The hospital has social workers. Contact them on Monday.
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.
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.
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.
Yuck.
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 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.
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.
http://www.cnn.com/2014/04/03/tech/innovation/3-d-printing-human-organs/
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.
:O)
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.
Cedar