Family and Caregiver Schizophrenia Discussion Forum

Adult 21 yr old son diagnosed & I want included in treatment plan

This really sucks, about sums it up. My son is 21, diagnosed Disorganized S. and also has Anosognosia and will not take meds I am angry. This is not what I wanted for his future, who would, but this is the hand we are dealt and we must play it, Some history, he is very religious and speaks directly to God. He is an introvert, an actor, I moved him to a private school when 16 for he was getting lost in the crowd, he started being attacked by demons but knows how to work with them now, thinks the world is going to end, puts his had in front of his face any time I enter the room and I tell myself when he says “get out or go away” that it means I love you. He is up at night, sleeps most of the day, will hide if he hears me entering the a shared space but he always is around to eat my cooking (after I leave the soace), like a mouse finding a piece of cheese. So what have I done? He was not getting out of bed for days. I tricked him into seeing someone after he denied my requests of talking to a counselor. I scheduled an appointment for myself with a Psychiatrist and took him with me. I then shared with the Doctor that he needed the session more than I for he was in critical need for help. The Dr. was not thrilled at all, with my approach but I needed to get him treatment. So they met, proscribed meds and my son didnt like how it felt so stopped taking them. Rinse and repeat with a new drug and still he refuses to take anything. He now sees a counselor connected with the Psychiatrist. I am not thrilled with her for she is not involving me as part of the solution. I had him sign Hippa forms and I scheduled an appointment with her and she said she would not speak to me about him without him present. Even after I jumped through all of the hoops.She told him, he could revoke the Hippa at any time and she spoon fed him the “out” he wanted- this is why I am angry. NO Body knows his story better than I and to cut me out is not a holistic approach to his care. There are many sides to a story, I was baffled that she didnt want to get his history from me that she wouldn’t share his treatment plan or how I could help. Then I question her ability. I trust but verify, I am unsure of her background to know if she is the right person for him. However, I have stepped back, and count the blessing that for now, he is going to counseling so that will need to be enough. (Questuon, should I go through the courts to get legal guardianship? If so, what is my next move.) So moving on, he was alone daily and thank God for COVID, now I can work from home to be close to him. I also moved my family (he is an only child) in with my aging parents in the country where he does listen to them, talks to them and helps them. So this is a silver lining. But they are in denial too. My father says things like go get your son out of bed. What he does not realize that anything I ask is a “get out”. When dad asks him and he will evenrually move. I have my own counselor (who rocks) this is why I am here. The stigma sucks, living with sick adult sucks,. hearing my husbands guilt, blaming himself when he shouldn’t, sucks…you get the point. I want to see him well. I want him to laugh again, he has a great laugh. I really miss him and he is in a room 10 feet away. (Tear break). Lastly, family and friends ask about him. 'Oh, he is figuring things out", I say. “Will get back to school soon”. But when is it okay to tell people who wont judge him that he has a mental illness. That this is really hard and people have no idea the weight of all of this. I am glad I found you for it looks like I am not alone anymore. Thanks for reading.

Welcome and I’m sorry you are here. I would be angry with the doc as well. My son when medicated was ok with me attending his doctor meetings. But is was not counseling. Maybe the doc wants to make sure he feels safe enough to tell her what he is going through. He may think you are something you are not and that you are doing something you are not really doing. My son thought I looked like his mom but I really wasn’t his mother and that I was poisoning him.

Having a loved one with this disease really is horrible. What has it taught me? That the small things don’t matter. You didn’t cause it, you can’t change it but you can cope with it. I got a counselor. It’s helping a little. For me, this has been going on for about 10 years. I used to tell people when they asked about my son, that he had a little hiccup in life but is now back on track (back when he was on meds and working). Now, well, I tell the folks close to me that he is ill and has disorganized thinking. Unfortunately, he is now off meds and lost a good job. I think he’s getting some help with his rent because of covid. I do think he is not doing well at all, but we’re just waiting to see what happens. We are hoping he will need money and I will only give that to him if he goes back on his meds. If he needs food - we will buy him groceries. You may want to read through some other posts as there is a ton of good info here.

ps. You could try sarcosine. It is supposed to help with sz and major depression. You can get it from brain vitaminz. I used to put it in my sons smoothies. Actually the best thing that helped my son was, well the medication (Invega), but also Chinese herbs. He had to get those prescribed by a doc. I use the sarcosine for myself. I just put it in my water. It’s is sweet.

Bless you, Diane! I appreciate your feedback and he loves smoothies. Wishing you well and I hope things turn around for your son.

Excellent that he likes smoothies. They say to start the sarcosine with small doses. I’ve never had an issue and I put a 1/2 tsp in my water almost daily. Many folks on here will recommend that you re Dr. Amador’s book - I’m sick, I don’t need help and learn the LEAP technique to try to get your son to take meds. It makes sense to me but it didn’t work for me (yet). There are several videos of Dr Amador on this site in the discussions as well. Good luck and hang in there! Also - it sounds like your son is going through some scary things, hence the need to avoid you - don’t take it personally.