Trying to be supportive

[busygirl]

Hi all - I was very excited to find this site.  My husband was diagnosed 9 years ago, Stage IV cirrhosis but good function.  He's been through treatment three times.  First time nine years ago, stopped at two months due to low blood count.  Second time, one year of treatment, Interferon and Ribaviron, finally reached 0 viral level at 11 months, but not sustained after treatment.  Third time, eighteen months of treatment, peg-Interferon and Ribaviron, reached 0 viral level at 9 months, continued until the end of treatment, but not sustained after treatment.  Treatment was always brutal, sleeping in bed, moving to kitchen table for two hours, moving to couch the rest of the day.  Horrendous side effects flu like symptoms, required neupogen and procrit, developed horrible headaches.  Between second and third treatment had two heart stents put in, then two more after third round of treatment.  During third round and after developed spinal arthritis, degenerative disc disease and spinal stenosis.  As if that isn't bad enough, the depression, inability to concentrate, think and relate to other people is the worst.  He's been on pain killers, although a few months ago I convinced him to have spinal surgery, which really seems to have helped, although some recent inflammation has given him some problems.  His behavior has been really erratic over the last three years.  Spending LOTS of money, out all night, drinking LOTS (at least in my opinion) and hanging out with people I don't think are very good influences.  He has been in counseling for two years, I attend most sessions with him because he "doesn't remember" what happened to talk about it.  He has never really been open.  Three weeks after sugery he was arrested for coke.  I am at my wits end.  I am still trying to get him help.  He refuses AA, NA, or any kind of treatment.  There are no local Hep-C support groups.  He hasn't been sentenced yet, but sentencing will be very mild since it is his first offense.
Any words of advice would be greatly appreciated.

[Helen]

First off busygirl,

 Welcome, sorry to meet you under such terrible circumstances and I really dont have much in the way of advice.    I only know that you cant make him do what he dosent want to do. sounds like he's spiraling out of control and if he refuses help I dont know what else you can do. tough love might be the way to go but it's just so hard. Any children involved? If not, you might need to just let him go and even if kids ARE involved that still might be the case. sounds cruel I know but what else can you do? You can keep trying but it seems like whats happening is your just enabling him and he's taking advantage of you.
 Maybe someone else will have a better idea, I wish I could be more help. But know that we are here to listen and be supportive of you.
 Take care and please keep us posted.

[negative1]

So sorry for what you and your husband have been through. The disappointment of not reaching svr and the after effects of tx could be the reason your husband has been acting differently the past 3 years. I know that when I was near the end of tx, I just didn't care anymore andwas also drinkiing more than I ever had before.
Counseling is definaltley a good thing for him....if he wants to be helped.
The staying out and especially the spending money like crazy are signs of manic/ bi polar behaviour. After tx I was dx as bi poilar and severly sepressed. I had never been effected by it pre tx.
Unless this is how your husband was always, I think that the fact that he has been on tx 3 times with no time to really *heal* inbetween tx's may have brought this on.
This is REALLY nasty stuff and it hits everyone differently and I think that the docs still don't know the full extent of the repercussions of it.
Also, if he is that stage of liver disease, the hep can be\ causing some of the depression.

Earl

[willy]

........... My husband was diagnosed 9 years ago, Stage IV cirrhosis but good function.  He's been through treatment three times. ....

.........  I am at my wits end.  I am still trying to get him help.  He refuses AA, NA, or any kind of treatment.  There are no local Hep-C support groups.  He hasn't been sentenced yet, but sentencing will be very mild since it is his first offense.
Any words of advice would be greatly appreciated.

hi........yes, you certainly are kept busy.  I'm sorry to have to meet this way but I hope that this forum can help either you or your husband.

Bad news first; well....it ain't really bad but it's true.  You do not have any control over your husbands drinking or decision to use drugs.  I'm not certain that your husband even has control over his drinking or drug use.  He may; you certainly do not.  It' very hard watching a loved one who is sick.  It is probably even harder watching them take actions which will lead to an earlier demise.  IF he is a stage 4 he is absolutely killing himself and it won't take decades. 

You may be able to talk either with the lawyer or judge.  Your pitch is that he is suicidal and that he needs to get treatment.  You might be able to get him to witness what end stage liver disease looks like in the final days.  That would work for some people but not all.  Some people absolutely cannot stop drinking.  Some people merely do not care to.  Ultimately it's his life, his choices and his consequences. 

I'd suggest that you get either some counseling to help you with this.  I'd also suggest that you start going to Al-Anon meetings.  The price is right and if you spend some time there.....as remarkable as it may seem you'll meet people who are experiencing similar things with a loved one.....and sometimes are in a worse situation than even you.  I know it seems odd that the loved one is running wild and you are the one going to get help.  The point is you need some help finding some balance in your life, you need help coping with what is in effect a slow motion suicide, you need to find help finding ways to interact with your loved one who may be suffering from depression, mental changes due to diminished liver function, and drug or alcohol dependency.  There's a lot on your plate; you might consider getting some help with it.

You can do this, you can try to "force" him into treatment or counseling, you can consider asking him to chose either to live....with you...... or to die by himself.  Then be prepared to either get a divorce or to leave.  He if he is drinking with 4th stage liver disease and HCV....he had better start getting his affairs in order.  If he is drinking and using drugs he is also disqualifing himself from one of the few things that could save his life; a liver transplant.   I'd almost bet that he has disqualified himself for a liver transplant at least for quite some time.

No one can tell you what course of action you should take.  It's one reason that I suggest getting help.  He is plotting his course.  You need to start plotting your course. 

I'm sorry that this wasn't a very happy or positive post.  You certainly have my sympathy.  It is a terrible spot to be in.

best,
willy

[negative1]

I would just like to reiterate what Willy said abit here.
He IS suffering from depression and I think that his mental state is a combination of liver function AND ( i SPEAK FROM EXPERIENCE ) the post tx effects. Having his mind all screwed up from so many tx attempts has messed with him and his will to live. I didn't do the drugs, but I sure drank..and I would listen to no one! In the back of my mind, I just didn't give a damn! I got arrested too about 5 months after tx due to be screwed up in the head.
The best step I ever took, and this was at my better half's suggestion, was to go to a shrink! I was only on tx once for 48 weeks and I did clear but what it did to me mentally was terrible and I could not have made it without professional help and support from Nicole.
My doc said that he has treated people for up to 3 years post tx because of the mental sides.
A goo doc and the right meds are going to be the best thing you can do for him and yourself. Niocle ALWAYS went to my appts with me and when she couldn't the doc would put the session on speaker phone for her to hear.
In looking for the right shrink, ask if he has had past experience in treating patients that have been on tx. It is very important as I did change shrinks once and that made the difference.
As you cana see Busygirl, there are a lot of people here and you will fins a few that have gone through eveything you are going through now and are very dedicated and have a passion for trying to support and help others. The only way it will help you is if you come  here and read and ask. No one will ever get tired of hearing it. In my opinion, these boards are better than a live support group because you can ask anything anytime that you feel the need and our business hours are very accomodating....lol...we are here 24/ 7 for all!
Good luck as you do have your plate full, but I do think that you can help your husband through this. I know that without the support of Nicole, my better half, I would either be in prison or dead now.
My thoughts and prayers to you and yours.

Earl

[Betty W.]

Busygirl, nice to meet you, sorry you are going through this....Al-Anon is a great place. and I agree with Willy, it is a place where you can meet people with the same problems....Please keep us posted....This is a good place too, to vent if you feel the need.We are always here for you with lots of HUGS and PRAYERS....Betty

[beingbecky]

Busy girl,

Wow you have recieved a lot of good advice. It sounds like maybe there could be a bipolar issue involved with your husband as well as the alcohol and drug abuse. There is nothing you could can do for him if he is not willing to stop drinking and using. He could not get a correct mental health diagnonsis till he gets sobered up for a bit. I feel for the both of you, it's a rough spot to be in. I think Willy's suggestion to go to some Alanon meetings would be a good place to start. That way you could learn how to deal with the effects this is having on your life, and develop some ways to better help yourself. I hope he does get some help, he has been through a lot, the key is he will only do it when he has bottomed out and becomes willing. Bless you both.

Becky       

[negative1]

Becky is right! He has to WANT help before he can BE helped.
Another point Becky made.....and I see the same thing....it apprears that there may be a bi polar issue here. Drinking and drug abuse only serves to amplify these problems.

Thanks Becky!

[busygirl]

Thank you all so much, it is incredible how insightful all of you are.  He has been diagnosed bi-polar in the last four months.  He has been in counseling for the last two years (although I have gone to most appointments with him).  My saving grace has been my own wonderful counselor, Al-Anon (I started four months ago), and incredibly supportive friends and family.  Everyone has helped me to see my enabling behavior, reach inside and learn about my feelings and setting limits.  I don't know where things will end, but I am enjoying working on me.  I haven't given up on him, but I've realized he has to want it and be the one to do it!

Thanks everybody, I hope I can someday help others as you've helped me!

[negative1]

Keep comin here often! Let us know how you are doing too.

[beingbecky]

Ditto to what Earl just said.

Becky

[19Dragon52]

(((Busygirl)))

I agree whole-heartedly with all of the above posts.  I am also very glad that you have gotten involved with Al-anon.

There is a last ditch effort available to your husband but I would advise you to talk it over with your sponsor or your group and his doctors prior to any action.  There are folks in any of the 12 step programs that are equipped to perform (and guide others that are personally involved to help with) an intervention.  I have been a part of one once in my life and unfortunately it had no impact.  It was a very close friend and he has since passed.  He was so sure he knew better.  Very sad.

This all may be a whole different ball of wax being that your husband has been through so many TX's.  That would have to be discussed with those that are capable of doing interventions and his doctors.  Consequently, I may be way off base here.  Also prior to my TX I was diagnosed "Bi-polar" but only after I had been off any mind altering substances for two years of consecutive clean days.  It has been my misfortune to see many Psychiatrists find it all too easy to hand out that diagnosis to folks that are still trying to deal with just getting sober.  It's laziness on the doctor's part.  Please don't misunderstand me...again this could be totally irrelevant due to your husband's Hep C Treatmants.  As Earl mentioned and most of the other folks, the post TX effects can be catastrophic on an individual basis.  I would imagine the doctors' would follow a whole other procedure with diagnosing given your husband's situation.

I guess I am only trying to insert perhaps a different gleam of hope while still recognizing the existing difference due to the Hep C treatmants and the failure to his Liver.  I am so happy that you are taking care of yourself as that is most important at this point.

Please keep posting as I may need you in the near future.  My husband has the beginnings of cirrhosis and is due to start TX in March if the GI is happy with his health coming back from a heart attack he had in November 2007.  He was always a steady beer drinker but has stopped since.  Being I'm a recovering addict & alcoholic I truly admire that he can just stop.  He did that with drugs so long ago.  I just couldn't understand him being able to do that!  Anyway, I don't like projecting but I know how I am and even though I don't really know what lies ahead once he starts TX I fear for my shortness of temper.  My best bet would probably be to start finding a schedule for Al-anon, too.

Much Love & Support and Yes...Please Keep Us Posted
..... .....

[RedRodeo]

Dear Busygirl,
     Thats the sadest story heard. Although all I can think about is him, I am sorry. He has been thru this 3 times!!!! This is the third time for me also and its the weirdest thing. Unless you have done that stuff there is no way you can understand it. I am a pharmacist
and I can't believe the goverment allows this stuff. Not that it doesn't work "sometimes" But people with cancer AIDS you name it do not suffer mentally like we do. I have asked them. I don't know if I missed it but how old is he? I appreciate your dedication to him but you can walk away. He cannot. Does he have alot of symptoms of liver failure?. Since he will not go to AA/NA he should take antabuse at least he couldn't drink.
     Take care and like everyone slse has said keep coming back.
Chris RED RODEO

[jody13]

Dear Buzy Girl   
     What you have heard here is the reason I'm here. People really try to help. I had a son like your husband till he died. You always think of the what if's. But You can't controll him. The more we tried to help our son the more he pushed away from us.Your husband has to want to get better. If he dosen't want to try , your're not helping him by pushing him. I'm not on teatment yet and the more I hear the more I don't think I will ever take it.  Good luck on what ever you decide to do. May the lord be with you both. jody

[Hank's mom]

Hi BusyGirl -

We share situations in many respects, though I'm the one with Hep C, he has COPD - drinking and doing drugs will kill mine, perhaps later than your hubby, but it will happen. I wish you could change your name from BusyGirl to HappyGirl - it sounds as if you have loyal and loving inspite of his continued behavior.

Mine is too far gone to be retrieved and to tell you the truth, I don't the stamina or interest anymore. I tried for years, through thick and thin, as you have. Marriage does mean through sickness and health, etc. for me, though at the point when his addiction disease is putting my health in jeopardy, then the line has to be drawn. Both Hep C and addiction are causes for serious depression and chances are he also suffered from some form of mental distress and has been self-medicating all along. I am certain that is the casee with my hubby.

When I came into the forum 2 years ago, struggling with treatment and trying to make it work only to be disappointed by my husband, many members told me all they are telling you - Willy gave me the same advice as far as going to Al-Anon, nothing I could do would make him behave and act responsibly. He was right, but I held out understanding the impact of attending meetings in our local, little world could impact his business and reputation. At this point, everyone knows by his public behavior, and I had to call the police once when he was out of control, both abusive and suicidal, and rescue because he was enlisting our children saying this had been done to him - someone slipped him a Micky - really he bought coke and then drank more because he was wide awake. His very good friend is an EMT, knows my health issues because he's been on duty almost all the times I needed to call rescue, and I wanted him to understand that buying him cocktails was destroying his marriage and impacting his children. But, he is an adult and checked himself out. I know he suffers from depression over which I have no power.

You hubby is killing himself as surely as if he is putting a gun to his head. Cirrhosis at level four is very serious - being the same level has put me on the transplant list. I am glad to have this alternative instead of more dead ends - I didn't respond to treatments either. It may very well be that his body did not respond to treatments because of his substance abuse. My transplant criteria includes, first and foremost, no substances, abused or casual - period!

I am at long last filing for divorce. Not only have I given this situation my best and more in hopes of turning it around, our kids, who are 22, 20, and 19, and our grandchildren, aged 1 - 10 from our much older boys, 36 and 31 are all being kicked to the curb by his addiction, and I need to make myself as stress free and even as possible, especially after transplant when my body is trying to heal and accept a new organ. All that said, enough is enough.

I won't tell you what you should do - I certainly asked for support and still didn't use it wisely. I just want you to know you aren't alone by any stretch. Let us know how YOU are doing and stop in anytime for support and encouragement.

Remember - you count too,
Susie