My son had 3 psychotic breaks between 15 & 18, and has been fairly stable on Zyprexa until the past year when he decided he could take it as needed - then, decided he wasn’t sick & didn’t need it. He just turned 27.
We handled all of those at home with outpatient care. This time, we probably let it go too far, but waited until he “wanted” to go to the hospital. I don’t think he understood what that meant & thought he’d just hand out for awhile. He ended up on a court ordered hold when he wanted to leave - that was 2 nights ago.
He couldn’t really talk to them much - but he could still talk to me when he went in. He even sounded coherent on the phone the next day, but when I went to see him last night, he knew me, but didn’t say much of anything. He paced the room for the whole 90 minutes I was there, mostly mumbling to himself, would try all the doors to see if he could find one that wasn’t locked. I called today - no change.
Since I’m not new to psychosis, but new to this. He’s very, very socially anxious & hardly ever leaves the house except for rare trips to the store & medical appts.
Now, I’m afraid all this was too much for him & it’s pushed him somewhere deep inside his mind that he won’t come back from. He is taking the meds for them, but I’m think he has no idea what’s going on or what he’s doing.
I’m sorry for the length - but can anyone let me know if they had a similar experience? I’m sad, scared, regretful, and wanting to hope this will be a good thing but terrified that it’s the worst possible thing that could have happened.
I’m sorry for your son and family and can hear the fear in your voice. Try to reassure him and convince him to stay on his meds. Even with a court order, they probably won’t keep him longer than stabilization. The first time is freaky for the family, and the second, and third. I know what you are going through. I believe he will come back. You two must have a great relationship and that will always help him recover. God bless you all and keep us posted please. This is a great place to share as we all know what you’re going through.
He called this morning & made perfect sense. Asked what the “order” meant and if he could come home today. I said not for a few days until you’re a little better. And, he then said, so if I’m cool, I can come home?
And, I got to say yes, take your meds listen to them, you’ll be home soon.
Plus, he changed his clothes! They took the clothes he came in on because the hoodie wasn’t allowed & I’m sure his sweatpants wouldn’t fit after they took the drawstring out, so he walked around for at least 48 hours in a hospital gown & borrowed sleep pants.
I’m feeling better now, but I know from experience that the delusions are not gone and that we have a long road ahead of us. Hopefully, he’ll stay on his meds this time and we can get him some better help.
When he’s well, he knows that he was delusional/paranoid - but he can’t see that he hears voices. He doesn’t hear the command type voices - his are always that he hears people say things they didn’t say, usually hurtful or sexual things, or that they’re laughing at him. I can’t imagine how bad that would be.
If you want to be included in discharge planning, try to find out what signed forms the hospital needs from your son (He will have to sign them, so maybe get a nurse to witness these signatures while you are visiting? Also, if visiting hours do not coincide with when the person who can give the blank forms is there, that is something else to navigate.) to include you in the group of people who can receive information. Request information about aspects of treatment plan and specifically avoid requesting any therapy notes or other normally private information you don’t need in order to help him. This allows him to maintain his privacy and autonomy to some degree.
I hope everything goes really well for him and your family.
Thank you - that’s great advice since I didn’t know where to start.
It doesn’t matter what hours I need to be there to get the right form if he says he’ll sign. I’d camp out on the front lawn if I had to. I do know who his case manager is, but can’t get her to call me - I’m assuming because he hasn’t signed the form. He’s very interested in coming home, so I’ll talk to him about it when I see him tonight.
All I need is the treatment plan - I’ve never tried to find out what he says to a therapist, and have made that clear to both him and his doctors.
I only want to know enough to keep him on track, and enough authority to advocate for him when he can’t advocate for himself. As overprotective as I am, I want him to be able to manage his life and his treatment on his own as much as possible.
Besides, I don’t know that they’re going to tell me anything that would surprise me. In fact, I think I might here more than they would. At a certain point, he stops being 100% honest with them because he doesn’t want to disappoint them because he’s not getting better or not be able to do what they suggest.
It’s very kind of him in a way, but doesn’t help him at all.
Just back from the visit - he talked to us for about an hour, then he had enough & asked us to leave.
He smiled, joked a little, still had some confusion & odd thoughts - was still checking out everything including the ceiling vents for escape routes, although he wasn’t pacing the room & trying all the doors.
He told us what he ate today, but said he really missed having Wendy’s & stuff. So, I promised to
make him my meatballs for when he gets home, plus I’d take him to every fast food restaurant we could find on the wayhome. That’s a huge deal because he hasn’t been eating. Six months ago, he was wearing size 36 comfortably in pants - today, he had on a pair of 32’s and they were hanging off him.
He doesn’t need to gain all that weight back, but a little would be OK.
He still thinks he’s never getting out - my husband is thinking 30 days - I’ll be happy if he comes home by next weekend.
He’s not so happy with the staff because he doesn’t like the rules that he thinks are for no reason other than they say so. He said most of the other patients are OK, and he’s talked to a few - although he’s sure everyone hates him - not just there, but everywhere. That’s definitely one thing I’d like to change - I don’t know if it’s a symptom of SZ, or depression, or just self esteem because it’s been so persistent.
Either way, he was a lot better than just 2 nights ago although far from recovered - but I’ll take it.
I’ll see him again tomorrow and drop him off some sketch books he asked for, then I won’t be able to see him again until next Thursday evening. At least they’ll let him call me.
Hang in there. It is very hard to see your child in a mental hospital. I have been through this
three times. . My daughter will turn 30 Sept 13th. Here is something you can count on, he is
gaining insight each time. Do not feel guilt over being informed about anything regarding his
treatment. I was told I could not sit down with her Dr and discuss her illness with out my
daughters written permission. It took time, but when your child knows you are the safe haven
for them it happens, they let you in. We have a team, nurse, caseworker, Dr. I can tell the nurse
anything, and she tells the Dr. Use the carrots you are given to do all you can to advocate for your
son. Sounds like you are doing a good job.
I just visited again for about 30 minutes - all he wanted me to stay. I won’t be able to see him again until Thursday, but at least I was able to drop off some drawing materials & a magazine.
He looked good, seemed calmer, said he had gotten a nicotine patch and they added some of his Klonopin back to his Zyprexa when he gets meds.
He also said
– he was having bad dreams, but wasn’t telling the pdoc
– i reminded him he was also coming off suboxone, pdoc should know from chart, but he said he wasn’t going to tell the pdoc that either
– he said he was going to groups, etc - whatever they wanted him to do
– he also wanted me to call his high school to let them know he hasn’t been there to get his “loot” because he’s locked up in the mental hospital (he graduated 9 years ago) and that someone in a white coat (i didn’t get a look at him) was the doctor that killed his patients in the middle of the night
– he has 3 people he talks to in there so far, other patients, and everyone is cool
And, he said I was visiting too often. It draws attention to him because almost no one else gets visits, and no one as often as he does. He said no one’s teasing him or really mentioning it. I told him to call me whenever he wants (he called me before I got home to tell me the high school’s number was on the back of one of his paintings) and I wouldn’t come if he called to let me know he didn’t want to see me.
So, good & bad - I was incredibly sad, so stopped by the cemetery where my grandparents who raised me are buried. I haven’t been there in 12 years - my son got sick months after the last one passed. I like cemeteries because they’re peaceful, and quiet, and usually lovely, but it doesn’t make me feel any closer to anyone I know that’s buried there. It was a weird choice, didn’t make me feel better or worse - guess i just needed to delay coming home to an empty house.
I should probably start a journal, and I might go see one of my son’s old therapists for myself since she kind of knows the situation - it would save a lot of time in explaining the back story. Maybe I’ll wait until I think I can talk about it outloud without crying - not really in the mood to cry through a 50 minute appt., especially when I think shey’ll mostly reassure me that I did the right thing, he needed to be there, etc.(she already did that on the phone when I called to ask her a question) I need advice & coaching much more than sympathy - I’d rather get that here with other people who’ve been there.
I’m so sorry but it does get better. Have a good cry in the shower and get it out and take time to grieve. Then start building on the new and have hope. Things are advancing fast on brain research and you will learn to take it a day at a time.
When my husband was in the hospital a few weeks ago, he said that I was calling his social worker and visiting too much ( I think maybe once in 10 days?!?). My point is, maybe that’s normal.
I think he took me off the list of people they can talk with at this point, though the nurses give me a general idea how he’s doing. I’ve decided that if I will call and leave messages with the social worker or tell them if there is something I know that they need to know or a concern that I have. I figure they can’t talk to me but I can tell them… esp on voicemail. Who knows what they are thinking that something I say will clarify.
My husband also seems to sometimes have enough during visits … he might want me to stay for the whole hour or it might only be 30 minutes. He gets really bothered by all the cameras and he’s sure our words are being recorded, as well as feeling very uncomfortable talking while being watched by the staff. Maybe your son feels like that? As for my husband, I’m not sure how much is paranoia with being watched and how much is for real given the amount of cameras. It seems to me that while necessary it feeds those delusions.
Oh, one more thing. The pdoc DOES need to know about the suboxone. My husband has a history of substance abuse. Unless your son had tapered down, and it sounds like he couldn’t have, he’s having withdrawals. I know usually Valium is prescribed to help that, but it’s definitely part of the picture. I’m not sure how you can get the Dr that information but I would bring it to his attention if you can. Suboxone is a miracle, but a hard miracle, if you know what I mean.
When he went in, we took all hims meds with us, so they should know, and after a couple days of just Zyprexa, they added Klonopin back as well, plus they gave him a nicotine patch. Hopefully, they noted everything.
I don’t know when he stopped the Zyprexa before he went in the hospital - I’d been trying to get him to take it for quite some time. And, as I’m cleaning his room now, I’ve found a couple partial bottles sitting out, so maybe he took some here & there. However, I do know that he didn’t take any Suboxone or Klonopin for at least 2 days before he went in - and he had started taking less of it and spreading it out more, so a little bit of a taper, but not much. I know it had something to do with what’s going on now, but not all.
Today would make a full week he’s off of it, and he wasn’t appearing to have any physical withdrawels as of yesterday, so I don’t know. He’s got a weird chemistry anyway.
But, he is consistently saying he will sign the release so I can talk to them as soon as they get one to him. I’m guessing it could be tomorrow or Wednesday? At that point, I can find out who his pdoc is, call & leave a message, etc.
Wanted me to call his lawyer or find him the number to call. I explained I don’t have any information because he hasn’t had a chance to sign a release. He told me he’s pretty sure they already gave him a lawyer. I guess he’s remembering the hearing for the involuntary hold.
I asked him how he felt - he said kind of out of it.
I asked him what he’d done - he said just a bunch of BS, everything in here is BS.
So, maybe better today since he’s aggravated with being there, and that’s more normal than being ambivalent about it.
Or, maybe he’s in an I’m not sick, I don’t need to be here mood.
It’s hard not knowing what’s going on. If someone said something or something happened to change his mood, or if it’s the meds working or not working, or what.
I guess if I was in there and didn’t want to be, I’d feel the same way.
his voice sounds good.
he again wants to talk to his appointed lawyer.
people (other patients) are saying it’s not legal - black mold, he’s been pushed & hot for not staying behind a line (he’s been upset about that & trying to communicate it for a few days)
he said he’s taking his meds, and i reminded him to talk to his dr, and do what they ask, so he can come home.
i’m still waiting on the case manager to get him a release for so i can get more information about his hold, etc.
right now, i’m hoping he comes home before he gets to a place where he’s so traumatized he won’t want to work with any doctor or therapist.
no need to reply, although comments/advice is fine - i’m updating to keep track myself, until i start an actual journal.
