Broken Please follow our journey through trying to get care for my adult family member who has schizophrenia

I’m not writing as often as I used to. It seems there’s not much new or not happening as often. Writing catch-up posts s...
06/15/2026

I’m not writing as often as I used to. It seems there’s not much new or not happening as often. Writing catch-up posts seems to work better than frequent posts. This means posts will be longer, most likely.

So. Where did we leave off? He had a ‘job’, of sorts. He wasn’t interested in doing the work they suggested. Did they try something different? No. They just let it be for now.

We had a team meeting in early May. The administrator of the facility was interested in making big changes in his treatment plan. She touched on those changes at the meetings and we planned to talk more the next day.

What her team had talked about was that he needed to take part in his own recovery. I’ve been talking to him about this for several weeks. I tell him that I can’t do things for him that would help him get out sooner. I need him to want to do the work, too. I know that’s hard but it’s necessary.

His main goal is to get out of the facility. He wants to come home. He can’t come home until he graduates from the program. He needs the skills he can learn there if he wants to succeed in the community. It’s necessary, for him and for me.

So, the team plan is to reward him for doing certain things and encourage him to do more. He hasn’t been doing many groups. He tends to isolate in his room, reading and sleeping. The plan now is to incentivize him with fast food. I bring a meal and a drink when I visit once a week. He loves that and really looks forward to the food.

The plan is for me to only bring food if he achieves the goal set for him by the team. If he earns 10 points in a week, I’ll bring him a drink. If he makes it to 15 points, I’ll bring a meal and a drink. He can do this, I’m sure.

My first reaction was why does he need to ‘earn’ a meal for a visit with me? It’s a family visit, not a treatment session. So that threw me off. I felt uncomfortable being placed in that position. It hit me wrong. But in the long run, it has to be done. I have been encouraging him to do groups. And having activities that bring him out of his room so he can learn life skills.

I sat on the situation for a bit and realized that I need to work with the team. It’s a good plan, and I support it. I’m getting older and can’t do as much to help him as I used to. I need him to gain life skills and participate in his future.

The plan is to gradually move incentives higher. The first week, he needs to do 10-15 groups/points. The second week, it goes up to 15-20, the following week requires 20-27.

Twenty-seven points per week is the minimum needed for the program. If he can maintain 27 points for four weeks straight, he moves up to level two. He’ll get more privileges, including being allowed to go on group walks, getting door dash (from the administrator), and maybe an outing with me. That should motivate him!

At least they are working with him and are being fair about it. They have two psychiatry trainees (?) that seem excellent. He likes them. I hope they can help with this plan, too.

His med adjustments are ongoing. The changes are being made gradually. He was very withdrawn during our last visit. He said he had a lot on his mind. I think that’s what he says now when the spirits are bothering him. It’s so hard to have a conversation with him. He’s distracted. Inside his own head. We’re unable to have conversation.

I stopped taking my phone. He would use it to shop and to look up info about aliens, vampires, etc. Those topics feed his delusions. I had to stop. He’s not happy about that, but he’s so delusional. I told him this was going to happen (leaving the phone in the car) and he seems ok with it. I’m sure staff will help with that, too. We all have a common goal: life skills and graduating from the program. Well, that’s the team goal. His goal isn’t the same. But his main goal of coming home can only be met by working with us to achieve his goal.

Of course there will be setbacks. On all sides. He has a frequent delusion that he’s a vampire. It’s harmless but consistent. The admin knows this. She doesn’t want his delusions to be reinforced or triggered. I agree. My FM called me a couple of days ago. He told me he’s a lycanthrope (werewolf) now. Alrighty. I asked him where he learned about werewolves.

They played the movie Twilight for the residents. This is why he assumed the delusion of being a werewolf. That was not a good film choice for my FM. I have to shake my head. Sigh.

In his first week on this plan, he achieved 11 points. That’s pretty good and he met the requirement of 10 points. He earned a soda. He seemed ok with that. He asked about the food, and I reminded him he didn’t get enough points for a meal, but that he can do it for the next visit. I know he likes Vitamin Water, so I asked him if that’s what he’d like me to bring him. He was happy because he hadn’t had one in a while. He called me a couple of times before our visit to make sure that I’d bring him vitamin water. He was excited! That tells me the incentive might work.

His points come out every Tuesday. I hope he makes it this week. I’m pretty sure the requirement increases each week, so he needs to progress.

Wish him luck! Send him good thoughts!

Time to catch up again. The med change to Invega Sustenna from Haldol seems to be a good move. I haven’t seen him drool ...
05/04/2026

Time to catch up again.

The med change to Invega Sustenna from Haldol seems to be a good move. I haven’t seen him drool in some time. He also speaks more clearly and is less sedated. Thank goodness. The doctor had told us that it could take a couple of months for the Haldol to leave his system and the Sustenna to kick in. He’s managing the med change slowly. I’m glad.

The doc is also tapering him off clozapine. Clozapine really isn’t the miracle drug for him that it is for most. There have been times when he was more stable on clozapine than he has been in the last couple of years. I don’t know if his body just reached a tolerance and no longer helped him. For whatever reason, it was time for a change. Along with reducing the clozapine dose (currently 400mg at bedtime), the doctor is increasing Zyprexa. He’s now on 25mg of Zyprexa and will be slowly titrated up to a more therapeutic level. Once Haldol leaves his system and the Sustenna and Zyprexa reach therapeutic levels, maybe he can work on life skills.

Life skills are the most important part for him to be able to leave locked treatment. He needs to be able to be safe in a lower level of care and be able to take care of himself properly. Part of that will include finding something to give him purpose. To make him feel good about contributing to his life and the lives of others. The administrator has worked with him on a ‘job’ in the facility. I suggested he do something with people. Something at which he could share his knowledge and be helpful. He was like that before he got sick, so maybe he could find that again.

The first thing they tried was having him act as the point of contact for new patients. He could show them around and explain what goes on. They tried to ‘train’ him on that. I’m not sure what the training looked like but he decided it was too hard. So, they switched him to having a job wiping down chairs after meals. I don’t think he did that more than twice.

I can’t blame him for not wanting to do that job. If the point of having a job is to teach skills and provide a sense of accomplishment to the patient, why does it have to be menial? And how had they tried to engage him and persuade him to keep trying?

That’s something I’ve written about in the past. I was told (often) that he couldn’t be ‘forced’ to do something if he didn’t want to. So, they accepted NO for an answer on the first try. Clearly that’s not effective. But that’s how his outpatient team did it when he was in a board and care home. I don’t know if they did give it a good try where he is now. But if not, that’s what I’d like to see happen.

The other issue with him engaging in activities to get to higher levels with more privileges is that he’s not motivated by goals. If he has to earn 27 points a week for four weeks to progress to level 2, he’s not motivated. It’s too far in the future and he loses the focus quickly.

Is that just him? Are other patients not motivated by incentives for future reward? I have heard of programs (not here) that give immediate rewards for certain activities. For instance, if they make their bed in the am, they get a cigarette. Group attendance earns tokens immediately after the group is over. Those tokens are saved for Fridays and they can use the tokens to buy something at the onsite store. It seems to me that this type of incentivizing would be better for my FM. At least he’s have something in hand right away.

In other news, there was an incident at the facility. My FM was on the patio on smoke break. He had finished his cigarette and sat down to wait for smoke break to be over. Another patient walked over to him and put the hot end of a cigarette against my FM’s cheek! Just below his right eye! My FM reacted appropriately by standing up and loudly asking the guy what he was doing. Staff pulled the other guy away and took him inside. My FM was taken to the nurses' station for first aid. She cleaned his would and put ointment on it. They handled it well. The man who harmed my FM was sent to the local crisis unit to be stabilized.

This isn’t the first time my FM has been injured in a psych facility. Several years ago, a patient broke his collar bone. Another time, a patient struck my FM in the face. These things happen in a place where unstable people are held. Staff are good at watching for these things, but they’re never 100% preventable. This incident happened so quickly!

I’m so glad it was a minor wound. If the man had placed the cigarette a quarter of an inch higher, it would have gone into my FM’s eye! That would have been really, really bad. Thank goodness that didn’t happen.

I saw my FM on Wednesday. We had a good visit. He wanted to shop on my phone. Shopping his favorite activity! He was trying to decide between “goth” clothing or “hippie” clothing. He loves clothes! We couldn’t find anything in goth style that would be acceptable to the facility contraband rules. So, he changed his mind and we shopped for hippie stuff. Much better! I got him a couple of cool shirts, a book, and he wants an amazonite pendant from a local new age store near me. Doable. I am proud of him that he’s able to stay under budget and not continually asking for more ‘stuff’. It gets old quickly.

Actually, since he stopped ECT and the doc is working on a med change, I am seeing good progress! He’s been able to communicate with me better, and me with him. I could tell he was agitated at the visit but he was still doing well. The prior visit, when he was showing mild symptoms, I suggested we walk together around the small patio area. It helped him.

This time, he asked if we could walk around again. He said it helps with the spirits. Excellent insight and great coping skills. We have always had better talks when we’re walking or doing an easy activity. This was good!

We'll keep moving forward. We’ll try new things. We all need to find a way to motivate him to do something he’d like to do. Something more in reality. He has so many beliefs about fairies and aliens and immortality that it’s hard to ground him well enough to guide him to something more likely to help him integrate into the community.

If yours have been able to succeed in transitions into the public after long-term inpatient, what worked? What didn’t work? Why?

As I’m looking for a good picture to include on this post, I had a thought. Since he doesn’t do well with a future goal, maybe his team would consider breaking the goal down into smaller bites. Like the saying about how to eat an elephant: one bite at a time.

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