My Son's First Time Inpatient - Worst than When He Went In?

Family
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It really is day to day during acute psychosis and stabilization.

Depending on the person and the extent of the psychotic episode/break, according to everything I have read (including “anti-psychiatry” books and articles, which I hate), APs should be on board for at least six weeks to one or two years and always tapered down about ten percent at a time, dosages declining maybe once a month, with doctor approval and oversight.

Since your family member got sent to the other ward, he probably did something in response to his symptoms. This happened to my son last month and the medical unit’s report differed dramatically from my son’s, even though my son was definitely telling the truth from his point of view. The staff was also telling the truth and both versions actually mesh seamlessly. My family member simply did not understand what was happening or why because he still had many positive symptoms of psychosis along with a huge amount of stress and distress.

I too am currently in the situation where a day (or hour) of calm makes my day good and a setback has too many difficult implications to process. It just takes awhile to stabilize after acute psychosis, usually at least two weeks to one month, sometimes up to six weeks. And that’s if the meds work. Then there is a one to two year healing process if relapse does not occur. My son made it a year and a half between severe episodes. After this severe episode, the healing needs to start again.

I hope you somewhat trust the doctors and other people working with your son. They are trained, have chosen this field, and are really doing their best with the resources available. It helps me to remember that everyone is doing their job and the majority really do want the best outcomes for people in their care.

Yes, you are right and so is everyone else on this forum that none of our family members are receiving the necessary medical care and social supports they truly need on a consistent basis. There’s really nothing we can do about that. The resources do not exist, even though everyone in the field knows what people with sz actually need. I tried again and again to get my son into the hospital during the build up of this recent episode and never could. I begged for involuntary commitment and instead of that, my favorite person on earth almost died and lost so much I cannot even bear to reflect on the future.

I hope for good days and good long term care and recovery for your son. And all comfort and care to you.

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42

Thank you so much. Believe it or not, after 12 years of dealing with this, and all the reading I’ve done, you’re the first person who explained a 2 year healing period. Thank you for that - it is very helpful information to have.

My biggest worry right now is that he’s reached the point of diminishing returns, and his stay will start to do more harm than good. However, I think if they can move him to a step-down unit and let him outside a little, he’ll be a little less upset about being there.

Or, he could be out as soon as noon tomorrow.

As far as my trust goes, I would trust them more if I knew more about what was going on. I don’t doubt that they are doing what they think is the best thing for him - no doubt at all - but, I also know that even the best doctors don’t make the best decisions for every patient, and they don’t know him - he’s also hard to get to know. So, I have very mixed feelings about them.

His regular team of doctors, that I know, I trust.

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I see, I know it as an ‘elopement risk’.

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This hospital has a dedicated unit for the military - I guess that’s why they call it AWOL there.

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I am sorry I have not been on this site all week. I know it has been a terribly hard week for you both. But trust he is in a safe place and is getting some help (maybe not as much as you want).

  1. In the future, if he goes in again and you are with him when they admit him, ask for the HIPPA form up front when you are with him and the admitting person. If you discuss this prior to the admission when he is well- he will sign it and not fight you as you two have an agreement that you can help him better if you have all the information when he is getting treated. I hope by now the form is actually signed!

  2. When he is well get a power of attorney for his general affairs and for his medical affairs- 2 pieces of paper and have them signed and notarized. Present them to staff and you usually can skip the HIPPA forms. I tell my son that I need them to help him when he needs help but I won’t use them to run his life. He easily agreed- when he was well.

  3. Ask for quick acting anti-anxiety meds to be ordered (you will want them when he is discharged too) so that if he is having a hard day - he can ask for them. They are PRN (as needed ) meds. I learned about them in an ER once.

  4. Remind him of the small progress he has made and that the hospital is where they can change his meds and monitor that he is getting well. I did this daily when my son was hospitalized in May. Also after he is out remind him that the hospital is the place to get help and not to be fearful of it. My son hated it and complained but agreed that he was better when he came out than when he went in. I used the same rational to explain to him that he needed outpatient for 6 weeks after - so they could monitor him several days a week. He said it was a waste of time but he would comply. He is 25.

  5. Also if you are not getting responses - ask who is the next in the chain of command, I learned about floor nurses, charge nurses and the patient advocate. Call them all. I finally got a sympathetic ear to march into the doctor’s office and say that he needed the PRN anti-anxiety meds due to symptoms even if his old chart did not have it listed.

  6. I learned in the beginning (first several hospital stays) that if you TELL them info they can listen even without the HIPPA. That was a big step to share what was happening up to that point.

  7. I also have a very long ( 8-9 pages) word document that I record all the meds, hospital stays, doctor names, med changes, med reactions, etc. This is also good to give them for each admit so they have a history. We were in so many hospitals there was no consistent record other than mine.

  8. Question: I am glad they you still have him on insurance from your work. My son turns 26 and I am still trying to find out if someone can tell me if is a law that we can cover them after age 26, as they are disabled. He was disabled before age 23 so Social Security now has him on SSDI under his father’s social security when he retired late last year. But I need to keep him with good insurance.

Hang in there, get the rest when you can, visit as much as he and you want, it is ok for both of you to take a break. He hates you to see him this way too. This time will be behind you and hopefully he will be feeling better and home soon.
Hugs to you both.

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46

I don’t know if it’s a law, but I’ve had no problem keeping my son on due to his disability.
Before all the Obama laws came into effect, I had to do it when he turned 18 - it took a little while then.
This time, I did it again before he turned 26 (last year) and it went very quickly.
Once I got the paperwork in, I found I out I didn’t need to do it - my employer still had it approved from when he was 18.

The first time, we had Cigna or Southern Health for healthcare & Aetna for dental.
Aetna approved very quickly, the healthcare company drug their feet, lost the paperwork, told me I had to have a court declare him incompetent, all kinds of craziness - I finally went to our HR dept & said figure it out or I’ll hire a lawyer. It finally got figured out.

This time, our healthcare is United - we breezed through it & they couldn’t have been nicer.

Call your insurance company & ask. They will send you a form for the doctor to fill out. Make sure that it says he can not maintain consistent full time work even with medication and you shouldn’t have any problems.

Make sure you get the paperwork in BEFORE he turns 26 - I don’t know what happens if you’re late, and I don’t want to find out.

I can’t remember what I had to fill out, but I attached a letter detailing his symptoms, why he couldn’t work and what a typical day was like for him including that if he could bring himself to walk in a store, he could not go through the checkout register 99% of the time. That he would hear people say bad things about him (that they were not saying) while waiting to see the doctor. That he often would not shower or change his clothes for days. Whatever I could think of that would be a roadblock to working.

I think I also added that he had tried classes, but could not complete them due to his illness.

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As I read your entry, it is as though my son is in the hospital again. I can remember the same feelings. You are doing great at representing him to the best of your ability. Hang in there and do some things you don’t get to do like shop and stay out late. God bless

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I’m cleaning, and trying to work - thankfully, I have a very understanding employer.

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Thanks for giving me advice on insurance for him after age 26.

I agree with Mom2. When we read this we feel the same as you as we have been there too. But each of us has something to offer from the trial and tribulations they have been though. You are the best advocate for your son (no mater his age)!

Take care of yourself the best you can during this difficult time.

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Tonight’s visitation - he was a little restless, but not bad. He made a lot of jokes about how bad the food was and some other things, talked about how happy he would be to come home, and told me to have some Wendy’s and think of him.

But, he is still having some symptoms. He said he didn’t really feel paranoid, but it was hard knowing the staff was monitoring him all the time. He did know that’s what they do in any kind of hospital. Some of his delusions are still there - I don’t know about all, but at least two. He wasn’t as worked up about them, and I didn’t try to convince him they weren’t real.

I’m thinking he’s probably had those thoughts going on for a 8 months to a year, so I guess it’s not reasonable to expect them to go completely away with 8 days of medication.

I thought about leaving a message with the social worker, but the way she was talking to me about seeing some signs of psychosis, I decided not to. I’ll leave it in their hands.

She did say if they can’t release him tomorrow, she will try to get him off AWOL status so he can go outside & to the cafeteria, and maybe get him moved to a quieter, step-down unit. Then, they’ll re-evaluate on Monday.

So we’ll see - I see pros & cons to him coming home tomorrow.

Anyone care to share how their family member has been at discharge?

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51

It is our experience that the state hospital usually keep them until they are clear. It’s really been all over the place with the other hospitals. Once he was still psychotic on the drive home. Some have a 10 day mentality and that isn’t always the case. You know your son more than anyone else. I think they would have told you today if he were to be released tomorrow. It sounds like your son is getting better. I’ve heard others say the delusions are the last to go and that seems to be the case with our son also. I know how afraid you are for him.

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I think the case worker was trying to prepare me for the fact that he would need to stay until Monday at least. And now that I’ve seen him, I’m feeling better about it. She said she would call me either way tomorrow, and against my better judgement, I left her a message with a brief summary of what I saw tonight.

At least, this way, they won’t think I’m just blind to it all - I’ve picked my battles over the years, but I think I see almost everything.

Those delusions may weaken, but they’re not going to be gone by Monday. It’s been 8 days today, so Monday would make 12 days.

If they can get him off AWOL status, it would be a little more tolerable. He’s got the nicotine patch, but he wants some fresh air, a little exercise and a cup of coffee.

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53

It will vary by your insurance provider. They are not required to keep them on the insurance, but my son is on mine. I was told it could potentially be prorated or limited to services related to his disability, but he has full coverage for now.

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Today’s call: He sounded good. The doctor said he could come home Monday (of course, that could change), and they took him off AWOL status so he can go outside & get some fresh air. No idea if they’re going to bother switching units for just a few days, but he sounded hopeful & wanted to make sure I would be there on time to pick him up.

I’ll see him tomorrow so I can explain how it works now that I’ve called to find out. He’ll need to see the doctor Monday, then he can call me to let me know for sure that he’s coming home. By the time they get him organized and his paperwork together, I should be there - it’s about a 30-40 minute drive.

So, all in all it’s a good day & I have the weekend to do the last minute things I’d like to get done before he comes back and maybe get some rest now that I’m not feeling torn in 100 different directions.

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Today’s update - I haven’t received any calls from him since yesterday at 11:30 AM when he told me they said he’d get out Monday & he was off AWOL so he could go outside, but I’ll be able to see him tonight.

That’s actually a good thing - it means he’s happier, because he’s not one to call to just chat.

The case worker said when they told him, he was extremely happy about just being able to go outside.

*** If you’ve read all this, you guys may remember how hard it was for me to get in touch with the case worker. Someone gave me the wrong name, or maybe the name was switched and no one told me. Once I got the right person (because she called me), the communication & returned calls have been great. If I wasn’t so stressed out, maybe I would have thought to ask if I even had the right name.

And, the reason she got in touch with me is because the letter I wrote & dropped at the front desk during visitation finally reached her.

Edit: We went to visit him tonight - he jokingly asked if we could talk them into taking him home tonight, but was OK knowing he probably has less than 48 hours in there. Some of the delusional thoughts are still there, but they didn’t come out until we had been there for awhile. It’s very loud there, and because there is no carpeting or anything, everything echoes. I’m hoping it will help him to come home where it’s calm & quiet for the most part - get some restful sleep, etc.

He said the best thing about coming home will be to have a room to himself to sleep in.

He was also feeling bad for some of the people who were there before him and will be there after he goes - kind of the same way he felt sorry for people who didn’t get visitors.

His new roommate’s parents came to visit while we were there, right before we left. They kept calling for him, but he didn’t come out. His mother got a little mad, and was saying “this is a bunch of crap”, “they probably just gave him a pill & drugged him up” - it was kind of surprising to me that she would be giving the staff a hard time. I’ve went out of my way to make sure people there know me, know that i care about my son, and I’ve thanked everyone I’ve spoken to for being so kind to him. I don’t know if it does any good or not, but I figure it can’t hurt.

Maybe it was the first time they had been there, but I haven’t seen anyone on that ward that’s overly sedated - it sounds very much the opposite.

I left feeling sorry for his parents if they didn’t get to see him, and sorry for him if he didn’t want to see his parents for whatever reason.

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56

I just remembered something.

In 7th or 8th grade (13/14 years old), they covered mental illnesses in health class.

My son came home & told me he thought he was schizophrenic. He had always been a little anxious about things, so when he didn’t mention it again, I didn’t say anything. Later the same year, he talked to the school psychologist (he had an IEP for learning disabilities, so they talk to them every few years) and she told him he probably just had social anxiety.

He had his first psychotic break in 9th grade, at 15 1/2.

I’m not beating myself up about it or anything - just wanted to put it out there in case anyone reads this in the future because their child came home saying the same thing.

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Today’s visit went well - although he did talk about his delusions a little bit more than yesterday when his dad was there too.

He’s very excited to be coming home. Said he will continue his meds, and will work with the doctor on any changes.
So that’s good.

I’m hoping, but not betting on it, that he will improve at home where it’s quiet and he can get some sleep. There was another outburst today, this time in the room with visits, and I finally asked him if it was like that all the time. He said half the people were quiet & trying to be compliant like he was - the other half are always arguing or yelling about something.

I know tomorrow is only the beginning of a new chapter for us, and there’s a lot of hard work in our future with lots of ups and downs. I’ll be sure to update the thread now & then, for myself if nothing else. This has become as much or a journal as I’ve managed to have time for.

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I’m so glad for your son and family. Take it a day at a time. He sounds so good and glad to get out.

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Thank you so much.

I’d say that you guys have no idea how much you’ve all meant to me over the past 11 days, but I’m sure each & every one of you do.

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He’s home - hasn’t really mentioned anything delusional other than he must have told the lady in billing something about a TV job when she asked him about employment when going over the bill. I have no idea if he was telling her what kind of job he planned to get or if he already had one.

There was no family meeting or anything, although I’ve talked to them a lot on the phone. They had checked off that he could repeat back what meds he was taking and gave him a prescription for a month’s worth of zyprexa.

He’s kind of decompressing in his room, so I plan to let him be except for his meds for a few days. He’s got an appt with his pdoc on Friday morning.

I’m happy to have him home, but nervous about it too - will he continue to take his meds? will the delusions continue to weaken? will something totally unpredictable happen?

No schizophrenia or bipolar diagnosis - paperwork just says psychosis and anxiety.

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