Family and Caregiver Schizophrenia Discussion Forum

New and at a loss……

Hi, I’ve been doing a lot of reading here and trying to navigate. My 19 year old son although does not have a formal diagnosis of schizophrenia has been demonstrating all the signs and symptoms. I feel I missed it or maybe I was in denial of how serious his mental decline was and afraid I lost the opportunity to get him help. He moved out abruptly with little money and a job that’s part time at best. He is not responding to any calls from friends or family and I have no clue his state of mind. Before this abrupt move he had started to withdraw from everyone and everything. He stopped showing up for his full time job stayed in his room for week hardly coming out and when I checked on him would say he’s fine and I was trying to control him. He would go sleep in his car in the driveway and go periods of not sleeping at all. He would go on these extreme exercise binges to make himself tired. He then started to accuse me of stealing money from his bank account and accusing his siblings of not being in his life he even indicated that he had doubts I was his mother he was going to get a DNA test because the timeline didn’t add up. I had gone into his room one day and found pages and pages of random words that he would make word associations with. I didn’t know what it was but later found out it’s called clanging and can occur during a psychosis episodes. Back in March I had taken him to the ER because of some his behaviors and they felt he was depressed they gave him medicine but after taking it for a week indicated it wasn’t working. Back then I took him to see a therapist tried to get him to go to a youth group for substance abuse ( weed/alcohol) that I knew about but he wouldn’t participate. I know my writing is all over and I’m at a loss of where to turn or what to do except ramble on here as everyone seems so supportive. I don’t even know where he is now and waiting until something happens to force him into some type of treatment and a diagnosis is leaving me anxiety ridden as I don’t know how this will end.

6 Likes

Welcome @Katiajb1. This book is often recommended: I Am Not Sick, I Don’t Need Help! How to Help Someone Accept Treatment. If you don’t have it already, you might buy it from Amazon and learn more about how to help people get treatment.

My son would sometimes go for long periods with delusions and AV hallucinations and only later, after taking meds, tell us about them. I think sometimes it’s hard to know what’s going on. Other times it’s very apparent that a person is having a psychotic episode.

If he’s 19, then he could be on your insurance plan, which is good. When you have contact again you could see if he’d like to see a psychiatrist who might be able to get a better handle on what he’s going through and prescribe a better drug, if that’s appropriate.

2 Likes

Just want to say I’m so sorry that you need this forum, but also that this forum is really a life saver. I hope your son will get in touch with you. Meanwhile you sound like you are learning everything you can, which will really help so much in the future.

It is so hard to know during the lead-up to psychosis that that is what you’re dealing with. Also if it starts in the teenage years, professionals are reluctant to give that label (in my family’s experience) and will say depression, etc. In my son’s case, any anti-depressant made him worse, but adolescent psych hospitals kept prescribing them until finally he had a good outpatient psychiatrist who saw what was happening and said no.

There are many wise members of this forum who have really good insights. I will be sending you positive thoughts for your son.

2 Likes

Do not blame yourself. You did not do anything wrong. This is how this illness is. May be he went to a place he is familiar with. When you find him maybe he will not want to come back with you right away. itllTry to keep him engaged with you anyway. You need a support system, friends where he can go, outreach workers from organizations that serve homeless people. It is a long journey I wish you the best.

3 Likes

The book ’ Schizophrenia for Dummies’ is a good book to familiarize yourself and other loved ones about the disease. My son is 30 and does that kind of writing all the time. My son told everyone for a long time that he had AIDS, though his tests were always negative. If your son ends up in the ER again, tell them you want a psychiatric assessment done.You have to be his advocate and know what his options are. Do your homework and see what Mental Health services they have where you live. Also NAMI. ( national alliance of mental illness) have support meetings. Start writing down everything that happens. This is the right group if you have any questions. Good luck and praying your son gets the help he needs.

1 Like

Thank you for your support and suggestions. We ended up finding him and he’s presently hospitalized. They are going to be assessing him today. I know this is the safest place for him right now. He is still very hostile and insistent that we are trying to control him take away his rights. Arguing with the nurses and doctors it’s like he’s someone else as he had always been shy and introvert. I know this is a manifestation of his mental disease logically but it hurts my heart to see him like this. Please keep me in your prayers and thank you to everyone who reached out.

7 Likes

@Katiajb1
I could have written your post word for word. Our experience with our son started exactly like yours, when he was 19. He had suddenly moved out after an argument and hopped from couch to couch at different friends houses for almost a year. He didn’t want anything to do with us and we couldn’t understand why since it was a very minor argument. We found out he had been smoking marijuana very heavily and also started using lsd. At first we thought it was all because of the acid but his symptoms remained long after he hadn’t taken any.
He also began writing strange things and as he progressely got worse he started writing them all over his hands and arms. He also told people we weren’t his real parents. It was really painful seeing him so sick.
The hardest hurdle was getting the diagnosis. He was hospitalized 5 times in one year before someone actually identified it. They kept telling us it was just anxiety or nothing at all because they weren’t seeing what we were (before he was writing on himself) and no one would listen to us. Finally a telepsych psychiatrist at an ER listened to every thing we told them that he was saying and doing and gave a diagnosis. We are so blessed that she even agreed to talk to us and actually listened! That was in October of last year.
After the diagnosis things were still bad for months because he wouldn’t take his medication. He would pretend to but later spit it out. He didn’t want to take it because he genuinely didn’t recognize that anything was wrong and believed we were just forcing this medication on him for no reason. He spiralled quicky after that and became homeless, living on the street. We wouldn’t allow him back in our home unless he agreed to take a monthly injection (100 mg haloperidol deconate). He refused but eventually he reluctantly agreed. That was in March of this year and has been on the shot ever since. He has improved tremendously but still has a flat affect and has trouble holding a job. I think he sometimes has symptoms but he doesn’t say much about them he just lets me know he’s taken the haldol orally when he needs it. (Which is huge that he can recognize when he needs it, before he was adamant the there was nothing wrong at all, that we were the crazy ones).
Just know there are those of us out here that know what you’re going through. I know all too well how alone it feels. I hope our experience gives you comfort in knowing that things can get better. The problem is the road to getting there is so hard and the path to it sometimes seems like the wrong way towards getting them help but in the end it was the only way to get there, if that makes sense. Just continue to be an advocate for him even though he is most likely fighting you along the way. The people on this website have helped me more than I can say! It’s such great way to get answers and the support you need to get through this as it’s difficult to find people in our lives that truly understand.

6 Likes

I am so sorry that you are experiencing this because as others have already stated - we all know what you are going through. It is a nightmare that I would not wish on anyone. For me, I had to track my daughter down. There was a period of almost 2 months when I didn’t know where she was. It was the worst agony I ever felt. I tried everything I could to stay connected with her even if it was a text now and again. I always felt that if I stayed connected she would know that I love her and that when she is ready to receive help I would be there. I was told once by a health professional who worked with the mentally ill homeless that even a severe schizophrenic with or without substance addiction will reach out for help - when they are ready. I’ve been through a lot and changed my opinion on what to do and what not to do with my daughter. I have come to the conclusion that if I act (or don’t act) from a position of love, I can accept whatever consequences may come. I can’t control her mental illness, I cannot save her if she doesn’t want to be saved, I can only love her and show her my love.

10 Likes

“Clanging” - I had no idea that there was a word for this behavior. My son did this with his poetry …

2 Likes

My son was in an institution for a year. I think not smoking tobacco was great for him.
His mind cleared.
Nightshades may be the culprit. He also has boils and psoriasis which I think are caused by nightshades.

1 Like

This latest post is a relief. You are doing the right things. Just remember to try and not take anything he says personally (very very hard). Until he stabilizes, you are talking to the illness, not the son you know. Try to empathize with the feeling but not attach to the words or deeds. I’m really glad he’s in the hospital.

5 Likes

Well stated! Thank you for sharing and caring.
Yesterday I just had to get the courts approval for the Sheriff to come and take my son to the hospital. Its been a long 9 year roller coaster ride for me with him. Sometimes I wonder how is it that I’m still standing. Only God knows!

3 Likes

My daughter who is now 40 went through the roller coaster of denial, diagnosis, and is still trying out different medications. At 19 and going to college, she engaged in risky behavior. I was clueless about MH issues. When she was 23 and clearly delusional I found NAMI support groups to be a great help. During the early stages of my daughters bipolar/sz diagnosis she was experiencing psychotic episodes frequently. She didn’t get the help she needed until she finally told her psychiatrist she was hearing voices. There were many years that she was couch surfing and finally made it to a homeless shelter got kicked out and the police called me asking if I could get her. I did and the healing for both of us began. Before that, we couldn’t have her living with us because of her behavior. She is now back with us and doing well. I know how scary this can be and how long it takes before the right diagnosis and support becomes available. I would recommend reaching out for support during this time of crisis. Your son is suffering and asking for help in many ways. What I did to get my daughter to finally get help and see a doctor was getting her to acknowledge that lack of sleep was a big issue and she could be seen for that.
Long story for sure but hopeful. She’s now on good medication, working at a non stressful job, and going back to school. She’s a delight to be with. I know the dark side of all this and will always support her on "our’ journey. Never give up hope.

4 Likes

You might want to attend a NAMI support group in your area and ask others what is available locally. Thru NAMI we discovered a behavioral health treatment center that had walk-in appointments. Before that, our granddaughter was waiting for months to get in to see someone. Now that she is a patient with this center, things are progressing. She is on a new med - Vraylar - and we are seeing some progress. Good luck to you. Know that you are not alone and that there is support here with this group.

4 Likes

Thank you everyone who reached out and for the support and knowledge. He is still hospitalized and they have not been able to find a bed for him yet. He was started on zyprexa took it for 2 days and then refused it The nurse explained it was his right and we could see his paranoia returning and his difficulty focusing on relevant topics. He wanted to argue about his wallet not being his and being planted on him and how the hospital staff was doing “shady “ things to him. I’m concerned the longer he’s in a hospital and his mental health isn’t being addressed the more resistant he’s becoming to getting help. I don’t know how to speed the transfer along. Again thank you everyone. I’m going to look into resources from NAMI as someone has suggested. Between the back and forth to the hospital it’s been a struggle keeping everything afloat.

1 Like

@Katiajb1 My son also refused Zyprexa at the last hospital he was in. But after he got discharged the delusions got so bad – read abusive – that he willingly started taking it, at 2x the dose the hospital tried to get him to take.

It’s a hard way to get medication-compliant and a lot of damage can be done to everyone involved, including revolving-door hospital trips, but in the end the person has to want to accept the tradeoff of peace from the delusions for the side-effects of the meds.

2 Likes

My daughter usually will refuse meds after she gets home she is 30, and there is not a lot you can do about it, she was just in the hospital for 5 weeks, which is a good thing, usually they go a week and then send her home for me to figure things out or it seems. And I am totally at a loss for that, I try, I talk, I listen until I feel like maybe I should be on meds also. And she will offer and tell me there is nothing wrong with her, here you take the meds if you think there so great.! Is how it usually goes. But now she is in step down housing so we will se how it goes. They will have a chance to see how she does doing more things than sleeping and eating. I wish all the well for you and it is hard and just knowing you are trying and are there does matter for him it always will. He may not show it right now but it truly does don’t give up.

1 Like

Hi Katia, Im new also. My 18 y/o son just went to hospital today. I am a nurse and former school psychologist. My son started isolating and becoming anxious/depressed at 13. Last 3 days very rough, alot of paranoia. After he went to hospital I went thru his room, found all kinds of paranoid, angry, delusional writings. Im sure this is schizophrenia. Im afraid for his future, and im desperate to find a support group for myself. This seems like a good place for us where we can get info and support from others who understand.
Chrissy

6 Likes

Welcome @Chrissydawn and everyone else on this thread. The beginning of this illness is so shocking and hard. I am sorry you find yourself here, but am glad you are on this site. NAMI is a good place for support, Dr. Amador’s book I’m Not Sick, I Don’t Need Help has the LEAP method in it which helps to communicate change to your loved one with mental illness. While he is in the hospital, try to find out what out-of-hospital support there can be for him, as often any gains in the hospital are lost after release.

My daughter was hospitalized 5 times, psychotic for 3 years, before I finally KNEW what to suggest to the doctors (a 28 day Haldol Dec shot) and she was forced to stay on it by court order that I arranged. There is no easy solution usually for this horrible disease, and it is like waging war for your loved one to combat schizophrenia. I wish you strength to fight the fight for your son.

@Chrissydawn, welcome. I’m sorry these things are happening to you and your son. As someone who has mostly recovered from Schizoaffective Disorder, I want to offer you some hope:

First, it may not be schizophrenia, as there are other disorders with delusional and paranoid symptoms. Since you mention depression and withdrawal, it may be a depression or mood disorder like depression with psychosis, or bipolar or schizoaffective disorder. These tend to have better prognoses than schizophrenia. That said, I’m not a huge fan of labels and splitting hairs in diagnoses, as their stigma and expectations of outcomes can limit progress in the cared-for and caregiver alike. I think it’s more productive to use them as indicators to inform rather than define an individual’s (and caregiver’s) journey.

Second, while your son’s writings may be distressing or alarming for you to read, I view them more as a “cope” and a hopeful sign. Better to write out your thoughts and feelings than to act on them. Better to get these thoughts and feelings out in private rather than shout them to the world or the internet. To me, it’s a sign that he might respond to some form of talk, narrative or psychosocial therapy once he’s out of the hospital and more stable.

Third, I think your background in nursing and psychology may be helpful with your son’s recovery. It may aid you in reading and putting into practice techniques from Dr. Amador’s book that @oldladyblue and many other forum members recommend. It may also be an asset when talking to doctors and nurses and navigating medical bureaucracy and jargon. The saying goes that doctors make the worst patients, but I don’t think it follows that they make worse caregivers. Of course things are always difficult when it’s your own son, but you may have knowledge other caregivers might not and just as much passion. I know that background from my lower division classes in behavioral psychology and other subjects was helpful in my recovery, so I’m hoping with the support of this forum and NAMI and other groups you and your son may endure, and later thrive.

2 Likes