Wife needs help for husband

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smileytex
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/20/2009 8:21 AM (GMT -7)   
Hi, I'm new to this list and am caught on the fringes of the effects of liver disease.  My husband was diagnosed last fall with cirrhosis, fatty and enlarged liver, varicies, and Hep C.  Just before Christmas he told me he wants a divorce and is proceeding with such.  His health is failing - sleeps a lot (ex. slept from 12am to 5pm yesterday) very irritable to the point of physical interaction.  He doesn't live with us as he moved into his own house without us.  I no longer have access to his doctor and do not know any of his labs results. I know who his original doc was but not who he is seeing now and he removed my access to his medical info. 
 
He doesn't have a job either and at this point I don't know that he is physically capable of working either.  I love this man dearly yet he has shut the door on what I can do to help at every point even refusing to go to the dr. on my insurance.  He tells his mom that he wants to live but tells me that he's ready to die.  I don't know what it is that I can do to help encourage him to get help as I think his ammonia levels are elevated but I can't do or say anything that I know of to get him on track and I don't think that he is mentally capable of making the right decisions right now.  Are these the effects of encepholopathy? 
 
He's only told me that he is in the last stage before liver failure.  I'm so lost on all of this as I do not have any real medical information regarding his case.  He has been referred to get a liver transplant but he's not on the list as far as I know. Considering that we (family) would be his support (medically and emotionally) I don't know that they would put him on the list either. He hasn't been to any AA meetings that I am aware of. He does work out to try and lose weight and relieve pressure on his liver. He's hurting physically and has flu like symptoms too.  I do have excellent insurance and can even get longterm care for him too but he would probably resist this too.  He's had the psych evals and apparently they put him on a mild anti-depressant.  He watches his diet closely from what I understand and in a 2-week period he lost 18 lbs. To me, this great weight loss is not good since it is so much so fast though I do understand that any weight loss is a good thing to take the pressure off of his liver.  He is jaundiced and has been probably for the last couple of years though we thought he was just tanning well as he is in construction and works outside sometimes. 
 
If anyone can help me understand what is going on, how I can gain access to his drs, or anything about what to expect I would dearly like to know so I can prepare not just myself but our children as well.  We have 2 young children (5&7 and I have 2 older ones from a previous marriage) so he does have someone to live for besides himself.  I feel just really left out of what he's deciding with him not considering the consequences of his actions and he's about to not have any place to live either and potentially no phone to call for help if he did need it.
 
Even if you just have words of encouragement, I'd love to hear that too.  But if anyone knows how I can do something then please let me know.
Thanks and God Bless, Eva

Post Edited (smileytex) : 4/20/2009 9:25:55 AM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/20/2009 11:31 AM (GMT -7)   

Eva, I'm glad that you found us, but sorry that you need to be here.  Yours is certainly an unusual situation.  At this point, are you just separated?  Is it legal or did he just leave?  Was the marriage in trouble before this, or did he just decide to move out because of his diagnoses?  Every person has the right to decide if he/she wants treatment or not.  You might want to retain a lawyer to see if you can get access to his medical records.  This might be a possibility if you are still married.  However, even knowing what is going on may not be of much help if he doesn't want treatment.  Has he stopped drinking?

For the moment, the best thing you can do is to read some of our educational threads on the main Hepatitis page (they will have Education in the title or Symptoms.)  Sleeping a lot and getting days and nights mixed up is very common.  As to the weight loss:  Is he taking any diuretics?  This can  cause an immediate drop in weight if he was retaining fluid.  He could have encephalopathy if his ammonia is elevated.  There is an educational thread on that, as well.

You will get a lot of support and information here, so please come back often.



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

Post Edited (hep93) : 4/20/2009 12:34:28 PM (GMT-6)


smileytex
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/20/2009 12:41 PM (GMT -7)   
Right now we are legally separated and I am not in support of a divorce as I believe that his condition warrants our need to try harder. Our marriage was sort of having some difficulties (extenuating circumstances) but not anything that I ever felt would separate us. All I've been able to reason is that somehow all of this is interrelated with the diagnosis and his condition. Kind of a long story on the marriage issues but really, up until October '08 our marriage has been beautiful though normal in many ways.
 
I wish I knew what meds he's taking so I can't say if there are diuretics involved or not right now. I think there were at the beginning but I just do not know right now.  I do know that his doc initially prescribed blood pressure medicine and if I remember the report correctly it was for portal hypertension. Guess we can add that problem to his list too.  He tell tell me once that if he were to drink again it could kill him instantly.  What I worry about with the kids is whether something to happen to him while they are with him. I'm working out on educating our son about how to contact 911, me, etc.   
 
I think he has for the most part stopped drinking though I do know of one time where he drank in January but not sure of any other episodes.  He is like night and day sometimes and even the kids notice.  He's fine one minute and the next he's snapping someone's head off which is usually mine but not always.  I think he is beginning to recognize that it is the illness but he has a hard time controlling it.  I've just been convincing myself that it is the illness or perhaps the undiagnosed bi-polar which caused him to drink in the first place as a form of self-medication.  He really is a good man aside from what the illness(es) is doing and I want to see him through this and know that he doesn't have to go through this alone. 
 
I want to help him in whatever way it is that I need to be it to take over his care, walk with him in his care, whatever. I just do not know where to start.  I've been reading and reading.  This website has been the first that I have found where I might find some help to get through this.  I've been leaning on God to carry me through this as I am really confounded on how when someone really ought to need his family the most that we can be rejected at the very same time. 
 
I guess what I need to know are what signs can I look for from a "distance" that will clue me into whether I need to urge him to go to the doctor sooner or later? He won't let me touch him.  I've seen him itching again.  Last spring he developed a terrible condition with sores on his legs and arms and none of those docs clued us into a liver problem they were looking at MRSA or follicilitis. 
 
I just want to figure out how I can help him if I can and if he'll let me.  We need him and we love him a lot. After reading some of the ed posts, it seems as he has more of the symptoms to watch than not though I don't have access to the labs to confirm or the close physical proximity to see how weak he really is or to watch his discharges. I do know he is having memory problems as he uses GPS to get around town and is using appt reminders to make sure he gets to football practice on time and such.  His short term memory appears to be getting worse too. 
 
This is really frustating as I'm sure you can imagine.  He could probably get better care if I were at the dr. appt with him. Yes, this certainly appears to be a unusual and difficult situation to say the least.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/20/2009 1:00 PM (GMT -7)   

Eva, I think there is a big concern about leaving your young children with him unsupervised.  You may need to have the visitation order altered, if there is one, to not allow him to be alone with either or both of them due to his medical condition.  The personality changes could be either elevated ammonia or the bipolar disorder.  Is he taking meds for the bipolar?

I think the only thing you can do is to tell him what you have told us:  Essentially that you want to help him in any way possible, and ask that you be let into his life to help him deal with the disease.  Of course, you would do this when he is calm and in a receptive mood.  Due to the memory problems, he really needs someone with him during the doctor visits.  about the itching and the doctors not picking up on that being related to liver disease:  Primary care docs, and others not specializing in liver disease, are not really knowledgeable about the disease.

I wish I could offer more help, but without his cooperation you are very limited in what you can do for him.



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


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 4/20/2009 6:28 PM (GMT -7)   
Eva,

I am so sorry you are having to walk through this, especially with young children. My husband has HepC/ cirrhosis and we have a small child as well. I feel very blessed that my son (he will be 5) just kind of goes w/ the flow with all of the hospital visits, etc.....

I agree with Connie, first and foremost, you need to do whateverr it takes to make sure he is not alone w/ the kids. If he has not stopped drinking, it could be very dangerous for him to be alone w/ them. Alot of the confusion could be the encephalopathy, and if he's not taking Lactulose, his ammonia levels will not go down. And, if he's drinking on top of all that, it certainly does not help. Unfortunately, it does not sound like he's willing to help himself and until then, there is not much anyone can do.

Howeverr, if he's becoming a danger to himself or anyone around him, your attorney may be able to point you in the direction of having a court ordered medical powerr of attorney put in place, etc.

Do read the posts here. There is alot of educational information here, along with alot of caring compassionate people, some caregivers and some patients that can just be here to listen, and walk this journey with you.

I see by your name you may possibly be in TX....that's where I am.

You hang in there and you take care of you!

Mer
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