Family and Caregiver Schizophrenia Discussion Forum

How to initiate help at the very beginning?

Hi everyone. My young adult son, on the autism spectrum, lives at home with us. He does not have a psychiatrist or a counselor. He has been doing pretty well except for his social deficits. Has a job, a car, was going to the gym etc, basically functioning quite well and is very polite and helpful around the house when asked.
He. has been suffering from severe psychosis for the past 5 days or so. He has lost complete touch with reality and keeps wanting to leave the house because of his delusional thoughts. He is also paranoid and so so stressed.
This came as a complete shock to us and I have been trying to get him care for days. He needs and evaluation and treatment but he is refusing. I actually managed to take him to a BH hospital yesterday and wait for 3.5 hours to get seen. And when it was his turn he got really agitated and insisted on leaving.
I am just so worried about him. Not sleeping. Had to leave work very abruptly yesterday because he had left the house and was texting his sister very disturbing messages (by disturbing I mean it was clear he was delusional and in distress). I am glad he reached out and was responding to texts and picked up his phone so we could figure out where he was and get him. He barely escaped police confrontation because he was making customers nervous with his bizarre behavior, but we got there before the police.
Anyway, I need to know how treatment usually starts in a case like this, where the person obviously doesn’t even know they need it. We have a call in to a mobile crisis response team and they said they’d come by today, calling us first. But they would not even take him today if they thought he needed involuntary admission to a facility. They’d do an assessment and decide whether he needs it and if so, someone would get him the following day. I guess their policy has changed due to Covid.

Hello @kitmom . Welcome to this site. I am sorry your son has taken a turn for the worse. This is a great place to come, even daily or several times a day, to read and get ideas on how to handle your own situation.

It sounds like you have done what you can in calling the mobile crisis response team and in finding this forum. Loved ones very often refuse to get help as they don’t think they need it. It is called anosognosia. Also, there are “positive” and “negative” symptoms of schizophrenia. It took me awhile to understand them, but that explained to me the “added” behaviors like delusions and hallucinations, and the “minus” behaviors like losing ability to be social or have goals. The more you can read the more ways will come to mind on how to help fight this war for your son’s sanity.

My own daughter was only saved by a) police intervention, b) forced hospitalization and c) my own understanding after hours of educating myself on schizophrenia. In my county, NAMI holds classes for the policemen and women to get trained in how to handle those suffering from severe mental illness. Many other areas do not have that benefit for their law enforcement officers.

I wish you the best outcome for your current situation and the strength, hope and faith to keep fighting for your son to get treatment. One book “I’m Not Sick, I Don’t Need Help” by Dr. Amador can be downloaded. I recommend you read it. Also NAMI might be able to help if there is one in your area.

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Welcome @kitmom.
I just want to add that the long term prognosis is usually better if help is sought during the first episode. So you are doing the right thing even if your son is resisting seeing a doctor. I know there are programs in many cities that treat first time psychosis with the goal of eliminating or reducing future episodes.
I can imagine a 3.5 hour wait for someone suffering delusions must have been excruciating. A doctor once told me anxiety and paranoia operate in lock step.
In early days, one thing that worked to settle our son’s anxiety was to tell him he was safe.
Another thing that worked for him to take meds was that same doctor telling him “you deserve some peace of mind”. That really resonated with him.

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Great tips! (“tell him he was safe” and “you deserve some peace of mind”). I will share with families I know!!

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I am sorry this is happening to your loved one and to you but you are not alone! And you are reaching out to learn. I encourage you to keep doing that! Also, it is helpful to learn the law in your state regarding involuntary commitment. You can find that here: https://www.treatmentadvocacycenter.org/fixing-the-system/state-treatment-laws. There is SO much information on this (family.schizophrenia) forum, although you may have to sort through a lot of comments and weed out the negativity (understanding that psychoses that occur with schizophrenia can be very cruel and the journey of help and hope can be very challenging, and some people have just plain given up or understandably, they just need to share and vent). Starting EARLY is definitely in your favor! You are your son’s best advocate!!

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Thank you so much for your reply. We have been in touch with the crisis team. There were supposed to come by yesterday. When they called about the time, he was sleeping, at least that is what we thought because he had been in his room for a few hours after being very restless and pacing earlier. He had told me how exhausted he was and said he was going to try to nap. We agreed to give in another 1.5 hours to let him get more sleep. Then the next time they called he was locked in his room. Telling us he was okay and listening to music. Of course we didn’t think he really was okay, but we didn’t want to aggravate him by trying to get. him to open it.
We just spent all night, again, the fourth one in a row, keeping track of his whereabouts in the house so we can keep him from trying to leave. So far distraction has kept him here, or we were able to get him to return when he was walking away from the house.
I see no other way besides forced hospitalization. And I am just so so sick about it.
I just took my first shower since probably Wedesday. I have lost 8 lbs in the last 4 or 5 days due not not being able to eat.
Thanks for listening.

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Thank you. We keep telling him that he is safe. I can not even imagine what it must be like to be in his shoes, or rather in his head, right now.
He is frantically checking his phone, messaging people on FB and thinking he has plans with them to come to the house (like to hang out).
He can’t seem to grasp the simplest information at times.
I have been reading here for a few days and have already found the program to for first episodes of psychosis.

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OMG, I just spoke to the crisis team again. They will send someone for an assessment. However, even if he does meet criteria for involuntary commitment, the police will not enforce it. They will not take him. He still needs to go through an ER for this as well. The only way to make that happen is if he goes voluntarily with us. That is a 5-6 hour average waiting time. Our local hospital’s ER is bursting at the seams with Covid patients. This is the nightmare of all nightmares.

Would he go with you to your nearest inpatient psych hospital? They usually evaluate walk ins or you could make an appointment.
My experience is that the intake counselors are kind and non judgmental and can and will admit a loved one on the spot.

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Also, the mental health crisis team may be able to help convince him to let you drive him to the psych hospital. They can be a great resource.

The place we went to on Thursday was an inpatient facility that takes walk-ins. He just ended up refusing the assessment when it was his turn. The gal that came out to get him was not very kind at all and was totally talking about him right in front of him when he shut down and wouldn’t give me his things and get out of the chair. They would also not have been able to hold him there if he wanted to leave at any time.
Apparently you have to go through the ER for involuntary commitment. And since police is not enforcing anything, you need to go voluntarily.

The crisis team came yesterday afternoon. They felt he had a psychotic break and needed urgent help. Told us to try to get him to an ER as this is the only way to get him admitted involuntarily. So we went through all of this, spent agonizing hours in the ER with me trying to keep him as calm as possible. He almost lost it a couple of times and got loud, ripping his bands off, left the ER (but came back), ripping his mask off. They said he’s not safe to leave, moved him to the crisis center, gave him an antipsychotic after he had come back in the first time he almost really lost it. They told us the county mental health person would need to see him, it could take a few hours, but he’d be admitted once they found a psych bed somewhere. Told us to go home and wait for that person to call us. A few hours after that he was calm and sleepy in the crisis center, so they discharged him without a mental health provider even laying eyes or talking to him.
I am devastated.

Oh my, I am so sorry at the lack of help you are experiencing in trying to help your son. Are you in the U.S.? It is quite a different system that the one here in Florida. Unfortunately, it takes a LOT of caregiver involvement to navigate the pitfalls of trying to find help. I’m sorry you went home and left your son in the hospital ER, perhaps if you’d been there you could have gotten him to a mental health person. I guess that you will wait with him next time you try the ER, since the ER seems to be your only path to commit him. The police came to our home over 50 time during the years of untreated psychosis, usually only calming down my daughter and then leaving again.

Stay strong, believe there will be help for your son, and keep trying to find the right path. Do take care of yourself. I understand the stress you are under, but you need to try to eat/sleep/find some peace for yourself as you wage war against schizophrenia.

I didn’t leave him there. I was there with him for hours, in the waiting area and all the way through the triage area until the took him back to the crisis area, which is the area for psych patients. The triage doc thought he had a psychotic break, which is something I had figured out already and the mobile crisis team thought as well. They said they would keep him over night, the county mental health person would evaluate him and get him a bed. Family can not come back to the crisis area with the patient. Everything was supposed to be taken care of. But there is a different ER doc back there who did not see him before they gave him the Zyprexa. So when that doc saw him he was very calm and sleepy. So they sent him home. I argued with the nurse twice about this, trying to explain what was happening but she said it was the doctor’s decision and since my son did not pose a danger to himself or anyone else at that time, that they had no reason to keep him there. I would never just drop him off somewhere.
And yes, I am in the US.

I’m sorry if you thought I misunderstood all that you did, and the waiting you endured. I knew you didn’t just drop him off and leave. However, he was not yet admitted when you did leave. Next time, and you will probably have a next time, or even many next times, you perhaps should get pushy to stay with him until he is admitted. Just my opinion, you are free to take it or leave it, for sure.

I learned, finally, after many many contacts with police and medical people, to be stubborn, obstinate, and perhaps even rude, if I wasn’t getting proper answers.

One night, years after her psychosis started, I sat in the jail waiting room for hours, waiting for my daughter to be discharged. She never came. I asked every 15 minutes where she was? Finally, one officer told me “she’s been discharged, you must not have seen her go by you.” I knew that was utterly impossible. I kept asking where she was. Finally an officer said “I’m not supposed to tell you this but she was discharged from the jail hospital, not through the regular waiting area to an ambulance and was gone.” I then asked which hospitals they sent ambulances to from the jail so I could try and find which hospital.

I wouldn’t have found out anything if I’d not been a total pain. Sure, maybe it was wrong of me to expect an officer to break the Hippa Law to inform me, or at least skirt around the Hippa Law, but I can be unreasonably demanding when I need to be if the “authorities” aren’t helping me out. And I just wouldn’t leave.

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I consider myself a pretty persistent person, but being my son’s advocate has pushed me way out of my comfort zone.
A thick skin (still working on that) and a sense of humor help. Also, as @oldladyblue says, don’t trust anyone to do anything unless you see it with your own eyes. I know this is impossible during Covid as they will no longer let you stay with your loved one. In normal times, I could sit with my son until the floor nurse came to take him to his room.
There are times I am sure they considered admitting me right along with him after listening to me. :wink:
It is ridiculous though that you and he waited all that time to have him sent home. I can only imagine how frustrated you must feel now.
I am sure so many of us on this board have a similar story. It sucks, frankly, when you know your loved one needs help and roadblocks are put up every step of the way.
Hoping your son gets to see a psychiatrist soon and starts on his road to recovery. Even if a psychiatrist says they aren’t taking new patients, if you explain this whole mess you have gone through, they might just find an opening or a recommendation for another doctor.

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Please reach out to NAMI, and the best way to communicate has to be non threatening with lots of love,support and encourgement. Words like you seem so upset? how can I help? Rather than deny their feelings and disagreeing with how they feel. My son diagnosed with SZ in 2018 behaved in the same manner and it was a devastating time. Stay persistent and advocate for his care, its a hard road especially with anosognosia and the refusal to seek help because they think they are not ill. Once your loved one trusts someone it will became easier to seek a Dr. Good luck and please reach out for further support, a caregiver needs lots of care as well.

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@oldladyblue They said noone can go in the crisis area with the patient. I asked and they said no, so I took it as fact. @Hanginginthere I’m not sure if it is a Covid rule or not. The ER was absolutely packed. I do know that they were very overwhelmed. He might not have gotten a bed there, the county mental health person would have had to find him one is what they said and it could’ve been at a different hospital.
The good news today is that this afternoon he voluntarily ( his own idea after we wouldn’t let him go anywhere without me and my husband) went back to the first BH hospital we went to for an assessment on Thursday. And he was admitted on a voluntary basis. My heart breaks for him but they said he kept calm during the assessment and the whole process of getting admitted. The lady who was updating us said he seemed confused, which made me sad. But he has been confused and not taking in and comprehending information normally for days. We went home and got some stuff for him and he had eaten dinner and was meeting other clients by that time. We decided to wait to call him tomorrow, after he is somewhat settled. The other good thing is that this place is 10 minutes from home. And I had no idea it existed until last week.

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Something I think caregivers underestimate is how confused you can get with lack of sleep because your mind is racing and working overtime. The way I’ve described this stage is a very active waking dream. Think of the disorientation you have when you wake up from a vivid dream and you’re trying to reorient yourself to reality and sort out what’s real and what isn’t, and that feeling continues for hours and hours and days and days.

I suppose most parents have experienced some sleep deprivation in the early days of caring for a new baby, but then again you probably had help and had the child to focus your attention. In my case, I’d close my eyes and rest but couldn’t sleep. I finally did, and was much improved after a day or two in an inpatient setting. There’s something to removing yourself from your present situation to a place that’s quiet that helps quell the stimulus and can allow your mind to rest. My brother (who’s been hospitalized many more times than me) had some sound advice for me that I didn’t take before the run-up to hospitalization: go out of town and check into a hotel for a couple days.

Depending on the facility, this is good progress. Being close has its advantages for visits and day passes and such. My hospitalization was actually positive for me, and was one of several turning points in my recovery. I hope he adapts well, and you both begin to feel better and a bit more secure.

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Thank you for your input, @Maggotbrane. I think this hospitalization will be good for my son as well. Unfortunately they do not allow visits due to Covid. On the other hand it might be good for us right now because he calls us several times a day. Yesterday he kept begging me to pick him up every single time. Today it is better and he says he is having some fun. That allowed me to relax a little and I actually ate a normal meal instead of teeny bits of food a couple of times a day, if that. They have a very structured program with therapy as well as recreational groups. I encourage him to participate in them and he says he does. He still wants to go home but is not asking me to pick him up with every call. We are going to try a video visit tomorrow. His SW is going to help him set it up. I think it was just too much for him to remember to got to a staff member and request it.

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