lovetohikect

Hello, thank you so much for having this board and the support and information to share. As so many have said before me, I feel I'm getting close to the end of my rope...

I have searched the forums to the extent I can (probably not very competently) and I have not found any information about our specific situation. So, I thought I would post the relevant details here and if there is anyone with experience or insight, I would be so glad to hear it, and I'm sorry in advance that this is so long.

My husband and I have been married for 25 years this month, and we have 4 children. Our oldest, now 24, was diagnosed with liver disease at the age of 13. It was (apparently) a very rare reaction to a common antibiotic, prescribed for skin problems. In 2009, when he was 19 and had already gone off to college, the first liver disease "morphed" into a second, much more serious and potentially fatal, liver disease. None of this, certainly so far as we ever heard, was related to substance abuse (although we were aware that he did drink and use drugs in high school and college, not to excess so far as we knew).

Fast forward to the summer of 2011, our son's health had deteriorated terribly, to the point that he was listed for, and then did receive (at the end of June 2011) a liver transplant. At this time he was 21 years of age.

Very, very unfortunately, the pain medication that he was prescribed after surgery became a habit (we also have reason to believe that he was taking pain medication, prescribed by doctors, before this). Between the time that he received the transplant and now, he has done nothing to move his life forward in any way whatsoever, and has become both a heavy drinker and a virtually indiscriminate user of psycho-active medication and painkillers. (Just as an example, he most recently ingested a 45-day course of Klonopin over the course of a week.) He is a highly intelligent person and has learned, extremely well, how to manipulate the medical system to obtain the drugs he wants. Needless to say, for someone in his condition, any level of alcohol intake whatsoever is completely counter-indicated. Since the transplant he has suffered several life-threatening complications and over the past year has been "legitimately" hospitalized for these at least three times. (He has also been hospitalized at least a dozen times more but this was primarily drug-seeking.)

He has been living with us for approximately the past 13 months and, during this time, his drug and alcohol use appear, if anything, to have escalated. He refuses to seek treatment, to attend step groups, to be honest with the psychiatric profession (he has had at least three therapists in the time he's been living with us) and strenuously denies having any substance abuse problems of any kind. Because of his medical condition, we have felt constrained to permit him to remain in our home, although we have investigated other options such as sober house living (he was rejected). At the moment he is not under a psychiatrist's care because he has refused, point-blank, to be compliant. I imagine that most loved ones on this board are all too familiar with the level of grief and chaos that has resulted from this situation.

We have been advised to seek a conservatorship over him and have him committed, against his will if necessary, to a rehab facility. Some of the questions I have about this include: does rehab work for people who are not interested in rehab? I know it's going to vary by state, but what kind of evidence will we need to show, to establish that he is incompetent due to drug and alcohol abuse? We have been extremely close-mouthed about this situation with his doctors, other than his psychiatric professionals, because of our fears of "making a record" that he is an addict. Is there anyone here who has had experience with a loved one with substance problems and a transplant? If we do go for the conservatorship, or if he is admitted to a rehab facility, I am assuming this will disqualify him for eligibility for another organ should that become necessary? (I'm not saying that in any absolute sense he would "deserve" another new liver, given his intentional destruction of the one he has).

I feel that I could go on at greater length but will stop now and look forward to any and all input. Thank you!

Sasha4

Hi

I don't have any advice as such.
I am from the other side of the forum but I wanted to make you feel welcome here and say that you have made a fantastic choice coming to Sober Recovery.

There are lots of moms and parents here who I am super sure will be along to offer their experience.

Your post was so well written and the love you have for your son is clearly evident.

I wish you and your family the best xx

lillamy

Hi & welcome!

I don't personally have any experience of a situation like yours, but hopefully someone will come along who does.

What I can tell you from my experience is related to mental illness (and there are some that classify addiction as mental illness, so maybe it's relevant?). I found, when my daughter needed inpatient mental health care at 13, that even for an underage child, it was unfortunately very difficult to find a facility/program that would accept her. I had to wait until she herself wanted to be admitted before any program would take her. Their reasoning was that until she was ready and motivated to get help, their time and energy would be wasted. She did get to that point, was hospitalized, got the help she needed, and came out a different person than she went in. I've said to people that I dropped off a three-year-old and got back an 18-year-old -- that's how much she grew and started taking responsibility for her life. So there is hope, there is always hope.

I can imagine that it must be heart wrenching to see your son destroy his life in this way. I also have a child with a chronic illness, and while I don't have favorites among my kids, that little sick one somehow has a very special place in my heart because of all the pain and suffering she's been through. I can imagine that your Mama-heart is hurting very badly.

I understand that you don't want to share his addiction problems with all his doctors -- I'm assuming in your case, it's not because of the shame that most addicts and families feel, but actually about his survival: If his doctors know he's an addict, he wouldn't qualify for another liver transplant, should he need one -- right?

My heart goes out to you, as a fellow mother. I do hope you can get help and support. You can't make him want recovery. As hard as that is to accept.

FeelingGreat

Hi, what an awful situation for you and your husband. Your son seems determined to self-destruct. Have you investigated whether you would be able to get him involuntarily committed, as opposed to just wanting to?
Assuming it's possible, there is evidence that people who are forced into rehab have recovered. Obviously to want it is better, but if he is beyond that point through abusing substances he would need to detox before he had a chance of thinking straight.
It's just my personal opinion, but I feel very strongly that people who are beyond seeking help should be committed, even against their will. There seems to be more going on than just the substance abuse, but he won't have the time or ability to address it unless he is sober.
It's such a hard place for you to be in. Try to seek professional advice, and educate yourself as much as possible.

Florence

I don't have experience having a child as an addict. I'll say a few things about my STBXAH though, who had a similar trajectory.

My STBXAH is very smart, very very smart, which is apparently a real problem in treatment. The smart addicts get to where they can basically run a treatment center if they wanted to, and be using on the side with no cognitive dissonance whatsoever. While he did not have a chronic disease, he does have chronic anxiety and depression, and his parents have decided that their home is his home indefinitely, regardless of whether he is pursuing treatment. He was a heavy drug user in high school and in young adulthood, and eventually settled on alcohol as his DOC. His parents were oblivious to a lot of it, or looked the other way, or chose to believe it was mostly behind him, or attributed his behavior to other issues. Largely, they still do.

This has become a real issue, in that there's no motivation for my STBXAH to get up off his duff and make the kinds of major life changes necessary to get his life together. There is pain in his life, sure, but as long as his enablers continue to provide soft places to fall, he is not suffering the real and natural consequences of bad decisions. I strongly feel that the soft-handling of his addiction and mental health issues has provided an environment that is just comfortable enough for him to continue on in his addiction indefinitely, only making gestures toward "changing his life" long enough to get whomever is nagging him that day to back off.

STBXAH has been to four rehabs during our marriage and has not stopped drinking. Rehab is not a magical solution (alas!) but what it did was put a signpost up that says, "We all acknowledge that you have a problem, whether you address it or not." After we passed a couple of signposts, where we all stood -- all of us, parents, siblings, children, addict, and spouse -- in addressing the problem became pretty clear.

I strongly believe addiction is a family disease as I have seen it with my own eyes. It will fill the space you give it and thrive there. What most of us find is that we have to stop providing it space to live in, and only then can we do the addict in our lives real justice.

I have a lot of conflicting feelings about this, but it's pretty well common knowledge in recovery communities that you can't medically treat someone accurately and well unless the addiction is halted and they are sober for some time.

His doctors are unable to treat or inform him effectively without information pertaining to his addiction. He's making his body toxic with repeat and sustained chemical alterations when he gets high -- it has all kinds of negative effects on the body, and all kinds of effects on his existing conditions. What are they? You can't know until this is open knowledge. I understand the fear about future transplant eligibility -- but my understanding is that people who can show they are participating fully in a recovery program remain eligible for transplants. Any other policy would probably violate federal disability laws.

hopeful4

Hello and welcome to SR. What a tragedy that brings you here, I am so sorry.

I can only say that opening up to his physicians and having him recorded as an addict may be the only thing to save his life. As someone said above, he seems to be on a path of self destruction. I would speak with an attorney who can advise you about having him committed and be very very honest.

I am so sorry. We are here with you.

Hugs.

lovetohikect

What I am gleaning from the above (all extremely helpful and kind) responses is that we should, in fact, consult an attorney to discuss possible commitment procedures as they relate to our son. I guess he or she will be able to give us the best information regarding the standard of proof necessary to establish that our son is, in fact, incompetent. We will need to "let the chips fall where they may" in terms of his future transplant eligibility because, as was pointed out, and has been pointed out to me in real life as well, if he's dead of an overdose or alcohol poisoning, it won't really matter whether he would have been eligible for another organ.

One thing that I really deal with, on an ongoing basis, is a huge amount of guilt over the fact that he is the one who did get a beautiful new liver, one that many other people probably died waiting for, who would have led healthy and productive lives with it. I have never even been able to bring myself to communicate with the donor's family, because I feel so terrible about what our son has chosen to do with his life after the transplant. If I were on the other side of it, I know I would be filled with rage at the idea that my child's organ went to someone like my son.

happybeingme

I dont have any facts but most of the information is now available.online. You could also contact your local social services agency. As an active addict he would be disqualified from another transplant that I do know. But, if he is as bad as you say it is possible if he is hospitalized he would start detoxing so everyone would know.

I am sorry you are going through this

Refiner

Unfortunatley, most states (if not all?) won't admit anyone unless they admit they are in harm for themselves. And then I think you're talking about a mental hospital, not an addiction rehab place. And unfortunately rehab does NOT work unless the addicted individual wants to recover and are commited to recover. No one can do this for them and certainly no "forced" program will work. The best thing you can do is set your boundaries and let him go. It's up to him whether or not he wants to seek help, and as long as he has a roof over his head (and obviously $ in his pocket from someone), he has no reason to change anything.

lovetohikect

The "let him go" option (in other words dropping him off at the nearest men's shelter) isn't an option for us. Believe me if he didn't have serious medical problems, he'd have been gone years ago. And, I completely understand that in supporting him, we are enabling him. I do get that! But, he is severely immune compromised/suppressed. He has persistent c.diff., to the extent that probably most congregate care places would reject him just for that (and, yes, he's "used" that diagnosis to avoid being put into group care in the past). He has a clotting disorder and is on heavy blood-thinners. He has severe osteoporosis from many years of steroid use and has a broken L7 (I think). To top it all off he has Crohn's disease and seems to have some pretty severe side-effects from that.

We have tried absolutely everything short of locking him out... contracts, bribes, tears, several interventions, getting him psychiatric help, forcing him to go to step meetings (he walks out the back door). Just for the next two months, I moved him into a room in a sublet for which we are paying all expenses, because I just can't even look at him anymore. I completely understand that if his back were truly against the wall, if he really had to do something about his condition or starve to death, he probably would do it, his medical condition notwithstanding. My husband disagrees, though; he believes as an empirical matter that our son would *in fact* pass away if we cut him off, so unless I am prepared to walk away from my marriage, as I say this is not an option for us.

firebolt

You have nothing to feel guilty about - you have no control over what your son does to his liver! I'm so sorry for all your family is going through, and hope you can find time to take care of yourself through all of this! I wish I had words of wisdom...just sending you good thoughts of peace and strength.

Refiner

I understand and you are in horrible dilemna. If you do nothing, be prepared for this same ending anyway. I don't mean to sound harsh, just factual. Perhaps you can talk your husband into getting onto this board and educating himself on the addiction.

littlebird73

Hi, I am so sorry to hear about your situation, but glad that you are seeking help here at SR. This is a wonderfully supportive community. I have one close family member that was forced into rehab & has been fully in recovery some time now. I think it doesn't work for most if they don't go into it wanting help, but there are real exceptions. Another alcoholic in my life (my RAH) hired a live-in sober companion for 30 days. Interventions are available for sober companions just like for other rehab programs. That may be an option if you cannot get a court order to get him into a rehab facility. The SC was very helpful for my RAH & our family, but if you go that route just make sure you fully investigate whomever you hire. For us it was just a fraction of the cost of having him go to a 30 day rehab facility (which we had tried in the past) & he got a lot more one-on-one counseling that was specifically tailored to his needs. I hope you find what works for you & your family. Hugs.

Florence

I highly recommend individual counseling and an Al-Anon-like group, if not Al-Anon, FOR YOURSELF. I wasn't able to find a meeting, so I used SR heavily while attending counseling. It helps to have a place to get perspective, education, and make plans.

Just remember you don't have to do it all at once. You have time to educate yourself and plan your moves.

Organizations like Hazelden also have libraries of information for addicts and their families. They might be able to consult as well.

You need support no matter what your son and husband want to do.

FeelingGreat

LTH, just something else that occurred to me. You've been staying away from the transplant community through fear of your son not qualifying for another liver, but the situation has gone well beyond that now.

My thought was: are there counselling resources within the transplant area you or your son could use? He is an addict now, but prior to that he went through a long period of illness and waiting for an organ, and may have an untreated mental health issue that would be best treated by people who understand his experience, emotionally and medically. I'm sure you've thought of this as well. There may also be counselling for you that can help you decide your best course. As you've correctly pointed out, you don't have some of the 'tough love' options open to other parents.

You sound like a very wise, steady couple who are caught in a bad situation.

Sasha4

I completely agree, could not have said it better myself.
In the UK, transplants are given in some cases of addiction.
The only one that springs to mind is a famous footballer, George Best and there should be plenty to read about him on line. He eventually died although he was a lot older.

It is such a sad situation for your family and your son.
Your son must be experiencing so many different emotions.
I don't know how I would have felt if I was told in my teens, drinking was not an option for me, even though now I know I never want to drink again.
For many teens it is part and parcel of becoming an adult.
Whether that is right or not is not the issue.
The issue is he has to be affected by this on some level.

I'm still wishing you the best xx

redatlanta

This is why we say that addiction is a disease of the family. You aren't the addict, but your marriage suffers over the division between your husband and yourself over your sons addiction and what his behavior has done to you.

Nobody knows what your son would do if he were cut off. And its true he may die, but he also may die while you are paying to support him and manage his addiction.

Because your son has not been diagnosed with a mental illness not sure your path for "Conservatorship" is going to work. Sadly, one of the problems of not disclosing his addiction to his doctors is that you have nothing to back you up. Certainly seek an attorneys advice but I am not sure you will be able to do this. What you might be able to do is Baker Act or Marchman Act (these are both Florida Statutes) him into a detox facility. I think almost every state has a procedure by which to do this.

I have to concur with the others here that seldom will a rehab work if the person does not want to go. Committing someone is hard, but not impossible. I believe though that the period of time of commitment is only 3 days - might be longer with the Marchman type act. What I am pretty sure you will need is support from his medical community and documentation before the Court will be willing to do this.

My husband at 38 drank himself into a 30 day coma in ICU and barely survived. He had been told to quit and would not. After he got out he picked up and did it all over again about 60 days later. That is when he decided enough was enough and at that time not only was about to lose his life but had lost everything else too. Some bottoms are very deep. I think of myself at 21 with no sense of mortality - that is a hard age to deal with.

I hope that you will look into Al Anon - you need the support and the tools to get through this. I hope your husband will as well. He seems to be more committed to managing the disease than you - it never works. Not ever.

I am so sorry this has happened to your family. I pray that you get the proper guidance in how to deal with this with your husband to make the decisions that will heal you both. Lots of ((((hugs)))).

lovetohikect

Thank you so much again for your replies and support. The comment about my husband "thinking he can manage" our son's addiction really hit home... I think in his heart of hearts, my husband is still hoping and praying for some kind of a "normal" outcome, and he's worried that taking steps towards hospitalization or legal proceedings will cut off that chance forever. (This is also the reason we have never contacted law enforcement, even as he has stolen thousands of dollars from us and his siblings.) As I am sure so many parents here have experienced, it is such a sad and upsetting experience, to have a situation devolve and degenerate in this way, and always to be wondering and worrying about the future. We started off with so many high hopes for this boy, and his childhood and youth showed such promise, and accepting that the future we expected will never come is... hard.

We have reached out to the transplant community for targeted mental health care, but the results have been disappointing. We were able to connect last fall with a therapist assigned to the transplant (tx) unit at a hospital where our son receives care from time to time (it's where he takes most of his "drug vacations") but our son became very threatened because it seemed as if this therapist might be honing in on some of his real issues and behaviors. We have also tried to connect with the hospital that did his original tx, even though it's two hours away from here, and although the social worker is sympathetic and hears me out, she insists there is nothing she can do.

I find it very surprising... so many people who need new livers, do so because of substance issues (they wind up with cirrhosis or other liver damage, or hep C) but this particular unit seems to mostly be a "volume" practice with comparatively little attention to after-care.

I have also reached out to some of the other doctors involved in his care (his hepatologist, gastroenterologist, hematologist) but feel wary about sharing too many details about his substance abuse. I feel that I will need to get my husband "on board" with the idea of confiding in them, because it really is starting to look as if our son will destroy his new liver, and if he is denied a new one because of his substance abuse, you know whose "fault" that will be, sadly enough.

As I had mentioned above, I have moved my son into a sublet "share" for the months of June and July, and I cannot tell you how much relief I feel at just not having him here. The cost of the share is my "vacation" for this summer but you know what, it IS a vacation! Even if I don't go anywhere!

Oh and one final thought, yes, thank you for the reference to Al-Anon. I know there are many meetings in our area and my "job" for next week will be to find and attend at least one of them. (I have in the past attended NAMI meetings and found them somewhat helpful although not really in a practical sense.)

Florence

Sadly, this seems to be the approach to mental health care in general, and to addiction services especially. There's a lot out there, but it's hard to access and harder to pay for.

hopeful4

I don't think you will ever find real support in the medical community without being totally honest. It seems that all of you back away when someone gets to the truth of things. You are wanting help from people who you are not telling them the situation to.

I am not being critical, just making an observation. Looking for help like that has to be frustrating as it seems you want someone to guess what's wrong w/out giving them the guidance they need to do so.

I am glad you have moved your son out and given yourself a break. Also very happy you are looking into Alanon. You will get wonderful support there, as you will here.

My heart hurts for you. You and your family are in my prayers.