Looking after adult son with schizophrenia and its challenge

Just joined this forum. I am a carer for my 30 year old son who has had mental health issues for last 7 years -actually probably longer -which began at university. He smoked a great deal of skunk, became demotivated, dirty and unkempt and then paranoid. He resisted any form of help and I finally managed to get him home but damage was really done. It was at least 6 months till he was ‘helped’, the early intervention in psychosis team eventually getting involved after he agreed to come to the GP who immediately referred him.
So far he’s had 4 hospital admissions under section, a diagnosis of Paranoid Schizophrenia and is now under a CTO order, as he has no insight into his illness and thinks he shouldn’t be on anti-psychotics.
Im interested in other peoples experiences if they are in similar situations-I’m 64 now divorced, a lot poorer than I thought I’d be , caring without much emotional or any financial support-maybe you are further down the line than me or earlier on in this and I could possibly help you?
I think I’ve reached a hiatus, got the help but realise its not really any answer and can alienate the ‘client’ . He’s become a revolving door patient and of course my life consists of fire fighting , and if Im not careful a kind of exhausting anxiety and worry and the sense of failure that comes with a mothers need to ‘sort it all’ and heal the hurt. I’ve still got a lot of grief for my son, I’ve found it all heartbreaking. And at times very frightening and threatening.

Hi Judith,
I don’t have experience of caring for someone with mental health issues, but did just want to welcome you to the forum. There are others on here who care for someone (adult child or partner) with mental health issues, so hopefully they will be along soon.


Have you had a care assessment or not? When was the last time you had me time?

Hi Judith

Sorry for the late reply. I’ve been wrestling with Universal Credit and PIP forms this week. Horrible.

Everything you describe resonates with me. My son is 38 now and has had a diagnosis of schizophrenia for 21 years. He too is on a CTO, after many admissions to hospital on a Section. He has had interactions with the police, charges of being drunk and disorderly, being ejected from trains miles from home as he got aggressive (he was scared and unable to get out for a smoke), and smashing his flat up. He has no insight whatsoever. Exhausting indeed!

For five years I was also a carer for my mum, until her death in April. That was hard as mum didn’t really understand him, and thought that him being in hospital meant everything was taken care of.

However. Since his last hospitalisation over a year ago things have got a bit calmer. He does nothing now but write an imaginary ‘thesis’ while drinking and smoking too much. It his main - indeed his only - topic of conversation which is tiresome in itself, but he isn’t nearly so agitated.

Maybe it’s because he’s older and has less energy, or because I drew a firm line saying he must spend part of the week in his council flat rather than at mine, I don’t know. He won’t take up any offers of help from the Outreach Team.

Does your son claim all the benefits he is entitled to? I charge my son a nominal rent on the nights he’s with me, which helps.

If you’d like to chat some more just send me a PM. I can’t be of much practical use but I do understand.

PS,better tell me you’ve PM’d as I forget to look :laughing:

Have you seen my recent post that everyone who has been under a Section 117 should have a “Personal Budget” from the NHS?

Hi Judith

I’m in the same position as you being a carer for my schizophrenic son. My son Joe is 30 also and was fine until he started smoking skunk when he was 16 and at college. His mental health went down hill. He got thrown out of college as he didn’t attend half of the time and he became really nasty and paranoid. It took me two years to get help for him from the mental health services who finally diagnosed schizophrenia. He had a council flat of his own but didn’t cope very well and jumped out of a fourth floor window shattering his legs completely. After a year he could walk again and he came back to live with me. Unfortunately I became ill with cancer and had to go into hospital for a major op. I was there for 4 weeks. I asked my daughter and ex husband to keep an eye on him. Daughter living with my son and I. Ex husband a couple of miles away. They didn’t bother much and Joe ended up trying to kill himself again. He recovered and he got admitted to a mental health rehab unit where he improved a bit and was then moved to supported housing where he is now.
Joe stays with me weekends but it is so stressful and he gets really nasty with me especially if he runs out of money. I remind him to pay his rent. He lies and says he has paid it but doesn’t then he is in arrears. He then blames me. He chain smokes all the time and the other week spent £200 on a jumper and then another £170 on a pair of designer boots. He does this when he knows he is overdrawn and ends up every month paying bank charges. I used to bail him out but I can’t do it anymore. He refuses to let us help him budget and no one will help me. It is very worrying. My ex husband doesn’t want to know so I’m left with all the worry. I’m 63 and work 30 hours a week and it’s all too much. Sometimes we do have good weekends when Joe is kind and nice and gives me a hug and that means the world to me as I know the old Joe is somewhere still inside.
I feel so sorry for Joe having this very cruel illness and I try and help him as much as I can but when he is so nasty I hate him and then I feel really guilty for feeling like this. Schizophrenia seems like a forgotten mental illness. It’s not talked about very much. There doesn’t seem to be much help advice or help with it. Sometimes I read up on it online so as to remind myself that Joe’s behaviour isn’t always his fault and it helps me tolerate it a bit more. I find praying for strength to cope helps me a lot as well as making sure I do something nice for myself once a week like going to see a film or doing a pub quiz.
I’m sorry to go on and I hope things improve for you and your son. Let’s hope one day they find a cure for this cruel illness.

Me too. I still frequently pray for my older sister who has had dyslexia and mental health issues for many years. It has been a uphill battle to get her to access support. Once she did, the difference was crystal clear to her loved ones and friends plus co workers too. Keep trying. I also tried to help her out by being level headed and practical as much as possible in the times of crisis.
I hope that things improve for you! It is a horrible illness, isn’t it? All you can do is pray really. This is why we still need to raise awareness of non visible disabilities. And bust any myths. I kept a secret notebook detailing my feelings during her initial diagnosis. I still have it. Try talking. It does ultimately make a difference.
And yes I concur. Once a week I insist on taking a break. I use that time to meet friends, or exercise alone at a local indoor gym or shop. Do you have any me time or not? It is essential for carers to have a break. Find out about carer support groups and join one or two. On bad days, they act as a sounding board, and rejoice with me on good days. There are some online, they are primarily either forum or Internet support groups. Ask your social worker if you have one for more details.

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