The Elephant in the Room

[gsingjane]

I guess this post is addressed to parents of addicts and to the parents of other difficult child's who engage in life-threatening behaviors, more than to all parents.

The elephant in the room, in our dealing with our son, is the fact that he may die. In our particular situation, this is not academic. We don't know, we can't know, how real a possibility it is, but we do know that his life expectancy is not that of other people. We know that, because he's had a major organ transplant, and is on immune-suppressing drugs, that he will get some form of cancer, sooner or later. We also know that he did not recover anywhere near a full state of health after his transplant, and that he continues afflicted with another disease that, while not life-threatening, makes him ill and debilitated all the time and will probably also shorten his lifespan. We have heard that the organ he received may already be failing, although we're not sure this is entirely accurate.

We know all this, yet... he's mad, bad, and dangerous to be around. We can't be with him, we can't permit him in our home or really in our lives, because he is a compulsive thief. I've talked about his behavior here before, but he has blatantly stolen thousands and thousands of dollars from us. He has identity-thefted my husband and his own brother. He has come to our house when he knew we wouldn't be here to search for checks and cash; he tried the same thing at my parents' and was only stopped by an observant neighbor; he comes to my husband's office and roots through his desk and briefcase. He victimized his poor former girlfriend so thoroughly that she dropped out of college and moved back to California to live with her parents (among other things, he stole and pawned her diamond tennis bracelet which was a special graduation gift from her parents, and then sat back calmly and watched for months as she frantically searched for it.) He has forged checks, stolen credit cards, stolen credit card numbers, taken out loans in our name without telling us, and otherwise financially and emotionally victimized us, times without count. At the very moment that he was weeping and begging my forgiveness, he was stealing from my pocketbook. Needless to say, he continually lies about his medical status and his need for funds to pay for procedures, co-pays and medicines. He shows up at my husband's office, routinely, and demands cash to pay "emergency" medical bills, but will never provide a receipt or other proof that's what it was actually used for. When he lived with us, I don't think there was ever a single nickel that didn't eventually walk (and, yes, of course he stole babysitting, birthday, and other sibling money without restraint or scruple).

And yet, and yet. My rage at him and what he's done to all our lives, is tempered by pity. I know he's sick (mentally and physically), and I know that at least some of the time, he's felt driven by impulses he didn't have the strength to resist. In this way, he is exactly like an addict. What do you do with the fact that you can't have someone in your life, even a little bit, but you also know that his days are numbered? I know that it isn't the money (if he were a easy child, we'd probably be spending close to the same amount on him, just to try and keep him functioning and comfortable), it's the love and trust that he's rejecting, by his actions. My fear is the regret. My fear is, all the days and months I have refused to speak with him, to have anything to do with him... when he's gone, will I be sorry? Life is NOT infinite, even for the healthiest and luckiest among us. Where do I go with the fact that I can't live with him, but someday every chance will be gone?

 

[pasajes4]

Heartbreaking. It is difficult to detach, show love, and protect ourselves from the chaos of our childrens choices.

 

[dstc_99]

It is the Elephant isn't it. Even without all the medical issues we all feel the same way. We want them happy and healthy and home or atleast nearby so we can love them. Problem is loving them is sooooo dang hard. I am missing out on half of my daughters senior year and every bit of it is killing me. On the other hand our home is so much better now.

 

[buddy]

If you chose to interact more, would it be the kind of interaction you think you will regret not having and miss?
Don't know if that makes sense, but I'm wondering if you even have that choice. Sounds like he doesn't ever choose to interact in a nice way so it's maybe out of your hands anyway?

I'm so sorry, it sounds so awful. He's been thru so much. He is really missing out on a great family.

 

[SuZir]

What a sorrowful tale. You are loosing your firstborn to long, cruelling illness (and by that, I mean both physical and mental) and not only that, you are loosing the good memories you most likely have from his younger years and love you feel for him. It's so hopeless situation. And it is hopeless for him too. Nothing can make him feel good and he simply doesn't have the skills to handle his own situation. He sounds like a miserable person. Very hurtful to others but also to himself. But you have to protect yourself and your other children. And let's face it, there is nothing you could do that could make him feel even tiny bit better. All you can do, is protect yourself and his siblings and mourn loosing your oldest again and again till you loose him for death. Maybe then you can again remember also few good days from older times.

I'm so sorry for you.

 

[scent of cedar]

It's impossible to function over the pain in our lives.

And yet, we do.

My heart goes out to you.

Barbara

 

[BusynMember]

I can speak a little bit from experience here. Although I did not have a sick child, I had a sick husband. At age 27, right after our marriage we found out he had a very rare but hereditary condition that his father had died from at 46. Until then we had not even known his father's condition had been hereditary or it's name. I was a new bride and devestated and waited while he had both of his adrenal glands and his thyroid removed. The adrenal glands had huge tumors on both of them, although they were benign. The thyroid had slow growing cancer, but when they did tests to see if the cancer was completely gone, he tested as though it were still there somewhere...too small to see but waiting to come back. He had to take serious medication and still does. You can't function without adrenal glands or a t hyroid. He has other marks of this syndrome as well...pigeon lungs, an enlarged heart, you name it. He was a very verbally abusive man. I never ever spoke back to him because he was sick. He would often bring up he won't live a normal life span and I felt that because he was sick, I had to be nice to him, no matter how horrible he was to me or our children. It pretty much beat up my soul, if you know what I mean. I had severe mental health issues of my own, and the constant belittling and withholding of money and absolute control he held over me just made me even worse. But I still wouldn't fight his word.

One day I was so beaten up that I went for therapy to try to deal with difficult child husband. It was a group therapy situation and I told everyone how he talked to me, belittled me, refused to give me a dime, made me stay at home all the time, but that I had to be nice to him because he was sick. I immeditally got pelted with feedback from the other women. In a nutshell, as one of them said plainly, "I don't care if he's going to die tomorrow. He has no right to treat you that way and you shouldn't take it." It shocked me t hat anyone would think that I should actually stand up to this man who was so sickly (if you saw him...well, he looked sickly too. His disorder made it impossible for him to gain weight and he looked like the wind could blow him away). Every time I looked at him, I saw death an d would feel terrible and give in. I was so upset by what these women told me, which I felt had to be wrong, that I left in tears and never returned. Yet they were right and I learned that as time went on. Nobody, even if they are that ill, has a right to treat those who love him and want to make his days wonderful, like crapola. Now I do understand that there is a big difference between the bond between a husband/wife and a child. And I don't pretend it would have been just as easy for me to suddenly see the light if this had been one of my children, but the idea is the same. by the way, fate is strange. My ex is now 66 and he still tests positive for cancer cells. He still looks sickly. But he is alive and a lot of people die before 66. Not saying this is your son's case at all, just that fate is very strange. However, ex took very good care of himself. Anyhow, that's going off topic.

You would gladly make those wonderful memories with your son. I'm sure the entire family would love to give him a fabulous life and spend time with him and make the quality of his life great because they love him. There is nothing you can do if he won't accept that love and is destructive to those who have helped him and want to keep helping him. You can't just let him destroy everyone else's life and you know that because you have acted on it. Maybe you should keep a journal making sure you put down all your loving attempts to keep him in your life and how he spurned them all so that if something happens later, you can go back and read and be comforted at how hard you tried to give him the kind of life he could have had. Also, be sure to write down what he did that, if allowed, would have destroyed the rest of your family so that you remind yourself that you did the best you could. This child has had the very best from your heart and your pocket book and still gets excellent medical care that he is throwing out the window when he uses recreational drugs, but it's him doing this...not you. Are you in therapy? If so, keep going. It really helped me detach from my ex, who I felt tremendous guilt over. I needed constant reassurance that I wasn't being a biotch to this sick man. In fact, this sick man was taking advantage of and being horrible to me.

I don't know if this helped at all, but I thought I'd share. My ex had a form of the Elephant Man's disease only his tumors formed on the inside, not the outside. It is called multiple endocrine neoplasia type 2.

 

[AppleCori]

Heartbreaking story!

I know that we parents with substance-abusing kids worry about them overdosing or otherwise doing something to cause their early death, so while not the same thing, I can relate a little bit.

(((((hugs)))))

 

[Calamity Jane]

I'm sorry I don't remember, but does he steal to support some kind of habit/addiction, or is it something else?

In any case, he seems to traumatize whomever he is in close contact with, so you do have to protect yourselves. I think the best thing you could do is to always be open to supporting good choices (offering mental health help, etc.) and practice detachment if he refuses. Otherwise, you will be perpetually victimized. It is just so awful but that is the reality of the situation - I am so sorry. It doesn't make you less loving, it makes you seem mature and willing to see things as they really are.

 

[gsingjane]

@ everybody... thank you so much for your kind and thoughtful words. I am sure you could tell that I typed my post this morning through tears...

@ buddy ... you make an excellent point about the quality of the interactions at this stage. You're right that at this point there's nothing about seeing or being with him that would be good.

@ Midwest... yes, I can absolutely identify with your situation with your ex. We do sit back and take incredible amounts of abuse in these situations. It's the pity, and the fear, and the sadness, and "the milk of human kindness" I guess!

@ Calamity - to my knowledge our difficult child isn't an addict on top of everything else. He's repeatedly drug-tested as part of his post-transplant protocol, and also before his tx that was something that got looked at, over and over. It doesn't mean he take care of himself (he doesn't) but I don't think he has a substance problem. His biggest financial problem is that he can't or doesn't make enough money to support himself in the manner in which he'd like to live, but he won't face this reality and do something to change his situation. He has always had extraordinarily expensive tastes and has always been highly resentful toward us that we don't subsidize those tastes, or subsidize them enough to suit him. (He's now 23 by the way.)

It's sort of odd really... husband and I were having one of our marathon talks about this over the weekend, and it's strange but in a way, his being so cruel and hurtful makes his physical illness a bit easier to manage emotionally. If it were one of our other children, who by and large (and certainly by comparison) have been loving and open-hearted, I'd be beside myself with worry and anxiety if they were as physically ill as difficult child. It's almost as if difficult child is on a campaign to make us NOT care about him. When he first got his "bad diagnosis" (in the summer of 2009) I cried all day, every day and I really felt as if my life were over. Now, for whatever reason we do feel less worried and upset about his condition, even though it's worse than it was. I guess that's terrible to admit...

 

[susiestar]

I think the only way you are going to be able to handle this is with the help of a very good therapist and possible a group for parents of children with serious health problems AND alanon/narcanon family groups. Not one of these, but likely 2 or even all 3 of them. I don't have any other advice, because I just don't have any experience with them.

I would only give money to whatever place he owes money. You can call a doctor or hospital or even many pharmacies and pay for a medication over the phone or pay over the computer. NEver do this with him in the room.

I would be tempted, personally, to press charges and have him in jail if possible. That way you would know where he is, he would get medical care there (they have to take care of his problems) and it would be safer than the streets. It would also keep him from further theft of your property and identity, and maybe would break the hold that entitlement has on him. But I am NOT in your situation, and don't know if I would follow through.

 

[recoveringenabler]

i am so very sorry Jane, that is a heartbreaking tale. I can't imagine how horrible this has been for all of you. I understand your dilemma and why you would be questioning yourself. Regret is a terrible emotion to feel, however, in your case, I think you might smooth that out with the knowledge that you did the very best you could. Your son's illness does not remove him from the human race where compassion, honor, empathy and kindness are choices he could make........instead he is choosing cruelty, selfishness, manipulation and entitlement. His could use the time he has to make the world a better place, however, he chooses to bring more darkness and pain to others.

I too have had the thought that my difficult child could die by the choices she makes, she lives a shaky life style at best, but in reality, what can I do? What more could you do? At some point we have to accept what is and recognize there simply is no more we can do, we just do not have that power. What brings me solace on any level is that I know I've done all I can do, and it certainly sounds to me that you have done all you can do. Now it's about accepting that. I believe the acceptance will (hopefully) eliminate any regrets down the road. I also believe that by expressing your fears now and untangling them, you will be in a better place now and in the future, then if you were not aware of your own fears. I believe your fears and feelings are very appropriate to your circumstance, not easy by a long shot, but certainly normal. It's a tough road you're on, no easy answers, but it sounds to me as if you are doing a great job being honest with yourself and making sound decisions. I'm sorry you're having to deal with all of this. (((HUGS))))

 

[1905]

I'm so sorry. 12 years ago I had cancer and thought I was dying. This lasted for a few years, me thinking I'm dying. I was mean to people who loved me, husband, my parents (not my children, they could do no wrong). The reason I was angry and mean is because I didn't want them to miss me. I loved them so much I wanted to make it easy for them when I was gone. I was mad too. Your son seems like this, throwing his hands up, not caring and not wanting you to miss him.Of course you love him and miss him already. I'm just giving you another perspective, maybe I'm wrong. ((HUGS)))

 

[gsingjane]

@ susiestar - I appreciate your good suggestion... will share one thing with you though... it would have been great to be able to share with other parents of kids with serious illnesses. In fact, for quite some time, I was on a yahoo group for parents of kids with my difficult child's exact problem, and we were also active in a foundation that holds a yearly conference, and seeks to raise money for research into his disease. For a while there I was in almost daily email contact with a woman whose adult son has the same medical problem.

It turned out to be an incredibly lonely experience, though, because NOT ONE of the other kids or families involved seemed to have anywhere near the kinds of behavioral or psychological problems as my difficult child. Our difficult child routinely lied, and still lies, about his symptoms, treatments, medications and prognosis. I often found that what I thought I was "sharing" with the other parents was false! How embarrassing was that! It felt to me like pretty much every other family had a lot of solidarity around their child's illness, whereas with us, most of the time we were (and certainly are) completely in the dark about what was happening or, as I say, lied to at every turn. As you probably know, with the HIPPA law, there was never any way we could find out the actual facts around my son, and to this day, we feel that he manipulates or overstates or understates things to us, depending on his other agenda.

Our difficult child is also extraordinarily resistant to our suggesting or even raising the possibility of any particular treatment, lifestyle, etc. From the beginning, it's been "his way or the highway;" he has a relationship with a care team that has taken a specific approach and he's not interested in anything we might have to say. it's irritating to him at best and enraging otherwise. He has wanted us disconnected from his treatment (and his life in general) and that, to me, just seems so different from the attitudes and circumstances of most families with a seriously ill child. This is why I eventually came to feel that I had, in fact, very little in common with other parents in our situation, and why interacting with them came to be a source of more pain, rather than support or nurture.

Having a difficult child is very isolating...

 

[DaisyFace]

Having a difficult child is very isolating...

So very, very true...

(((Hugs)))

 

[recoveringenabler]

Jane, my heart goes out to you, I can truly understand how isolating it is, you really have a unique situation. I hope you feel a sense of real belonging and support here, although we don't have your exact issues, we can certainly have empathy about the lying and manipulations. Geez, I don't know what else to say other then I am really glad you found us and we are here to listen and support you as you go through this with your son. I'm so sorry you are having to go through all of it, your heart must be so heavy..........many, many gentle hugs.............

 

[DammitJanet]

Jane, I dont have your exact situation either but I do have two son's who are in dangerous situations and one who is physically disabled but is now working at a rather dangerous job for a person with his issues. With my youngest son we have always had the fear niggling there that we might lose him far too soon. I mean parents shouldnt lose their kids before them ever but my son just doesnt look right. Now he is climbing 300 feet in the air installing cell phone towers and hanging by ropes. That makes me feel oh so much better...lol.

My middle son went away at 18 to serve in the Marines and let me tell you that was scary. Now he works for the sheriffs dept up near Difficult Child. I just put blinders on and cover my ears going "lalalala" when the news comes on. My kids could die, I know that. Of course any of our kids could die by slipping and falling.

I like the idea one of the other posters suggested for you to keep a journal of all the things you do try to do and then the things your so has done. You dont have to accept bad behavior from anyone even if they are dying. That doesnt give someone a free pass on manipulation and theft. You arent allowed to break the law because you are terminally ill. Actually I wish you were because they do consider bipolar a terminal illness and I could stand to break a few laws myself!

You love your son. He knows it. He seems to only target people he knows wont arrest him. I wonder what would happen if the next time he stole something that was in the misdemeanor category you actually had him arrested? They wouldnt actually send him to jail for any length of time other than the arrest and booking but he would probably get probation. And be made to repay you. That might get his attention.

Is he on disability? He should be. If he is, probation could probably order him to take some sort of financial management classes. Never know.

 

[gsingjane]

@ d.J. - yes, I totally understand... and that's why my initial post went out to all the parents of kids who are at physical risk, whether that's due to what they've chosen to do to themselves, or by circumstance (such as with your two sons).

We have been quite hesitant to have our difficult child arrested thus far, despite having been urged to do so by our bank, and my other son's employer (our difficult child stole and forged our other son's paycheck), and my husband's partners, and by several businesses where our difficult child has made fraudulent charges. I have warned difficult child many, many times that we'll have him arrested if he steals again, but of course after so many instances of not following through, he no longer believes me.

I had two big worries, and I'm sure you'll think one of them is completely ridiculous but... I know that in order to get any kind of professional licensure, or many jobs involving trust such as in a bank or a brokerage, you have to disclose if you were ever arrested. I know it sounds crazy for me to worry about that for him, but I've always felt like, it's hard enough for a young person to succeed these days, without that albatross. (Am I being a real jerk to think he should be "inflicted" on some poor employer from whom he would likely steal? Yes, I sure am.)

The other concern we had was how he would fare in a jail setting. He's very scrawny and ill, takes 30+ pills a day, and our worry was that if he were arrested, he might not have access to medication or at the least would suffer medically.

You can see how he "uses" our concern for him to avoid consequences.

To answer the question about disability, so far as I know, no. He lives in New York City, in a nice apartment that he shares with his girlfriend, and has cobbled together various jobs where he can come and go, and do the work at his discretion, which provide some kind of an income stream. I don't think it's much, but it's enough to pay for Metrocards, and I think his girlfriend pays for most of everything. She is younger than he is, and a full-time college student, and her father supports her. difficult child has about two years of college completed and has made various attempts at finishing or at least taking credits (all of which we've paid for, needless to say) but I don't think he's really made any progress on that at all since 2010. (As a side note, we took out a home equity loan and just yesterday paid off $36,000 in his original student loan debt.) At some point, it's going to start to look really strange for him not to even have an undergrad degree, but there is nothing I can do about that.

Where I think he will wind up going on assistance is when he turns 26 and can no longer stay on my husband's health insurance plan. He has said, before, that his plan is to be in school full-time by then and use their plan, or perhaps the health insurance exchanges will be up and running by then, but there is also a question of how he will eventually support himself. He has been very skillful, at least so far, in finding women who will pay his way, although, again, that won't last forever.

Sorry if that's way too long to answer your question!

 

[BusynMember]

If he gets on disability, he gets Medicare and Medicaid which should cover everything. I wouldn't play around with this since he is so seriously ill. in my opinion he needs to get on disability now.

 

[DaisyFace]

I know that in order to get any kind of professional licensure, or many jobs involving trust such as in a bank or a brokerage, you have to disclose if you were ever arrested. I know it sounds crazy for me to worry about that for him, but I've always felt like, it's hard enough for a young person to succeed these days, without that albatross. (Am I being a real jerk to think he should be "inflicted" on some poor employer from whom he would likely steal? Yes, I sure am.)

gsingjane--

Yes - I this is completely ridiculous....and I think somewhere deep-down you agree that this is ridiculous, too.

But - I think your Mommy-heart is not ready to let go of the vision of the happy and wildly-successful adult that you always dreamed your son would become. I think you are still holding on to the hope that one day he "could be" this or that.

And so you are held hostage by the hope that suddenly he will change....and everything will be OK.

The catch-22, of course, is that by not facing any consequences and having everyone accomodate him all the time - there really is no reason for him to change. The things he is doing are working for him. And he is certainly not sitting anywhere wringing his hands with worry over what his parents want for him.

So sorry your heart is hurting...

(((Hugs)))