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BPD/Psychosis - What about me? - Carers UK Forum

BPD/Psychosis - What about me?

For issues specific to caring for someone with mental ill health.
I am a carer for my boyfriend of 7 years who has a diagnosis of BPD. He was recently (March) sectioned following an episode of psychosis. He is at home now and doing better, but still very much believes in the same conspiracies as he did when he went to hospital. My grandmother died earlier this year and left me a small amount of money. I have booked a trip for us both this summer using this money. It is a special treat because I will be turning 30 and starting my doctorate in September. BF now says he cannot go with me. He is convinced organised criminals are plotting to kill him, and that most people we know (sometimes even me) are aware of the plot. He believes that if we go on holiday he will not come back alive. I have tried to insist that I will go alone (I really deserve this break) but he says he cannot be left alone here and will have to come with me if I am determined to go. Clearly, the holiday will be a nightmare if we have to be in a constant state of vigilance, looking out for organised criminals the entire time. There are also a lot of issues around poisoning, BF thinks the water supply, bottled water in shops, food we buy is poisoned etc. He thinks people break into the house and leave contact poison on his clothes and bed sheets. He thinks our phones are tapped and our conversations listened to. He thinks people follow him, and that if I leave him alone at any point he will be killed. So it is likely that being in a foreign place these concerns will only be worse. So even if I insist on us going it might be terrible. I am so angry, disappointed, hurt and don't know what to do with these feelings. BF just thinks that I don't understand that his life is in danger.
Have you been given any information on how to help him recover by the team who treat him?
Has anyone suggested ECT therapy may help him?
Is he on any meds at all, to mitigate his paranoia?

In a grim way, your description of him tallies somewhat - but I have to say far more intensely on your bf's part - with my own upbringing by a mum who probably had paranoid schizophrenia (it was never formally diagnosed - not that uncommon two generations ago) But I grew up with a mum who 'routinely' assumed she was being spied on, followed, spied on out of the TV, the house was bugged, there was a huge and insanely complicated 'conspiracy' going on about spies, and a complex court case that seemed to involve huge sums of money ,etc etc etc. I grew up assuming it was 'true', and it took a while to realise it wasn't happening at all and that actually there was NOTHING going on.

She could NOT be persuaded, or argued out of it. It is impossible to 'disprove' a conspiracy to a conspiracy theorist, even one that 'passes for sane' (!), let alone one that has genuine mental illness.

I'm not really sure what to suggest. My mum, for what it's worth, finally seemed to 'calm down' a lot in old age, and whether that was because she finally accepted meds (from time to time she went on Librium which turned her into a zombie), maybe the new meds were gentler?, or whether she was less stressed by other matters in her life, I don't know. She had quite a 'gentle' old age, and became a doting granny to her grandchildren, whom she adored. She was always 'a bit crazy' but in a far less destructive and dominating way.

But you can hardly wait until you and your bf are old, so really, I think it is a question of - sorry to be ruthless here - the following choices:

- accept him as he is (see below)
- fight tooth and nail to get whatever effective treatment MIGHT be available (and I have no idea if it is and suspect it isn't...that this is an 'incurable' condition, and can only be 'partially managed' to make him 'fit in' to any kind of society/relationship)
- end the relationship.

You don't say how long he's been like this, whether he's got worse, and what the docs are saying about whether it is either treatable or likely to diminish again for other reasons on its own.

If you do 'accept him' then I would strongly recommend you simply take this break ON YOUR OWN. And leave it at that. Don't take him with you. As you say, it will be hell.

What worries me is that you may not, sadly, be fully accepting of just how limiting your life will be if you live with him any longer. Are you hoping for miracles? I don't say that to be cruel, but to be 'kind in the long run'.

It might just be that sadly, however much you may love him, his insanity will cripple the possibility of ANY relationshiop with him. It already, doesn't it, rules out you having a family with him? (partly beause of the risk of any kind of genetic inheritance of his condition, though the jury, I believe, is still out on the cause of such severe insanity, and partly because it is quite unacceptable to subject children to a father with such a condition - believe me, I speak from experience!)(my mum was incredibly loving - and completely 'insane' - I can't really use any other word alas.)

Maybe I'm being too negative here, and maybe psychiatrists are far more hopeful of a better outcome than seems to have been achieved so far with him. I do hope so.

But it might just be that although you love him, you cannot spend your life with him. Nor he with you.

It's so, so sad, mental illness of any kind - but there it is. Bad things happen to good people.....not nice, but grimly true.

Have you had any counselling yourself? That might be a very good route to take if you haven't. This is a situation for 'experts' in dealing with him - you need ALL the support you can get.

Kindest wishes in such a painful predicament - Jenny
Hello Rhea
I can heartily recommend the MIND website. There are 100s of pages on all things to do with mental health but I am starting you at the friends and family page for psychosis
https://www.mind.org.uk/information-sup ... XzW0sbTW2c
It gives some tips on how to respond and I suggest you explore the site further too.
Mind also has helplines you can call

Yes, I think you are right that he would be worse in any strange place, abroad or not. However I am a great believer that one person with MH should not control the life of another. It's easy to say but not so easy to do.
You do need regular breaks from caring and this one seems ideal. I'd suggest taking a friend instead of him, but contacting his MH support team to see what can be put in place so he isn't totally alone while you go.
You cannot allow his situation to rule the rest of your life, either he puts things in place to improve or, ultimately you will have to leave. Unfortunately most MH issues make the sufferers totally self centred and it takes too much toll on those around them.

You need support and counselling to understand and work through just how much you can change your life to accommodate an illness that is very rarely cured, only sometimes managed to some degree or another.

Caring for MH is very hard as it is often lifelong and with little hope of recovery. If you do decide to stay for the long term you need prepare for an unrelenting marathon

This holiday conundrum will only be the first of many possible sacrifices, how many do you want? ( rhetorical question to ask yourself)

Do check out Mind and get some support, you need it

MrsA (posting same time as Jenny, betting we agree :) )
A word of caution, he may one day believe for some reason that you are also against him.

He may never recover, to be honest.
Thanks everyone, so much, for your replies. It really helps not to feel so on my own with this one.

In answer to some of your questions...
The CMHT that he was under after his discharge have not offered him or us anything, really, in the way of support, advice or services, aside from medication. BF does not want to take medication. He has been yo-yo-ing on and off antipsychotics for some years and does not want the side effects and the anxiety they provoke. It has been agreed that he should be medication free. However, this is what provoked his latest episode. Saying that, he has been improving off it, and I believe that this is, long term, the best way to go. However, things have been escalating a bit recently, as we have moved house and I think this is causing stress which is causing the delusions to intensify. He is quite calm about his beliefs, but is convinced of them. And cannot understand why I don't believe them too. He would like talking therapy but has been told he cannot have it. No one has ever mentioned ECT. At present, BF doesn't think he's ill anyway, so accepting treatment would be difficult.

His care coordinator regularly fails to contact him when she says she will. They had originally agreed to meet up every other week. But to be honest BF doesn't see the point. She is very unreliable and in his eyes cannot offer him anything that will help just the usual - try to get out of the house etc. Which he can do. He just continues to have his beliefs about persecution.

I have recently had some counselling, that has helped a lot in helping me get my priorities straight and accept and listen to my own feelings. I have become much more boundaried around what I will and will not compromise on in terms of things that I want and need. BF tends to see this as me being unwilling to compromise on anything, and becoming 'hardline' or 'discriminating' against him because of his illness. I refuse to treat him as if he has an illness. Or at least that is what I am trying to do.

I have tried insisting that I go alone on this trip, if he doesn't feel well enough to go. However, he interprets this as my forcing him to go, and likely be killed. He keeps asking me how I would feel if he died and that it would be my fault and I couldn't live it down etc. He doesn't really have anywhere to go, his siblings are somewhat estranged and Dad is far away and struggles to cope with BF's MH, his Mum passed away some years ago. He says he doesn't feel safe unless I am around, as the contract killers won't hurt him whilst I am around to witness.

I really, really don't want to compromise on this. Almost out of principle. I don't want my life to be limited. I could do this trip, and he would probably come with, he has said so. If he becomes very unwell whilst we're there, we will have to come home early, I suppose. And it could be very stressful. So in a sense if I insist on doing what I think is the 'right' thing, I might actually be costing myself the opportunity to have a holiday and turning it into an ordeal. But at least I won't feel as though I compromised. SUCH a sticky situation.
How will he react to security and X-ray machines?

Sometimes they select people to have their photo taken going through security, how will that make him feel?
Hi Rhea
Would a good compromise be to take him IF he starts meds now and continues with them throughout the break?
It really isn't fair for him to refuse to do anything to help himself or you, while expecting you to bow to his every thought
have you tried contracting his care coordinator to raise your concerns about his strengthening views and the way he talks about harming himself if you are not there.
It doesn't sound like they've devised a good enough care and/or emergency plan for him
You could mention the words 'unsafe discharge' and threaten (nicely) to escalate matters . It really isnt good enough that you are being expected to deal with this all alone
Who said he couldn't have talking therapies? In most areas you can self refer without even going via GP . You an also go private, if you can afford it.

See the sections on MINd aboutrefusing medication, and denial, but I really think you need to start demanding help and support for both of you.

Hi Rhea just wanted to let you know that I totally understand how you feel. My son is schizophrenic and has a lot of the same symptons as your partner. He has been on medication for years and the ones he is on now are making a huge difference so much so that he is living in supported accommodation now which I never would have thought possible. So the right medication and support can make the difference between leading a near normal life and being tormented by the thoughts and beliefs which dominate his everyday life. My husband and I haven't been on a holiday in years as we couldn't leave my son and to take him would not be a holiday as the paranoia would be worse in a strange environment. My son's symptoms do return at times when he has had no sleep or been drinking or indeed if he is extremely stressed but on the whole we are in a much better place than this time last year. I think you need to start being firm with his care coordinator as it isn't good enough at present he needs help and you need support . Good luck and I hope you get the holiday you deserve