alcoholics w/hepC

[HepCWife]

I'll try to be brief.  My husband is retired Army (1975-1995).  He has been an alcoholic through all of those years...he started drinking when he was 12 years old.  At the time of his retirement his exit physical showed the start of arthritis.  He had severe joint pain and continued for the next several years going back to the doctor.  This was at the time of Golf War Syndrome so he was pretty much blown off by doctors...typical of the Army.

A little over 3 years ago they did a hep. panel on him and that's when we found out about Hep. C.  About this time he also noticed his fingers turning blue when he was cold.  He was diagnosed with Reynouds (sp?) and also referred to a arthritis specialist.  About a year later after continued problems with severe joint pain and his fingers turning much darker blue, as well as his feet, they finally referred him to a hepatoligist.

It was then explained to us that he did not have arthritis or Reynouds.  These were the result of "crystals" being circulated through the bloodstream and depositing in the joints and restricting blood flow....causing the blue fingers (and now toes) and arthritis-like symptoms.  A liver biopsy was done and they found he had little liver damage and was a good candidate for interferon.  The problem...he had to be alcohol free for 6 months.  

That was 2 years ago and he has not been back to the doctor since.  His problems are growing by the day.  Unexplained fevers that last for days.  Blue/black color on his hands and feet.  VERY distended stomach...I'm sure it is his liver.  He is a very petite man...5'10"/140 lbs.  His muscles have wasted away...he looks like the concentration camp survivors...sometimes I wonder how his legs can hold up his body.  He has jaundice eyes, and some sort of skin disorder...red patches that eventually fade to white, leaving a molting appearance on his back and stomach.

Despite all these things, his appetite is good and he does everything normal like you and I.  Only when the fevers hit does he slow down for a few days.  He continues to drink...however much less these days and he can get drunk off a 6 pack, when it used to take a case.  He gave up the hard liquer several years ago.  He drinks 6-12 beers a night.  Mind you (and I'm not defending him) he has always been a "functioning alcoholic."  He had a 20 year career in the Army as an alcoholic and most people that see him would never know...he drinks at home, at night, only.

I guess am mainly venting, but I also have some questions.  When we first found out I tried to research all about HepC and his options, but since he refuses medical treatment, I don't waste my time any more.  I feel like it will progress much more quickly now and I don't know if I am prepared to be there for him.  I need to know more about end-stage liver disease but from what I can find, it varies so much from patient to patient that I can't find any real answers.  

He and I separated several years ago.  I just could not watch him dying day-by-day.  We remain husband/wife and best friends...we just can't live together is all.  

I'm hoping this forum can be my support group.  Thanks for listening..and for being here!

[willy]

Hi....... Good to have you here.  I'm off to work and so this will have to be brief.  There is a lot of information here and links to other places too.  I think that I can give you some starting information.

1)  As you seem to already know....... it is very debilitating to watch a loved one continue to take actions which will end their life.  I'm a member of Al-Anon these past 5 years.  It seems that a large part of your job here may be detachment.  You can learn some skills which may aid you in your continuing to help your  loved one without becoming too worn down by it.  You might consider attending Al-Anon.  It won't directly help him, but if you are less worn down by this...... you  may be in a better position to help him (and know the appropriate level of care).

2)  In the area of helping him.......

    a)  He may benefit from further testing.  A biopsy and a series of blood tests may prove that he does not have minimal damage.  I am not in a position to diagnose but he sounds as if he is rapidly approaching later stage liver damage.  If he were aware that he had little time or that many of his symptoms could (also maybe not) be slowed, arrested and even reversed, he might have enough hope to stop drinking.
    b)  I would probably have to agree that if he won't stop drinking....... the prognosis for him is poor.  Perhaps if he had definative proof of his condition OR some hope that quitting drinking would help.  You can help get him attain either of those...... but of course..... you are powerless over his drinking
    c)  If he is interested in quitting drinking an AA program is recommended.  He may also have to have the assistance of a clinic while he dries out.  He very well may need medical assiatnce to do so.
    d)  Here is also a link to another caregiver support group I just found today.  It looks like a nice place.  I was going to post it here anyway before you wrote;

http://www.wellspouse.org/

Good to have you here...... I hope that this helps.

Best,
Willy

[HepCWife]

Thank you, and I hope this won't sound too rude, but I have accepted his drinking and his fate.  I realize that he is terminally ill, and know that he will never accept any sort of treatment.  When he was first diagnosed (and many other times), he did quit drinking for about a month.  When his hands started turning blue, he was really scared and he did check himself into the hospital for detox, but walked out 3 days later.

I manage to cope well with all of this.  At the same time he was diagnosed, we were both watching our 21 year old son-in-law die from brain cancer.  In many ways, I think that is why my husband refuses treatments.  It was 5 of the most horrifying months you could ever imagine...watching such a strong young man die.  While this should have inspired him to fight HepC, I think it made him think that you can't control death and he just accepted that liver failure would be his death.  

I just want to try my best to totally understand my limitations in providing him with care to the end.  

I'm already learning a lot here.  Thanks for this great forum.  

[DjTurtle]

Hep C wife,
I empathize with you and know that altho he is alcoholic, you want to help him. That is especially true now when he is also dealing with the hep c. My ex hus is an alcoholic. Alanon was the best thing I could have done. He is a recovering alcoholic now. I highly suggest Alanon for you. You need the help they can give you... YOU... cuz alcoholism does effect Your quality of life. Do it for yourself and it may just rub off on him, but if it doesn't, you at least got some support.

Support is everything these days,
DjTurtle aka Dawn

[robin]

To me, the pain and stress this virus causes our loved ones is the worst part. I hope your husband realizes what a strong and caring person you are to remain commited to him even though you don't agree with him. You are an amazing lady and I just want to say I wish the best for you and want to reinforce how important our families are. Keep your spirits high...robin

[Dude]

Good morning HepCWife. I'm not sure what help I can give you, if any at all, but I want you to know I am with you, and pray he'll turn it all around. He's really the only one who can. I've never been able to understand the giving up, until I was facing the hell I was in myself while going through the first round of treatments. Perhaps he got wind that if you have Hep C it's a "death sentence". It's not, of course, but that is the reaction I got from my brother in law when I told him I had it, and he's a lieutenant in the county fire rescue here. Show's what the general public thinks, and I suppose they have good reason, they've been taught that if a person has Hep C they may as well start writing their Will. In reality, that's not the case at all, as has been proven by a lot of us here. Take my situation, I really thought that was it, I was a goner. But for some reason I accepted taking the chemo. It ripped me up horribly, but I forced myself to continue. In the end, that entire 48 week nightmare had failed. I was mortified. But I had time to consider what my next step would be, and they had been developing a newer interferon that you only had to shoot yourself once a week, so I opted to try it. What more could I lose? I'd already lost my mind, and just had a few broken bits of it holding me together, so I figured if it hasn't killed me yet, maybe it'll save me this time. But it took everything I had to walk right back into that dark realm of chemo for another 48 weeks. That second round of chemo got me undetectable, but it was like leaving a long, seemingly endless and terrifying nightmare, just to turn back and re-enter it. But I can't deny that the new meds gave me the hope I needed to continue trying.

I think a lot of folks discover this life threatening bug is coursing through their bodies, and has been for years, and expect the absolute worst. But nothing could be more wrong than to let go of your life and dive headlong into the very thing that will surely cause that fear of imminent death to manifest itself as true and final death. Each person has this perfect choice, it's something God gave us all from birth. We can go this way, or that, in everything we encounter in life. We face a dilemma and make the choice for our next move. I think he just saw it as too much effort, or a hopeless situation, or perhaps he just felt so tired of the battle to survive that he tossed in the towel, I really can't say why he gave up, but it seems he surely has. Now the mystery is, how do you reach him to pursuade him that he still might be able to turn it completely around? Alcohol is a real depressant, yet people drink it to get the "fun" out of it that they think will drown their sorrows. It's a big lie we've all fallen subject to at one time or another, but they just keep it rolling down the blue hill of their own misery. In reality, it adds to their misery, builds it from within, making them want to hide in a corner and die away, and drink it away the first next chance they get. It becomes a vicious circle that they think they can never escape from, other than through deaths door. And that's exactly where they're heading, much faster than before, and a lot faster than if they had just made the right decision and quit alcohol, and tried to do all the things necessary to survive. They see that road as a steep mountain, a treacherous climb with many pitfalls, and it truly is, but it's also a challenge to see where they are in their will and their love for life. If he would just make the effort, he'd see his life is worth saving, and all the misery may well fade in time with his health making a miraculous turn around.

The decision is in his hands, but he refuses to acknowledge that there is a choice to make at all. He's accepted this as his fate. He's a fool for allowing that to happen, because in life there is always tomorrow, always going to be a day we can decide for ourselves, and make real change begin to manifest in order to survive. He's just lost his will to fight. He needs to get that back, because he could be, right now, in a place where God will give him that one, very last chance to try. And believe me when I tell you this, God is pleased when we try, and He will reach back and offer a hand up if He see's him just asking for God's help, and making the slightest effort on his own to get back in the fight for his own survival.

I'm praying for you, HepCWife, and for him. You're a good wife to have reached out to us, and it's obvious you haven't completely given up on him. God bless you in your efforts, and help him find his will again.