Hello. I’m reaching out in hope of finding others in a similar situation as we try figure out what comes next.
Our son had an acute psychotic episode 5 years ago when he was at university. He was treatment resistant to the first 2 anti psychotics but made progress with clozapine. He started to get better and a couple of years later started working in a fast food place. Last summer, although not fully recovered, he decided he wanted to come off clozapine and followed an agreed programme for doing so. Unfortunately he became unwell again and had to go back on clozapine . The doctor has now changed his diagnosis from non organic psychosis to schizophrenia. We weren’t surprised by this but it now looks as if our son will never make a full recovery which is very hard.
Right now I feel very isolated - stigma in society dictates that my son’s condition needs to be kept under wraps. Over the past 5+ years we have tried everything we can think of to help our son and now we don’t know what we can do.
I’d be really grateful if anyone has an advice to share. Thanks for reading this. 
Maybe try out talking therapy. When my mom was unwell and in the hospital she spoke to a priest. You are in my prayers. Distraction helps me. Perhaps try to find solace as much as possible. Good luck. Make some brief summary notes on your options. Hugs.
Hi Michele
I can’t really offer advice but you have my sympathy. My son was diagnosed many years ago and has had a bumpy ride since with spells sectioned in hospital and occasional arrests for disorderly behaviour.
In the early days he did well with clozapine and even had one year at university but eventually gave it up as he couldn’t tolerate the side effects.
Happily he is pretty stable now he’s reached his 40s, with just 3-weekly depot injections of zuclopenthixol. He has his own flat which is a tip, but spends a few nights a week at mine. He is on benefits as he cannot keep a job and likes to type his Grand Thesis on his laptop for most of each day. It is incomprehensible but it keeps him happy.
I’ve never shied away from sharing his condition with other people, and I’ve been amazed at the number who have then gone on to share about some “hidden” relative with a similar diagnosis. I occasionally go to a Carer’s group where everyone understands, and I can sometime pick up useful information about other services. Do you have something like that in your area?
I wish you and your son all the best.
Thank you for your kind words. I’m sorry to hear that you are also a carer for a son with schizophrenia. It sounds like you have been through so much over the years and I hope your son is able to remain stable.
I’m a member of a lovely carers group in my area but we are all caring for people in a number of different situations and I really need to try and link up with others in a similar situation for support and practical advice. I’ll do some local research and see what I can find. Thanks again.
Thank you, agree talking therapy can be very helpful.
Heya. Good luck. Try your best in order to have a checklist. I found it helpful when I attended talking therapy sessions a few years back to make brief summary notes. It helped me a lot. You can do this. Each single meeting we discussed goals as well.
Hi
My husband and I care for our daughter with schizophrenia it is hard to see her suffer.
The injection medication has helped and she has social care and lives independently.
I wish there was a cure.
She has been hospitalised many times.
It is a particularly difficult situation for her
She is very brave, as are we.
I have found Pema Chodron v helpful and so has she.
Warm wishes to you and your family.
Ula
Hello Ula. So sorry to hear that you also are a carer in this situation. I find it so difficult to deal with especially when schizophrenia is portrayed so negatively by the media. I really fear for the future.
Dear Michele
We work with the GP and mental health teams as much as possible, writing letters gets things focused. I try to have as much fun as possible with daughter even though it can be a challenge. I am super tired just now but happy to keep posting together.
Warmly Ula
Dear Michele
Our loved ones whether well or unwell
Whether we are with them or not
Will always know deep down they were loved
This I feel is so important
Keep in touch when you can
Ula