Mentally ill brother

[chickencuddles]

Brother had no history of mental health problems growing up.

We had excellent relationship, (5 years between us) visiting each other at uni, welcoming each other into the others friendship groups etc.
He developed a skin condition, a bit like eczema, called red skin syndrome (related to overuse of topical steroids) and spent about 5 years going through an awful withdrawal process (age 25-30). He was living at home with our mother during this time, having given up work. He wasn't believed by the medical profession that it was a withdrawal process, and many dermatologists suggested further use of topical steroids. It was an appalling physical process to watch and he was very ill. I supported him the best I could throughout this process, although with working and having 2 young toddlers at the time I couldn't always be there for him. It was also difficult to know if him going against all medical advice was the correct treatment for him. He is extremely intelligent and was second guessing the doctors constantly. I am more inclined to follow instructions as per medical advice.
He then started to see his skin improve eventually. At this point he seemed to develop depression/anxiety traits.
He also started to turn on me and my husband, saying we hadnt supported him, or believed him about his diagnosis. He claimed we did nothing for him to help him (I flew back from holiday once to go and help look for him as he threatened suicide and ended up hiding out on the local common, the police eventually found him). He suffered psychotic episodes. One time when I was with him, he put his hands around my neck and began to squeeze. He was always included in family events by my wonderful in laws, but would often turn nasty at them and start accusing my in-laws of not supporting him (he had also kindly been given accommodation by them in their house when he was going through an obsession about allergies in his own house).

My mum tried so hard to support him throughout this process. She had been widowed when I was 13 and had done a great job bringing us up, but I often had to step into the parenting boots during that time, as she also had physical issues from a stroke.
He also had my grandmother removed from her own home (the house was shared between my mother and her mother as they were both widowed) and put into a care home (she was displaying early signs of dementia but certainly didn't need a care home at that stage), mainly because he hated her and couldn't bear to live with her. As I had moved out many years before it was difficult to intervene as I didn't have the full picture. In hindsight I can see what happened.

Over the last 5 years my mum gave up everything for him to try and help him rebuild his life. The effect on her was monumental. She constantly cancelled plans to see me and her grandchildren, even for things like her own birthday celebrations. I would message him on a regular basis to ask if he wanted to meet up, if he needed anything, but conscious of the fact that by this point I was actually scared of him and didn't want to be alone with him in any setting (aggression was always directed at me, not my mum or my in-laws). He would generally ignore my messages anyway or hide away in the house when I came round to pick my mum up. He would regularly try to turn her against me and she occasionally had to come and stay with us to get away from the toxic atmosphere in her house.

During this time my mum had a hospital spell for a badly broken leg. She was in for weeks. He only visited once.
She then developed bowel cancer. Luckily this was treated fairly easily. My brother convinced her to lie to me about the cancer so I didn't find out until a year later that she had it. I was under the impression that her colostomy bag was being fitted due to severe ulcerative colitis. Again no visits for her in hospital from him, not even on Christmas day.
Sadly the cancer reoccurred, and spread very quickly. She spent 3 months in hospital. He maybe visited her once. I tried to visit most days. It was the most awful thing I have experienced. She eventually died this February, I got to be with her as she went. My brother refused to come, despite contact from everyone who knew him. On the same day that she died, he was sectioned after frantic calls from me to his psychiatrist and the crisis team. Although eventually he went in voluntarily, so he was able to leave a few days later of his own free will. During his stay in hospital I visited the house to get mum's paperwork to start organising the funeral etc. The house was in absolute squalor. Dog poo on the floor. Vodka bottles everywhere (he is an alcoholic).
By this point our relationship was non existent.

Fats forward 6 months and he is in and out of hospital (general hospital), often for alcohol withdrawal and associated issues. He's had a few aggressive phone calls with my husband. I've had messages blaming me for mum's death. I've also just been through a bowel cancer scare myself, luckily I'm OK. I panic whenever my phone rings in case it is him, hands shaking, heart racing sort of thing.

I'm now getting messages from a well-meaning friend of my mum's, saying something needs to be done, now, as he has just been sent home from hospital back to truly horrific living conditions. Which is all well and good, but what on earth am I supposed to do? I can't solve any of his problems. He's so far down the black hole that I haven't a clue how to help him. The medical profession haven't been able to help, his psychiatrist is lovely but overstretched, as are social services, and I just feel utterly helpless. I barely know him anymore, so it's like being asked to help a total stranger. The only thing that has helped my sanity over the past six months whilst I try to grieve for my mum, and stress about my own health, is reducing contact with him. His friends are rarely in contact with him anymore. We have a few cousins dotted around but basically, he has no one because he has alienated everybody. I understand that mental health problems can do this to a person, but the fallout of his problems on everybody else has been absolutely massive, and people just don't have the time or energy for him any more. It's so incredibly sad, and I feel desperately sorry for him, but I don't see how he will ever get better. I feel incredibly guilty, but also incredibly angry with him for everything he's done. How do you distinguish between actions caused by mental health issues and other actions? It's all blended in to one for me.

Any advice very welcome. At some point the house that he has trashed will need to be sold, but that's a story for another time as it's unsellable right now anyway.

Feeling sorry for myself right now and wondering if I could/should have done more...

Sorry this is so long 😬 well done if you get to the end!

I’m so sorry.
Do you have any information on his psychiatric diagnosis? Is it schizophrenia?

In my very strong opinion, many people with severe mental illness are not best suited to living in the community but would be better in sheltered accommodation or even an institution. I’m in a minority here though I think. But your brother would be an example of what I mean.

You can’t cure him, though you can try to make sure he is receiving proper professional support. Does he attend a day centre or have a community care team? Who is his next of kin and if it is you, does he consent for you to be kept informed by his medical team? That way, if you check in on him and have increased concerns (danger to self or others, non-compliance with treatment), you can liaise effectively with his care team on his behalf. It is very difficult and you’re not the first or last family to suffer through this terrible disease.

Unfortunately he has not given consent for me to know anything. I have his psychiatrist's number, so I pass on info when I can, but it's fairly one directional, although his doctor knows how much I want things to work out so gives me snippets of info when he can. I'm not sure what his diagnosis is, it seems to be all sorts, depression, anxiety, perhaps some ptsd, he is an alcoholic and self medicates as well. He's very clever at playing off different teams against one another, promising to attend a meeting with so and so, but not following through, and the follow up takes so long that he can go weeks without seeing any professionals. I have asked for him to be moved into sheltered accommodation as I think that is exactly what he needs, but nothing ever comes of it. I just want to be a bit selfish for once and focus on my lovely little family and enjoying my kids. He's always in the back of my mind though, I can't switch it off. I feel very 'absent' at times when I know I should be enjoying myself in the moment. I get annoyed as well as I think I've had a bloody tough time losing 2 parents before I'm 40, when do I get to move on and really enjoy my life for a change?! I know other people have it the same or worse, but I am feeling v sorry for myself atm! I really appreciate you taking the time to read and reply.

It sounds like at the very least, he is a toxic alcoholic. They can be very aggressive and nasty. I would advise your mum’s friend/Neighbour that you have had to go no contact due to his behaviour and if she has any concerns she can call the council/police, whatever…

Btw, I have been through the same with my brother so I empathise. He won’t help himself and you can’t fix him. Concentrate on your own relationships with your own family and friends.

Thank you. It has sort of broken me a bit. Luckily my husband is amazingly supportive, as are his family. I'm sorry you've been through similar. The neighbours contact me sometimes and update me, they get fed up with all the drama as well. I just want to shake him into seeing sense, but I know it's not that simple!

Psychotic episodes, chronic squalor, alienation of all friends and family (starting in his late teens/early twenties after a seemingly normal, happy childhood) pretty much points to some severe psychiatric illness. If so, it’s not his fault so don’t hate him or take it personally. But equally you can’t cure him or make it better, any more than you could cure him if he had cancer, so don’t lay that on yourself. You have effectively lost all of your childhood family which is tough so focus on keeping strong and sane for your DH and DC….and for yourself. You didn’t cause your DB’s problems and you deserve to try to be happy.

Keep in touch with him (texts, birthday cards etc) and also with his care team where at all possible (you might need to be firm at times, or persevere until you find someone friendly - they won’t all be good at their jobs…) and let them know you would like to help if you can. But don’t put yourself in danger and don’t try to “fix” him because you can’t. Focus on your own life and health x

This is great advice, thank you. I've always tried to be a planner and a fixer (totally related to childhood). I will ring his psychiatrist today and alert him that he's back home. There seems very little communication between the general hospital wards and the psych side of things, which doesn't help matters. Thanks for messaging. It's hard to get perspective sometimes when you're in the middle of the drama. X

All the mental health services are very stretched. People get forgotten. Just be a squeaky wheel for him now and then, keep updating them and reminding them that he’s there…that does help!
Beyond that, be nice to yourself. I’m sure your mum would have wanted that!

I think sometimes you have to take a huge step back to protect your own mental health, I know this from experience, with a sibling with severe mental health issues. You can feel 99 great things but they always pick up on that one tiny thing that you didn’t do.

ive gone no contact as he was making me very ill.

Thank you, I will message at some point this week, have to gear myself up to do it as I always worry I'll say the wrong thing!

Just keep it polite and factual.

Dear Dr X. Just to keep you in the loop about my brother Y. He is back at home now after being admitted to hospital for xxx. Since he’s been home neighbours have been complaining about him doing yyy. As his sister I also have some concerns about zzz. I know it’s helpful for you to have this information so you can be aware that his situation is a little precarious and he’ll need ongoing monitoring. If I am aware of any deterioration I will of course let you know. Thank you for your care (insert anything they did previously that you found helpful). Kind regards, Chicken

To be horribly honest... I'd leave him to it for the most part. I very much doubt there's a way back to normality for him and if he's aggressive and violent I wouldn't want to put myself at risk.

As above said, texts on birthday etc. Keep contact with his psychiatrist, but don't feel responsible for him.

Sorry I was unclear; I meant I'll gear myself up to texting my brother. That's the hard bit as I overthink what to say. I will ring his doc as well, he is very easy to talk to and I know he's doing his best, I can tell he is really overstretched. Had a voicemail from my mum's well-meaning friend's husband last night to say, he's back home, he shouldn't be there, anything you can do about it type thing. Very unhelpful as I feel like everything gets dumped back on me when people have had enough and want to step back. I know they mean well though.

Ah ok I see.

Maybe don’t overthink the texts to your brother. Offer some sympathy and good wishes. Don’t expect any validation for it, it sounds as if he’s not be capable of this, so don’t allow yourself to be stressed or disappointed by a negative response. You’ll have done something nice and you can’t control his response.

And re other people contacting you and telling you to do something, just say you’ve spoken to his psych team and they are aware. Then shut down the conversation (or suggest that they research solutions…that should shut them up)!

Easier said than done, I know!

Harden your heart a little though. You didn’t cause this, you can’t fix it. End of!

You're right though. Sometimes it helps to have someone else say that though, like you have just now. Makes me feel less responsible (rationally I know I'm not responsible of course). I can't describe the pangs of envy I feel when I hear friends talk about their parents or siblings etc. in normal terms, like seeing siblings for dinner, becoming an aunt etc. I know not everyone has it good, but I always compare myself to the people that have the things I wish I had.
I have texted the well meaning friend and said I will contact his doctor again, and if he gets admitted I will arrange for a team of cleaners to go into the house and perhaps house clearance too to get rid of some of mum's stuff.

Good idea!

Don't let yourself be drawn into this by the well meaning friend.

Re read what you said in your OP - you made it very clear that you needed space and boundaries yet here you are a few posts later, forcing yourself to phone him, simply to make your DMs friend feel better about herself.

Personally I'd not text him - contact the professionals if you feel you must and arrange a house clearance if he's re admitted but nothing good will come from reopening direct contact at this point.

Another one with very similar experience here. I went no contact in a very similar situation. One revelation I had (actually explained to me slowly and patiently by a few friends who cared about me, and by a therapist) was that he had told me very clearly in his words and actions that he didn't want me to be involved in his care and wanted me to have minimal presence in his life. Yes, to some extent this was the result of paranoia and psychosis, but it was nevertheless his wish.

Does your DB ask for your help? His refusal to give permission for his medical details to be shared with you suggests otherwise.

There's no good outcome here that doesn't arise from him deciding he wants to take a different path (and that is a tremendously difficult thing to do even if you have good professional mental health support, which very few people with psychosis do.)

You should do what will make you as happy and content as possible. Try to work out, for yourself, what that might be. If you need permission to go no contact and wash your hands of it, then I am here to say you absolutely have permission to do that. (You should, though, sadly, be aware that people with chronic psychosis/schizophrenia often die young, especially if they have substance abuse issues too. If you go no contact, at some stage you might have to face knowing that he died without you and him improving your relationship. I'm sorry to bring this up, but it happened to me and while I don't actually regret the no contact, it still added an extra element of suck to his death.)

@PacificState makes good points.
You may be afraid that if your DB dies you’ll have pain and regret and wondering if you could have done something? If so, you won’t want to cut him off completely. But it sounds like you’re doing a lot for him already and you can’t live your life being afraid of how you might feel if someone dies. Leave the door open for talking (safely, on the phone, if he ever wants to), offer some practical help, like arranging the house clearance and some interaction with his care team….and what else can you do? Nothing. He’ll have known that you were a presence in his life if he ever chose to reach out and that in itself is worth a lot. But your primary responsibility now is to your DC and by extension to yourself. You should enjoy your life - we all only get one and being sad won’t help your DB!

I'm sorry that you have been through something similar and for the way it ended. I'm half expecting it to end the same way in my situation. As in I wouldn't be at all surprised if it did. I'm going to push the psychiatrist to try and get him into sheltered house type accommodation, but I imagine the demand is huge and the supply is minimal.

Massively step back. You haven’t been able to change the direction of his decline so far - what makes you think that will change if you keep on trying?

It’s an awful for everyone involved, but you can’t make things better for him. If he doesn’t even want you as NOK then I think that gives you an indication to leave him be. I’d go very low or no contact. You could exhaust and distress yourself for years trying to help and very likely make no difference to him at all. Look at the effect on your mum of trying and trying.

Ask the well-meaning friend and neighbours not to contact you, but to refer problems to SS.

His alcoholism alone would make the above the sensible course of action. It won’t be easy, of course.

@chickencuddles best of luck (genuinely!) with the supported housing. The provision that was available for my brother - even when he was violent and a direct risk to other people - was absolutely bloody woeful, but it's got to be worth a try.

Don't beat yourself up about not being perfect. It's a really hard road and for you it's gone alongside other bereavements too (I think long-term psychosis is a bit like Alzheimer's in being a bereavement without a death.) You're being a lot nicer and more constructive than I was!

Sheltered housing is very difficult to access because the current aim in mental health is Care in the Community. The idea is that people with mental illness are included in mainstream life instead of being shut away. Works for some but I suspect not at all for many.

I think many people with chronic severe mental illness eg schizophrenia would prefer to be looked after - but also many (and it sounds as if your DB may be one) - would not like it, and if so you can’t force him.

Again - all you can do is be at the other end of a phone. Your “old” brother - the one who loved you as a child - would know this and understand x

Before anyone takes offence, I’m talking about intractable or untreatable schizophrenia or related disorders.