My son called to tell me the liver clinic threw him out finally.

Discussion in 'Parent Emeritus' started by Copabanana, Sep 26, 2015.

  1. Copabanana

    Copabanana Well-Known Member

    My son has been followed by a University Liver Transplant Clinic since he was 20. He has Hepatitis B which he acquired at birth. We learned of it when he was 20.

    He just called to tell me what a Fxxk up he was. I waited. He told me that he had been terminated as a patient. They went as far as they could for him. He missed 4 appointments. And on his last appointment, he did not go because it was the day he expected worldwide calamities to occur.

    He calls and acts like the victim. Do I think they will ever change their mind?

    I am sick. I did everything I could think of to prevail on him to hold as important that connection.

    I responded, what is it that you want me to say or do J, that I have not?

    He said goodbye and hung up.

    He called back a few minutes later. Well, now you won't want to talk to me again for 4 months or so. What a martyr.

    I answered, I don't know what you want to hear from me. Today I went to the liver foundation to find support for myself, because I have a child who does not care for his health. I saw how sick the people are and how much they yearn for treatment. I forced myself to ask for help, knowing that there is a strong chance I will have to care for you as you weaken. And there is nothing I can do.

    What do you want from me? You are an adult. You determine your treatment. I get that. But you could have protected the relationship with the University Clinic. You chose not to.

    At the very least you could have protected me.

    You knew how important it was to me. This is personal. You could not find it in you to do that one thing, knowing how I felt, knowing how much I worry. You could not find the love for me, to do that one thing. How much hatred you must have for me. To not do that one thing.

    I am devastated. I do not want to talk to him or see him again. There has to be a a line drawn where a mother can say no more. I do not want to go down this road with you any more. I am there.

    I am sick at heart.
  2. Feeling Sad

    Feeling Sad Active Member

    Copa. I am so very sorry. I can't even imagine how you are feeling.

    You have been so brave and fought so tirelessly for your son. Your heart must be breaking.

    Yes, your son missed the appointments. He missed the last one because of his fear of an impending earthquake. You knew that the fear was false, but to him, it was very real. I am not excusing him. He missed 4 appointments. I forgot the other reasons. Did he start a fight one time?

    Do you think he made reasons to miss the appointments or was he truly afraid that there was going to be an earthquake? It was not my son, being just stubborn to not see a doctor. He thought that he would somehow die if he did. Or not be able to come back home. I will never know what his voices or delusions told him.

    Is there a way to talk to someone at the clinic and explain that it was your son's psychological state that prevented him from going? A hospital would surely understand that. You have medical records, I.E.P's, and psychological evaluations to back you up. His legal rights need to be protected. The hospital has social workers. Contact them on Monday.

    I know that you are mad. You have every right to be mad. Can I be mad at my son? Was it my son or his psychological state? Your son's irrational fears were stronger than his fears of the disease. That is what I meant by saying that, hopefully, he would get to a point that his fear of his disease would override his fear of possible disasters, or rather, perceived disasters.

    Threat override control, or T.C.O., is when their fear of something imaginary overrides their good sense. My ill son's fear of going to the doctor overrode his common sense not to kill his mother. That is why he held a jagged bottle to my throat.

    Your son is not trying to cause you pain. He is petrified of his perceived disasters and conspiracies.

    Please talk to a Social worker at the hospital where he missed his appointments. He still has legal rights. His mental illness should not preclude his right to getting his liver treated.
  3. Copabanana

    Copabanana Well-Known Member

    You are right Feeling. I will call the social worker at the hospital.

    They are very mean to me at the clinic. They have blamed me saying, "if it is so important to you, why didn't you see that he got here." The manager said that last time I called to advocate for him, I reminded her that he is mentally ill. She answered he had already missed 4 appointments and any other patient they would have dismissed after 3 misses. They know he is mentally ill.

    Or the first time we went, we went on the train, and 8 hour trip back and forth. This was the first time we knew that his liver enzymes had spiked.

    This time it was not his fault. We had not received the voice mail that they had left on the phone, about his appointment. So, we both missed the first one.

    The head of the department was his doctor. A woman about my age or older. My son was sullen. Borderline disrespectful. He was terrified. She felt put upon she said because she had made a special trip for that missed appointment.

    She screamed at me. She could not scream at my son, the patient. So she screamed at me. She accused me for his missing the appointment. The resident that was with her, observing, I will never forget how appalled he was. I will never forget his face. I am a medical professional. I know how wrong she was.

    They asked me to leave. I went to the waiting room. I cried. When my son came out he stormed off. Alone I walked down the avenues in the fog until I got to an Italian restaurant/cafe. I sat in a booth alone drinking wine and crying. I could care less what the other patrons thought as the restaurant filled up. I sobbed until I got to the motel near the beach where we knew the owners. I sobbed to my mother on the phone who was still living then. She would not die until 5 years later.

    I cannot call that clinic again. It is a good idea about the social worker. I will do that on Monday. My son receives SSI for mental illness. He acquired his disease from his mother who was a drug addict and who died of AIDS. It is too much for a young person to bear. Any young person. My son must hate himself that he bears his birth parents' stigma. I understand that.

    There is a point where one cannot bear the agony and the fear anymore. I feel ashamed telling you that, who has borne so much that was intolerable, for so long.

    I still feel my son could have protected me. If he could not protect himself, he should have protected me. He could have canceled that appointment. If he felt unable to go, he could have canceled it. Or he could have told me to cancel it. My son, conspiracy theories or not, is not psychotic.

    When he first told me that he was considering not going, afraid, I told him I would call the hospital and cancel. Then I rethought, and realized it was his business to handle it.

    And when he called back, I told him that I was sorry to butt in and he should handle it as he chooses.

    Maybe I feel it is my fault.

    The day before the appointment he said he was going. Oh well. There are other liver clinics in other cities I guess, if he ever decides he wants treatment.

    Thank you for answering me, Feeling.

    Last edited: Sep 26, 2015
  4. Feeling Sad

    Feeling Sad Active Member

    You are not wrong in anything. Not one thing.

    Yes, he should have canceled it. Maybe he thought they would ask him why. Would he feel embarrassed to say because there was going to be an earthquake?

    Yes, he needs to take charge. But, he is dragging you down with him. You are a wonderful mom. He even told you that he would never changed that if he had a chance.

    Yes, you have the perfect right to be mad. It seems such a basic request. You are even protecting him from your illness. I understand why.

    He could have a lot of reasonable fears and feeling of stigma attached to his illness and what caused it.

    He also holds very unrealistic fears of perceived disasters and conspiracies.

    You both are hurting so much. It is nobody's fault. The part that he can control is his fault. But people internalized and attach a lot of perceived stigma and fear to an illness. He is young and is facing something scary and unknown for even the most mentally healthy young adult.

    I know grown men who, when faced with a serious illness, prefer to pretend it is less serious and do not seek treatment. They are afraid of the truth.

    You are both victims and both hurting.
  5. Feeling Sad

    Feeling Sad Active Member

    None of this is your fault. You are trying to have him take care of it. He is an adult. You are not responsible to call to cancel for him.

    On that first missed appointment that you took a train 8 hours to be there, that is on them if they did not take this fact into consideration. Did they leave a message before you left or during your trip? If during, then you should be telling them that it was there fault. Plus, your lost train charges and time.

    Yes, I know that your son is not psychotic, but his unreasonable fears caused him to miss his most recent appointment.

    The social worker might be able to help. Maybe, he or she could go with him. that he will arrive. I am sure that they have dealt with similar issues before.
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  6. Copabanana

    Copabanana Well-Known Member

    It is not fair that I do everything humanly possible to persuade him and support him. And he does the opposite. And I am helpless. Watching.

    How many miserable days and weeks have I had? He is not responsible for those. I am. But then, on top of it, to be the receptacle of "woe is me..." from him. It is just too much, I say.

    And then there is a consequence. And he complains to me. He plays the victim to me.

    That is just not fair. I am tiring myself out with this. I am going to sleep, Feeling. It is already late for you, too.

    Thank you, again. I am worn out.

  7. Feeling Sad

    Feeling Sad Active Member

    You are right to be very mad. He needs to feel that right now. His actions caused him to be kicked out. Try to sleep. You cannot always be strong and bounce back. I get that.

    Take care.
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Oh, copa, I just first read this Sorry and sad for you doesnt even begin to cover it. I wish I had great insight, but I think the other ladies covered it as well as I could. He seems overly invested in his delusions and uncaring anout his disease. And he is fearful enough of his delusions that he wont take care of himself or you.

    It is not personal. It is his fear of his delusions that drive him. It is unfortunate that we cant help our mentally ill loved ones legally. Makes me angry. Sad even more for you.

    I feel you have done all you can. If he wants treatment other places will treat him. What he needs going along with liver treatment is psychiatric care for the power of his delusions. But you cant force it.

    Hugs and warm thoughts for you. Remember to be good to yourself. You did your very best. Its up to your son now.
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  9. Scent of Cedar *

    Scent of Cedar * Well-Known Member

    That is a great idea.

    I am going to suggest that to my daughter.

    But Copa, you could give son the phone number. You could call the Social Worker for information and support for yourself in learning how to help your child...but I think it will be best to give son the number and have him call for himself.

    You could even tell son you have spoken to the Social Worker, and that she is expecting his call, but that you believe it is important for him to take charge of himself, and that you believe calling the Social Worker himself is the best first step he could take.

    And you could explain that is why you decided not to call, for him.

    After the beating in which she sustained injury to her brain, daughter was told by a female nurse practitioner: "Well, if you don't want to have problems with your brain, don't let people kick you in the head."

    There are arrogant people in every profession, Copa. Something about the patient's powerlessness, and about the patient's isolation when the professional is assessing him or her, calls that out in some people. It is wrong every time it happens. These "professionals" should not be working with vulnerable people (or with their mothers) in any capacity.

    The person who treated you that way was wrong.

    Whatever our professions, there are those professionals who practice with empathy and compassion and courage. And there are those who don't. How they expect us to somehow pull ourselves together and follow all the usual rules governing social interaction when we are battling for our lives, or for our children's lives, I don't understand. But I do know arrogance on the part of a helping professional is not helpful.

    It sounds like you got one of those.


    You had enough to deal with already, without being abused by someone who is being paid to help you, and to help you learn how to help your child.

    It is not too late to contact Customer Service and report what happened. It is not too late to tell the hospital Social Worker about what happened, and about how that may have affected your son as regards why he is afraid to be seen by medical professionals for his illness, now.

    That is what daughter did.

    We are not powerless.

    But I never once thought about telling daughter to contact a Medical Social Worker regarding what happened.

    Daughter's problems are ongoing. I will share this information about contacting a Medical Social Worker with her, today.


    You could explain to son that his health is too important to you to have it become an issue between you. You could tell him that you would be scared too; that you understand he is scared but that it isn't going to help either of you for him to make his illness or treatment a fight between you and him. You could tell him this is the reason you are turning responsibility for his illness over to him. I love it that you told him you have accessed support for yourself, to help you know how to help both you and him cope with the pain and confusion and fear surrounding his diagnosis.

    Give him the Social Worker's number, Copa. Tell him you've talked to her but that he will need to call, or not call her, himself, so he can step bravely into learning to face his illness and what is required to keep him as healthy as possible until Science catches up and a cure is found.

    I agree that this is the way to present it to your son. He will be less afraid for himself if he has someone to protect. This will take time, Copa. You have taken the first steps, in that you did not cancel the appointment for him. That took courage Copa, but you did it.

    Your son is afraid, too.

    Nothing about this is easy or right. But unless your son takes charge of himself, he will continue to fight with you; he will continue to see you as demanding, nagging, forever disappointed and then he will not have to see the severity of his illness.

    I know you see that, Copa.

    He is only 26.

    They can make organs now with 3 D printers. Did you know that? They have done it. They are learning how to figure viruses out. There is no telling Copa, what medical advances are just around the corner. Have you presented the facts in that light to your son? That if he keeps himself as healthy as possible for the next ten years, there is no telling what will be possible for him?

    That would be most helpful, I think Copa.

    He is scared, and has developed a pattern of fighting with you so you can carry his fear. He runs from you instead of his illness; becomes angry with you instead of himself, I think Copa.

    I would be scared, too. If I were Son I would be scared, and if I were his mom I would be scared, too.

    It's okay to be afraid. When we don't know a way to go, or when the way we chose to go isn't working, then we need to rethink it. We try another way.

    That is what you are doing, now.

    I know it doesn't feel like it Copa, but you are doing just fine. We are their mothers. As they are adults, the one power we do have is in helping the kids see themselves as powerful actors in their own lives.

    That, we can do.


    This was a test, Copa. Your son did not believe you would take yourself out of this game where he reacts to you instead of to his very serious illness. For his own sake Copa, son needs to know he is strong enough to face what is.

    He is learning how to do this, too.

    Find him the number, but let him call the hospital. Tell him you love him because that is true. Tell him you want to know how he is, who he calls, how he handles it, what they said.

    Tell him you believe in him.

    Tell him you feel so much better now that you have accessed the support system for his diagnosis, and suggest he explore that site, too.

    I had to learn to say: "Oh, no! I am so sorry that happened to you." (Or, "You should not have been treated like that.") "What do you think you will do?" I had to write my words down, so I would not panic when I needed to say them and forget what I meant to say.

    "I love you. What do you think you should do?"

    That is how I dealt with my fear, and my horror, over what was happening to my child.

    And she picked herself up and saw herself differently. And that is what matters, Copa. How they see themselves as they approach a bureaucratic system that holds the power of life and death over them.

    Call the hospital social worker Copa, explain the situation, tell her you are not going to call for your son, that you are going to let him call. She will know further support resources in your area.

    But I would encourage Son to call the Social Worker for himself.

    Let him make that good decision and learn to be strong and proactive in the face of his illness, Copa. It will give him a sense of control.

    I am glad you found a support site specific to parents of children suffering the illness your son has been diagnosed with.

    What a great idea that was, Feeling Sad.

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  10. TerryJ2

    TerryJ2 Well-Known Member

    Oh, copa. No words.
    I can just feel the pain in my gut.
    And I want to smack that doctor.
    (Glad that the intern was shocked, though.)
    People don't "get" mental illness. I'm speechless.
    I would have gone to that Italian restaurant and cried, too. It's safe, it's close.
    Many warm, gentle hugs.
  11. Childofmine

    Childofmine one day at a time

    I'm sorry Copa. It is so hard to sit and watch them do one more thing, 10 more things, to dig their own hole deeper.

    To sit and listen to this brings on the worst kind of despair.

    We want something...take some kind of action...because doing something provides a focus for the helplessness we feel.

    Sitting with that helplessness is very hard to do. Very hard.

    That is why for so many years we take that one more action. Because we can't stand not to.

    Kindly and gently, I suggest that calling the social worker just engages you more in a battle you can't win. A battle you really can't even influence.

    If he regrets his choice, he can call the social worker and plead his case. If they agree, then he has skin in the game. He has made something happen for himself.

    You do it and it's your skin, not his. And once again,nothing changes if nothing changes.

    I can imagine how scared you are for him and his health. I have felt that way too about Difficult Child.

    If you can, use your energy around this to feel your feelings, every last bitter one of them. Let them flow through you and flood you. They will not kill you and they will dissipate in a matter of hours or days. On the other side is healing. Healing for you and more acceptance of what is.

    We cannot live another person's life for them. We want to so badly, so desperately, but we can't. It just never works.

    What he does or doesn't do is not about you at all. It is all about him. He will do whatever he does until he doesn't. You're not in this game.

    It took him a long time to walk into the forest. It is going to take the same long time for him to walk out, once he begins. Calling that social worker himself, if given the chance, might be a first step for him.

    I am truly sorry. I pray you can continue to move toward peace, contentment and serenity by letting go of this situation as much as you are able to.

    Warm hugs today.
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  12. Copabanana

    Copabanana Well-Known Member

    Thank you all for responding. My brain is thinking better but my heart is still broken.

    I realized when I got up that the urgency we felt to have that particular University Liver Clinic is not necessary. If he only had governmental medical insurance, that would be the only place he could probably go.

    But a year ago, when he was turning 26, I petitioned to my retirement, to continue his medical coverage on my plan, because he was disabled and proved it by virtue of his SSI and a letter from the psychiatric nurse practitioner that follows him in the Big City where we once lived. As long as I live, every 5 years I will have to get it re-approved. But there exists that possibility. I have Cadillac insurance. He could probably go to any Hepatologist in the Country. I will not tell him that, for now.

    He needs to confront what he has done, so that he can come to see treatment as something he values, to be protected. He needs to find that place in himself.

    He did ask me if I felt there was anything he could do to change their minds at the clinic. I said, well you could see Dr. B, maybe he could help. (Dr. B is the Child Psychiatrist we saw from the time he was in 6th grade until he was 21. And occasionally thereafter, in crisis.)

    So he does have one step he can take.

    Even though knowing there may be medical alternatives has taken away the realistic bite of this, I know now there are solutions, the emotional devastation is still here.

    I think it is because it is all of a piece: To know how truly vulnerable one is...with no control what so a horribly devastating place to be. To just know that you can feel this if mortally injured, is a place no one needs to go. I think that is why I have not recovered from the death of my mother. To learn that you can hurt so so felled by something that this person fears she will never, ever recover from.

    Those who have, I admire. I am wondering if I have the stamina to recover.
    Many of my son's psychiatric symptoms developed after he got the diagnosis for his liver. I believe that he is deflecting his fears outwards onto other things, such as earthquakes, or his concern about possible balding (not).
    I agree, Serenity. Perhaps he will call the Psychiatrist.
    That is true. Thank you.
    The physician is head of the Department and Clinic. She is probably untouchable. And I would be afraid. She and my son did make a good relationship. He calls her "Marion." I call her bitxh. Sorry, it slipped out.
    This is so true. This is exactly the tack I will take.

    Except the problem is as much me. I am the patient too. I do not know how to recover my strength and stamina, when I feel myself a punching bag. And it seems I cannot get myself out of the ring. Remember what M told me last week: You are like a boxer who is fighting the boxing match outside of the ring and outside of the arena. What chance do you think you have of winning?
    Yes. That is exactly how it is now.

    I have been trying to take myself out of it. That phone call last night put me right back into it. I felt such a blow to my gut, I reacted. I could not remember I was supposed to be out of it. I had no detachment what so ever. I am a poor pupil.
    Yes. If he can get me to panic, he does not have to. He puts the affect and responsibility in me. I have managed to get myself out of the game, with the responsibility. Not with the affect.
    I agree, COM. I am wondering if it is even good for me to talk to him about the social worker. Because it will mean that I will be hoping for an outcome...having set up the possible solution...and waiting, breathless for him to do it...a repetition of all of the other times. He has the power to do it or not. And it is power over me...more than in himself.

    The thing is, until he is willing to seek and to accept treatment, what good does any of it do? To have this liver clinic or any other...means nothing if he does not comply.

    A couple of months ago when I had learned that there is now a cure for Hep C, I googled cures for Hep B. While there is not yet felt to be a cure, (the antivirals kill the virus but not the underlying disease) there are physicians in Australia, I think it is, that are giving a "cocktail" the antivirals combined with a very common cancer drug. Almost all of all of their patients have serio-converted. They seem cured.

    I told my son and he reacted aggressively. He said he would never ever take a cancer drug. His mental illness very much clouds his judgment. He cannot see or feel his virus as a threat. He sees the remedy as such.

    There is no role in this for me. Not one part. Except to lovingly put all responsibility back to him.

    I do not know if I have the strength to do the right thing. As much, I fear I do not have the strength to recover from this place where I am. Every time, I get pushed back, I feel more defeated, not stronger. I need to find a way to turn that around.

    Thank you again for your care and your excellent counsel. I will do my best.

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    Last edited: Sep 27, 2015
  13. pasajes4

    pasajes4 Well-Known Member

    Copa, I could kick myself in the *$$ for not making this connection. I have a good friend how is a nurse on the transplant floor of a hospital that specializes in liver and kidney transplants. He has mentioned on many occasions that when a liver patients enzyme levels are out of kilter that they become delusional and at times aggressive not to mention extremely paranoid. Post transplant totally different people.

    My 66 year old brother was diagnosed as a paranoid schizophrenic many years ago. Fast forward and he was diagnosed with hepatitis that had gone untreated for sometime. He began treatment. When the liver enzymes leveled out he was no longer having delusions.

    People that have damaged livers from drinking become delusional.
  14. Lil

    Lil Well-Known Member

    Oh Copa...I am so sorry. I know you've worried so much about his health and his refusal to seek treatment.

    I know exactly what this is about. I play around on youtube at work and sometimes look at these crazy conspiracy theory videos. I ran across one the other day and it was exactly this. Basically, the beginning of the end of the world. In fact, it was all very convincing and kind of creepy, showing all these things linked together. If they hadn't brought Reptillians into it, I would have been pretty creeped out and I don't place any stock whatsoever in "end times" prophecy. I asked Jabber the other day, "What do you think people who actually believe this stuff do? Do they just quit their jobs believing the world is about to end?"

    I guess now I have my answer. I am so sorry he buys into these theories. It must be so crippling to live your life taking this stuff seriously.

    You are right that there are other places he can go...or he can call the social worker or that doctor - or you can call first and explain. Given the attitude of the doctor you mentioned before...I wouldn't want to go back there anyway! He needs a facility that understands his special needs. He is not the normal non-compliant patient. In a very real way, he cannot control this.

    There are options. This isn't the end.

    How could you not be back in the middle? You've been so worried about his health, of course you are in a panic about it all. This is completely understandable. You should give yourself a break on this one. (Hug)
  15. Copabanana

    Copabanana Well-Known Member

    Thank you for this PASA. Except what am I to do? I cannot control him. Even getting a medical conservatorship, he would undermine everything. I have accepted this. It is like the chicken or egg. As long as he is paranoid and believes the conspiracies more than he fears the illness, it will remain the same.

    I do not know what to do. I cannot control him. I cannot cure him. He wants one hundred per cent control until something bad happens, and he then wants me to take responsibility.

    He has to find the solution in himself. He believes the conspiracy theories are real. He is non-negotiable on this. I had hope that when this or that calamity did not happen, he would begin to question. No. He goes on to a new calamity. Because he needs the theory.
    Yes, Lil, this is true.

    My problem is that I have not been successful in getting him to go. He goes when he wants to. He seems worse and worse with his conspiracies. I hope that it does not mean that he will have to become seriously symptomatic before he takes his liver seriously

    Thank you all.

  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    If delusions are a part of wacky enzymes in the liver, what kind of medical professionals are they not to expect them and to try to work with patients who have a disease that may be the cause of their irresponsibility? That makes no sense.
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  17. Copabanana

    Copabanana Well-Known Member

    How rational is this response, Serenity. How irrational is my total situation.
  18. pasajes4

    pasajes4 Well-Known Member

    Some doctors do get it. I don't think that a lot of psychiatrists do complete medical work ups before they start prescribing medications. I had to beg for a medical work up for my son in order to check medication levels. I am not a doctor. I just find it thought provoking that there might be a connection.
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  19. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I wouldn't feel too bad about letting that clinic go if they do not take that into consideration, Copa. Makes me doubt their expertise. At the very least, they are goofing up dealing with your son who has elevated liver enzymes. They don't have tolerance and kindness and every patient of a serious illness needs that. No wonder your son doesn't like going. Maybe he'd do better with more compassionate care?
  20. Tanya M

    Tanya M Living with an attitude of gratitude Staff Member

    :group-hug::group-hug:Oh Copa,
    I am so sorry.

    What horrible people. Seriously, what are you supposed to do Hog-tie him to get him there?? It is absolutely not your fault, they are just plain wrong.
    Your son made a conscious choice to not go or at the very least to call and cancel.

    No, it's not. It's so heartbreaking to do everything we can think of to try and save our children only to have them throw it all away.

    Yes he does. I know how much you want him to "get it" to finally start making smarter choices. That's when we have to just take a deep breath and as we exhale and let it go, we must do the same with our Difficult Child.

    I agree with giving the hospital social worker a call. Hopefully they can offer a suggestion.

    Hang in there Copa.