Needed to talk and I chose you all


I am so sorry Robin, really bad luck on being the unusually difficult case. It is good, I think, that the current doctor realizes he is in over his head. There aren’t a lot of doctors that specialize in the severe brain disorders. Too many psychiatrists try to treat brain disorders when they should not. At our Family to Family class they were adamant that we only use the doctors they recommended, turned out to be great advice.

It really does sounds as thought someone has paid attention to your concerns and your son, and they aren’t pushing him out the door too soon this time. Glad you live somewhere that has transitional housing and group housing available to meed his needs…


How is your son doing?


I was just thinking how nice it was that your son was excited and happy to go for a ride with you and smoke his cigarettes. It is so nice when they are experiencing happiness.

Thanks for asking, mine seems to be the same. A few weeks back he stopped by his brother’s house and borrowed his bicycle. I thought that was nice.


Thank you for your support. It took one year after he stoped getting the invega know he’s going down the same path throwing out all his stuff. Saying that he through out his garbage then somone came and put it back . And in the other hand he is saying someone brock in and stole his stuff. He won’t let you get close to him. Everything is contaminated. I brought him r cases of water he through them out. I just can’t go down this road again. I am feeling so sick and scared.

There is just no one that I can talk to or give any advice. What’s the point in anything things will never change I am just getting to sick I am not strong enough to go through this for the fourth time I am allways on the edge waiting to fall off. Thank you all again for listening I just can’t stop crying.


Is there any kind of community housing that would accept him? I know it varies so much from place to place. I am so sorry you are dealing with this. It is do heartbreaking. There are so many helpful people on here, I hope uou can find help.:heart:️:heart:️:heart:️


He has his own place I have just paid to do waterproofing the foundation and have a new toof put on. I don’t know how that’s going to work its been three months now since I ordered the roof and nothing yet and he is quite delusional now. I have spent most of my money on this. I am so brocken can’t talk to him. I have no one to turn to. I’m getting so depressed I just don’t know what to do.
Thanks for listening


Margi, he has his own place? So, you have time away from him? I know you feel broken and hopeless. So MANY of us do here but we have to keep going and find ways to cope. You have us to turn to and with no explanation.

I am NOT trying to push anything but I started on antidepressants and they have really helped me to cope with the crying which was really getting in the way of my functioning. I’m still depressed but the tears have stopped, thank goodness.

Please hang in there and take car of yourself. Keep us posted



I am so sorry for what you are going through. I noticed you said in a prior post where you live…I looked up and found that NAMI has a presence in your area.
I highly encourage you to seek out local support in addition to this Forum. And as has been referenced, appropriate medication and/or counseling for ourselves can be a good thing. This is a difficult journey.


@Margi - I’m so sorry you are going through this. I too am taking something for depression. I started taking the sarcosine when I was trying to get my son to take it. It seems to help me. When your son was on invega how did he do? I’m praying for things to turn around for you.


@DianeR it’s okay to feel sorry for yourself. I think we all do that sometimes with this illness. I used to feel like I probably came across as a sad sack, feeling sorry for myself when it’s my son who’s the ill one, the one who is truly suffering, but as I learned more and more, I came to realize that I probably was actually suffering almost as much as he was/is. One time when I was crying and my fiancé was feeling helpless and starting to complain and I thought maybe he thought I was being selfish or something, so I just had a temper tantrum and said, “yes! I feel sorry for myself! and yes, I want someone to feel sorry for me too!” It felt good to say it, and he got it.


How’s he doing now? My son would come home from the hospital quite delusional and it was alarming, but what was happening was he was adjusting to the medication tweaking in the hospital. It would take him probably about two weeks to calm down and settle into his routine of doing nothing all day long, just smoking cigs and weed, and listening to music. :cry: what kind of a life is that for a young man?


I had never heard of schizoaffective until well into this trip, and I only know that it’s schizophrenia (which is a thought disorder) with an element of mood disorder, like depression and/or anxiety. Not sure if anxiety is part of it. So it’s kinda like having schizophrenia and bipolar disorder at the same time. My son only has the “classic” schizophrenia, gee, how lucky! Ugggghhhhh! This illness runs in my family, several others with paranoid schizophrenia. Horrible disease!


@daquilamarguerite1 and all
Just a little background on my family history. My mom was and has always been an “odd nut”. I grew up in a very disfunctional family, although I did not know until my mid 30s that my family was not what you would say “normal range”. I found my wonderful husband when we were 16yrs old and clung to him, could not wait to get away from my parents. I thought it was a normal teenage reaction. Now looking back, I can see how mentally ill my mother and younger brother are. They are not diagnosed to this day.
My relationship with my mom (father passed) has always been a non contact sort of relationship, not loving, not caring, not involved.
I have met one uncle and one aunt on both sides of the family, as I started digging around a little, I found a huge cover up! My family has been keeping the MI in the family a secret! No one talks about it, it’s like a serious family illness that has been covered up for years! Why are they so ashamed? Do they not realize how important this information could have been to me and our son who now may never recover?
I have a beautiful grandson from the oldest daughter, at least we are aware now. My other daughter is not having children at this time, she and her husband do not like the risk.
Such a sad ending for our son, their brother, who now awaits a hearing. Is he competent or is he criminally insane? Either way it’s a life sentence. Pretty sh#!!y
Edit: guess I needed to get that out! Thanks for understanding!
Edit edit: this has been really hard, I’m just screaming on the inside, not that it does any good. It’s just too much for anyone who is not walking in my shoes to really understand.


@daquilamarguerite1 I don’t necessarily feel sorry for myself. I may be a bit pissed off at the unfairness of the situation. I take good care of myself. I just started an online art workshop where we virtually go to Provence and my son is doing well so I’m feeling pretty fortunate.


I do agree that it would have been better had your family not kept mental illness in your family line a secret. Perhaps there would have been a different life for your son, if you’d known, and made different choices. But perhaps not…

The current situation is a sad ending for your son either way and a heartbreak for your family.


We end up trapped in these hellish situations with our children. I know that sounds dark, but it feels accurate to me. We deal with and fear dealing with situations that other people can’t even conceive, situations that we know could realistically happen at any minute.

The world won’t help our children, but seem to enjoy punishing them for what happens as a result. When they put our children on trial for things that happened when they were psychotic - it seems the same to me as the old days in England when people when sightseeing to look at people in mental asylums. To medicate a person so they can stand trial and be put in prison for something they did when they were not medicated, in my opinion, is cruel and heartless. Yet it keeps happening. No one wants to help our family members.

Like you, I found the covered up relatives as well. I didn’t know to keep a look out for signs of scz, because not only did I not know what scz really was, I didn’t know it was in my husband’s family. As has been pointed out on this board - its not necessarily just my husband’s side. We FINALLY have a diagnosis for bipolar on one of my siblings. Genetically there was a possible risk for scz from both sides since some abnormalities in the same genes are shared by bipolar and scz, its just a bigger risk from husband’s side with his mom and his aunt and his 2 cousins all having scz. Totally covered up. His mom hid in her bedroom all the time, I thought it was alcoholism. She was self medicating with alcohol. My husband actually believed his mother was a psychopath, he is still more convinced of that than scz. She would tell people I had said things I had not said - I thought she was just a mean spirited person. Now I realize all the times she said I said things I hadn’t said, and she said other people were saying things they hadn’t said, she was hearing voices and its similar to my son’s voices. He always claims the voices belong to the people nearby. MIL’s sister was never spoken of - recently I had to dig up an old obituary to prove to other relatives the sister had lived. That’s how hushed up they were about her. MIL’s other sister did come clean when I asked her outright about her other sister. She pretends as though she just realizes it now. She says she thought she had 2 sisters with severe alcoholism issues.

Our version of scz does give my son a handful of functional days a month. Pretty much how it was for his grandmother as well. Maybe the aunt is telling the truth, maybe they just didn’t talk about the other sister because of the alcoholism, maybe they didn’t know it was a brain disorder. Heavy self medicating does blur the picture. The two cousins from my husband’s generations were just thought to have “gone wild on drugs” and eventually overdosed.

I really identify with your dysfunctional family. My dad would have these rages that could be started by nothing. He would be fine one minute, then raging the next. My older sister was the same way and later, my youngest brother. My mom seemed to think it was all normal and if you objected, you were the one that had the problem. Combine that with husband’s mom, and its easy to see why we moved half a country away from both families when our kids were babies. I’ve said before that I thought we could get away - instead we took it with us as it was laying in wait for our son. You can run from brain disorders in your family, but you can’t hide.

Take care @AnnieNorCal.


Yes my son was also on a court order someone came to the house once a month to administer the invega shot he was only on it for six months. He was doing quite well all his delusions seemed to disappear the only problem was that he had quite a bit of wait gain. Then he found this lawyer who got the comunity treatment order revoked under a technicality. Now all those delusions are coming back and fast to. The roofer is coming to his house next week. It’s been 3 months since I hired him didn’t think it would take so long. Now I don’t know how that’s going to work out . He’s throwing out everything that’s in his house and being quite hostile towards me. I feel like I’m going to have a stroke or something. I hope I can get something to take from the dr. I’m not sleeping at all.


You can get him a payee if he gets disability. Where someone else handles the money for him


@hope, Thank you all for sharing your stories. I’ve been feeling really lost these last few months. It does make a difference to hear about others who are in similar situations.
Very grateful, AnnieNorCal


@AnnieNorCal, we all know that it could be us in your position. Our hearts hurt for each other. We are with you, Hope