Family and Caregiver Schizophrenia Discussion Forum

I don't know what else to do

I have done everything I can think of to help my son that has schizophrenia. A year ago my son was doing well. He was working, and even dating. I was so happy that things were turning around. Then he stopped taking his meds and things went down hill from there. I recently had a well check done on him which landed him in the hospital. He received a injection while hospitalized. Once again I thought things were turning around. He has convinced his doctor to switch him back to pills, which was not a good idea. I can see him slipping back. I am so tired of fighting him on this and I feel like there’s nothing else I can do.

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This reminds me of our 26 year old son who has schizophrenia diagnosed at age 21 with life long history of mental illness, no psychosis until his late teens. Our son does so well when medicated and then unravels when off his medication. For so long he had little insight into his illness, so it can be an ongoing challenge. Our son is medicated at the moment which is a priceless gift. he’s been willing taking his medications since May of 2019 after an involuntary commitment.

Two suggestions read "I am not sick by Xavier Amador which gives a good technique to discuss and facilitate medication compliance.

The other option depending on what state you are in is to see if you can get an outpatient treatment order, which is a judge’s order to take medication and participate in treatment. Typically you can only get this type of order if you have evidence of your loved one being a danger to self or others when off medication. This may work in your case as you said he was hospitalized after wellness check. This worked for our son when he was in his early twenties with no insight. While he was under the court order he received injection of his medication to assure compliance. This was the best year of our life.

Don’t give up hope. Medication is often and ongoing battle, but with time, maturity, and ongoing medication our son has gained some insight and now takes his meds in pill form willingly. We were able to more successfully use Dr Amador’s approach when he was more mature and had the experience of a few involuntary commitments cause he went off his meds.
Before we got here it was five years of hell, on and off of medication with our life and his life significantly negatively impacted every time he went off his medication.

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Hi Elsa. “For so long he had little insight into his illness”… After the court order, it sounds like he gained insight for the first time after he took meds. Would you say that is true?
My partner who isn’t sick and doesn’t need help…

It is so hard to have see behavior that is regressing. I would like to offer suggestions, but first it will be helpful to know what you have done to help your loved one. Please don’t take this the wrong way. We have all “tried.” There are a lot of tips in various posts on this Forum. For example, do you know what “anosognisa” is, and have you read the book “I’m Not Sick; I Don’t Need Help”?

Don’t give up hope. Sometimes it is two steps forward and one step backward. It can be the nature of this illness.

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After the initial year with injected medication, his insight did not improve. He developed empathy, delusions/hallucinations went away and everything else in his life improved, except the insight and his ability to work. It was 4 years later when he was on round two of medication, same medication shot first dose then he switched to pills. But he took it for 6-9 months before insight started to develop. He also turned 25 years old, so I’m not sure if it was length of time on medication, experience/realizing correlation of off meds=hospitalization, or the fact he turned 25 years old (which is when male brains reach maturity). Probably a combination of all three.

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I’m so sorry to learn about your ongoing struggles and the despair that the cycle of psychosis brings to your life.

Others have talked about the benefit of maturing - I am just wondering how old your son is.

My 26 year old is in the same boat. It took him years to finally submit to talking meds. He was diagnosed SZ at 21 after living with a “friend” for 6 months. Cannabis Abuse is what the State Hospital said he had. He now knows he has to take his meds or he will be going back to the hospital. He’s tried to hid the meds but we figure it out with that day or the next and get him to realize he has to take them. He seems to want to do better but the voices seem to get to him more than I do. The voices are the worst!

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Honestly? There is a point where we truly have done everything we can. We then can only respond to future events. Unfortunately, this is a cycle with many—medicated and reasonably stable, then off meds and spiralling down. Be prepared with a plan for the time when you can do something to get things back on track. Be kind to yourself, and know you have done your best, even when it didn’t get the result you hoped for.

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Don’t give up! Take care of him but take really good guilt-free care of yourself.
(Yes, I recommend Retail Therapy: purchasing favorite and needed items to soothe the soul)

-And read, read, read about SZ. This site in particular, is a great comfort because so many truly understand the difficulties with this disease.

-From what I read here, this up and down battle with meds, hospital, jail, recovering is an ongoing pattern over the years.

-I work to stay connected to my son. I get him talking about the few things he can manage: cooking, making coffee, watching the news/COViD-19 info., fishing ANYTHING to pull him out of the depression that grips him.

-Don’t give up. This is a terrible disease. And someday a cure.

from Vermont
-Blessing and Good Health to You and Yours

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I am numb. I read the forum and my heart breaks as we ALL struggle with this illness. I also see great helpful suggestions. Like most of you, I am at a loss as my unofficially adopted son is now back incarcerated. Due to no show at a court date, which was really not a big deal in the overall picture, however his PO said he would not pick him up for it unless he did something else. Well, 3 days ago, he is staying with my mom after being escorted from my home 6 months ago and #1 rule, NO alcohol. He decided to do it anyway and when my mom found the bottle, he grabbed her arm and demanded she give it back. When I heard this, I called his PO to have him picked up; with the virus crisis, he was not allowed to do that and so I had to call the sheriff dept. they too, did not want to take him but I was adamant he needed to be removed. He called from jail, clueless and acts like he is having a break and will return like nothing happened. I am so depressed and numb that I now have to tell him he cannot return and will now be homeless Again, out in elements, no money, no family or friends to call unless he agrees to take meds. he will not be allowed back. He has absolutely refused to take meds. as he feels there is nothing wrong with him. I have read Dr. Amador book, there is nothing he will listen to, me or his therapist or his PO. He is so ill and I have begged the Crisis team to intervene as they know his history, they have not been any help to me or him. This has changed my life in so many ways and has left me feeling helpless at present. It is very isolating as nobody wants to hear it and others are tired of hearing it. I feel so alone and helpless. I am a fighter but this has got me.
My heart goes out to each and every one of you. My son will be calling me any second from jail and I have to tell him he cant come home. :pray: :disappointed_relieved: :cry: :sob:

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My daughter was diagnosed with schizoaffective disorder since she was 13. It was hard for her to be med-compliant due to the side effects and dullness on her creativity. She missed the time she had when she was a child and it took us a long time to accept that it is going to be different. It has been 12 years now since she was diagnosed for her to work out a medication regime that minimizes the side effects, lots of trial and errors there and hopefully it won’t be as hard in the future. There were times when nothing seemed to work. When I looked back to understand what has worked for my daughter and kept that up, the rest became easier. My best wishes for you and your son.

Sorry to hear about your son, recovery is possible but he needs to have self discipline, self control and give up the pot & cigarettes etc.

I’ve had a history of severe mental illness but managed to get better and no longer take any medication, work part time 2 jobs and actually enjoy my life with my girlfriend and look forward to the future. If your son would like some ideas on how to get better here’s a link to my short essay

Link: http://media.yoism.org.s3.amazonaws.com/CakeTheory.pdf

Also I have a YouTube Channel where I air my views. Good Luck>

.https://www.youtube.com/user/caketheory

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My son too was in this cycle for many years. It is a very tumultuous life for everyone involved. The stress of taking care of him and worry over his safety was too much for me. I found a residential program specifically for schizophrenics. He’s lived there for 20 months now and consistently med compliant. He likes the supportive community and life has settled down for everyone. I look back on our years of trying to manage his illness and realize it was beyond our scope of care and the stress was taking a toll on my health and employment. Residential care is expensive but worth it! It has taken a 24/7 educated staff to manage my son’s illness. I recommend this route if affordable for your loved one.

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My son is now 40 years old after being diagnosed at age 17. Definitely a heartbreaking illness. My son can take his meds for five or six years and then he stops. This has been a never ending cycle. Sometimes he has some insight and often does not. I spoke with a Stanford professor who is a specialist. He said schizophrenics usually get worse as they become older. I certainly have seen this in my own son. It is the most helpless feeling in the world. My son did great for years and then one day the meds stopped working. He threatened to kill my husband and myself a year ago. He is now living in a Board and Care facility for that reason. I have not been impressed with any of the psychiatrists he has had nor most of the meds. If you get a chance watch this Yu Tube video. https://www.google.com/search?client=safari&hl=en-us&tbm=vid&q=stanford+university+talk+on+schizophrenia&sa=X&ved=2ahUKEwj9q4P1hZrnAhWmJzQIHU9GA-AQ8ccDKAB6BAgHEAI&biw=375&bih=553&dpr=3

Congratulations on your recovery! You are truly an inspiration!!

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I recently watched this documentary and it gives hope for how communities CAN offer alternatives to jail to help persons with mental illness overcome their illness. https://www.pbs.org/show/definition-insanity/

Also, look up resources in your state/locality for AOT (Assisted Outpatient Treatment). Connect with a support group like NAMI who can teach you more about AOT, and where others with this lived experience with their loved ones can guide you through what it takes to navigate the prison system with a loved one who has a serious mental illness.

I have met (and/or met the family member who had a loved one with SMI) at least five people who have said that they had to hit the “bottom” (which often included jail) before they were able to do what they need to do to help themselves. It doesn’t always happen this way, but there IS hope. Don’t give up.

Why did he stop taking his medication?
Side effects?
Felt better and think he does not need anymore?
A conversation as to why he stopped may give you some insight and help with problem solving.