Hi Jack ,
I wish my son would listen to me and take 5htp , gaba and ashwaganda but his paranoia and Anosognosia won’t allow him .I did try !!! I believe anyone with insight has a better chance trying the supplemental route .
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I agree Linda!
My son also has Anosognosia and will not agree to take Anything. He is so against any medication, even Advil. Has never smoked, hardly ever drank, never did drugs, but needs to be on medication for schizophrenia. I think your friends are right, your son is lucky to have you. It sounds like you are doing everything you can to help him. I understand the roller coaster, I call it the hamster wheel, they just can’t get off. When they were little it was easy to fix an illness, this illness we can’t fix and it is frustrating and heartbreaking. The Hippa laws certainly don’t make it easy!
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I can totally relate. I’m learning to step back a little. My son is in an apt 2 hrs away and with covid and protests in Philly where he lives. I haven’t been able to check in on him as often. I feel like when he’s doing well I can relax and do activities easier. When he’s suffering an episode I can barely focus at work or sleep. But he’s 24 -and I have to just stay in touch and make him feel loved and hope he will reach out in times of trouble.
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Welcome to the site @mahwah . This is a great group of supportive people the likes of which you probably will find no where else. You are welcome to read and post and share your emotions here.
I went through almost 3 years of unmedicated psychosis with my daughter (32 when she first started hearing voices and having paranoid delusions). Many police visits, a few arrests, 5 forced hospitalizations, several medications that did not work, etc. All the while feeling helpless and guilty that I couldn’t figure out how to improve the situation for my daughter.
Your last sentence says that you thought committing him was the answer, it might be. And yes, it is VERY difficult to get a loved one forced onto medication. That, however, WAS the key to getting my daughter successfully medicated. And it never would have occurred if I hadn’t been coming on this site for a very long time, sharing, reading and gleaning bits of information that helped me do the right things to finally get her force hospitalized (again) and finally successfully medicated.
Try not to feel guilty, ever. You didn’t do anything to cause your son’s psychosis, and you may or may not eventually help him to have his psychosis broken. Don’t be rough on yourself, take care of yourself, and try to help him. All you can do is try.
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Yes, the only way we got our son on the Invega shot was through a forced hospitalization. He got out of the hospital and 2 days later he was put back in. The second time it stated he had to go to a residential setting after his hospital stay. He was in the residential center for almost 3 months after a month in the hospital, released in February 2017. When he got out, we thought the worse was over and things would be back to normal. As we all knows, that is not the case. This was before we knew the seriousness of schizophrenia. My son actually has schizoaffective disorder. I feel the Invega shot has helped tremendously. However, our son has the addictive gene. He was addicted to cocaine at birth-it was definitely on his birth mother’s side but we don’t no anything about his birth father. He also has high functioning autism. Life has never been easy for him. He was always against smoking, drinking, drugs, etc. We never thought we’d have to worry about the addiction issue because we never thought he’d do any. At 21 he learned how to drive and had a part time job at a grocery store. We never thought he would accomplish so much. We were on cloud nine. Then when the psychosis started, he started smoking pot, drinking alcohol, and smoking cigarettes which made things worse. He couldn’t work. After his residential center stay, we got him in a program for young adults with psychosis and that’s where he gets weekly therapy and his monthly shot. He also goes to another therapist as well. Because of the CoVid, his therapists are doing phone sessions. He stayed with us during the quarantine time and he did pretty well. But he went back to his condo after 11 weeks, his choice. He only lives 15 minutes from us so we see him at least 5 times a week -according to his moods and wanting to be around us. I know how terrible the drinking and smoking pot is, but he won’t go into any sort of rehab. We take it day by day, minute by minute with him. I am the same way as most of you. When he is having a good day, I feel relieved. When he has a bad day, I am a wreck. But he cycles very quickly. His ups and downs can be several times during a course of one day. I am so thankful for this online support. I can’t believe I waited so long to post after reading posts for so long. If any of you are new to all this, NAMI has good support groups. However, my group hasn’t met since February because of CoVid. I found a wonderful therapist for myself who use to work with this population of people and has been great. Get as much support as you can for yourselves.
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Thank you for your reply “oldladyblue”. I am new to this site, never did this before, and am grateful to be able to share and get advise. Did you have your Daughter committed? If so, how? Last week I didnt hear from my son for 5 days, had called VA Crisis Line and the Police. No help because I did not have his address. He just moved into a HUDVASH program through the VA. I kept reading his messages that are always continuous, begging and pleading for help, why did I abandon him? Along with every bad name in the book! Then I feel really guilty, what else could I have done that I haven’t already done?! When I finally heard from him yesterday he told me he was in the Hospital for 5 days. He had gone to the ER and passed out, next thing he knew he was in a hospital bed, and “says” he was diagnosed with heart atrophy. because of malnutrition. It is a condition when the heart loses muscle because of malnutrition and lack of exercise. He says he cannot eat because of a feeling in his chest that he cannot eat. He has had many, many tests and doctors don’t find anything. I believe it is somatic. He would not tell me the names of the doctors he saw, as he knows I will call. I will call the VA tomorrow anyway to “try” to talk to someone. It is at the point now that his life is in danger, as he cannot help himself. He won’t even give my his address bc he knows I will call the police for a well being check and says he’s never going back to a psych ward. He has been in and out of the about 25 times throughout the past 7 years. Most of the time they let him out after 72 hours and he’s right back to square one. They were not able to force meds on him. One VA hospital he was in I drove 2 hours to meet with his doctor, she assured me he would be in there for a while. He was released in 2 days bc she was trying to force medication on him and he called the police to his hospital room. She didn’t want to loose her job, so she released him. I wish there was a place for him outside of the typical psych ward where maybe he would stay for help. I have looked into private facilities which look amazing, but don’t take medicare, and cost $30,000 to $50,000 a month! Sorry to say I am not in a position to pay that. They also focused more on the money, not very empathetic to what we both were going through. Any advise would be appreciated. I am contemplating going to Boston where he is, I am in Illinois, but have reservations because of the anger and hatred he has toward me for “allowing this to happen to him” and not helping him (in his perception). In the past when I have gone to dr. appointments with him and met him in ER’s, as soon as the dr. leaves or while waiting for the dr. to come in, I am the punching bag, same thing, over and over again. This person he has become because of his illness is not “My Son”, but I know he is in there somewhere. If I don’t do something I am afraid he will die and I will never forgive myself. Sorry for rambling, again, and advise would be appreciated. Thank you!
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Hi Mahwah, It’s a disgrace the VA doesn’t take better care of our veterans. Being in the service might have triggered the schizophrenia from the extreme levels of stress. I also live in Illinois- northwest suburb of Chicago. Any private place is beyond affordable. When my son was in the residential center, it was in the northeast part of Chicago. The name of the place is Bryn Mawr Care and their number is 773-561-7040. They take Medicaid. The building is old, but clean. His caseworker was great! There is an intake social worker who interviews the individual and decides if it is a good fit. He went from the hospital straight to there. I know it is sometimes easier to get into a place coming straight from the hospital, but they do take people who are not currently being hospitalized. I don’t know if you can get your son to come back to Illinois, but it might be worth a call to Bryan Mawr to see if they have any suggestions/recommendations. It must be so hard having your son so far away. I m sorry for the pain and sadness you are going through. My thoughts are with you.
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Hi Lvmyson, Thank you! I also live in the Northwest Suburbs of Chicago also,so that place would be doable, however I don’t know if he would come back to Illinois, but worth the try. I will call there tomorrow. Thank you!
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The last hospitalization for my daughter was done by a judge after she got arrested for running in and out of traffic on a busy street and yelling at a building downtown. I went to court and asked to speak so the judge would know she was mentally ill. He sent her to the hospital that last time from jail. The hospital put her on a shot I knew she’d had before that had a good result. The judge ordered her to stay on meds. By the time the judge’s order wore off, she’s been taking the shot for 2 months and thankfully she kept taking it monthly. It is now 18 months later.
Here in Florida, you can get a court order to commit a person who is a danger to themselves. Once committed, it might only last 72 hours, but could go longer if a doctor sees the danger the patient is to himself. Meds can be forced while in the hospital if OKd by a health care proxy that is either a family member or appointed by a court. The longest stay out of the 5 times my daughter was force hospitalized was 30 days, but she immediately stopped taking meds once out of the hospital every time except for the 30 day shot she is still on.
Each person’s situation is different, and the solutions are almost always different, but you can get ideas of what you might be able to do from this site and support groups.
I hope you can find a way to help your son.
Hi,
Like everyone else here I’ve shared many of the struggles you are going through and still am because this never really ends. There are things that have helped for us, but one area I found myself struggling with is not understanding that I needed to be setting boundaries or even how to do it. I was so afraid of triggering something that would send us back to that horrible place I allowed and enabled behavior that wasn’t good for her and actually seemed to fuel psychosis. My thought was, “How do you set boundaries for someone who is mentally ill? I can’t do this!” I read books by Dr. Henry Cloud, and they are good books, but I still didn’t get it, and I kept learning. I watched his and others videos on YouTube and prayed, a lot! Over time I finally started to get a feel about how to do it and what to say. I learned that it is good that we care so deeply but there is a part that only they can do, even with all the handicaps. It takes baby steps for me but it is working and is starting to set me free from caring too much. I found his program in his website helpful and I am a slow learner.
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Hi, ALL I do is worry all day about Cathy. She is still having a rough time from the side affects she was experiencing from the Vraylar. She’s on Seroquel now. She’s been really paranoid lately that cameras are on her and that she will get arrested for fighting. She’s Autistic as well. She’s never been in trouble in her life. I too get invited to lunch by my one best friend, I decline. I cannot leave her. She cant go out, doesnt want to. So I feel that guilt too, you are not alone. But I will say we need it. We need it to catch our breath and destress and have that reassurance, who ever it might be from that we are doing the best we can. With that said, I still cant go out and have a good time without my Cathy. Stay strong.
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Hi there. I have decades long experience with this topic- and I may be able to provide some insight and perhaps- some relief. First. I am not a parent of a schizophrenic child- and I can’t imagine what it must be like to have a child with this illness. My twin was diagnosed sz. in 1992 after a volatile period of delusions, violence and abusive language. After my brother was placed on medication and moved back to my hometown- I sincerely tried to put aside past grievances and be the most supportive brother I could be. (we never had an amicable relationship for most of our lives) The guilt I felt was oppressive. The sense of over responsibility I had was equally oppressive. The messaging in my own head was also brutal. Like you- I would ask myself what do I have be be thankful for? How can I be so callous towards my brothers situation and feel joy? Doing something small for myself felt outright cruel. Which made me feel ashamed. For years. Being selfish still feels… ugly.
What I finally had to learn was this. No one was going to come along and inject a sense of entitlement into my psyche. No one was going to appear to tell me that I still deserved a life. That I deserved love- freedom- peace- calm- intimacy and hope. I HAD to learn to forgive myself. Forgiving myself for simply- (on occasion) feeling a deep sense of resentment for being in this scenario. I can’t begin to tell everyone the deep sense of shame I harbored for this anger. I had to live in this shame for years while I examined my brothers disease from every angle to determine if I had somehow caused his illness in the first place.
The cycle of survival guilt, shame and over-responsibility can and WILL consume your entire life if you let it. I had to not only examine the root cause of the guilt and shame but how it manifested within my work and relationships. Without getting too far into it- I had to stop accepting abusive or unfair treatment as a means of paying off my survival guilt. Does that make sense?
I hope someday soon you can look objectively at how this illness has impacted your life and find peace in knowing that you’re doing everything you can do- as a Mom. In the meantime- perhaps a walk- a bath- a good book could provide you some small relief. I hope it can.
Love and light. R-
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@fefifofum69, thank you so much for your response. It really hit home and as I read it, I have to admit it made me emotional.
Truth be told, being good to myself or being selfish still feels ugly to me 
You are fortunate. I don’t have a counselor. I did go to a psychiatric nurse practitioner and the only good thing he did was medicate me. He just wanted to make it out like my son was functioning and doing “well”, so all was good in his mind. I eventually confided that I wasn’t “well” at all–bc even though my son was stabilized, I was still struggling with what had happened. The trauma of what I had been through while he was acutely ill was so fresh and the grief was coming in waves. I tried to explain how the diagnosis is staggering for a parent. He YELLED at me bc he felt criticized. It was unreal. I went home and cried for a day. I went to another counselor who likened my 21 year old son’s sz with her elderly mother’s dementia and said “aren’t genes funny. She had curly hair and wished she had straight.” My next step is maybe trying NAMI and see if there is a recommendation there.
My heart is with you.
Schizophrenia is a terrible debilitating disease.
Why can’t we get help for our children?
I am doing everything I can to help my son too. As I find more I’ll post.
I just found this page.
Hopefully together we can all help each other to get the answers we need and help for the ones we love.