Just so painful to watch

My son’s current state is that he is basically all in with his delusions and reactive with them all the time and barely with us. His only response to us is to answer very basic questions and with that it may take several minutes of persistence to get an answer. His sleep is currently turned around but at least he is sleeping. He spends his time laughing at and talking to the voices, he moves his body in a way like he believes something is happening to him. Similar to the way he moved the one time he was afraid and believed he was being turned into a star. He walks back and forth opening fridge for no reason and turning the lights on and off. Now he is so guarded with his thoughts. His last thing he said about what hes thinking a few weeks ago was that he is talking to his future self. It’s like he forgot to stay guarded for a second and regretted it after telling me. He has suddenly became a vegetarian. We had no idea why he wasn’t eating for a few days and then eventually said he is done with animals and figured it out and have been preparing his food accordingly but still he has lost alot of weight and eating far less than he used to.

We thought he may have been doing a tad better with the recent increase in Thorazine. Maybe a slight bit more responsive and sleep had been going good. Now he has had another increase and I’m not so sure. It could just be the waxing and waning of things. My husband and I had been out of town for one night and he stayed at my parents so he could just be more off than usual but still it has been a steady decline.

It’s really hard because every where I read that non med compliance is such a huge factor for no improvement but he takes all his meds 100%. Of coursed managed by us.They are still talking about trying Clozaril again if Thorazine leads to nowhere. He’s at least not agitated or aggressive in any way. I really want to interact with him. I am home with him all day and he just can’t. He does ask for a drive each day and to go to Mcds for a soda. At least it’s something.

With that said I am hopeful that something will give at some point.

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I’m sorry. I’m currently worried about my daughter as well, because she is continuing to have psychosis even though she’s on some pretty high doses of medication. She also takes her medication 100% of the time. It worries me for the future.

We do the McD’s drives for soda too when she’s really struggling. :slight_smile:

It is very hard to watch a loved one go through this. I feel very helpless.

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We’re in the UK. After many years of being able to cope well with her sz on Abilify injection, we noticed our daughter behaving oddly and saying very strange things, so we got her mental health team involved. They said she was relapsing and admitted her to hospital.

Between ramping down her old med and ramping up on a different one, at her very worst she had all the same symptoms as your son. At her best, with medication working well to take the edge off her delusions and voices, and using her own strength to fight her sz, most of the time you wouldn’t even know she had it.

If your son is comparable to our daughter at her worst, pretty much on no medication, it sounds like his medication is not effective. Has he been better than the way you describe?

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Yes, he has been better. He has some good response to a few meds but not for long. There have been times that he’s been tormented by voices but at least had insight. He’s even been very paranoid and then later after being more stable was in disbelief at the things he believed and thought were real. Now there is no insight at all, this is his world. He is not paranoid at all though right now. He’s tried so many meds and ECT was suggested but he refused.

I’m sorry too, I hope they can find out how to tweak or change things to help her with her psychosis.

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I guess we’re following similar paths, supporting the psychiatrists to try a different medication because the one our son/daughter is on isn’t effective or has unacceptable side effects. There are new meds coming out quite regularly and understanding how the brain works is getting a lot of attention, so we must remain hopeful that one day, perhaps tomorrow, there’ll be a breakthrough in effective drug treatment that works well and for everybody.

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