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Posted 1/3/2011 11:52 AM (GMT 0)

Hello...........I am new to this and am just learning.  I am caring for someone who has liver disease and is still drinking.  He has detoxed about 5 times and each time manages to stay off a few months and then the body pains become too painful and the cycle starts all over again.  He was told 4 years ago by a doctor that if he did not stop drinking he would be dead in 2 years and i think that the symptons of the liver disease really appeared around then. At the moment he is eating but still drinking and sleeps most of the time........especially after a drink. He doesn't take any medication at all. I am just numb to it all now ..................... we thought he was going to die this time last year and he came back so i just don't get it.  I keep telling him the drinking will kill him and he says he is working on coming down from it but the reality is i think he drinks slightly more.............does anyone know anything that can help me.

Posted 1/3/2011 12:02 PM (GMT 0)
CL

This is a good site for information and support. The moderators will introduce you to the stuff to read.

But I have to say, that as a caregiver to a person much like your patient, it will be difficult to help him at all until he is ready to quit drinking.

The folks are sort of divided on this site between those who are working hard to keep their liver disease under control and to prolong the length and improve the quality of their life. Maybe even qualify for a transplant if it came to that.

And those whose loved ones drank until the end...which came with serious illness. How long he has is sort of up to him.

I feel your pain. I begged my hubby to stop drinking for years, but until he was told he had 90 days max if he kept drinking...he kept drinking. When he was really feeling sick and the doc was so clear, something clicked in his head and he has been sober 95 days.

He may qualify for a transplant or not. but the last 95 days have been the best in a long long time. Not that being sick is so great for him OR US...but he isn't denying his disease. And he isn't hurting his body any more. And he isn't acting like a jerk to his family.

Sick -- yes. A jerk -- no.

Best,
Mama Lama
Posted 1/3/2011 12:32 PM (GMT 0)
Thanks for that. You say your husband has quit drinking....how did he do it?
what is weird is that each time he has detoxed he has looked well but the body pains have been severe. It just seems to me that the body is resiliant and can just keep going. I keep saying that he could feel better but needs to pack up drinking. 2 weeks ago when he wasn't drinking he had started being sick and combined with the body pain he decided to start drinking again. People ask why I do it when he used to be very verbal.................and i don't know i just think if you care for someone you just do it even though at times you want to run away
Posted 1/3/2011 2:03 PM (GMT 0)
Hello Cameronlee and welcome to Healingwell.   You have found a great site for support and information.  People here share what knowledge they have from experience. 

I am sorry your husband hasn't quit drinking yet.  But don't give up.  He just may surprise you......mine did. 

He honestly needs to be under a doctor's care......preferrably a hepatologist.  There are meds that he can take that will help with the pains and all the symptoms.  It's not fun to take a lot of meds but it beats the alternative......

Please read our educational thread in the resource folder at the top of our forum.  It has a lot of good information.  We also have a caregiver's thread that we use for ourselves.  When the caregiving gets tough and we need to vent.   It's further down the list of posts. 

You are not along any longer......Lot's of us have been or are still in the same boat as you. 

Take care.....thoughts and prayers........ 

Posted 1/3/2011 2:05 PM (GMT 0)
cameronlee....I lost my partner Mike in April 2010... he had Hep C, ESLD and it was a long path until the day he took his last breath... he was sober the last year....I love your last line... I would have written that myself... and I didn' run away .... and I wouldn't.... we were lucky to have each other...I would do it over again though it was the hardest thing I have done in my life except live without him... focus on taking care of yourself.....it's tough when you have no clue what the future will bring... and your life is tied to a person who is making unhealthy choices that effect your life...take it one step at a time... and try not to let those racing thoughts about the future overtake your mental health...
Posted 1/3/2011 2:25 PM (GMT 0)
Mike was so sick, he couldn't eat or drink...so that was a kick start. He had peritonitis/sepsis/acute kidney failure, was hospitalized, and all but died. After a week on IV meds and the aforementioned "come to Jesus" talk by his doctor, he just got it in his head to quit.

He had been drinking one or two bottles of wine a day or 5 or 6 mixed drinks..daily, every day, every single day...UGH...for years.

Granted it hasn't been years and years sober, and who knows what may go on in his head as time goes by (if time goes by).

Then he learned that transplantation was his ONLY option and that transplantation would be impossible until he had 6 months of DOCUMENTED sobriety and an alcohol and/or drug rehabilitation program. And that a shrink would have to say he was okay.

He had been sober 6 weeks when he heard that he was terminal bar a transplant and that the transplant path had a gate keeper: treatement!!!!

His choices were an inpatient program followed by counseling or AA. He joined AA that very day. I went with him at first, but he goes himself now. This is his jouney and he needs to find the path himself.

He also has an ethanol blood draw weekly to prove he isn't drinking. They don't even use alcohol wipes for his blood draw...they use a little betidine I think it is. His PCP sees him monthly to ask any questions and to be certain he is on the right path. So far, so good.

The decision to stay with your alcoholic or go is always a key question. Other folks ask that question all the time of folks like me...why stay?

I told him several years ago, when the Hep C started to get bad, that I'd stick with him through the end.

Never knowing that this process could be so awful. Or so long. He was diagnosed in the 90's.

I have waivered several times, threatened, etc. But never left or made him leave.

This time I've told him I am very clear. I will see this through. But if he goes back to drinking, I'm out of here.

I dont know if I would be that strong. But being primary care giver for a person who is dying is tough...especially if they won't help themselves.

So far so good here. 96 days and counting.

Best luck. But remember, this is his journey. Mike had the attitude..."hey I'm just dying here, who cares, I'll die happy." He didn't realize that the trip down hill got very steep and AWFUL. And there was no enjoying the booze when the liver shuts down! Just pain and suffering.

ML
Posted 1/3/2011 3:21 PM (GMT 0)
Thanks for your story it helps at times like this to be able to get things of your chest and also for the valuable information i gain from this.  I know that everyone has a different threshhold of tolerance................but my guy started drinking late in life and socialised with guys who kind of competed with how much they could drink.  He has been drinking about 20 years (god they soon mount up) and because work around the world involved drink was probably drinking 2 - 3 litres of spirit a day..............one day he just woke up feeling crap and decided to have a hair of the dog and that started the viscious circle of round the clock drinking.  In the last 3 years that he has been bad he is only drinking 1 litre a day and as far as he is concerned he has cut down.  This last week whenever he drinks about 2 minutes after he falls asleep and he cant control that...........i keep telling him it is the drink and if he could stop he could come back but sometimes i wonder if it is too late for that.  I dont really know that much other than his liver is in bad shape and he is still drinking!!!!!!!!!!!!!
Posted 1/3/2011 6:34 PM (GMT 0)

Cameronlee, welcome to the forum.  I suggest you read the info at the top of our main page entitled Hepatitis Resources (it's about end-stage liver disease, the stages, etc., not just viral hepatitis.)

ML's guy is staying sober through AA meetings 6 days a week and sometimes 2 in one day.  If he keeps this up, he will have a longer life and a better quality of life.  So could your guy.  Another guy is staying sober through alcohol counseling.  My vote is for AA, since it's kept me sober for 24+ years.  But every alcoholic needs ongoing support or treatment of some kind to stay sober.

Some of the pains your guy is feeling when not drinking are because he is not medicating with alcohol.  Once off alcohol, the alcoholic feels every little thing intensified, including emotions.  This is why AA is needed:  To learn to live sober, not just to put the plug in the jug.  But you cannot make this decision for him.  He has to want to want it.

Any amount of alcohol that your guy is ingesting now is like pouring gasoline on a fire.  He will continue to go downhill and experience some awful symptoms, like bleeding varices and hepatic encephalopathy.  Without alcohol, he could possibly recover.  If he continues drinking, he will die an ugly death.  Those are the hard, cold facts.

But what you do is up to you.

Hugs,

Connie

Posted 1/3/2011 6:59 PM (GMT 0)
Cameronlee,
My hubby (like ML's) has been alcohol free for over 90 days. He was a drinker for his entire adult life. He has been attending a chemical dependency program through our healthcare provider. During his detox, he was taking prescribed lithium to help him through the physical pain of withdrawal. He slept a lot during this time and was very weak. Encourage your guy to get to the doctor for help with stopping the alcohol.
Emma
Posted 1/4/2011 3:41 PM (GMT 0)
forum moderator

thanks for your help with this horrible disease.  His character without drinking is someone that likes to be right and quite controlling within his life, but also very generous and a gentleman.  since he has been drinking at times he turns into a monster..............verbally!!!!!!!!!!!

The problem he has is that whenever he has detoxed he has never accepted any other help coz he knows best and he feels that they would invade his privacy and he feels that he doesnt want that. Personally if it was me i would want to do everything and anything which would help me.  But i am not him!

He said he had numbness in his leg last week so i called the doctor they sent him to hospital and he was there about 20 minutes and panicked and so we left again.

Since then all he does around the clock is drink............he is meant to be cutting down from his litre of vodka but i think that he is going over it.  And he calls this cutting down his way.  He sleeps alot but my daughter has been round today and he has stayed awake.....the minute she left he crashed and god knows when he will wake up. He just sits on the settee all day and all night and sleeps inbetween drinking. I can honestly say that i dont know what to do anymore except wait and see what happens next.

I feel like i want to move on with my life but i am his only care giver and it worries me to think of him being alone and anything happening because he falls all the time. 

Posted 1/4/2011 9:38 PM (GMT 0)

First of all, AA does not invade anyone's privacy.  It's up to the individual what to share.  In the first month or so, it's best to just listen and not say anything.  When one does share, it's in a general way--we don't get too specific or share personal things.  But a sponsor is also needed at some point...someone who can be trusted not to repeat what he hears and who can guide one in the Steps.

But really, your friend is just making excuses.  And he is kidding himself about "cutting down."  A liter a day is too much for anyone.  A drop is too much for a person with liver disease.  I actually switched to beer towards the end...and then cut down to just weekends....before I gave up alcohol completely.  So I had no withdrawal symptoms except for having trouble sleeping for a couple of months.

While it seems impossible that his drinking and living could go on much longer, it actually can drag on for a year...or more.  And he will increasingly get worse.  The verbal assaults sound like encephalopathy that I spoke of in a previous post.  This can progress to extreme confusion and not knowing his own name.  You will have to decide if you are willing to endure this.  Just don't be an enabler by getting him alcohol.

Hugs,

Connie

Posted 1/5/2011 4:15 AM (GMT 0)
hi

my hubby goes to AA regularly now.

he "says" that he isn't 100% on some of the "stuff". like the higher power thing. and he says he doesn't talk.

but for some odd reason, he is always in a better mental state after and for several hours.

i dont know what it is, but the group thing is working for him

and i am so glad and so proud that he is sober now.

mama lama
Posted 1/5/2011 2:44 PM (GMT 0)
Forum Moderator

Thanks for that information!!!!!

Last night he ran out of vodka and i had some of it hid for just incase! He was restless during the night i don't know wether he went to bed or not. this morning when i got up he looked bad.  He had been drinking milk as he does and then because there was nothing for him to drink he started throwing up and must of been doing so for one hour so i decided to let me know that i had some vodka for him but first i needed to let him know about what i had found out through this site about what was happening to him and the where he is going if he does not pack up drinking. 

He listened and agreed with what i was telling him and said he was going to detox his way by cutting down and  then he drank the vodka down in one (quater of a pint) and went and got his litre bottle and now i am just not sitting in the same room because it is getting harder and harder for me.

One minute he is completely agreeing with me and the next life is all rosy again and nothing matters and won't listen and goes into his own world where nothing matters!!!!!!!!!!!!!!!!!!!!!!!!!!

Posted 1/5/2011 6:18 PM (GMT 0)

It should be obvious, even to you, that he is NOT cutting down.

Hugs,

Connie

Posted 1/5/2011 8:53 PM (GMT 0)
Cameron... the words that scream off the page of your  post... Nothing else matters... the unspoken words are.... Cameron doesn't matter .... to him or to herself... Cameron has become lost inside of the mad mad world of this situation....

I speak to you from experience...painfully gained experience..... there was a point ... very similiar to yours where I had to tell Mike that I would not sit and watch him kill himself... and gave him that choice... he did chose to be sober... with a couple binges along the way but he did quit... whether you choose that path or another... you need to find a way to disengage and sit back and look at your situation and his realistically... and decide what you are willing to vest... and to lose... because those things that you think you are willing to lose may be just the beginning... you could lose more...I made a choice to stay regardless of his choice and that I would see it through no matter what... and I paid the price and I still pay the price...in other areas...I don't blame anyone for that choice... but you need to make an informed choice... and take care of yourself through that process... if any of this makes any sense..myself... I support you in your struggle to find yourself and some kind of help. Sandi

Posted 1/5/2011 9:09 PM (GMT 0)

I agree with Sandi.  It's easy to lose yourself and your goals in life when caught up in the drama of your loved one's liver disease.  Whatever your decision, you need to take care of yourself.  Whether you realize it or not, you are codependent in this relationship.

Hugs,

Connie

Posted 1/6/2011 10:30 AM (GMT 0)
In response

Thanks for your experienced views.  I know that if i was outside the situation what i would probably be saying to that person, isn't what i am actually doing.  It is very difficult to know that someone doesn't have anyone else. when i haven't been around i have worried that he may have fallen or something and because i am the only person closest to him!!!!!!!!!!!!!!!!!!!!!!

I am sure it will all unravel itself and i will be able to move on. I am grateful for your words of wisdom and i do appreciate the feed back.  Thanks

 

Posted 1/6/2011 12:01 PM (GMT 0)
ok.

feelings are one thing.

alcoholism is another.

end stage liver disease/cirrhosis is the worse outcome. the path is deadly and horrible.

BUT, CL, there are things you need to think about.

If this ends badly, what is to be your situation? Does he have a will, medical directive, power of attorney naming you or an attorney to control his affairs, DNR, etc? Does he have kids separate from you that are going to toss you to the curb?

Are the house, car, etc in your name also? or lease your name also? Can you afford to carry the expenses if he is not working or collecting his retirement? Do you need tdo get a job/better job?

Does he have medical insurance? Medicare? Medicaid? Should he? He might qualify for Social Security Disabillity if he went to a doc and got property diagnosed.

If he is simly dying. And you are going to be his only caregiver, make sure you know what you are going to do and where you are going to be NOW and AFTER.

This is cold, I know. I am in the middle of it. I have posted before.

My primary called me on the phone just before this got really really bad and told me to divorce him so that his stuff didn't get onto my side of the financial ledger because his final illness would be very very expensive!!! Get that, on a Sunday. Our Lawyer called me and told me to take his name off stuff.

When he dies, the house is only in my name. If I go first my will fixes that.

He has been sober since September. He is very ill. But...he is just ill. Not a jerk. Most of the time. When the heptatic encephalopathy kicks up, he acts like a jerk sometimes still.

But here I am. Caregiving 24/7. He must be a good man.

Mama Lama
Posted 1/6/2011 4:27 PM (GMT 0)
ML-he must be a good man. And you are a good woman there for him 24/7. I am always sending positive thoughts and prayers for both of you.

Rick-I am sorry to hear about your experience with your daughter. It must have been yet another stress for you and your wife to deal with while you were in the heat of the battle to claim back your health.

Thank you both for being strong and for sharing your experience so that others on this forum can be helped.

Emma
Posted 1/6/2011 5:36 PM (GMT 0)
Rick,
That stinks. Even though my ex mishandled my finances when I was in the hospital (almost 2 months), she was smart enough to keep her mouth shut about it. Some of the lost $260,000 went unseen by me for almost a year.
Posted 1/6/2011 7:15 PM (GMT 0)

Cameron....take what you can here and apply it to your situation...the most important thing is that you decide for yourself with an informed choice what you are going to do...regardless of Mike's choice.... I would have been there for him... I would not have stayed with him... or lived with him... however... I would have been there at his last breath...for me it was a matter of keeping my commitment...and I value all life...I did not emesh my whole being with Mike...  I took informed steps to arrange things in the end... I paid a high  price in many areas of my life... but I willingly paid those... and would again...  I know where you're at...I've been there...but your choices need to be yours...I could care less about those who judged myself or Mike... who blamed me for caring or him for his condition.... the fact was in the end... he was dying.. and no amount of words or finger pointing was going to take away the day to day task of caring for him... and as I looked around there was no one standing in line to do my job... take care of you... disengage to the best of your ability... find someone to talk all this through... if you can...there is truth in all that is said here... take the part that applies to you... and go forward... my thoughts are with you Sandi

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