How much clozapine is your loved one on? Don’t they have to have blood work routinely with this?
Once they are on the right meds it’s a game changer. Dont give up. Get legal guardianship or push the courts to assign a guardian.
My friend did that. After 1 1/2 violent, fearful years where her son was destroying the house and collecting weapons, she got the courts to give him a guardian because he wouldn’t let her be it. That guardian got him resources she wouldn’t have been able to snd got him Med compliant. He lives with a roommate in an apartment now with support and they have a great relationship again.
I just saw that the place in Sarasota is for homeless mentally ill. I’m told by a person who used to run group homes that Florida gives good funding for the MI. Private pay is not an option for me.
Prayers,
Jenna
They start slowly with Clozapine then slowly increase it. He now takes 475mg/day. 225 in the am and 250 in the pm.
At first he got blood tests every week, then after a short time, twice a month then once a month.
He now gets a three month supply because I asked. He’s been on it about three years.
I was afraid to start him on it but it brought my son back to me. Not completely all the time but most of the time. My son was very ill and hospitalized nearly every month. Now twice a year. And it’s usually if he smokes weed - after visits from his father which stress him out and trigger him.
Hope that helps,
Jenna
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It very well may be different laws in different states, however I was 100% able to admit my son (along with his doctor’s recommendation) without his consent in Ohio with my guardianship. That was the information that I was going on, my own personal experience. I am grateful the guardianship in my state allowed me that, because had it not my son would not be alive today. For a long while my son was either non verbal or incomprehensible, so how is that suppose to work when no consent is physically or mentally able to be given? My heart goes out to all those struggling with this.
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I am so sorry. I know exactly how that feels and so heartbreaking for all involved. If your son is under 18 then please follow the advise of many here and get conservatorship or guardianship and get the courts involved as much as possible. If he is over 18 things become a lot more complicated and can be down right unimaginable. I have been living the same thing for almost 10 yrs. My unofficially adopted son becomes angry and very scary with his behavior, there is nothing I can do as he is considered an adult and if they refuse treatment, the law will not enforce anything unless they do something illegal or harm someone, which is awful as incarceration is the last place any of them need to be as it enhances their illness and little to no help while in jail. It is very helpful to know your law enforcement and mental health resources. If you have to call 911, make sure you advise them it is mental health issues so they do not come out all aggressive with him. My son also would be great once law arrived and present himself quite well for short periods of time. They are quite manipulative with their behavior as my son knew they would take him if he gave them reason to. He is also Anosognosia and refuses to believe he is ill and refuses any type of meds. I had to have him removed several times with finally advising him he had to find other options and it broke my heart. he was homeless for several weeks but quite resourceful but also very mad and resentful to me as it is never his fault. I work with county resources and at risk homeless so I knew where to direct him but he hated me giving him any advice. He is now at a shelter and working. I know they are also trying to assist with resources for long term housing but from experience, as soon as he is on his own he starts drinking to calm his inner voices and then does not show up to work and the cycle continues. He is now 31. If your son will engage in help/meds and any/all supports that you can get the better off you both will be before he reaches 18. This is a long haul and exhausting for all involved. I have learned You need to take care of you in order to help him and that means other supports and assistance from wherever you can get it. My heart and prayers go out to you and your son.
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Yes, I was hesitant for that reason too. But basically she forgave me as she had no where else to go to live. So she could only stay mad so long or be homeless. She always chose me over a shelter. Well except once when she went missing for a month and then came home.
The first time I called the police, she had hurt me, and the police arrested her and the jail psychologist Baker Acted her. She was Baker Acted 4 more times after that, but not always by my call. Once a neighbor called on her when I wasn’t home. The last and final time she was again arrested, then Baker Acted from jail. That time she was downtown yelling at buildings and dodging traffic when the police came.
Now, on the proper medicine for 2.5 years she considers me her best friend and the “psych wards” a necessary action.
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Hi
I noticed you say that your son blames you or his father. Your psychiatrist needs to investigate the relational context of this. Your son seems to have issues/complaints that are to do with his closest and most meaningful relationships. I suggest a dialogical approach. Investigate “open dialogue” approach. Good luck
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My son is 25. Where can someone with these issues live in a safe, controlled environment? I spent my whole evening locked in my bedroom while I heard my son on a rant and cussing and banging things cuz’ I don’t know what else to do.
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He blames us for everything. We are the reason he lost his job, we are getting into his phone, we are holding him back, we are messing with his mind. For very small moments, he is rational and apologizes for his behavior and thanks us for everything that we do. Those are just moments though. I believe that it is the disease that causes the blame. He can not admit that he has the disease and feels the need to blame someone. The psychiatrist needs to hurry up and find the right meds for him!
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Hi Tippy
I am sorry what you are going through. Your son seems to be traumatised somehow. Anti-psychotic medication doesn’t solve whatever your son is going through, it simply deadens his responses. Schizophrenia is not a disease, it’s just a word to describe a group of symptoms, primarily hallucinations and delusions.
What I am suggesting is “open dialogue” which treats schizophrenia more like a communication problem. It is by far the most successful treatment for schizophrenia. Well worth investigating. (Mary Olson is active in this branch of science).
The question that needs to be asked of your son is "what happened to you? not “what is wrong with you?”
Regards
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My heart breaks for those who’ve posted. We’ve been through hell as well and are currently in a great place. It would be easy to try and forget about the shit-show we lived for 7-8 years. But I come back to this forum to remind myself of how far we’ve come. And to offer hope to those still living the nightmare. And to give love to a community that I know we’ll need sometime in the future!
A few notes, our son was extremely violent. Destroyed our home. Attacked me repeatedly. Once using a large knife to chase me while he cut up my clothing, shoes, and furniture where I sat. We still have large ugly slashes in our now-repaired leather furniture. The holes in the wall and ceiling still visible. Replaced at least 5 large TVs. Thousands in auto damage. U.g.l.y. My wife was a wreck and is only now thinking about dealing with her PTSD. My other 2 kids were traumatized by the violence but are doing ok.
Then, last year in September, our 19 year old finally had his first major episode with self-harm, which nearly killed him. He nearly bled out in the mountains in an off-grid, no utilities, no phone cabin. But somehow made it down the mountain with a small flashlight through rough terrain, at midnight and wandered into an alfalfa field near a farmer’s home. He could have so easily died or been shot or arrested but we found love and mercy in a previously unknown farmer who recognized a major problem and got my son to the hospital over 60 minutes away.
Emergency surgery, psych unit out of state, a confirmed diagnosis of SZ+, and all the usual pain and chaos you can ALL imagine (and have lived)… led us back to Texas, through two more inpatient facilities (against his will but now we had proof of SZ). Then we found New Roads in Utah. They take insurance. Focus on SZ. He was sent there - not easy - scary. But it has changed his life.
6 months in inpatient treatment. Left ADA twice and was homeless in 14 degree weather. But we stuck to our plan and fortunately he returned after both departures. He came home in April. He’s stayed compliant on his meds. He’s one of the 40% who recognize they have an illness. He still believes in his delusions- we leave those alone- but he’s compliant, going to AA, living with my older, trusted nephew, and working as a kennel tech at a veterinarian’s office. He even had a girlfriend for a few months.
Now he’s planning to go to JUCO for vet-tech certification. We’re getting him set up through a local sober-living program to do weekly drug-testing, 2x weekly AA/sponsor meetings and weekend activities with kids his age in similar situations.
From countless 911 calls, violence, destruction, fear, trauma, to getting a diagnosis and finding the right facility and meds, and of course getting lucky that he’s somewhat aware, we’re now in a good place.
My wife still struggles with ptsd. Our relationship is purely logistics coordination and surviving at present. But we have hope again. And I’ll pray for all of us to find and keep hope when it’s so DAMN EASY to run away. #lovewins
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Tippy, I’m so sorry…I know how scary this is…my son is 26 and has the same diagnosis. The only medication that has worked is Clozapine/Clozaril, the downside is he will need to go through regular bold draws.
Having said that please keep yourself safe. I know how hard this is but sadly our boys have a serious mental illness. Our local NAMI are having zoom support groups which if yours isn’t you may try NAMILA.org
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Thank you for your suggestion, however, in my situation the delusions are constant. There is no “talking” with him. He is constantly yelling mean nasty things and blaming his father and I for everything that is wrong. He believes that we have poisoned his brain among other irrational things. He accuses us of smiling when trying to speak with him and that is absolutely not happening-but he believes it to be true. So having a conversation is impossible at this time. Maybe, just maybe the meds will start to work and a conversation can happen, but not right now.
Wow! You have been through a lot. Thank you for sharing some hope to me. I keep praying we will get led in the right direction. This is hell for him and for the family.
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Hi Tippy, sorry this is happening to you. My son tried many different meds and nothing really worked. Then finally the last time he was hospitalized (in April) the doctors put him on Clozapine. It has a lot of side effects but it’s used if other meds fail. It’s made a huge difference, after 3 years of hell for him and our whole family, he is now nice to us and calm and has insight into his illness and says he’s happy to be on clozapine. The other thing that helped is, we did is not accept him back home, so the hospital had no where to release him so a social worker there found him a group home. We are also in the process of getting him on disability, which will hopefully happen soon. The whole thing is still devastating and a lot of work coordinating his care but at least he says the voices and suicidal thoughts have gone away and he’s safe in his group home. Anyway there is a lot of info on clozapine on line. Not sure if it works for everyone but it seems to be working for our son.
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Thanks for sharing your story. I sure am hopeful that I will see the better side of things soon. I don’t know what state you live in, but I am hearing that in Florida he would be released to the streets. I also tried contacting our local NAMI for assistance. 2 days I have left messages and no return phone call! Last night my son was more tolerable so we didn’t call the police. I’m thinking that we will need guardianship in place before he goes so we can be a part of his health care. So, we will continue plugging on
Clozapine was the first MED that worked. Sadly it’s often not the first line therapy. You have to push docs and keep up w labs. But it was a game changer.
My son is taking Lamotrigine, buspirone, haloperidol and benztropine. Thats a lot of meds, but for 2 nights, he has not been violent! Hopefully, this is working finally, and he will continue with them.
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What do you do when NAMI doesn’t help? Any other resources? I have phoned and left messages 4 times to NAMI to try to get some assistance on living arrangements, getting disability for my son etc. I gave several times when I am available to talk and 1 time she called back at the exact time I told her I was unavailable and 2 more messages were left with no attempts to return calls. I need, want to know what my options are for my area.
I suggest you just keep trying to call. You must remember than almost all NAMI workers are totally volunteers. They have their own lives, and often are caregivers themselves to a relative with a severe mental illness. I would just call back until you get someone live, try different times of day.
As far as getting disability goes, it is best to contact disability lawyers who give free consultations usually, to find someone who has successfully gotten some people with severe mental illness onto disability. NAMI staff don’t really help with getting disability as well as a lawyer could.