Hospital Won't Tell Us Anything

Family
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Hi. Firstly, thanks for being here. I am new here and very grateful this forum exists. I will try to keep this as short as possible.

My older brother has undiagnosed schizophrenia. He has been unwell for over ten years, but his symptoms before seemed more like depression than psychosis. During this time he was living with my parents, laying in bed in the dark, and was very against any sort of therapy or help. He is almost forty and has spent most of his adult life in bed… It’s sad as I type this, I am nervous to share any details too specific in case he might see this post. He won’t see this post, he is in the hospital… But we have had to be so secretive about everything regarding his illness recently because he gets very, very scary. I suppose it’s made me a bit paranoid as well.

Anyway, about two months ago he began to experience psychosis for the first time. Everything he thought was so violent, I can’t imagine how scary this must have been for him. All these delusions came out as rage towards some people in the community and my family. The last two weeks have been the most heightened. I am on the East Coast, my family is on the West Coast. I’ve been up until like 4 in the morning (1 in the morning on the west coast) basically every night talking to either my parents or the woman he was staying with or his friends or people he harassed or.etc etc. Exhausting but my parents are not good at dealing with this situation. I saw another post on here from a younger sister saying she felt like she was parenting her parents - yes, I can relate. It has been over a decade of parenting them and being the therapist/mediator so I guess I’m used to it now though.

One of his “delusions” (it’s not really? but kind of?) Is that my family is all talking about him behind him behind his back, conspiring against him and to take his sovereignty from him. Yes, we have been talking, but only out of concern. Only out of love. He cannot know that we talk though because again he gets very verbally violent and is completely unhinged, I do not trust that he would not be physically violent.

Yesterday he called a woman who he believes abused him and threatened to kill her. The police were called and took him to the hospital. I spoke with the officer on the phone and he said my brother specifically requested not to share any information with his family. As such, the cop won’t even tell us where he is. We suspect he is at a specific hospital that has a mental health branch but when we call they just say “We have no record of this name.”

I’m scared he is never going to speak with us again. I am sure he thinks that we are the reason he is in the hospital. We are not, but I am grateful he is there and I truly hope this is the first step towards recovery for him. However, it is concerning not to have any contact with the doctors. For multiple reasons but the main two are 1 - He can, at times, present very well. The police officer said if he answers all the questions normally, they will release him. He got kicked out of where he was staying yesterday so he has nowhere to go if they do release him… 2 - We have no idea what kind of conditions he is experiencing. He is very, very against medication and doctors so I’m worried they would need to restrain him? Or sedate him? I have no idea how they handle that but it all seems very traumatizing for him…

So now we are just waiting I guess until he decides to contact us. I do not think he will - he thinks we all lied to him. Which it’s hard to even call a delusion… nobody lied but we were not sharing everything with him… we couldn’t… I guess the delusion is that we are coming from a place malice. It is still hard not to feel like there was a betrayal…

If he doesn’t contact us then I guess we need to wait until he gets discharged and put on the street/ picked up by the police or something.

If anyone has experienced anything like this and has any words of encouragement. It is an impossibly hard situation. And if anyone has experience with a loved one who was resistant to help in a hospital … I’d appreciate having an understanding of how doctors handle that

There’s a lot more to it but I said I’d keep it short and wrote a novel. Thank you everyone.

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I’m so sorry you are going through this right now
I can relate to much of this with my sibling ,
In the past when he has been picked up and the officers weren’t able to tell me where he was ,
I just called each hospital that I knew there was a behavioral health unit I requested to speak to the behavioral health unit right away when they answered I would say I’m calling to speak to my brother and give his name this worked many times in the past
Sometimes I was met with we don’t have someone by that name ,or I can’t tell you if he is here or not,or we will check with him do you want to leave his your number for him ,
In the case you think you’ve narrowed down the place he’s at and HIPAA won’t allow them to say he is there you are still allowed to talk to the hospital and give a history of your brother to them.
I know it’s very frightening to think of all those scenarios that you mentioned with him being in the hospital , if he isn’t compliant yes they may use restraints sometimes what I run into more often than not with my sibling is once they get that initial psychosis down then it will be your brother’s choice if he wants to take the medicine or not and if he does not want to progress at the hospital most likely they would release him,
That’s not a guarantee though.
In situations like this try to focus on what is in your control !maybe you could start looking at places he may be able to go after being discharged shelters or programs that are around.
I’m not sure if you already have or attend nami family meetings this can be especially helpful if you attend the meetings that are local to his area because people will most likely have resources of what’s available

A lot of the meetings are virtual so you would be able to attend from out of state
Maybe your parents would be willing to attend the meeting with you

Thank you for sharing in the space I hope that you will be able to find some resources through here and anywhere as needed hopefully your brother will get the help that he needs

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Thank you so much for your kind words and advice. Unfortunately, I did talk to the behavioral health unit and all they said was we don’t have someone by that name. It is however good to know that we can still give them some context as I am almost positive we do know which hospital he is at, if he is still there. My concern is that he will be discharged and will not contact us / end up on the street. When you were unsure where your sibling was, how were you able to find them again once they were discharged…? I do not think my brother will take medication. But… hopefully.
Thank you for all the resources, I am familiar with Nami but have not attended any meetings yet. I am unfortunately on the other side of the country but I will advise my dad to go to a local meeting.

Thank you again for the information, it is so appreciated, and I hope you and your sibling are okay <3

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You could try asking that hospital where you believe he may be , what happens to a patient if they are discharged from behavioral health unit if not in care of someone.
Usually my sibling will contact me at least once and let me know where he is.
I did lose track of him once because of him not being able to hold on to his phone a lot of times he has been paranoid about electronics and either destroyed his phones or given him away,
When that happened he was actually in a state of homelessness and I knew what shelters and services were in the area I called all of those services and talk to them gave my brother’s description and tried to keep tabs on him that way.
St Vincent de Paul in the area had meals and I knew even though he was too paranoid to stay at the shelter any longer and had gotten kicked out of one that he may go to get meals during the day they were very nice and took my name and number new his description and would call if they had seen him.
My father lived in the area and literally walked the streets where he may be and had to track him down that way several times which was very very scary.
My suggestion would be to become familiar with the shelters and services that are offered around the area your dad may have luck in doing this through his local nami.
And maybe closer to the time your brother would be willing to talk to your dad .
I hope you can find a NAMI meeting for yourself also over the years the meetings have been a great support and have learned many ideas honestly I never even knew about long acting injectables until about 4 years ago even though my brother has suffered with this for over 20 years I learned through some one sharing at the meetings

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It is an extremely hard situation you are in.
First of all, you are living in the oposite coast from your brother and parents. I don’t know how much first hand information you get and you can’t do personal hands on help from that distance.

Secondly, it seems like your parents are unwilling, not able or know how to help. Do they or anyone else have POA medical or mental health for your brother? Help educate your parents-listen to them about their experience and feelings- encourage a simple resource like NAMI.org for resources.They seem to be the ones most directly involved. It’s important that they know: They are not ALONE!

Thirdly, When our daughter went through her two Psychotic breaks it was her older sister and me (the mother) who came along side of her. Your brother needs Family support. Again distance is hard but possibly a family therapist you all can communicate with online and find out how to work together. Another thing as a mother it is extremely painful and important to care for ones self. You too!

You can tell I feel passionate about this. But I thank God that Our daughter is now fully functioning in relationships and work.

Work with a therapist, if able to help guide you through these times. Take care of yourself and do one step at a time it’s overwhelming. YOU can do it!

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Thank you again both of you for the support. It means the world. Fortunately I do have an update that he is at the hospital where we thought. He called my dad yesterday, saying they were involuntarily holding him, asking my dad to go there. He said that he would put him on whatever list. My dad went only to find out that he had not been added to a list, the receptionist said again we don’t have any records of this person. My dad ran into a doctor, told him my brother’s name, the doctor went back inside and told him that my brother said thank you for coming but he does not want to see you.

My brother has his third restraining order being served to him, the cops called me today to ask where he was. It’s heartbreaking to think of him there, getting served yet another restraining order. I’m glad to know that he did not get discharged but it is extraordinarily challenging to not know anything that is going on. I wish we could talk to whoever the doctor is. Even if they can’t share specifics with us just … to know anything. Where he is sleeping - if he’s eating okay, if they’re treating him well, if he feels safe. He was so scared and so, so angry. I just hope they’re actually helping him and helping him feel safe. I am happy he is in a place where help is possible I just have also done a lot of research about involuntary hospitalization and it seems like often it is very traumatic for the patient. It’s been twelve years of him resisting any sort of mental health attention so it is kind of crucial that they handle him well. My therapist said I could call and ask for a patient advocate - do either of you have experience with this?

Julie, I’m so happy that your daughter is doing better and living a full life. That is so encouraging to hear and inspiring that yes, of course, there is a path to that. Ton answer your question there has been no mental health or medical anything regarding my brother as he has been strongly against it. He is nearing forty, so unless they were to take his sovereignty away or put him on the street there was nothing they could do. He has been unwell for about 12 years, mostly just laying down ( according to him, meditating ) in the dark, but this most recent episode was unlike anything else. He had never been so violently angry / had such horrible dark, dark paranoid delusions. That’s why I guess this is a blessing in disguise.

Though I am on the opposite coast, my brother’s relationship with my dad is quite strained, even before all this. My brother essentially ran away from him this summer so, even though he called him, I don’t think my dad can be the one to spearhead any of this. For the years my brother was laying in bed my dad really put him in a box of. “you’re sick”. He stopped seeing him as a person and saw him as a walking (undiagnosed) diagnosis. I know this was triggering for him due to his family history with schizophrenia. And my mom is quite traumatized by the last two months so, even from across the country, I have actually been the one fielding all the phone calls etc.

I guess now we just sit and wait. The third woman who received a restraining order told me that her advocate insinuated that my brother would be held for six months. I’m not sure how that person would know that but… I guess I hope he is there until he is himself again. I just hope they’re treating him okay.

Thank you both again for all the resources, information, and support. I am attending my first Nami virtual meeting tonight. It is very helpful to feel less alone. Sending both your families love and light.

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Hi. I hope they are treating him well, too. Sounds frightening and traumatic for your whole family. I have a brother who went through stuff like this decades ago.

NAMI and this forum are obviously great resources for how to help your ailing, in-crisis brother. Sibling to sibling, I would like to add: stay focused on the practical steps and try not to worry about his feelings too much. I know that’s easy to type but hard to do.

Also, he is in pain with what’s happening to him but as long as he’s not hurting anyone, you don’t have to fix his delusions. You will wear yourself out battling that verbal and mental chaos. So, when he presents no danger—big caveat—let him say or think what he wants. You can’t talk him out of any of those delusions anyway, right now.

Even from afar, you can start inserting better ideas into his mind space though, if and when you get to talk with him. Like: “Getting you to a diagnosis and proper meds is so AWFUL now but we’re getting closer to a more peaceful place. Hang in there, brother.”

My best thoughts and support to you. Good luck this week.

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I LOVE this approach and attitude! I’m convinced that even the most paranoid and chaotic want to have hope that things will be better.

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Out in CalIf. They can keep him for 72 hours. And all hospitals must have a discharge plan.
Otherwise where he will go, maybe a shelter?

My son refused meds., and mental health psych. Dr. took him to court to have his meds mandated.
If he comes to your parents and is a threat to them or himself, call cops.
Been dealing with my son since 2012, ups and downs. When he goes off his meds the psychosis returns and he ends back psych ward for 2-3 weeks.
Now he is on a once a month shot, which works, but they all have side effects.
Good Luck!

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Hi Serenity, Good to hear the shot is working. I have been dealing with my son’s Schizoeffective since 2012. He went off his meds again in April 2024 and wound up in county jail. He has been there for 31/2 months. We begged him to go to doctor and called police so many times to take him to hospital, which they wouldn’t, and things kept escalating. He has many charges on him which happened all in a few days, before he was arrested. He has burglary, unlawful entry and he attacked my husband with a metal pole. We hired him an attorney to get him in mental health court. He sits in solitary in jail due to his behavior there, and things are moving slow and no idea what will happen.

. I talked to him yesterday and he said he wants the monthly shot and he asked for it, but the jail doesn’t have it. I pray he gets the shot soon, and it is mandated, as he is never took his meds consistently, and the meds he was on never worked well and caused huge wait gain. Thanks for your post, it always helps to read. Have a peaceful day.

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Look into SSD , see if he is eligible. My son is on it and therefore on Medicare and Medicaid.

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I am praying the shot will be the answer for him to have any quality of life again. He never had been med compliant completely and his meds never worked well, either because they were not right for him or he was not taking them properly. He has been on zyprexa, risperdal vraylor and Abilify, and maybe one of two I can t recall now. It has been a long tough haul.

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Same here, due to side effects and because he is not sick, very common.

Mike has a studio apt in our house, so we can see what’s going on.
On the shot he is fine, and we all get along.

One day at a time.

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Yes one day at a time. My son was living at a condo two blocks from me and my husband, so I could check on him daily and help him as he is not functioning at independent level and didn t drive or have any social life . Now with all his new criminal behavior he is no longer wanted their per condo association. As they say in NAMI never give up hope.

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It is hopeful that your son is doing better, my son is going to be 30 in May, I hope things are going better for his birthday.

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Man, do I HATE this disorder!! My son - 32 - was diagnosed at 18 & as with all of you it’s been rocky, cliff hanging, dangerous, heart breaking, maddening… I could go on forever. I got no better words to say or help to give than anyone else here but it IS good to know that there are others that are in the trenches as we are & know exactly our frustrations & how we feel about them.

Being across the country makes it even harder for you. I’m sure your parents are exhausted & would just love for this whole thing to go away. And while you can/may play an important role in your brother’s care, you are not by means the only one. Are there any other relatives or family friends that might be willing to be part of a team for him - including you and your parents? Is there any legal path to having a Guardian appointed by the court to help/guide him?

My experience has been to search out other agencies or groups - NAMI should have some suggestions - but sometimes you have to push until it gives. Be a pest. Be the loudest voice in the room. Never be rude (I’m sure you already know that :wink:).

Some states have pretty decent social services for those w an SMI. Let your fingers do the walking - on the phone & online - & see what’s out there. When my son was in the hospital - before there was a dedicated Behavioral Health hospital in our area - I once mentioned to a nurse that worked on the floor for this type of diagnosis - about outpatient treatment from our community social service dept. and she had no idea what I was talking about. Oftentimes, doing my own research is the best way to find out what I need to know.

My son was discharged from an out of town Behavioral Health Facility in his early 20s & he decided he wanted to stay in that town. He did have some high school friends he could bunk with. But there came a time when he was living on the street - don’t know why - and a friend said to me ‘you must be worried to death’. I thought a moment & I realized that I wasn’t because I felt God had him in the Palm of His Hand and that He would protect my son wherever he was. I’m a devout Catholic & I can understand some ppl who might dismiss this, but there is tremendous comfort in trusting & having faith in God regardless of religion or spiritual belief.

There’s a saying - ‘Act as if everything depended upon you and pray as if everything depended on God’. You and your brother will be in my prayers tonight and forever going forward. May you have peace in your mind, peace in your heart, peace in your soul.

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I’m not familiar with SSD? He is on Medicare as well.

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Wow thank you so much for everyone’s support. And I am sending so much love and strength to all the families that are in similar situations. This illness is really all consuming for everyone involved.

I attended my first Nami group last week and it was so helpful, thank you again for the guidance to attend.

Unfortunately, my brother was released on Friday. No medication, no diagnosis, no money, no place to live. Since Friday it has been a non-stop deluge of texts. Sometimes friendly, more often insulting. He started a group chat with my family and the sheriff claiming we are all abusive to him.

The first night i offered him a hotel but he refused. He slept in the hospital lobby. His friend fortunately got him a hotel the last few nights. Tomorrow is the last night. My dad dropped off some food for him to the hotel lobby but he thinks it’s poisoned and will not eat it. The texts are non-stop. Much more than before his hospitalization. It’s a lot of insults and threatening to kill himself if we do not send him x amount of money by x amount of time. My parent’s don’t have any money to send him.

The 24hour a day texts are just too much. I know I don’t need to respond but they’re also being sent to my mom etc - him calling her a whore and all this. I know it just breaks her and I cannot just turn my phone off from supporting her through this. I called the hospital many times to try to get in touch with his social worker but to no avail. The system has completely failed him, and us. After tomorrow he will be on the street. It’s cold… He won’t go to a shelter because he thinks he is above that.

What do we do…

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My mom has also been staying in a hotel since friday as she is very scared of him showing up to where she lives. This just isn’t sustainable. We tried to call the police when he was threatening suicide but they said they can’t do anything about that. The mobile crisis center will only provide help if he consents. Seriously I am at a loss of what to do…

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Thank you for your prayers <3