Long term Psychosis/schizophrenia

[Icedlatteplease]

DS15 is really very ill and has been for a year now. Out of the blue he started seeing and hearing things that weren't there. He also believed people had been taken over by robots. There was worse and we ended up with full time carers in the house for safeguarding reasons.

By October he stopped leaving the house and spent most of the day pacing in his room.

It still took CAHMS until November to accept there might be something more wrong Than just ASD. We started on an opening dose of respiradone at the end of November and doubled it early January.

It doesn't really seem to have done anything. It does seem to have slowed his thoughts for him to articulate them (loudly) whilst pacing (which when they are intelligable, arent terribly reassuring), he's a little nicer and he might go out once in a blue moon. But that's it. He hates the carers and doesn't understand why they are here/ have to go everywhere with him.

My heart just aches for him. Can anyone tell me if they've gone this long untreated whether they've been able to return to a saner state of mind? Should I be insisting on a hospital stay? Would it even help given the situation at home is said to be stable and DS is accepting "treatment"? tbh There's no garentee we could get him to a hospital even if it was agreed and his social worker is worried he may not cope with separation from the family and family home (he is still deeply attached and dependent on DD17 and me)

I'm also stuck on what happens to DS long term. He has other disabilities which meant I expected that I would be caring for him longterm, but this really wasn't the deal. It is likely we retain full time care until (if?!?!) he shows serious improvements due to the risk to caregivers but that means essentially DD17 and I are living with a series of male carers (female carers aren't safe) 24/7. Given DS won't leave the house without me the house is literally never empty. I find the ranting quite triggering and both DD and I are increasingly finding excuses not to be in the house. I really don't know what happens in this situation long term.

I'd really appreciate the benefit of experience from anyone who has been through anything like this.

I have no suggestions for how to how to help your son, but I am aghast at you paying for full time carers, and think that is not tenable long term. It's over £1000 a week isn't it?

No experience but by God you need an in-MN hug!

I know what you mean about the reliance on you and not wanting him to go to Hospital but it does sound like:

A. You'd get a break and
B. They'd sort his medication

I didnt want to read and run OP, it sounds so stressful for you and your DD and so awful for your DS to be so very ill.
Finding the right medication and the dose to settle and work takes time.
I'm sorry CAMHS took so long to take it seriously, I think you need to keep on pushing them for reviews and appointments.
I'm not sure about hospital admissions as I think they can be frightening places but you and DD do need a break and you both need support.
Do you have close friends or relatives who can emotionally support you?
Try and get out the house for a walk or some exercise or a bit of me time every day, even briefly.
My dad was diagnosed with schzophrenia, it waxed and waned sometimes his symptoms would subside and he would be his loving caring self, otherwise the illness took him over and he was very hard to live with. Finding the right medication and taking it regularly helps, as does trying to avoid stress and having therapy.
Your son won't be in crisis forever. But it must be so painful to see your son suffer like this, your lovely boy is still in there, even if his illness means its hard to see it right now. Be kind to yourself , none of this is your fault take one day at a time and just do the best you can.

Gosh this sounds rough. You poor things. I have no words of wisdom but hope you get all the help you need and that your son improves. X

Oh no! I thankfully am not paying for that. The "and worse happened" euphemistically means that Social services are paying for his care for safeguarding reasons. It is extortionate though, way way more than £1000 a week, because of the level of guarenteed cover needed😖😱. However it has meant having far closer dealings with social services than I ever expected to have to need

Getting a break is a problem. Their plan is dependent on my never sleeping anywhere DS isn't due to his age/difficulties. We get out for day trips

Appreciating the unmumsnetty hugs

My family have been fab, but with aging parents and other family difficulties I'm wary of how much I can lean on them. My friends have been great. I enjoy my time with them as an escape, but I don't like to talk to them about it much. most people dont have a frame of reference and it's hard to paint a picture properly.

Your comments about your dad and the rest are unbelievably welcomed. I'm reading a couple of times to take everything in properly. We've been going a year now, so your words mean a lot.

@queenofthebongo thank you

It's understandable that you're concerned about the impact that separation from the family and family home could have on DS15, but it's important to weigh the potential benefits of a hospital stay against the risks of continuing with the current treatment plan.

In terms of long-term care for DS15, it's understandable that you're feeling overwhelmed and unsure of what the future holds. It may be helpful to talk to DS15's healthcare team about what options are available for ongoing care and support, as well as any resources that may be available to you and your family.

Lastly, I came across this article on acute psychosis that may be of interest to you: https://restore-mentalhealth.com/acute-psychosis/. It provides some information on the causes and symptoms of acute psychosis, as well as some tips for managing the condition.

Hello

I work in places where people with MH live, and I worked in forensic / acute mental health hospitals for a while. I'm not too experienced, as this has been a follow on from other work BUT -

I wonder if his meds in time will change? Maybe to injections? If so that might help.

If he had to go into a hospital for a while, to get on the right medication and stabilise his behaviour, it might not be scary. They are OK places. Yes people wander round saying what could be interpreted as strange things, but not all the time. People are calmed and soothed. Workers are with them and nurses are always there.

I wonder also if he may need to live longterm, somewhere where everyone has that MH condition, or something like it. I work in that sort of place now. We all really care about the residents and we know them and there are wrap around care packages in place and we support them to not escalate.

I am loathe to say 'this is how it will pan out' as I don't know - I have just seen a few people with this issue over the years and once the meds are sorted (right med, right dose), and maybe a psychologist in place, things generally calm down. Some people live their life like his though; that is what life has doled out to them, and they are supported to maximise their enjoyment, involvement and potential.

I wish you all well.