General Sick of going round in circles after 9 years with no specialist PTSD therapy

[Sam5678]

I am Sam, UK, have been a supporter for 9 years. Sorry this is long but I need help.

Exhausted, yesterday saw another outburst. This time directed at ripping the door off the refrigerator, spilling a carton of apple juice all over the carpet. Wet vac had also gone missing. OK I know these are only THINGS, but I was putting away shopping, already tired, and left with manual clean up of sticky juice, while the perpetrator (male age 56) went away to calm down in his room (further theats of damage/violence/suicide). He suffered a career ending injury at work (civilian), caused by a colleague, grieves loss of previous life, unable to work, or do hobbies, motorsports and DIY he enjoyed before, life is totally different, has (on the surface) accepted the "little" life we now lead, but there is so much dangerous anger still there towards everyone involved. We both survive only by avoiding triggering it. Everytime the eventual 'defence' is that I (supporter) caused it, that I need to change my behaviour, choose my words better, explain myself better etc. Even later/next day he says "sorry, I did XYZ" but still believes it was my fault. The anger starts again if I express any of my feelings on the subject, so I keep quiet and nothing ever changes.

I'm getting so fed up. He's had 14+ different "assessments" arguing about WHO should support him, plus a house move meant wasted time changing services, also or he needed to "stabalise", and not be "suicidal" (ie all left to me). Eventually accepted for specialist trauma therapy We got duped back out of the specialist trauma therapy queue, eventually realising it was the lesser level (who wouldn't help before). Treatment was SCARY, felt she was unaware of a dangerous client. Persuaded her to trial therapy on a lesser trauma. Just as well we did or (left unsupported and raw) he would have just killed himself. It was awful. Sessions used up, he has to re-queue for more, that was about 2 years ago. He has never sat and talked about it in detail, with an expert. I'm left to deal with him and his extensive needs everyday. Our life has been 9 years lived similar to Covid lockdown, mostly at home alone 24/7. I am not a therapist, I am just me. I am alone. Thoughts please?

 

[Sweetpea76]

You know you cannot avoid setting him off, because what sets him off doesn’t always make any sense to anybody but him? The eggshells suck.

The only advice I can give you is to make sure you protect yourself instead of worrying about protecting him all the time. When he rages remove yourself from the situation. Be safe. I’m sorry, it sucks.

 

[Midnightmoon]

I'm so sorry, what an awful situation you are in.

Seconding sweetpea that protecting yourself is a huge priority here, you can't (unfortunately) take his pain away, solve his mental health issues or be used as a fall guy for his outbursts. PTSD or not threatening violence/ damage isn't ok. That's manipulative.

Is he under a CPN/ CMHT team?

I know you wrote he's had many many assesments so this might be an obvious 'already tried' option, but needs assessment though social care? Anyone is entitled to one and they might be able to escalate? Spell out very clearly that you are unable to keep him and you safe, his health is deteriorating, he is unable to meet his basic care needs if you were not achieving them for him. The other angle could be an advocacy service who could fight for both of you without you having to do all of the leg work. If he's been under MHA sec this is 'easier' to get access to than not but it's still not impossible, just a bit harder to get in front of someone.

 

[arfie]

hello sam. welcome to the forum. sorry for what brings you here, but glad you are here.

are you getting help for yourself? i've been on both sides of the mental health help desk and? ? ? it is easy for me to believe the popular gossip that professionally trained pros include therapy sessions for themselves in their work week. it is helpful to have help in offering effective help. it's a befuddling proposition.

then we get to supporting people with whom we are emotionally bonded. . . you sound quite bonded with your "perpetrator." 'tis the nature of emotional bonds to make detachment somewhere between difficult and impossible. for my personal psycho nickel, i detach to the objectivity of my therapy support network when mental health stresses arise with the people closest to me, regardless of who is currently creating those stresses. love and bonding be dances we do together.

just opining. . .

steadying support while you find what works for you. welcome aboard.

 

[Sam5678]

Thank you for welcoming me and for your thoughts and ideas. He hasn't harmed me physically in the 40 years we've been together. The injuring incident resulted in his communication and memory impairments amoungst other disabilities (and it now feels I lost my soulmate and best friend that day). It's himself he's likely to kill, and we've no help ever with that. He's never been under MHA sec, and not been under a CPN (or a social worker) since the house move. The new area CMHT referral in 2018 got lost. At that stage, I'd stopped the admin of supporting him and he had an advocate, who was helping him communicate with GP, CMHT etc, but that stopped after funding cuts in 2019. No-one (CAB etc) could find a replacement advocate service to take him. No outbursts for 2 years. I thought he'd turned a corner, but maybe it was just eggshell avoidance! Suddenly 2 or 3 in the last 4 months. The anger is instant and (as I described before to CMHT) explosive. No therapist has discussed this beyond saying he has to be "stable" first and he "just has to learn to control it". He has fully engaged with CMHT but never been given any techniques for doing that Or for dealing with the negative feelings. He cooks and cleans (slowly). I do mostly everything else. I have online carers support but that is more about "jollying us all along" with fun distractions rather than maintainance/understanding where we are in our carers journey(s). Will re-try asking for a Needs Assessment through Social Care for both of us. I have lived in this mess so long, I no longer know how best to describe the situation to the authorities. So your tips are helpful. I have no-one to talk to, my family have all died, so you all taking time to reply means a lot to me.

 

[DogTired]

Right now I'm thinking you need help.
You must take care of you first.
My wife was having a hard time with my PTSD BUT the Veteran Services Charity that is working on me is also working with her, giving her advice and "educating" her to what she can do to defuse things. It's been working too. Dunno how, but she now can defuse me in seconds. That's good for me, and for her.

Personally I'm done with the official NHS B.S.
It seems it's all promises and no delivery.
Perhaps, just perhaps, there is a civilian charity that can help you.
You could try UK based mind.org.uk as a starter.
Even if it is only to get some idea of what is out there for supporters.
Another one is https://www.salvationarmy.org.uk.
They had support workers for those with mental health issues.
One of my buddies with PTSD and his girlfriend used them with good results.
He's still a little bit broken (like me), but they are working together now, and are both content. Hope this helps

 

[Midnightmoon]

Unfortunately this story is all too common, unless you are directly, as the NHS see it 'causing a problem' (eg 'frequent flyer at A&E, lots of GP appts, emergency services call outs etc) you are left to manage. I'm guessing the carers service can't escalate anything for you? They may be able to help with the social care referral as many are commissioned to offer services through them, like personal budgets for cleaners etc...

Like others have said would you consider some therapy for you, to have some support in all of this?

Next time he is in crisis 111 and choose the mental health option, will at least flag the system and highlight that he is in need. Many NHS trusts also have their own separate MH single point of access phone line (often just called the SPA line) to seek advice on how to get a secondary care referral seperate to the urgent line.

Definitely Social care, unfortunately you need to be very very blunt in order for them to not just pile it back onto you to be responsible for. If they think the need is being achieved (by you) they won't pick it up.

Would he self refer online to whatever the talking therapy program is called in your trust, usually something like steps to wellbeing? They won't be able to take him as they only accept mild to moderate (and there is no way 6 sessions of virtual self led CBT will be sufficient here) but they can refer on, so it might be another angle into getting in front of someone who can help.

CMHT referral the GP needs to be doing... The form is small in comparison to many referrals and really shouldn't be a huge admin issue for a GP to complete....If he was under a CMHT before and especially if he was under a CPA (care plans should tell you) then the fact he has just been wiped from the system is awful . Would he engage with a GP appointment to ask? If the GP won't re refer then you can get PALS/ICB concerns team on board, or somewhere like Powher (obvs location dependant)

Sorry, that's a lot! I appreciate that all of these suggestions take time and energy that I imagine is in very short supply right now for you, so please ignore if they're unhelpful. I used to work in the system,and I cannot stand what's become
of it