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 som**hing 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 som**hing with people. Som**hing 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 som**hing I’ve written about in the past. I was told (often) that he couldn’t be ‘forced’ to do som**hing 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 som**hing at the onsite store. It seems to me that this type of incentivizing would be better for my FM. At least he’s have som**hing 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 som**hing he’d like to do. Som**hing 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 som**hing 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.