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artee
Senior Contributor

Desperate

Hi

I've just joined and read some of the other stories. Mine is long and complex, but I'll do my best to give a synopsis. My husband of 21 years has an acquired brain injury after oxygen starvation during abdominal surgery 4 years ago. I have complex PTSD from childhood abuse from my sociopathic adoptive mother, fibromyalgia and osteo arthritis in my neck (probably due to the childhood abuse) and suffer physical pain constantly. Because of the nerve damage in my neck, I am can only drive short distances or suffer debilitating, 3-7 day migraines if I drive more than 20km. I can't bend, or lift much.

Before his surgery, I had a generous, caring, loving husband. That man died. Two weeks before his surgery we had moved overseas for what we had intended to be a permanent move. After surgery, my husband had no interest in the running of the shop we'd bought and we couldn't keep it profitable. Without an income, we could not stay, so were forced to return to Australia. I have family by birth and am close to my sister, but her partner has early onset dementia and both her (our) parents are ill and I cannot live near her as it's too cold for my arthritis (which is affected chronically by cold). We had nowhere to go and ended up in a caravan in a friend's backyard. It took 8 months to get him on a disablility pension, since he doesn't want to get help, seeing me as the problem not him. He thinks I'm unreasonable to put boundaries on his most unacceptable behaviours and I repeat myself 8-10-15 times a day, every day, refusing to back down. I learned to set boundaries after years of counselling from abuse. My mothers behaviour is a post of it's own. I've had lots since returning to Australia, dealing only with hubby, but nothing they suggest has any effect on him.

Hubby is rude, selfish, verballly abusive and lose his temper frequently. He has little empathy and is selfish and greedy. He lies and is obsessed with controlling my every move. he can't stand me being out of his sight - literally. He never allows me in another room when we are in anyone's house (we housesit sometimes so I can get some space). He's incredibly anti-social and has done his best to destroy all my personal relationships (and even casual ones), especially with my sister who I'm very close to. I can never have a private telephone conversation as he sits within 2 metres and refuses to go away. If I move away, he will follow and if I complain, he loses his temper. He has no living family. We don't have children. So I am alone and very isolated. We're still in a caravan, travelling around, since he won't agree to settle anywhere and we move on frequently, rarely staying a week anywhere. He never allows me to go out alone (except on the rare occasions we stay in a friend's backyard near my friends) and even follows me to the toilet blocks sometimes, if I take "too long". He won't leave the van unless I do. An example was yesterday when we were sitting outside, and I came in to prepare food. He couldn't stay outside alone and threw a temper tantrum when I told him to go outside again.

He doesn't communicate and ignores me for hours on end, rarely answers any question the first, second or third time, and usually gives answers under 3 words when he does. His ideas are bizarre, delusional, excessively paranoid and secretive. He hides things. He believes we have to be in hiding from the creditors our company had when we went bankrupt overseas. When I make a statement he argues. Not sometimes. Every time. I feel like I'm the enemy.

Strangely enough, he is able to drive, as long as I go with him, to tell him what speed he should do, where to turn, which he doesn't always, despite now he is told turning left in 800, 700, 600,....300 slow down now, you're turning now. He cannot remember where he is and gets lost in shops. He almost runs from shops and I'm not permitted to browse. He refuses to see anyone, other than one doctor and I have a hard time getting him there. If I say anything about him to the doctor, he gets angry, I get an outburst followed by the entire day sulking and refusing to speak.

He has also developed what seems to be periodic limb movement disorder, which is thrashing of his legs, arms or head, every 20-30 seconds for 4-6 hours a night. The doctors don't seem concerned, but I get no sleep and the only ideas are to a) put hubby on a pill that causes narcalepsy or b) I take sleeping tablets so I don't notice. Neither are acceptable options. As we're in a caravan, there's absolutely nowhere else to sleep but the double bed. Last night was his worst night ever, with almost 8 hours of non stop movement and I'm exhausted. He says its not his fault, but is sulking because I'm not allowed to be upset by getting no sleep.

Because I haven't got a fixed address, I fall through the system cracks. I don't have help. I don't get respite. I can't get time out. I never have alone time. If I can get him into permanet care, I lose the only income I have right now and doubt I can work. I can't drive, or even stand up much without chronic pain. I've been told it's unlikely I'm eligible for a pension, but even if I am, its not even enough to pay rent and I have a fur baby who I won't part with for anything. Hubby says I can sell myself, or find someone to support me and I'll be fine. He couldn't care less.

I want out, but I have no idea how to do that and not end up on the street myself.

17 REPLIES 17
Mosaic
Senior Contributor

Re: Desperate

Hi @artee

A warm welcome to the Forums – thank you for taking the time to share your story. 🙂

I am so sorry to hear about the difficulties you and your husband have experienced over the last 4 years, after he unexpectedly acquired a brain injury. That sounds like such an incredibly stressful ordeal, and I imagine involves processing an incredible amount of loss.... Not only the loss of your husband (as you once knew him), but also the loss of your finances, your future goals, the dreams that you had planned together overseas. You truly have had such a lot of pressure on your shoulders, it's understandable you're feeling at your wits end.

There are a few members on here that have had some experience with brain injury, in one way or another. Perhaps @Appleblossom @Misty or @PeppiPattycould share some of their perspectives?

Also -You might already know, but have you heard of either of the below organisations? They can offer assistance and support in a range of ways to people with ABI’s and their family/carers.

Aquired Brain Injury Australia
Website: http://www.braininjuryaustralia.org.au/
Phone: 1800 272 461

ARBIAS
Website: http://www.arbias.org.au/
Phone: 1800 272427

As you are on the move a lot, and therefore don’t have much in the way of support from friends/family, I hope these forums can serve as a sort of ‘roaming community’ for you – A safe place you can “go” to take a break from the daily pressures of life. Please know that where ever you may find yourself, we are here for you.

Thank you again for sharing your story with us, and I look forward to “seeing” you around the place.

All the best,

Mosaic.

Re: Desperate

Sorry to read your post.

Caravan: I also have osteoarthritis and neck issues etc and had a weekend in a caravan .. just the noise and rattling and cramped quarters put me on edge ... it is extremely tough and you may be able to arrange a better situation for yourself, can you email centrelink if you cant talk on phone.

Brain Injury: it is often difficult for them to control their anger and the situation you describe is unfotunately consistent with what goes on with my brain injured sister-in-law .. but I am not trapped in confined space with her. Dont buy into his misogynyistic comments.

Centrelink Entitlement: I called and phoned them when I was trapped in my marriage and did not know where to turn. I used to work for them and am good at getting paperwork done but they were good to me .. though a lot of people complain etc... Maybe you can only get Newstart but that would be better than nothing .. it would be yours

You do have to make some decisions about what you are prepared to do and follow through with .. you have power in keeping current situation afloat as he needs you in driving. If you set up alternative accomodation he might want to find you... but I would think you need to get something established first and deal with relationship stuff when ON FIRM GROUND.

My son cut my access to phone years ago so I started going to library to use their computers ... if you are in a public space he may come and get you but will probably be a bit more self controlled. Maybe you can set up some registration or social worker etc .. They will be paying you as partner rate on his pension anyway so its no big diference for them financially ... Often women dont realise they are separate and whole people and have legal entitlements without being in a relationship .. I cant guarantee who you will get but perservere.

Re: Desperate

I'm so sorry to hear your story, many parts of which I can relate to unfortunately.  I also have a background of childhood trauma and abuse and suffer with C-ptsd and I have just recently left a 30 year marriage because my husband was very psychologically and verbally abusive and also suffered from paranoid delusions from time to time.  He has an undiagnosed personality disorder and the way you have described your husband sounds very similar, although I hate to say that your H sounds worse.

This is a completely untenable situation and not sustainable.  Your H sounds like he needs professional help and you sound like you need as much support as you can get.  Given that he is unwilling to seek medical treatement I would be inclined to call for an ambulance the next time he becomes highly agitated and displays delusional behaviour.  He most definitely sounds as if he needs further investigations and managment of his brain injury and associated behavior.

Have you spoken with a social worker through local community health or the like?  You need guidance through the system so to speak and someone who can ensure that get all the entitlements and support that you appear not to be getting - e.g. carer's allowance, disability pension, govt. housing, rental assistance, community nurse, etc.  I'm not fully aware of what is out there, but there has to be something more than what you have.

I understand that you have no fixed address but there is bound to be a community health centre in the area that you are currently residing in.  I would be starting there.

Best of luck.

Janna

Re: Desperate

Omg I was going to suggest the local council as well. Also
The neurology Society. They went out of their way to secure a carer for me for a period of time to give me a break from my beautiful children.

Re: Desperate

Thanks for all the replies. I wasn't aware of a lot of the informaiton you've all provided, so again, thanks.

I find calling very difficult, since travelling we don't get a good reception and I get no time away from hubby. He is horrible when I talk on the phone and often gets very angry and impatient. If i were to talk to someone about him, I'm certain he'd be nasty. I do these things without his knowledge, as he has also become very scheming and manipulative, using things I say against me, or in negative ways.

I currently get carers pension, but when I find somewhere to put him, I will lose that, and I don't know how I am supposed to live, either on Newstart or a pension if I was eligible. I struggle to think of working, when I can barely get out of bed some days. They're just not enough to even pay rent.

Hubby is currently on anti-depressants to help control his anger and anxiety attacks though he was veyr reluctant to agree. At least he takes them daily.

Re: Desperate

It is good you got to post again.

I hope you find the forum helpful.  Reading others' stories and telling your own may help you firm up in your mind the best path of action for you.

Good luck.

Re: Desperate

It's time for you to become a little bit more cunning in order to achieve what you need to do.  Does he follow you into the toilet/bathroom?  If not then I would consider making a call in private from there if possible.  You also may consider communicating via email which can be done without him knowing.  I'm still leaning towards a social worker through community health as a first port of call.  You need to be upfront and explain the difficulties you are experiencing so that they are aware that contact and communication is difficult.

I understand that he has an acquired brain injury, however his current behaviour is clearly abusive and very controlling and not acceptable.  It is going to wear you down to the point where you may end up being admitted to hospital.

I'm not sure whether you have a GP you can speak with confidentially, but you need to emphasize how intolerable the situation is and that you are at breaking point and need support and urgent respite.

Failing that you can forge forward with what you need to do and tell your husband that his behaviour is unacceptable and that you can't tolerate it and need help.  Not sure how he will respond to this, but if his behaviour deteriorates and he loses it call 000 and get him the help he needs.

You are good to be caring for him and you have clearly exercised an enormous amount of tolerance and understanding, however, I can hear that you are coming to the end of your tether and how you need support and assistance.

Hang in there and start making those phone calls.

Janna ❤️

Re: Desperate

When I mentioned the anger sometimes typical of people with an ABI .. it was not to tell uou it was acceptable .. I think you know it is not acceptable.

Sometimes it takes a little while to decide to leave or to stay .. but social workers in some institution should be able to see it is an untenable position and advocate for you.

 

Re: Desperate

Hi @artee

 

Just wanted to see how you were travelling. I hope you're taking care of yourself.

Remember, we are here if you need us , if you want to vent  or ask for more advice.

 

Nik

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