I have questions about Encephalopathy

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DDMom
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Date Joined Apr 2010
Total Posts : 195
   Posted 6/2/2010 8:52 AM (GMT -7)   
 
  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

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/2/2010 9:43 AM (GMT -7)   
DD, it does sound like episodes of encephalopathy that others have described. Some patients also become agitated and aggressive.

Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Charlie92
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Date Joined Jul 2009
Total Posts : 192
   Posted 6/2/2010 12:22 PM (GMT -7)   

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
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Date Joined Apr 2010
Total Posts : 195
   Posted 6/2/2010 1:59 PM (GMT -7)   
Thank you Connie and Charlie for your post, they have been very helpful. It's nice to have other that understand and at the same time educate. It helps me to know what he is doing is normal behavior for the medical issue he is dealing with. Today was just a rough day but is getting better already. Charlie I have noticed that your wife and my husband have a lot of simularities with where they are at with their medical conditions. I saw your post about your wife going into the hospital and I'm glad she is doing better. Thanks again for posting it really does help.

DDMom

arneeb
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Date Joined Nov 2009
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   Posted 6/2/2010 2:57 PM (GMT -7)   
DDMom .. Mike had all of those symptoms... he was 53 also... he acted goofy at times... my thoughts and prayers are with you.. Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom


Pink Grandma
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Date Joined Nov 2006
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   Posted 6/2/2010 6:00 PM (GMT -7)   
DDmom, What he's doing and saying are classic encephalopathy signs. Also as Connie said, the agitation and aggressive behavior are too. Now when I look back I can laugh and smile about the goofy things my husband said and did.....but still don't like remembering the mean things he said and did. Oh I forgave him for them......even at the time I knew it was the disease not him. I'd go out for a walk to calm down when things got ugly. Only a couple of times did I react in a manner that I am not proud of. But I accept that I am not perfect and say and do things occasionally that I regret.

Charlie, heck your wife sounds like me. When I get over-tired I do those same kind of thingssmilewinkgrin

Take care.....thoughts and prayers........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


**David**
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   Posted 6/2/2010 6:01 PM (GMT -7)   
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**

shadowsghost
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Date Joined Apr 2008
Total Posts : 489
   Posted 6/2/2010 10:01 PM (GMT -7)   
DDmom, yeah ammonia levels can be just high enough for just a little confused, attention issues, having difficulty with eye hand coordination etc....Doug could figure out how to call cable cause it wasnt working right, yet couldnt understand he was using the wrong remote or the wrong button on the remote. Good thing they called to reconfirm appointments as it could cost a fortune. I would just increase his lactulose some until he got clearer then try regular dose again. Again the balance! You can adjust the lactulose accordingly.
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 6/3/2010 5:36 AM (GMT -7)   
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.

Michigan
New Member


Date Joined May 2010
Total Posts : 6
   Posted 6/3/2010 10:08 AM (GMT -7)   
This site is Great... You ask and they give the correct answers. Great people here. I too had encephalopathy really bad as i didnt take my Lactolose as directed.. I simply hated it! and payed for it. After Transplant i owed alot of "im sorries". Please know that it is the disease talking. I have no idea why sometimes i acted rudely; but i know that i did. Scott

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/3/2010 11:06 AM (GMT -7)   

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

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/3/2010 11:54 AM (GMT -7)   

I sometimes used the hand flapping as a gauge for increasing Dougs lactulose. He got so he would do it himself and if they were flapping bad he would even give himself a little extra. I know the Dr's only use it as a rough guess but they told me different levels effect people differently and at different times. I have seen Doug be almost 300 and just be confused yet another time be 130 and in a coma like state, so unpredictable for the individual and any given time. I wish you the best as you go through this.

Sue


Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 6/3/2010 12:07 PM (GMT -7)   
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

Michigan
New Member


Date Joined May 2010
Total Posts : 6
   Posted 6/4/2010 9:39 AM (GMT -7)   
Sorry Connie I wouldn't do such a thing; you are stuck with me :) :)

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 6/4/2010 12:17 PM (GMT -7)   
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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/4/2010 1:18 PM (GMT -7)   
Charlie, maybe get her a simple puzzle or two or some easy crossword books. Or maybe some women's magazines. The problem is that one never knows which days will be bad ones, so it's rather difficult to commit to something on certain days. That's one reason I agreed to co-moderate this forum: I wanted to do SOMETHING, yet didn't feel comfortable committing to anything outside the home. There are times when I have a lot of medical appts., too (like next week when I will be at Mayo for 2 whole days.) If it weren't for overseeing this forum and participating in others, I might go a little nuts!

Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 6/4/2010 3:17 PM (GMT -7)   
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

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/4/2010 4:09 PM (GMT -7)   

DD, you have so much on your shoulders, it's just unreal that family doesn't "get" that!  You really do need to make a stand and say enough is enough!  People that haven't had to deal with fatigue from liver disease just don't get it.  I've been the butt of many jokes about my sleeping and it is hurtful.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/6/2010 12:11 AM (GMT -7)   

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


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 6/6/2010 10:54 AM (GMT -7)   
Thank you Rick, we will try the b complex and see if that helps. I know he takes multi vitamins but it might be good to add the b as well.

Thanks,
DDMom

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 6/7/2010 7:00 AM (GMT -7)   
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
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Date Joined Apr 2010
Total Posts : 195
   Posted 6/7/2010 9:49 AM (GMT -7)   
Charlie... I am glad that we are not alone on this journey and have this forum to vent on as well as be educated on ways to handle things. I do understand how difficult it is to handle the in-law situation, and to be honest most of them have good intentions, they just don't understand the disease. Heck, half the time I don't either. I am here to learn and believe me I have more understanding now because I've gotten information from people who do know because they live it. I understand your wife wanting to go with her family then being worn out for the next week and you getting to deal with it. I get it every time my husband's family pisses him off and I try and tell him your taking it out on the wrong person. He now admits he has been doing that...That's a big step!! I told him he needs to say No to them if he doesn't want to do something or he doesn't feel up to it. That is part of the problem he does want to help out and act like he isn't sick and everything is o.k. when it's not. It's a tough spot for us to be in Charlie as we live with them and in-laws don't. I do think your approach to dealing with your in-laws probably is the smartest way to handle them. But sometimes it hard to keep quiet especially when your the one dealing with it day to day and know what it means when they over do it. I will try and look at the positive side at least they are getting out now and then.

You have a good week to Charlie,

DDMom

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 6/7/2010 11:52 AM (GMT -7)   
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

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 6/7/2010 12:59 PM (GMT -7)   
Charlie,

I totally agree with the false front that our spouses put on and unfortunately it makes it difficult for relatives to see what is really going on with them (not to say some relatives really care). So I do understand their position. I also feel we as caregivers need to take care of ourselves as well. I think sometimes the relatives do need to be told how our spouses are feeling so they understand at times they won't feel up to company. I really think we have to go with our gut and if we don't feel like company then there is nothing wrong with saying not this weekend, sorry but we're not feeling up to it this weekend. I feel it's important to have open communication with our spouses and that it's just as important for them to get rest as it is for us. When you work all week and then take care of them and then your weekend is full (of relatives) I would get a little resentful if that isn't what I wanted. To be honest we have become hermits. I don't really want company most of the time. I don't want to explain why my husband wants to sleep. He will get up and go to bed at any time and he doesn't care who is here....and to be honest I am ok with it for now. I read David's post and they make me so excited to know there are good things after all of this.

DDMom
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