How to initiate help at the very beginning?

This reminds me of a thread on the DX forum many years ago (I don’t participate much any more) where people were trying to describe hospitalization to uninitiated person who was recommended she might benefit, but was trepidatious to go because of misinformation in media. Most said it was similar to summer camp, and I can’t help but be reminded of Allan Sherman’s song, A Letter From Camp (Hello Muddah, Hello Faddah) in your son’s case.

It’s been a long time for me, but when I was hospitalized your day was structured into communal group events like meals and exercise and such, and ‘activities’ which were smaller groups focused on interests or therapeutic activities and some free time. A day or two after you get acclimated, staff gives you a schedule of events to go to. I found an alternate schedule printout of mine as I was leaving which was better tailored to my interests (it had numerous music therapy sessions). I’d been working from a generic schedule I received after admission, and was unaware it was updated. No one seemed to care, and I was sometimes solicited by friends to attend their sessions. In a sense it was a bit like work or hobby conferences with breakout sessions and such, but with more guidance and structure.

The staff would opine to some patients that they’d miss hospital after they left, because they wouldn’t have activities set up for them and friends to hang out with etc. I think this is a void the clubhouse system tries to fill, but I fear these organizations are suffering under COVID.

I was already thinking that after discharge it might be tough because he wouldn’t have access to those structured activities. They do have an outpatient program with groups, but they are currently just via Zoom. COVID is making all of this more complicated.
I appreciate your responses so much, @Maggotbrane . It really helps to hear from someone who was/is personally affected. Regarding you saying earlier that you were actively trying to conceal your symptoms, I think it is very possible that my son was doing the same. And that he was trying to “fix” himself.

Dearest @kitmom, your experience with getting your loved one hospitalized is all too common! I would have left the ER, too, after all that you did and you were not allowed to be with him in the crisis area, and with the assurance that they gave to you. (I have a similar story re: missing a mental health court in a far away state where my son was hospitalized. I had been staying with friends and driving 2 - 4 hours round trip daily to visit him at the hospital for weeks. I finally traveled home for a few days (over a holiday) with a return flight in time for for the MH court date, only to find out on the day of the court date that he wasn’t on the docket. My non-cancellable return flight home was in a couple of days, and I knew this hospital wanted to keep him, so I made the difficult decision to fly home instead of stay for the next court date in 2 weeks. I was devastated when I was notified by phone the judge had ruled that he be DISCHARGED!! And he was still refusing meds! However, I rather doubt that my presence would have mattered…)

What a nightmare it is, indeed, for so many of us. Each moment can be unpredictable…the illness and the person can change. I think the best news with your current scenario is that your son has had some recognition of his need for help. I hate to tell you, but there is no assurance of how long the hospital will keep him. Once he is “stable” (I would estimate typically 7 - 10 days, but could be less or could be more) and especially if he WANTS to be discharged, they will discharge him. Ideally, your son will cooperate with the treatment plan the hospital recommends, and will connect him with the appropriate resources. Keep us posted…some times this journey is two steps forward and one step backward or any combination!

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One thing I recommend for families trying repeatedly to get their loved one involuntarily admitted for psychiatric treatment…prepare a document ahead of time that summarizes your loved ones history…hospitalizations, medications, providers, psychiatric episodes. Especially include things that historically and currently point to “danger to self” or “danger to others” (or whatever your state law requires for involuntary hospitalization). Keep it updated. Then be ready to call the crisis unit or 911 at the exact, often tiny, window of time when your person truly meets the criteria for involuntary commitment, and you hand them the document at that time (or email/scan it to them when you make the initial call). I believe there is added credibility when there is a history of harmful behavior, and it is IN WRITING. Use every word you can think of that truthfully indicates HARM.

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Very very good advice @hope4us .

In the family-to-family NAMI class I attended, they recommended keeping documentation in a notebook of every instance of psychosis. In my notebook I noted all days of weird behavior, like a journal, including police visits, medications tried, etc. It covered years worth of events I would have otherwise forgotten. From that notebook, I constructed (many times as situations changed) a one page concise document that I gave to every different medical provider or the police over the years.

I still have that notebook. Just seeing that diary of events grow helped me to stay on top of the feelings that invaded my own mind when I was doubtful or feeling guilty trying to force care on her. When I look at it now, I no longer feel guilty, and am happy it helped to get my daughter onto treatment.

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I have a similar collection of notes, although hardly as organized as a notebook. I call it my crazy file. Pocket notebooks in which I recorded dreams, scraps of paper with sketches and song lyrics, computer printouts, one-sided dialogs to my “voices” (I was under the delusion that people watching me could see into my home and read what I was writing) , cryptic emails I wrote to myself assuming authorities would read them, admission and commital papers for hospitalization as well as schedules and discharge plans. Handouts I’d received from psychiatrists and psychologists, etc. I keep it in a fireproof safe.

It’s a record of how far I’d come, how I got there, and a chronicle of my evolving conspiracies. At times I have trouble understanding my own notes, since paranoid delusions unfold like Byzantine detective stories like something out of a David Lynch movie. I haven’t made additions to it in many years. I abandoned it after I stopped seeing my last psychologist, and settled on seeing my present psychiatrist for a hybrid of psychiatry and psychotherapy.

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Thank you for the idea about the notes. I have written stuff down already, the behaviors and my calls and attempts to get help.
So far he is still there voluntarily and calling a few times a day. He is wanting to come home though and just transition to their intensive outpatient program. Sadly that is only virtual right now, which is not idea. I also don’t think he’s ready for discharge anyway. But he sounds better and definitely right now agrees to continue with everything after he gets home.

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My son was once in a residential treatment program and they warned the family to expect a phone call “Mom, please come get me. I don’t want to be here anymore.” And that is exactly what happened. (Unfortunately, it turned out that his mental state was going downhill, even on medication, and he ended up in the hospital again a few days later.) So, it is probably wise not to rush in too soon. Hopefully, your son is truly onboard with the outpatient program when that time comes.

I am so very glad of how far you’ve come, and how you are helping others now.

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I do hope that your son stays where he is until doctors feel he is ready to leave. Full time in person care is best to help the transition out of psychosis, and I wouldn’t count on him staying with an outpatient program, as many I’ve known who started one dropped out as soon as they could. My daughter only went twice once released from the hospital.

So today he called home and spoke to my husband saying he can go home tomorrow. I thought he was just projecting, but when I spoke with him in the evening he said the same and it sounded pretty convincing. Except that we had heard nothing at all about this from the hospital. When I called them to find out if he was mistaken or actually supposed to be discharged, it turns out that he was on the discharge list, but no notes in the chart about it other than that he will stay until Tuesday, which is tomorrow. The nurse said he wouldn’t be discharged without follow up appointments in place, and that is what the doctor told me last week as well. We are a little bit in shock, and his younger sister is pretty upset because she is sure he isn’t ready to come home because he doesn’t sound like his normal self and was still fixating on something he was obsessed with during the episode at home.
How stable would I expect him to be in order to leave there and continue treatment from home? How often would be expected for psychiatrist follow up and therapist visits?

@kitmom I can only speak from my own experience. My son was recently released after a ten day stay following a suicide attempt. I was told that because he was not considered a threat to himself or anyone else, they had to left him go. They provided numbers to call for follow up care and when I called those numbers I was told no one could take him. Within three days he had stopped taking the medication because of the side effects and refused to see anyone even if I could find someone. So basically we got nothing out of his stay in the hospital other than a desire to never go back again and the knowledge he could manipulate the system. If we were going through this again (and we probably will be!), I would be so much more focused just on getting him to stay on the medication. This alone is a huge accomplishment. I think most psychiatrists only see their patients to monitor medication, so visits are not too frequent but may depend on the medication. So much more than medication is needed for recovery, but it is a very important tool. Wishing you the very best outcome as you transition.

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These are typical situations. Hospitalization, stabilized, discharged. If your loved one is among the 50% of persons with SZ who are not able to see themselves as sick and needing help, this is often how the story goes. This takes a lot of patience and perseverance, and always putting your safety and that of the rest of your family first. HOWEVER, with repeated instances of disabling or harmful behavior, with repeated hospitalizations, there is, I think, greater likelihood that the person will be kept longer or recommended for another program, such as an AOT (Assisted Outpatient Treatment) in locales where they have them. You can ask (push) for this if available. What Is AOT? - Treatment Advocacy Center
For some of us, it was eventually a matter of telling the hospital that our loved one could not come home (because we knew he would not get better and it would be a repeat of the same thing). Sometimes when faced with no other alternative (except something like a homeless shelter), the person will agree to other solutions. There are group homes and residential treatment programs, but the person has to be "med-compliant. Sometimes, the person will agree (especially if on a 30-day injectable) to be med-compliant and that could start the process. It just depends on the person, the facility, etc. Keep the diary This is also why learning how to talk with a person (who cannot see himself as sick or needing treatment) is important. Keep the diary, and by all means, read the book and watch ideo of one of many of the author’s (Dr. Amador) TED Talks also linked below…
https://amzn.to/3kJFcw7 (Amazon: “I Am Not Sick; I Don’t Need Help” book)
I’m Not Sick, I Don’t Need Help! | Dr. Xavier Amador | TEDxOrientHarbor - YouTube

@hope4us Thanks for the reply. They do have an intensive outpatient program he wants to be in. It is 3 hours a day, but unfortunately all virtual due to Covid right now. He says he knows he needs to keep taking his medication. I’m just not sure on what level he really realizes it.
I’m waiting for a call from the doctor right now, after speaking to a nurse and his social worker as well.
thanks for the link on the TED talk. We do have have the book already.

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Thank you for your insight. I will buy the book today.

Police officers in her area are (somewhat) trained in dealing with mental illness. A Sz young man on our street was shot by police (and lived) when he came out of the house holding a knife. Training was implemented shortly thereafter.

The officers have been frustrated with the situation as well. I call 911 because my daughter is experiencing a psychotic episode. The police come and see her behavior but unless she is a danger to herself or others, they can do nothing.

In one instance, Amanda came home from her “drug friends” house and she is acting VERY strangely. Licking the cover of our hot tub. When I asked what she was doing she got this strange smile on her face and with glazed eyes said, “Nothing, just wanted to see how it tastes.”

My husband and I told her we were taking her to the hospital but she refused. We then told her we would call 911 if she refused to go to the hospital. Well, she refused so I called 911. She must’ve heard me call because she she got in her car and left.

I was frantic and called her psychiatrist who explained that Amanda was experiencing a psychotic breakdown. The police show up at my door for the umpteenth time and I explain the situation.

I have her psychiatrist on speaker phone with the officer. She tells the officer that Amanda is experiencing a psychotic break. He called in her license plate and within 5 minutes they had her pulled over and gave her a ticket for DUI because she was driving erratically!!!

At this point, I have stopped considering law enforcement a partner in this situation.

The laws need to change for Sz patients.

That is really tough. Here the police doesn’t touch a person in a mental health crisis. They call the mobile crisis intervention team if you are lucky, but involuntary hospital admission doesn’t happen unless the person goes voluntarily to the hospital. And even then they might send them home. Just happened to use a couple of weeks ago.

Oh, I feel for you. The police acted quickly, pulled your daughter over, but were unable to see behavior that warranted arrest. She must not have been acting strangely enough at that moment for them to hold her. I don’t understand only a ticket for DUI however, here in Florida she would have been arrested. Florida is very tough on drunk driving. The key is that police must actually see or hear at the time they are with a person an active danger to self or others. Perhaps your daughter can “straighten up” when confronted by an officer. My daughter could 90% of the times they came to our home.

Dr. Amador’s LEAP process could help you in getting your daughter to implement changes over time. I’m glad you are getting "I’m Not Sick, I Don’t Need Help.

Oh my gosh! Thank you all for your replies. I am sitting here with tears in my eyes as I read them, because you are telling my story.

I haven’t heard from my daughter or her bf for four days, since he picked her up at the hospital. I am taking that as a good sign.

Holding my breath (again).

Hi, I haven’t commented yet on this stream, but wanted to give you a bit of a heads up. This may not be a problem for you, but it was our experience. Our son developed schizophrenia, and so much of your story mirrors ours.

It was difficult for us to ensure that our son had taken his oral medication. At first we gave it to him ourselves each day and tried to watch to make certain he actually put it in his mouth. Even then, we weren’t sure he didn’t spit it out most times. We decided that he might be a bit resentful, as a young adult, that his “mommy” was handing him meds to take, so we gave him management of his own meds, asking him each day if he had taken them. Of course, he always either said “yes” or didn’t answer at all.

As things progressed, we began seeing the symptoms returning–irritability, wandering, mumbling about odd things, paranoia, hallucinations. He vehemently insisted that he was taking his meds. While he was outdoors with his dad, I went to check in his room: he had a med bottle that was FULL TO THE BRIM! This had to be three months worth of the med. (We are actually blessed that he had saved them, rather than just pitching them, or we may not have known he hadn’t been taking them.) We confronted him, which made him angry. He also, at that point, refused to go to the psychiatrist, as he “was fine.”

All we really had was prayer to navigate this. Shortening a long story, he eventually agreed to go to one of the male psychiatrists he had previously seen, as he thought the lady psychiatrist he was now seeing was a “pill pusher.” It took some doing, but this doctor helped him to decide to try an injectable medication. It was amazing for us, as we knew he had the med he needed and didn’t have to add stress to our daily routine with questions about taking the pills.
Now we are at the point that he needs a pill in addition to his monthly injection, but we have found that just laying it on the counter and letting him know it’s up to him whether he “needs” it or not, has been working. Sometimes, as things get rough for him, he even asks us for the pill. I also put a multivitamin and a D (telling him it will help prevent Covid) on the counter with the medication. He seems to happily take it–sometimes not right away, but eventually is better than never.

Hopefully, your son is okay with taking a med by mouth with no problem. Often, though, when they start feeling better, schizophrenics seem to think they don’t need the med any longer. Much like they were before the diagnoses. The injection is very pricey, but my husband proceeded early with getting our son on medicare, so they approved this method through the psychiatrist.

I just wanted to make sure you knew about the aversion to taking meds that some schizophrenics experience.

Best wishes.

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So far taking the meds hasn’t been an issue. He wants them at 9:30 pm, to be asleep around 11. We are only two days in though, since discharge. Things are still kind of rough, there isn’t much insight, even though the psychiatrist said he had quite a bit. I suspect he was saying some things and cooperating just to get out of there. Please cross your fingers for us.

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