Please help me understand

[Imstickingwiththisone]

My brother has been under the care of the early intervention team for over two years now and although his initial assessment of psychosis has been treated in the main (there is still a huge level of paranoia there always lurking but he isn't seeing messages meant for him in newspapers about how much he is hated, nor is he unplugging everything in the house because he thinks it's bugged), he hasn't moved on a lot.

He is still severely depressed, he doesn't leave the house, sometimes he wont leave his room. He has been diagnosed with PTSD too but that was a very long time coming and the symptoms were apparent from the beginning. None of the antidepressants have helped him (unfortunately I've struggled to keep up with the names so couldn't say which have been tried and tested). I just feel so hopeless and cannot imagine how he must feel about the prospect of ever getting better. I can't see how he will ever be well enough to return to work and live independently without slipping back and turning to drink as he has done in the past. For years prior to the psychosis he has coasted along, getting laid off from bad jobs and having long stretches of unemployment, getting into fights when drinking, drinking excessively alone but never mixing with people, being obsessed over things like a handful of bands and discussing the same details over and over. As a family we've always treated him with kid gloves and not pointed out how many times we've already had this conversation and just go through the motions, and i guess it was because to point it out each time would be embarrassing and we joked he had a bad memory. We've always just thought of it as what he's like and it's only with hindsight that i think he probably has ASD.

He's living with my parents now and i also feel so sorry for them, they devote as much of their life to their mid 30s son as they would a child. They don't feel they can leave him for weekends because of varying reasons, sometimes he is too quick to turn to drink and leaves the house in a very vulnerable state and has been arrested for causing bother with police, or he just gets very very low and they worry he will do something that can't be undone as there has been an attempt once before. Most often though it's just that his mood dips when he is completely alone and they feel it just takes them even closer back to square one.

Unfortunately i live a long way away and there is little i can do as part of his recovery as he hates talking on the phone so i cant even be another person for him to talk to in his isolated world.

I'm sorry to ramble like this. I'm just looking for a bit of light at the end of the tunnel for both he and my parents.

He was offered a bed as an inpatient (not to be detained) at one point, but the only hospital available was one we hadn't heard anything good about and my parents basically convinced the Dr that this wouldn't suit him. At the time i agreed, but now i cant help but think he would be forced out of him comfort zone and it might accelerate his progress? It's like he needs to get used to everything all over again to be rehabilitated but it's impossible when he wont leave the house. Some days he does but only with one of my parents and it has to be a pretty spectacular reason to get him out.

Hi, my DH suffers from episodes of psychosis. He also has a history of depression and multiple suicide attempts when depressed and when psychotic. He had problems with alcohol and drugs (mainly canabis) and has been in trouble with the police in the past, as he tends to get agitated when psychotic and get into fights with people he thinks are threatening him. He has been under an early intervention team for 4 years now who have been amazing and really helped both of us. Do his team offer social activities? DH used to go to football, bowling, golf and cinema trips with groups run by his team which helped him get out and build his confidence socially which then enabled him to take the step of getting back into work. Hospital is not necessarily the best setting for recovery, or the only way for him to move out of his comfort zone. My husbands CPN used to take him out too. They would go for a coffee or lunch together in the early days to get him out the house.

Have your brother and parents had a Care Act Assessment? This will look at how services (social and health) can meet his needs in a variety of areas. He has legal entitlement to this assessment and the provision of the identified support as do your parents. Your parent's also have the right to a carer's assessment of their needs to enabke them to support him. This could involve a personal assistant to help him with tasks at home or with going out places and also for respite for your parents. So someone to support him whilst they have some time out for themselves.

What support are your parent's getting? They should be getting suppirt in their own right through your brother's mental health team. I have an alocated CPN to support me and his team used to run a friends and family group, thouh sadly this has fallen by the wayside. The NICE guidelines for psychosis and schizophrenia definately reccomend support for the whole family. They also reccomend when someone has had psychosis at least 10 planned sessions of family intervention, including your brother where possible. My husband and I have had family therapy together which has been really helpful.

It is so important for your parents to be getting suppirt in their own right for them to stay well or they won't be able to support your brother if their mental health starts to suffer. Psychosis is so difficult for everyone involved. Their local authority should provide carer support, so it's worth looking into if there is a carer support group for people caring for those with mental health problems in their area. I have found this kind of peer support really useful.

For helping you understand more about psychosis I reccomend TED talks on utube by Elyn Saks, Eleanor Longden and Rufus May. I also reccomend Elyn Saks book "The centre can not hold; a journey through madness " she has the diagnosis of schizophrenia, but don't let this put you off, the book describes psychosis so well and really helped me to understand it better.

I'll post some useful links below as for some reason they keep messing up when I try to paste them in this post. Feel free to PM me if you think I can help.

The Care Act 2014 legislation - www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance

Useful Information about psychosis www.bps.org.uk/system/files/Public%20files/rep03_understanding_psychosis.pdf

The NICE guidelines www.nice.org.uk

Thank you for replying I will check those links out. Mainly my knowledge comes from the small amount of info on the MIND website and my brother himself. Have they said what caused your husband's psychosis? They've said that my brother's was caused by a severe bout of depression plus alcohol abuse. Was it similar to your DH but it keeps returning? Do they now why it returns? Unfortunately my parents would never seek out support for themselves regardless of how helpful it might be. As well as it not being their thing (they're not very sociable to be honest) they wouldn't want to make the illness about them, despite the impact it has had on their lives.

We live in a NW city but the only classes that have been put forward so far was one attended by people in a much worse condition than he was. No judgements of course but he didn't feel it was somewhere he could socialise and so he never returned. I will ask my DM to ask about more activities, as the football / golf / bowling sounds great. I guess it all depends how the funding is distributed in your area. My DB's CPN has been fantastic and a real life line for my DM as although we have a large family there is a lack of understanding and every cliche in the book gets trotted out including that my poor DM is enabling my DB.

He definitely needs something to bridge the gap between walks with CPN and being fully recovered. Having these activities with people at a similar stage of recovery with a similar past definitely sounds the way to go.

They have never really talked about why DH may have developed psychosis, his team are not diagnosis based, they focus on symptom management instead. There are loads of theories about what psychosis is and what causes it but I think the answer is no one really know for sure. Looking back DH has had episodes of psychosis for 10 years before his diagnosis. He has 2 other family members with psychosis (one is diagnosed with schizophrenia) so I think there is likely a genetic factor with him, he was abused as a child which again is linked to psychosis and he smoked weed as a teenager which also has strong links to later developing psychosis. So theres a few risk factors for him. But 3% of the population develop psychosis and many of them don't have the risk factors my husband does.

I was told that some people have 1 episode of psychosis, recover and never experience it again. Some people always have some degree of synptoms which never fully recover and everything between these too extremes. Psychosis can be associated with lots of mental health conditions, depression, bipolar, schizoaffective disorder, borderline personality disorder and schizophrenia. It can be something that is a one off or something that requires lifelong management and medication. The good news is that most people who experience psychosis can learn to manage iit to live a productive normal life with the right support.

It's great that he has a good CPN, who is supporting your brother and parents well.