Meds or illnes,

We can’t really discuss meds as it sets the tone with him as he is against them, he’s Curr on a community treatment order.
Depot paliperidone every month. Lots of positives but he goes through phases, one is right now, he’s two weeks after last depot. He’s insecure, pacing a lot, not sleeping well. Depending on me , wants to be with me, still scared he’s going to be abducted and used to be a terrorist or a male sex slave!
I had to go and lay with him last night at 2am for a while. That happens every so often.

Before meds we couldn’t get near him, he was hostile, distant and didn’t love us.
Is this usual? I go between is it the illness or is it the meds? He’s on 150mg per month.

I think the meds have calmed him enough to trust you, but not enough so that he can forget the delusions.

We’re still working on the right dosage for my son’s shot & I see lots of mood swings with him too.

My son is a pacer, but I’ve read that pacing can also be a side effect. The paliperidone is energizing for some - I’d talk to the doctor about it.

My son is very against the meds too, so bringing it up is like an instant fight, but he does like Neurontin as a mood stabilizer and will take that. Maybe you can sell something like that to him as a way to calm his nerves and ease his fears? I’m sure it can’t be pleasant to feel like he does.

Thanks slw, glad your son at least will take the mood stabliser. I will try with my son but bringing it up is difficult and I know he would rather not take a single thing more that he doesn’t “have” to.

He takes it because he’s taken it on & off for years - and always because he asks for it.

I think it gives him a sense of control & he finds it relaxing.

He got interested in it because his father was giving Neurontin for nerve pain by a pain specialist, so he sees it as something you can get high off of. Too much of it and he gets energized instead of relaxed, has worse mood swings, and is kind of like having too much alcohol.

Now, if he demands more than he’s prescribed, I just dump some out of the capsules so it’s at about the right amount to avoid an argument. It’s got an extremely short half-life anyway. If you were taking them to control nerve pain, you’d have to take higher & higher amounts 4 times a day.

Before my husband stopped taking them, he was taking 600 mg/4 X a day - my son is prescribed 300 mg at night.

Sounds like you really are on top of this yourself, you are such a good support to him,

We will face new challenges in a few months when the cto will probably be lifted and the choice not take meds will be completely his own. I fear for then as right now all he wants is to be free from meds and mental health services.

I only sound like I’m on top of things - my life is complete chaos.

My son does not have a CTO, he does not want to take the meds, and doesn’t think anything is wrong with him - even though he’s gotten so desperate for help after 5 days of not sleeping that he seeks out help that will land him in the hospital - 3 times in the past 6 months.

He is, so far, still taking the shots though.

I think you’re in the UK, but here, it’s very hard to get disability benefits, and he’d like to be more independent and realizes that he needs them on some level if he is to be more independent in the short term.

The medical team has implied various things to get him to take the shots including he wouldn’t get out the hospital if he didn’t take them and that he needs to stay in treatment to get benefits. I don’t know how true all of that is, but it’s working, and I’m going with it.

At this point, it could quickly be a life or death situation, so I’m doing whatever I can to get & keep him medicated, and I’ll worry about what was right or wrong later.

So, maybe you can come up with some reasons why he should take the meds?
We use that it helps his anxiety & helps him sleep - and that it will help him get approved for a monthly check & maybe housing assistance should he decide he wants to move out.

I think you are doing well despite what you feel is going on. I think your son too is lucky to have you.

Yes we are in the uk, my son worked then stopped working and would not claim anything for 18 months I think. He used savings that ironic he had saved when working. When he went to hospital he knew then he had to claim some benefits. They sorted it for him and he has been on what is called employment support allowance. It’s not a permanent benefit but he was placed in one of two groups called “support” group where he doesn’t have to go for interviews or any. It’s not a huge amount but he saves it mostly and gives us some toward his keep (small amount)

We will cross the br of what happens when he comes off the cto. I’ve no idea what then , he said he will look for work then be eligible for job seekers allowance but of course is he really fit for work? Time will tell.