I do agree that he should do a hobby of some kind to keep busy and keep his mind on something positive but so far all I hear is I'm to tired. Maybe if we get the encephalopathy better controlled he might see things differently. This is something we definately will work on. I also have to keep a closer eye and step in more regarding his medication when he seems a little off. I really appreciate all your post as it helps so much.

Thanks,
DDMom

DDmom......I am going through the same thing that you are. My wife was just too sick to get up each morning, go to work and make an 8 hr day. She worked as a court clerk in a very fast paced office, and simply could no longer keep up with her work. Since she retired and is getting plenty of rest, physically she is much healthier. Her MELD score has gone from a 13 to a 9, and is now a 10. I don't think it is entirely encephalopathy causing her problems, as I check her hand-flap at least once a week and there is no movement. She hated lactulose, however since we changed over to Kristolose powder, she drinks if without complaint and is getting good results. I believe that fatigue and depression are a big factor in her lack of interest in hobbies, etc. I have begged to do volunteer work on the days she feels good, all to no avail. She has no  hobbies, and on the days I go to the office I come home and she hasn't even turned on the TV during the day. I think she just sits and worries about the future.

Charlie

Connie, I am so happy you are on this forum. You have helped me so much and I really do appreciate your comments and support. Charlie, I got that right away when I first started reading your post that your wife and my husband have a lot of the same things going on and it really has help me reading your posts. I have to agree that I think depression and feeling flat tired has been my husbands biggest problem. He decided once that he didn't need the antidepressant he was taking and he went off of them, about 6 months later he was a total basket case. He wasn't even taking a very big dose of antidepressant but it made a big difference. He started taking the antidepressants when he was on the combo treatment. So for me it is very confusing sometimes whether it's encephalopathy, depression, fatigue or him just being him. I do know before all this he was always in a good mood and always had a kick back easy going personality. I use to try and push him to be more active and not to sleep so much and now after reading the posts I have backed off on that and say sleep when you need to and do what you can and it seems to be making things go a lot better. As for extended family understanding that has been another sore spot for me. They flat do not understand nor do they want to. He looks ok so therefore he is not sick is there attitude. My attitude is look a little closer and listen a lot more and you will see he is not fine. I don't expect any of them to do anything for us but at least be understanding when I say he is sleeping and not say"he is sleeping again, is that all he does?" Then the next comment is when he gets up can he help me or us with this or that. I want to scream, he is on disability for a reason and that's not to do your work. He doesn't do the stuff around here we need done. Then when the relatives come around there mad because he doesn't want to visit. I've tried to explain it but it does no good. Then there's the holidays, relatives want to come to our house and I cook, my husband sleeps or doesn't feel like company and we also have an adult blind daughter who is autistic do you think they would offer to help cook or clean up, nope. Well this year I decided I was done being the doormat and I"m not going to feel guilty in the least for saying there is no holiday here this year or in the near future except my husband and kids. I'm sorry it has to be like this but my husband has been on 3 rounds of treatment and not one offering of help or understanding from relatives. I know it's our fault for not putting a halt to it sooner but before you know it your trying to do it all, not anymore I need to put us first. Now our friends and my side of the family have been great but they don't live close by. I've noticed my husband has trouble concentrating on television as far as movies go. He will watch sports but he is doing an electronic bingo game at the same time. If you ask him what is going on with either one he usually doesn't remember. My husband didn't like lactulose either and is on Kristalose as well and he really doesn't want it but knows he has to or his brain is all fogged up.

Thanks everyone,
DDMom

Rick, I appreciate your input.  I may try the B complex.  I've been more fatigued than usual lately, for no good reason other than waking up every 2=3 hours during the night.

Hugs,

Connie

Rick...I will also get some  vitamin B and see if it helps my wife, thanks for the suggestion.

DDmom....... I also have a problem with my in-laws. My wife's family has good intentions, but tend to be a little too helpful. She has two older sisters (who both live a few hrs from us) that believe spending an entire weekend with my wife helps her. They like to make weekend visits, and most always come on a friday evening when she has not had a good week. They just don't understand how bad she feels, and encourage her to go with them visiting other relatives, shopping, etc over the weekend.  She will force herself go regardless of how she feels, however after they return home on  Sunday, I have to deal with her illness for the next week, while trying to work full-time. They are a very close-knit family and I just can't tactfully tell them not to visit without causing problems. She also has a daughter who lives out of town that visits us with her family (one child and usually a dog) about once a month. Both sisters and daughter cook, clean, and are really wonderful guests, but none of them understand what a drain it puts on my wife when they spend a weekend with her. She loves for them to visit, however she also knows what a toll it takes on her energy level for the up-comming week. I know there is absolutely nothing I can say or do without hurting someone's feelings, so I just have to keep my mouth shut and deal with it the best I can. I am so glad that I have found this forum, for without it, I have no one to vent to.

I hope everyone has a great week....

Charlie

DDmom.....I fully understand how tough it is on both patient and care-giver.  People who don't see them every day just don't understand that a person can look healthy, but really feel like sh**.  I know there are times (many) where she puts on a false front for her family simply because she doesn't want to tell them "no, I'm sick" Like you said the best approach is to  just keep my mouth shut, knowing they have the best intentions, and then do my best to take care of her the next week after company leaves. I'm not going to be the one to tell her family that they can't visit her, or they should cut down on the frequency of their visits. She has two adult daughters and one son from a previous marriage and they have a right to see their mom. You never know when her health may take a nose-dive, and it might be their last.

Charlie