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Looking after ourselves

artee
Senior Contributor

How do you enforce boundaries?

How do I keep my boundaries, except to repeat them how ever many times a day he walks over them? I was told this week that I don't need to keep telling him how to behave, because he has an ABI, he can behave how he likes (including urinating outside). I shouldn't ask for a question to be answered, and not multiple times, or remind him people answer questions out loud, or not to be yelled at because I expect an answer, be argued with on everything (he even says he isn't arguing when I ask him not to argue), or expect him to shower, clean food off his face, clean his teeth, clean his dentures, change his clothes, wash his hands, with soap and for more than 2 seconds, after touching animals before touching food, or touching raw meat, or use the dish cloth on the floor then on the plates, or not be told every little thing I should be doing and when. And "That's OK." That's one of few phrases I get to everything when I eventually get an answer.

I also get "I don't remember," "not sure" or "yeah" with an upward inflection on the end. Yeah doesn't mean yes. It may mean no. Its not worth trying to come up with a real answer, just one of the phrases will do. Its not being untruthful to say yeah instead of no. It's ok. I've started ignoring him when he asks questions, but I'm being rude if I do it, and he isn't.

I shouldn't expect that pain has anything to do with why I don't do all the things he has decided I should do. I shouldn't expect that he will do as he's asked if it doesn't suit him and get anger, excuses or lies about why he hasn't bothered, but I should do whatever he's planned for me for the day. I get told what I'll be doing as soon as I wake up. It's not negotiable. Its like he has an anxiety attack if the day doesn't go as he's decided. I can't expect to be in another room for more than a minute before he comes to see where I am (includes the bathroom if I don't expressly mention that's where I'm going). And I can't expect to talk to my friends or family on the phone with any privacy. At the moment, I have to go outside because the phone signal in the house we're staying in is non-existent. He will come and stand by me. He gets very angry and gestures threateningly if I tell him to go away.

I've calculated the horrific financial cost of his ABI since he had his surgery 4 years ago (he was starved of oxygen - probably - it can only be diagnosed with autopsy). It wasn't diagnosed for 3 years, because we had moved overseas, and he has had no help. He doesn't want help. He says the problem is all mine, and it's ok. I didn't have such bad arthritis before his ABI - though I had a lot of hard days, but I worked. He insists that my osteo-arthritis is curable, but it doesn't have to be for others.

He's told me I should leave if he's so horrible. I get the carers pension and he is on disability. We have no home - we live in a caravan, wandering aimlessly and currently are housesitting. He says I'll be fine  - I barely move some days due to arthritis. We don't have enough money between us but he's sure half will be enough. He has no concept of money, but he's quite obsessed with spending it. He can't understand budgets and loses his temper if I tell him he can't spend money. He has no access to the accounts, because he'd manage to bleed them dry. He breaks and damages so much through being careless we're doing a good job anyway. We have lost hundreds of thousands since his surgery, in part due to his complete disinterest in the business we had just purchased in the same month as his surgery. We lost it and a lot more besides, before I consider what we haven't been able to earn since this happened.

His solution for me is that I sell myself or go hook up with someone else. Or simply, I'll be fine, and something will come along. That should be easy to find someone he says. He seems to find my pain very amusing. I have a plan to get out, but it will take time. I need to be in one location, I want to buy a house, but he's obsessed with running and has made sure so far I don't get to talk to agents about houses that are in our price range. He's obsessed with keeping me isolated and alone. My best friend is dying and he says I don't need to see her again this week. I have plenty of time according to him. According to her, she has weeks at best. I can't get there if he doesn't drive me, due to the arthritis.

I am very angry that the life we had planned is gone. That I am trapped with someone who treats me like the enemy. That the man I married died during that operation. Someone on here said that I had a lot of grief to deal with. Until she wrote that, I hadn't even recognised I had anything to grieve. Which makes me angry at the counsellors I've seen who never mentioned that at all. And more than that, I'm exhausted.

67 REPLIES 67

Re: How do you enforce boundaries?

Hi @artee

You are carrying so much weight on your shoulders, it's not wonder why you're feeling angry and exhausted. This is not what you have signed up for, and from what you wrote in your other post here, you want out, but it seems you're trapped as getting support is difficult, and your H barely given you any space. 

 

I'm by no means an expert on ABIs, and I'm not quite sure how you enforce boundaries with someone who has this condition (which can obviously vary from person to person depending on the injury). May I ask who told you that you can't use boundaries? Anyhoo, from my understanding supporting someone with an ABI is complex, and often requires support and training. Did the hospital staff or doctor provide any information? I found this resource from Brain Line on interventions for behavioural problems after acquiring a braining injury.

Grief is indeed something that can be contributing to this - grieving for the loss of what was or could have been. It can be a bit of lengthy process, where people can experience negative emotions such denial, anger, shock, despair but going through these motions can eventually lead to making new plans, and starting a new beginning. 

@artee if it's ok, can I ask you a hypothetical question: with all that has happend, if you could wake up tomorrow and have things that way you'd like, what would it look? I mean we can't turn back time, and change the fact that you H has an ABI, so working with this, where would you like to be?

I know @Janna  and @PeppiPatty have left their partners and have chatted with you before. Perhaps they can offer some support/advice her too.

CherryBomb

Re: How do you enforce boundaries?

@CherryBomb in answer to your questions, hubby tells me he that he can behave however he wants, and that I shouldn't "go on" about it all the time because he doesn't like it.

 

The hospital never has acknowledged that he now has an ABI. All they have ever repeatedly said is that the surgery (to remove stage 3 cancer) was successful. The notes show a perfect surgery and recovery, despite there were things that happened that do not appear on the notes. The statute of limitation applies to medical claims and we we're able to pursue it since we didn't have him diagnosed for almost 3 years. The specialist he saw in Brisbane said there was nothing could be done and seemed quite bored by it all. The doctors we have seen have also had no idea of how to manage an ABI and couldn't even find a suitable organisation to contact.  That's how I ended up here. I did see disability services in SA (because we've been in multiple states the past 2 years) and spoke to a social worker, but the system is not the same in Qld, where we are permanently if I can manage it.

If I could wake  up tomorrow and things were how I'd like. I'd be able to manage my pain (which I'm sure is exaccerbated incredibly by stress) and be able to work or volunteer. Hubby would be in some form of therapy or care one to three days a week and we would have a house where there are services and where I can drive myself around to get time out, make friends and get support. That's what I'm working on, that's going to take time. The minute I mention settling down to hubby, he has to run. He has prevented me going to inspect multiple houses that we might be able to make an offer on, in multiple places. However, I had to fight to stop him making an impulsive offer on a house that has recently been refurbished due to flooding as it's right on a river. 

In just over a week from now, we're doing a suburban housesit his friend arranged next door to him (hubby thinks the friend did it to make a move on me which is ridiculous) and that will be until Christmas, so I have a chance to start doing some of those things and will have his friend and wife to help me achieve it.

Re: How do you enforce boundaries?

Thanks for taking the time to answer my questions. It's great to hear that you're working on where you want to be. To me, it seems like there are two things here, pain management, and finding stable housing so that you can access support services that can support both you and hubby. It could potentially help with alleviating some stress, which might help the pain. 

What is about settling down that bothers your hubby?

 

Re: How do you enforce boundaries?

He won't tell me anything. Everything must be a secret from me and he is a different person in front of others, but from his behaviours over 4 years, I can take a very educated guess. The first is that he is extremely paranoid and very delusional. He thinks that people are after him, and us. For example, he thinks I'm on the CIA hitlist for speaking out on FB about major issues. He believes that our commercial landlord is pursuing us even now, because we broke the lease when our company went bust. In the first six months back in Australia, he wouldn't use his own name, he insisted I broke all contact with my friends (I pretended to), got a friend to buy a sim card (I told him that I did the same, but ignored him) and he insisted we withdraw large amounts of cash from ATMs infrequently so we couldn't be tracked and would drive 100km or more so I could use a different ATM every time (he can't use ATMS anymore). Stupidly, and probably in deep shock, I went along with some of it, thinking he'd be better if he was humoured and afraid of his then very volatile temper (he takes anti-depressants now to stabilise his rage). I blame having PTSD on giving in to his demands. Confrontation terrifies me and can send me into flashbacks or in extreme cases, a non-responsive state.

Secondly, his obsessive, controlling, micro-managment of me suggests to me he's terrified I'm going to leave. He is desperate to keep me out of contact with friends and family or going anywhere alone. In that regard, he may well be working to ensure he makes it impossible for me to stay, unconsciously or not, thereby creating a self-fulfilling prophecy, where he can justify his delusion.

Regardless of his motives, I'm very sick of playing what is a very twisted little game. My tolerance for his behaviour is almost gone. My concern for his emotional wellbeing has almost evaporated too. His concern for me is nil, except to control and bully me and I find myself caring about his welfare a whole lot less than I did. I'm trying to hang in there, until I can get him care, either part or full time because if I go, he's incapable of taking care of himself and will end up on the street and I don't want to live with that but I want a life of my own again.

Re: How do you enforce boundaries?

This is a sad and heartbreaking situation and something thats close to my heart.

It sounds like your getting no support-either practical or emotional and not getting help to manage your feelings and your husband is not getting help to manage his feelings/fears either.

The approach to your husband needs to be very different to other people or "normal marriages" as he has lost both insight and the ability to control and decide his behaviours/actions due to the Acquired Brain Injury.

It sounds like hes also lost empathy,memory and the ability to control some impulses (the compulsive spending) which are quite common symptoms in brain injury and some Dementias.

Setting "traditional boundaries" wont help as your husband is not doing these things willfully and to approach it like normal marriages will likely alienate him.

Its important to understand that your husband is not being this way intentionally,as that will lead to feelings of anger or resentment.

At the same time,you really need some relaxing "me time" to recharge your batteries.Smiley Happy

A way needs to be found to give your husband some freedom and dignity but at the same time for life to be easier for you.

Sometimes practical solutions help such as setting a budget on what can be spend and saying to your husband "I know you dont understand about our finanical situation but i do, so this is the limit that can be spent this week (or month) and when thats gone that it so choose carefully..."

Would you mind stating what state you are from?

If your in NSW maybe this service could help?

http://www.togethersupportgroups.net.au/group/291/Person_Centred_Approaches_Learning_Group

 

Re: How do you enforce boundaries?

I replied to this last night, but it doesn't seem to be here.

I'm in Qld, for now at least, though would prefer it to be permanent.

Re: How do you enforce boundaries?

Hi Artee:

 

Does your husband have any insight at all?

Ie:Is he somewhat or sometimes aware that the  Brain Injury has affected his personality even if he doesn't fully agree with your perspective on things?

 

https://caregiver.org/coping-behavior-problems-after-head-injury

Re: How do you enforce boundaries?

Artee
Greetings ...your in a tuff spot....
He's very lucky to have you...however it's at great expense emotionally for you
Have you tried writing down some boundaries that you can both can agree to and put on the fridge with fridge magnets.
Have you considered respite so you can get time out ( otherwise you will become frustrated and suffer from burnout)
Does his family try and help maybe you could write up some mutually agreeable " help" boundaries that are " mutually "agreeable with them?
Think about this however you do realise you can't do this completely on your own...
It sounds like he may have paranoid.
He may have to go into an aged care home at least you would know he's safe and looked after ....Them you could " move on" with your life....
I don't see your present " situation" lasting Allan

Re: How do you enforce boundaries?

Thanks @AlienBP2

I have a future plan which I'm working on, however I'm not sure how long it will take but another piece has fallen into place today. It is not something that can go on like this forever. Also, in a warmer climate, my own physical pain is reducing, so I have hope I will be able to support myself in the future, which when I started on this forum a few weeks ago, I didn't think was still possible.

He has no family left.

We live in a caravan, and we travel around, with no fixed address, so respite isn't possible I've been told. Because othat, we have no individual lives either. I'm looking for a rental or even hope to buy when our current housesitting obligations are over. In the meantime, we have a long one where he has friends close by for a change, so I hope that I will get some space that way.


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