Family and Caregiver Schizophrenia Discussion Forum

Struggling to help son

Our son was diagnosed with schizophrenia at last year. He was 18 and just graduated high school (barely). Hospitalized 4x over the past year and most recent diagnosis Schizoaffective Disorder. Tried Abilify, Risperdol, Invega, Fluvoxamine. Risperdone made him have suicidal ideations. He has been on and off medications, currently off meds for 3 1/2 months.

We have not been able to convince him that his behavior is not typical and he is retreating into his mind. He is exhibiting wreckless behavior and lost his job. Very little conversation. We want to help but at this point, we don’t know how. We believe meds are the answer, we just haven’t found the right one.

Struggling to figure out next step. Help.

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@kajlang A lot of parents on here talk about rewarding/bribing them with money or something that he values that will motivate him to take medication. Is there anything like that you could do? I hope you can get him to keep trying some other medications. Its grueling to go through but once they find the right mix, its night and day.
Our son was diagnosed with Schizoaffective Bipolar last year also. Hospitalized . He has been put on clozapine, haldol, risperdol , cariprazine, Invega shots, all at different times and had side effects and he went off them. What has really worked for him for the last 5 months is Haldol as needed and Seroquel along with anti-depressant . He’s been able to complete his college online course and will graduate in the fall. He still has some negative symptoms but is able to manage them at the moment. *Im always holding my breath though…
Others on here can help you more then I but I wanted to respond to let you know you are not alone . Be strong, you got this !!!

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Hello! So sorry you’ve joined this club. There are great people here and awesome advice. I recommend browzing around this forum, it has helped me immensely! My son diagnosed schizoaffective at 16, 12 long hospital stays, tons of treatment programs and many, many medications later we tried the ‘big guns’ last resort, Clozaril. This medication has helped my severely impaired son to live in our house, in the community. He was a hot mess for 3 years until I screamed that I wanted Clozaril implemented. Do some research here and elsewhere, but that is what saved my son’s life 100%. I understand the barely graduating as I had to put my son in a lock down in Texas (were Californian) to graduate. He was a hot mess - completely reckless, manic, agitated/aggressive, delusional, awkward socially and complete with a heavy dose of anosognosia (a symptom where he is unaware to acknowledge his symptoms/illness). He knows that if he stays with me, which he loves and I spoil him greatly, he HAS to take his medication. It is not negotiable at all, period. If he even mentions that he wants to skip his med, I show him the shelter list/phone numbers. I have been to so many SMI seminars and I’m always told that early intervention is most important and key to a successful recovery. It’s been 1 year and NO hospitalizations - amazing! But knowing that the meds could stop working anytime, I’m still holding my breath, like so many others. Best of luck finding the right medication for your son, it’s no easy job, but I find that parents have the strongest fight in them. Xo

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Oh, and if you haven’t already, educate yourself. Most important, if you haven’t already, attend a Family to Family class at your local NAMI Chapter. We all probably spend tons of our time researching. I’ll put a couple reputable links below:

Here’s another great one that we all love …

https://www.treatmentadvocacycenter.org/

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Oh, and yes, I use bribery - money! Definitely works!

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I can relate to that , i use it all the time .

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Welcome! I agree with others that recommend Clozaril (clozapine). It has been a miracle drug for my mom who has had SZ since her teens and is now 76. She had a life because of Clozaril. It wasn’t always easy and she still had hospitalizations but it was much more tolerable. He will need a monthly blood draw to check white blood cell count but it’s worth it. There’s lots of wonderful parents on here to offer you support. You are not alone. I think the next step is different for everyone. Do your research on meds and find a good doctor you trust. He will need support and YOU will need support. Being a caregiver is a heavy burden. Take a deep breath and know there is hope. One day at a time.

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Sorry I joined too; however, need support. This has been a grueling year. My son has anosognosia and is in complete denial that he is ill. Of course he doesn’t want to take meds, he is not sick.

We did tell our son if he wants to stay, he has to take medication. He left. Maybe not the wisest decision on our part but we are definitely at an impasse. He is spiraling into psychosis and we can’t communicate. I will read the book recommended: I’m not sick. I don’t need help. Hopefully, gain some insight myself.

Thanks for your support.

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I will definitely read the book you recommended. My son has anosognosia. We did drive a wedge by pushing the medication. We didn’t know any better, just trying to help him. He decided to leave. He’d rather be homeless than take medication. We are basically waiting for a phone call from the authorities.

Praying he will be ok until we can get him some help. Feeling helpless at this point in time.

@kajlang, I know it doesn’t seem like it now, but the best thing that can happen to your son is being picked up by authorities where they will hopefully take him to the hospital, and where hopefully the medical staff will see how ill he really is and admit him.

My son left on foot 6 years ago, didn’t come home for 2 days. Police found him sleeping on a hot car (this was in June), with his face down on the hood of the car. He still has a scar on his cheek to this day from the burn. The police found him, and they did the right thing. They didn’t bring him home, they didn’t take him to jail, they took him to the hospital. Hospital staff called me that night to ask if I suspected my son had been using drugs. I said absolutely not and that it was a mental issue, and that he had not been well for years, and that I had been trying to get him into a hospital or a doctor for an evaluation/meds. They said they could not tell me anything because of HIPPA laws, but that my information to them was very helpful to determine the next course of action. I did reach out to them the next day, and I asked if it was drug related, all they said was, “no, you were correct. No drugs found in his system”.

From there he was admitted to a long term psychiatric ward and stayed for 3-4 months where he was evaluated and where they found the right combo of meds for him.

When I visited him in the beginning he looked at me with hatred and hostility and anger. As time went on, the longer he stayed, the softer he became.

He came out of the hospital a different person (in a good way).

We have had a few major setbacks since that first time, where he ended up back in the hospital again several times, mostly because he decided to cold turkey and stop the meds. The right med is everything.

Today he realizes he cannot just cold turkey the meds, and he also realizes he needs them. Very thankful that he knows this. It took a lot of suffering on his part I think to make him realize. My son went thru hell, as I’m sure some of the other sz loved ones on here.

Please know that your son being picked up and the police hopefully doing the right thing and taking him to the hospital and not jail is the best thing that can happen to your son. With the right meds, you will see your old son again.

Praying for his safety and him getting the help he needs.

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I’m new here ( so bare with me) but unfortunately not to this struggle. I wish I had some words of wisdom, but like you kajlang, I came for the support and perhaps insight from others that may be helpful/useful. I feel your pain and empathize with what your going through. I’ve done the same (med’s being a condition to living at home) only my son wouldn’t leave, I had to throw him out. It was horrible, for all of Us, but of course at the time I didn’t know what else to do and thought it might be the “tough love” he needed to know how serious I was about his treatment/recovery. It didn’t work. He’s home/safe … but without treatment :confused: I have you and your son in my thoughts … and prayers.

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Thanks for the support. You are right, and we have tried several times to get Emergency Petition but not enough evidence of harm to self or others. He has been picked up by the police multiple times over the past month and brought home.

As you all know, sitting on the sidelines is heartbreaking. No control and unable to direct the course of action. Praying for strength and hope.

I think assuming her son suffers from delusions and hallucinations, being with schizoaffective, that it is possible to argue with his delusions. I have tried to reason with another forum member on the diagnosed forum and have found some success despite her very strong delusions being the dictator of North Korea, etc. Her delusions are persistent, but I managed to make her see things differently briefly, so I would say it is definitely possible to try to make your loved ones see they are ill. The problem is that most family members have not developed the cognitive behavioural therapy skills necessary to dig deeply into the evidence against your loved one’s delusions. If your loved ones have a delusion that needs to be taken apart by the evidence, feel free to write to me.

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@kajlang This is when a strong faith in a higher power can make the world of difference for you and your family and you hand it over.
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

While you wait for his return, is it possible to look for a long term care facility that he can go to to get help like @mbheart mentioned?
Being proactive when feeling so helpless and hopeless helped me get through the fear and agony of the unknown.

I will pray for your son’s safe return and this to be a new beginning in your family and his healing process.

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I’m sorry to hear. This is definitely a huge cross for our loved ones to bare.

@lirik HI !
I agree, by using the right cognitive behavioral skills, logical questioning with someone who is delusional can work very well. We practice fact-checking a lot here at home. I think the fine line for success with this is how open the person is to the discussion of their beliefs and thoughts and how much insight they have into their illness.
The author Milt Greek writes extensively about understanding the origin of a persons delusions and how to help unfold them.

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I’m so sorry, there is no easy button here. I guess I’m lucky to be in this position with my son, but it did take years. He spit out meds and refused them for quite some time always causing severe psychosis. It was hell, as you know. I educated myself quickly (NAMI) and learned how to change my behavior, not question delusions, just go with the flow and not get upset about much (because he mirrors upset behavior and things can get out of hand quickly). I had to educate his loved ones as well and we now all follow these rules and our lives are manageable, even quite enjoyable. He still has his ups and downs and unpredictableness, but he is lovable (as my BF says) and is flourishing best he can in the community. Read Dr. Amador’s book, attend NAMI Family to Family find, allies dealing with the same issues and research, research, research! As exhausting as it can be, never give up! We all started in your position, some of us are doing better than others, but come here often for insight often and we’ll help best we can. Xo

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There are therapists that specialize in CBT and psychosis. Look on Psychology Today’s website and add specific filters and therapists in your area will populate. This is a link to the Los Angeles Psychology Today and therapists that specialize in psychosis. Hope something helps! https://www.psychologytoday.com/us/therapists/psychosis/ca/los-angeles

Hi,
My son became sick with schizophrenia when he was 15. His school sent him to a residential school in Utah. Upon returning home, he rotated in and out of the hospital.he is now 22.
After many years, I was able to get him into a residential treatment program. Which has helped him tremendously!!! (He’s been there 3 months now)
Here’s my advice (what I did that worked)

  1. get him on disability (SSI) this will open many opportunities for him to get help.
  2. see if your county has a mobile crisis unit, you call them whenever he is psychotic. They come and do an evaluation, then THEY will call the police and oversee him being taken to the hospital. Call them now and explain your needs
  3. while in the hospital, try to get temporary Conservatorship .
  4. keep calling mobile crisis unit EVERY TIME, he is unstable.
    The more hospitalizations, the better chance of having the county help.
    THE MORE HOSPITALIZATIONS THE MORE HELP AVAILABLE FOR HIM!!!
    Keep that in mind!
    When he is taken to the hospital, you go there after, drop off a one page letter about him.
    Name
    Age
    Medications
    A brief history of his mental illness
    Diagnosis, and which doctor diagnosed him
    A request for him to be hospitalized
    Good luck. Contact me if you have any questions.
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The police can be very helpful and the more they get to know you and your son, the more they can help. In my case, it was an arrest of my daughter for running in and out of traffic on a busy street that led to a compassionate judge who asked me what help I needed (medication for my daughter) and court ordered medicine, which she is still on (since Dec 2018 now). Before that arrest (her 2nd), the police had been to my home over 40 times in 2.75 years.

While you are sitting on the sidelines, read, read, read, post on this site, and go to support groups at NAMI if you can. The more you know, the better you will be able to exert control when the opportunity arises. And there WILL be pivotal moments where action on your part is needed to get him care, money, medication, etc.

Keep hoping and praying for strength.

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