Thank you, this situation makes me feel horrible. My son is a good person. I’m the only one he has in life and I spend a great deal of time with him. I do everything for him. I go out daily to buy him food or art supplies, or whatever he requests. Then I participate in creating art projects, or playing cards, or however I can keep him occupied. This has been going on for 17 years. He looks to me as Mom, nurse, counselor, and at times I feel girlfriend. It is so unsettling. I sometimes consider suicide. I’m his entire world. It’s completely my fault too!! When he was discharged from the psychiatric hospital they gave me the choice to either have him go to a group home or to stay with me. When he was diagnosed he went berserk and I promised him I’d never leave him so I didn’t. I know I’m not doing the right things for him. I’ve created a plastic bubble for him and when I die he will be he completely unprepared to function in society. I assumed things would work out as time went on but they haven’t. I foolishly squandered time. Thank you for being there. As for the comments I received, I don’t think they meant any harm. I should not have revealed such private details of my life anyway
Just because we hear about others suffering on the news and we think they have it “worse” than we do, it doesn’t somehow lessen or negate our own pain. Your pain is real and you have every right to seek support. Scz is a scary disease that causes our loved one to act irrationally, which can be downright disturbing and frightening. My husband has scz so I have no experience with a child with the disease. But I imagine that if it was me, I would have done as you have done: do everything in my power to try to help. It’s what mamma bears do; we do our best to protect our babies. I hope you are able to find answers for you and your son.
I thought of a couple of things you could do to help your son with recovery. When you go shopping you might take him with you. Once he saw what the procedure is and got used to going to the stores he might go by himself, starting with the art store. Then you could give him a list of 2-3 items to buy at the grocery store and then slowly grow the list.
You might check into art groups or classes in your area he could attend. Maybe there is a Zoom group.
Thanks for this post. It helps me. I’m in the same situation with my son in terms of letting time slide.
My son’s psychiatrist said almost the same thing to me. He used the word “bubble”.
Maybe we need to use this board more to support each other with recovery efforts after meds have quieted psychosis.
I think caregiver1 has some great ideas. I know that when my daughter was 17, the excellent psychiatric hospital she was in wanted her to go to long term hospitalization. I was horrified and torn about the possibility at the same time. I felt like if she was too far away for me to see everyday, I would lose her trust completely and she would be even more out of touch with reality. At the same time, I wasn’t sure that I could handle a psychotic teenager 24/7. She went to a group home and it was the best possible solution. Then she transitioned home with community supports lined up through the Department of Mental Health.
It’s probably not too late to get community supports. In our case, they came to the house and often took her out for drives or to get a coffee. Eventually, they went to the grocery store. She planned and cooked a meal with help. Slowly, I saw improvements (also due to meds).
It may not be too late to transition him to a group home where you can visit him everyday. There could be a number of benefits to that like encouragement to become more independent and giving you a very much needed break.
We all want to hold our ill children close and do everything we can for them. Don’t blame yourself for that. It’s not too late to take some baby steps as caregiver 1 suggested or to look into community supports.
Please continue to reach out - I know you feel very exposed sharing this with us. There are probaby other people here experiencing similar things that haven’t summoned the courage yet to ask for help. Asking for help is a very hard thing to do - at least it is for me.
I hope you don’t stop, I have read many of your comments and they have been most helpful and caring. I think this was just bad communication. I know a lot of times I have to read what I write 3 or 4 times and it seems it still could be taken badly. I’m not a very good writer. I believe everyone truly cares about you, I do. Your knowledge of this SZ and heart (you are still fighting the good fight) would be a great loss to many of us… You are under so much stress right now with the rest of your family and your cats/cat I would know what to do with out my cat. He it the one that is always there for me. Hugs and prayer to you Roseof Sharon
Thanks so much!!! I appreciate all the kindness!!! About 6 months back I had an infected kidney and had to go to the hospital. I was in agony, but it was so nice to have the nurses caring for me ha ha!!! I’m not used to it. So when I say thank you I mean it very deeply!!!
When my son was at his worst all those years ago, I trusted in God, more than I knew I was capable of. God saved him. I’ve got to get that faith back.
Ttti,
My cat means everything to me, and it was so nice of you to tell me about your cat. He was diagnosed with diabetes last week. I’ve been giving him insulin shots every 12 hours. Tomorrow I’m taking him back to the vet to see how his blood sugar is reacting to the insulin.
When they prescribed the insulin, I researched all I could and found he should not receive more than 2 units. The vet prescribed 3 units. This is my life, the big advocate for everyone even the cat! So of course I called them and pointed out that on the medications website it says the cat should not get more than 2 units. I go through this constantly with my mom too. I won’t bore you with all that, but it’s a fight all the time!! Anyway, I’m sure I’m a big pain in the neck to everyone and I wish I could just relax. My son was born with problems and I’ve just grown accustomed to fighting. Fighting for what is right, or reasonable.
One thing I’m getting out your post @mmm61 is that we might need 3rd-party help. It’s so easy to get into a rut and let years pass as @RoseofSharon described without doing anything significant to help our family members recover. There probably are community resources out there if we take the time to find out about them. That being said the mental health system in the U.S. really is pretty crappy by all accounts.
I’m starting to read Healing: Our Path from Mental Illness to Mental Health by Thomas Insel to get motivated. He was a former director of the National Institute of Mental Health (NIMH) and got disillusioned about how much basic research was being done and not enough focus on practical healing.
I’m sorry you are going through this.
My thoughts are to increase social activity for both of you. Together, then eventually separately. Be around other people.
I know that it’s sometimes difficult to get our sz loved ones to do anything—let alone socialize! But maybe it’s something to aim for.
I have a friend who flew out of her apartment all upset with her son because a similar issue, at that time her son was undiagnosed, it was the beginning of the sz; they had been recently moved to the US and they were sharing a two bedroom apartment; I suggested to her that her son needed immediate help, mental health care and he did; their means at that time were scarce but she found him a place, apart from her, ever since they live in separate apartments not too far but in different places. She immediately reminded him that she’s his mother. With medication he definitely got better, I knew of another person who openly told me that in the group home where he was staying he was given medication to lower his libido. It’s known that persons with a brain disorder can have an exacerbated/damaged area in the brain that make them do that. My son’s delusion is that his father and his younger brother take advantage of him (sexually); that’s when he’s unmedicated. It’s really common. Sounds ‘gross’ but it’s their reality. I knew of another 50 yo girl who had brain cancer and after that she was blurting out same kind of stuff.
Thank you for letting us know about that Keep My Son book. Dr Xavier Amador mentioned on one occasion about his brother’s belief that his mother took advantage of him when he was months old, he knew it was a delusion because babies don’t have that far memory.
I’m sorry you feel misunderstood, we are not in your shoes; I, as a mother, feel that my son sometimes forgets that I’m his mother, ex. he would say something like “do you want to go to the hotel?” Of course I let him know immediately that I have my bed her at home, I know he likes to spend time in the hotel and I don’t, I know he wants company and his friend doesn’t want to go to the hotel either, I rather sleep in my own bed as everyone else. He trusts me a little more medicated or unmedicated, but I really appreciate when he’s medicated, he asks and includes his father in our outings because when he’s unmedicated he tends to be even aggressive towards him. It’s very unpleasant, sad and uncomfortable, is hellish!!!
I wonder if you would be able to have him in an apartment or a group home.
Years ago I had this young rider and he confided to me that he had to take meds to lower his libido.
At the onset of my friend’s son’s mental health journey she flew out of their apartment, she was furious and immediately she reminded her son that she was his mother and not long after that she made arrangements and sent him to live with some guys to share their rent and their place; her resources have always been precarious but she managed to get him out on his own. He got better when he started to take the medication and it’s been a blessing that he had the insight to stayed on them ever since.
There’s no magical wand to take away the experience but hopefully you find the strength to pull away from the uneasyness of this reality, even if you have to leave him there.
My best wishes to you. 
That’s what this group is here for, don’t feel bad.,my husband and I are all my 30 yo son has too. That’s why I’m desperate to get him housing. If something happens to us… he is alone in world. I don’t want my daughter to have to deal with all that. Maybe you should try to get housing for him again. Probably best in long run. We won’t always be here for them.
Something similar happened to me, but over 20 years ago when my son was relapsing /withdrawing from medication. He kept looking at me in a strange way, then standing up banging the table with his fist, shouting no, no over and over and trying to get out of the house. Not knowing what was happening, i kept stopping him leaving! It wsnt until the next day, he told me he had voices telling him to do something sexual to me. It hasnt happened since, he has always been over protective towards me. I have lost count how many times i gave been mistaken for his wife, this makes me feel uncomfortable. So when his dad retired i took a step back, although i am always there for him, and like you i have given up my life for him. His dad goes out with him more than i do now
Thank you for posting the topic and I’m so very sorry and saddened that this aspect of the disease is a reality for you and your son as well. I think everybody responding to this thread has offered excellent thoughts, from art therapy to suggestions on developing social skills. And all have shown courage in sharing their own experiences, from discussing the medications to suppress libido to the hallucinations and delusions of our loved ones. It can be a difficult topic to begin with, especially when it’s causing such negative and real issues at home in our own very real lives. It’s tough because it can be embarrassing, for both us as well as our loved ones. And I know for me at least there’s always effort to save as much face for my loved one as possible, and to respect their privacy as much as possible. So where else can we possibly go to have a meaningful and safe discussion about these things, if not here? Am I right? For me, for one, this site and this community has been my saving grace. Best therapy and support I’ve EVER found. (Thanks everybody for being here! )
Though it’s not my child, which comes with its own very special set of trials and struggles when our loved one suffers these brain diseases, my diagnosed unmedicated partner with zero insight of over ten years is (I can’t believe I’m going to type this out loud 
) is by most definitions, a pervert. He is a sexual deviant and a sexual compulsive. It has caused some pretty major issues in his life, for him and for the people closest to him. Everything from engaging in extremely dangerous behavior with people who ultimately were extremely physically abusive to him to spending hours and hours a day looking at pornography to him literally engaging in publicly lude behavior by himself, risking being arrested as a sex offender.
He has been tied up, beaten, urinated and defecated on, sodomized until he bled. He did not ask for this. He was raped. It was extremely, extremely traumatizing for him.
He has been found masturbating in public parking lots. Neighbors have also complained that they’ve seen him out masturbating in the yard. He has engaged in sex exchange for money when he had plenty but believed he had none. People have been able to threaten him into compromising sexual situations, because of his delusional beliefs, where he was filmed and then his family stalked and threatened with blackmail if they didn’t pay, and he has ended up posted on you tube when the blackmail demands weren’t met. (Note: these are extremely illegal and serious crimes. The parties responsible have since been prosecuted and are serving time in prison.) I have to say, most of these were episodes during his deepest psychosis. Except the potentially unhealthy addiction to porn. Though I think it’s worth noting he struggles with compulsive issues due to his disease and thus addictive behaviors kind of go hand in hand. Gambling, cigarettes, drinking, sex, food, etc…There was a point years and years ago that his family discussed getting him into a long term psychiatric facility, or getting him on medication for libido (Chemical castration). I tried for years to get him to talk to anybody in a professional capacity and expose him to CBT (cognitive behavioral therapies) in the hopes of getting him to identify the impulses. But hey, when in psychosis, they’re living an entirely different reality than most of the rest of us, and I think we need to not forget how horrifying that must be for our loved ones. As somebody mentioned earlier, their son pounding fists on the table screaming NO! NO!, just to find out later that the voices were telling them to do sexual things to their parent that they didn’t want to do. Horrifying struggle our loved ones to endure… horrifying. See, when my loved one was coerced and threatened into situations that resulted in people raping and beating him, he BELIEVED that terrible things would befall the world, Demons would take over all our bodies and the earth would literally burn up if he DIDN’T do what he was told. He BELIEVED this. Horrifying….
I have a close girlfriend who also has an adult son who is a paranoid-type schizophrenic. She reports that he also is deviant, obsessed with pornography, HAS been arrested in his car at a beach surrounded by the stuff with his penis out in the middle of the day. People walking by with their kids. When he lived with her before she sent him to be with his father who found him a six month term facility, she would find ejaculate all over the walls and ceiling of his room (you heard right. Ceiling. What???) He was also very, very, very possessive of her. As mentioned in another recent thread, he would be extremely jealous if she was with friends, talked to a sales clerk or server at checkout, demanded to know who all her phone calls were with and would go through every single text and email on her work phone when she got home from work (mostly all work related, obviously). Her son WAS a violent person sometimes in psychosis, unfortunately. At one point she gave up fixing the cabinets, doors and walls in the house that he would destroy during episodes. She lived in a home of ruins. A home she had previously been very proud of. Her sanctuary she’d call it. He did, eventually, end up beating her and attempting to rape her. She was able to fight him off of her and escape the house and get to a friend’s house. They called the police and had him taken to the hospital. This is when the decision was made to removed him from the home and he was sent to his father. (Again, adult son, in his 30’s at the time.) Sadly, my friend blamed herself deeply for her son’s disease. I want every parent here to know that though these diseases have a genetic component, It’s NOT YOUR FAULT! She would often say in response to his possessive behaviors that he was just ‘protective’ of her. “He’s protecting me.” she’d say….
To sum up, I don’t think it’s uncommon for people with these types of brain diseases to have some inappropriate problems of a sexual nature. Some parts of the brain involved in sex drive, cognitive decision making as well as impulse control, are all being affected. But if anybody ever feels unsafe or threatened, please, please, PLEASE do what you can to remove yourself from the situation immediately. I also would ask everybody to never forget too, how horrifying and crippling these diseases make life for our loved ones. It’s a scary world out there. It’s pretty friggin scary inside their own world too sometimes, let’s not forget.
And to every single person here, family, spouse or partner, caregiver, and diagnosed too: Remember, you never, ever, EVER have to go it alone. Welcome here.
OMG @Wisdom So heartbroken over your partner’s experience. I believe a special place in hell is reserved for those that take advantage of children, mentally ill, or desperate people for their own pleasure. Pray that you both get Justice here or in the final story.
Thanks for your bravery and transparency. I feel the same way about this forum and members. Life-saving.
Truly, the only solace when experiencing the tragic and dangerous effects of SZ is knowing (1) we’re not alone, (2) it’s not our fault, and (3) there is some hope (small as it may be on some days!!).
Re sexual libido, as a male, I can attest that the drive is insatiable at times - especially in teen years. Society bombards us with sexual imagery. For those of us who understand the big ‘lie’ of porn and are able to set boundaries, it is still a challenge. And heaven help a young man with a twisted or tormented perspective.
Let’s face it, our sex lives as caregivers are often another tragic loss. My wife and I of nearly 30 years in marriage are barely able to cope most days, much less be loving and attentive to each other’s needs. Lower priority for ourselves, and still a painful reminder of our bizarre reality.
You bring up a most important point @Wisdom , if ever a caregiver or relative feels threatened or afraid, it is time to get out of that living arrangement, as care of self must come first. I am lucky that the worst thing that happened to me was a dislocated finger as a direct result of arguing with my daughter (well her voices), and much mental anguish. But the arrival of police at our house always calmed down my daughter. I would have been far far more scared of her if she were a big man instead of a small woman. The voices were ALWAYS twisted and ugly for my daughter except for one voice that tried to control the other 7 or so mean voices. And for a woman who never had sex in her life to have weird sexual psychoses showing up in her behavior and conversation was something I couldn’t understand.
Thank you @oldladyblue for acknowledging the difference when a loved ones size and strength is over powering. I understand that my son cannot help his physicality, but when you are alone and the rage is always directed at you, it is hard to do anything but stay away. Heartbreaking when all I would like to do is to be there for him.
Yes, of course @penelope_pitstop I totally believe and acknowledge that it must be so very hard as a single mom to an adult son with sz. When the rage was directed as me, and there was only a 2 inch 40 pound difference between myself and my daughter, it was scary enough.
My son did something to me years ago. I have never told anyone, not even his dad. He was about 22 and living with us at the time. He kept wanting to give me hugs. That gave me red flags because he usually at that time showed hatred towards me. I was in my laundry room in our basement and he came up behind me a grabbed my butt. I screamed at him “what are you doing!! I am your mother!!” I was so upset and just grossed out like you said. I told him he better not ever touch either of his sisters. He was humiliated and we didn’t speak to each other for a while. We never spoke of it again. I believe he was drugs at the time. He is 35 and lives on his own. now. It took me a long time to get over it. We have a decent relationship now.
So sorry @Lmr . Well done to you for being able to rebuild the relationship with your son after something so awful.