How do you enforce boundaries?

[LTS]

Thank you Ivana for your responses. ABI is almost impossible to comprehend, unless you have lived it. I have.  You cant judge what is happening through any normal lens.  What may appear to be irresponsible or irrational, is actually something else going on.

For example "fixation" becomes a necessary tool.  For trying to maintain focus on one particular thing while trying to "figure it out" which may take months, not moments.  Reduced capacity to process information.  Memory loss.  You don't actually still "know" what you used to know, so it isnt part of the process. It can be like being a kid starting school all over.  Everything has to be "learned" and figured out again.  But you dont have the knowledge that you "lost" knowledge, because it doesnt feel like anything is missing.

Impulsive behaviour.  My god.  I never used to be affected by or influenced by advertising before, now I seriously am!  But for me it's a combination of my world consists of right where I am, and what is right in front of my eyes, right now.  And there is this weird thing of I still go through the process of how I would use it, do I need it, but as I explore this, I "picture" it being used or in place (just as before) but it then becomes solid in my mind it is there, and I am using it. What I wold have previously rejected as I DO NOT NEED becomes slotted into life.  The old process.  But a different result because of the alteration to visual processing and also short term memory (the right now thing).  And for the life of me I somehow was arriving at "good decision" when I should have recognised it for "frivolous purchase".

The good news is.  I eventually realised it was happening and that I am now affected by visual "bait" and so I make myself ONLY go shopping for what I NEED and I make myself NOT LOOK (mine is visual) at anything other than that.  If I find myself "seriously contemplating" a purchase, my mind kicks in and I now doubt that contemplation, make myself walk away knowing I can come back if I still decide I want it, and guess what?  Out of sight, out of mind.  Immediately.  It's become a solution that works FOR me while the same "problem" is what means I burn dinner if I am not cooking on the lowest temp.

I guess what I am trying to say here is, the visual "nowness" and the short term memory issues have both an upside and a downside, but its the same thing.  Coming to know and understand what is going on (or now doesnt go on) is what allows us to "manage" life and get good outcomes, but taking those things into account when doing things.

But it takes time.  We have to relearn almost everything.  And going from wife to teacher of learning infant in adults body, isnt easy.  Because you will have the same or similar expectations of the person, who is no longer that person.  But can be close to that person again (over time) if they are allowed to relearn things in a different way.

I said often in the period when I was starting to recover a bit (became aware of what was going on) thank god I live alone because I'm driving myself mad enough with the things that are happening.  I understood even then how hard it would be for someone else to contend with things.

It's hard.  Every tiny little thing is hard, and exhausting, and takes so much concentration and even then it screws up more often than not.  The "little things" take a long long long way back seat (I stopped worrying about them at all) because everything I had to give, was being given to just get the most important things done (like walking when you cant actually feel the ground you are on and randomly tip over and fall regularly) and working out how to turn that same tap on, again, and again.

Things dont stick, not for a long time.  But then it starts to get better.  And time.

Speaking of time.  Time and space had no way to be measured for me.  No matter how hard I tried.  I couldnt tell if something was a minute or a week.  I still cant judge the step down off a curb and can land hard.  I read your frustration and upset about your sick friend and your husband's response.  He might not be being selfish or unfeeling.  But when a week can be like a minute or a minute like a month, time as we know it, takes on frightening dimensions so we either stress over getting to an appointment on the right day at the right time (with luck) or we dismiss anything that involves measurement of time, because it is so horrendous to try and do the measurements.

Its impossible to understand how such seemingly ordinary things can become so overwhelming and debilitating.  But if the brain will not process it, or can not process it, it simply can not.  It's not that we were/are "unwilling to" or arent trying, or are being selfish or inconsiderate.  But I do hear you, and I do understand your hurt and frustration. 

Make goals.  But make it a long game.  I had no idea just how long it would take and I too was angry and frustrated I couldnt just "fix this" in a hurry by trying harder.  But when you make those goals, you might need to work out different ways those same things can "now" be achieved, by doing things a very different way, using different methods, to get the same results.  That can only be achieved by knowing and understanding what is not working as it used to, to create those work arounds.

One thing I now "can not" do is write short responses or speak short responses.  Not that I dont want to.  Not that I didnt used to.  And I have no idea what I cant.  But I cant.  I have tried and tried.  Its broken.  I've lost it.  The same as a limb has been removed.  And yes I am going to say I have an ABI and there is nothing I "can" do to change it.  So i ask respectfully that you accommodate me a little here and understand I am doing this the only way I "can".

Hang in there.  It gets better.

[ivana]

Hi Artee,

I saw your post in my e-mail but for some reason it isn't showing up here.

Are you able to go on a little break/holiday just by yourself for a week that way you could get some rest and you might get a new perspective?

It sounds like due to your husband and yourself living in a caravan that you are constantly together and in each others spaces and you dont have any "breathing space" and this seems to be clouding your ability to see your husbands "behaviours" as coming from a condition and not from a willful choice.

Ie:Your husbands actions seem to trigger a reaction of anger in you,but anger is only felt if we believe/feel/perceive a person is doing something intentionally  due to willfully being a jerk and willfully a nasty person.

I doubt your husband is a nasty person as you wouldn't have married a person with that character and those sides of his character would have become apparent prior to the ABI if he was just a nasty type (so to speak).

So,it seems his actions are from the brain injury and if a person understands that then they no longer react with anger.

To use an analogy,imagine having a husband who was a paraplegic and you asked him to help you some gardening (for example) and then you looked a few hours later and it still wasn't done.

Also imagine have a "full bodied" husband you asked the same thing of but he didnt do it from sheer selfishness and laziness.

A person might get mad at the second husband example but they wouldnt at the first because we can understand that thye probably didn't do it due to the difficulty of getting up,or maneuvering their wheelchair,or they had extreme fatigue etc so our reaction becomes compassion and understanding instead of an anger "knee jerk reaction"

Your husband has a disability like Paraplegics.Thats not to say lifes always easy of course, living with someone with a brain injury.

In a way its more devastating for your husband because unlike paraglegia he has an "invisble illness".

People relating with someone in a wheelchair or amputee can never forget their disability but if relatingwith someone with a Brain injury,or Schizophrenia,Autism,Encephalopathy or anything else that affects the brain and personality changes sometimes they forget the person isnt acting that way intentionally.

Its hard for some people to understand that illnesses can change peoples personality but everything we are and think,say,fell,reason etc comes from our brain and not just motor function.

So if a person has the misfortune of having something affect their motor neurons,spinal cord ormotor cortex they may end up with motor type symptoms (Ie:  paralysis).

If they have the misfortune of their frontal lobe or temporal lobes being affected by an illness or injury then they will receive personality change which can even include apparent "meaness" or insenstivity.

Its not their fault or willful doing however,nomore then a person with motor symptoms.

It sounds like you need a break to help with "compassion fatigue" and help with some coping skills.

[Sally]

Ivana has a point with some of her comments - reading through much of your previous posts, the behaviours from your husband are classic symptoms you would expect from someone with ABI - Assuming this is a change from his previous personality and behaviour prior to the medical trauma.  

This scenario clicks and resonates after recently having read a story about a man who killed his wife (who was recovering from an ABI) and their children.  Whilst that course of action from this individual is totally unacceptable, the Court case talked about the how the wife's behaviour had become exceeedingly difficult (i.e. very sexualised, lack of empathy, aloofness, aggressive, and emotionally abusive) and the impossible burden this had placed on the family.  Even if your husband cannot help himself, you desperately need respite, practical and emotional support that can be tailored to his specific problems and the current situation...otherwise, you may simply be better off leaving this relationship..

[LTS]

I have been reading. I now understand why so many people who seriously did not ask to be injured with an ABI end up marriageless, friendless, and homeless. 

I had a child with a disablity. We worked with it, around it, did whatever needed to be done to improve things where possible, made allowances for her, encouraged her to do normal things even those she found difficult, but we never abandoned her because she "cramped our style".

She was the one struggling to do things, she was the one who found it harder. We were whole bodied and it was dead easy for us. It was up to us to adjust around her.  Not the other way around.

I'm old school.  I dont believe in marrying someone for the good times and what we want out of it.  Love doesnt work that way.  When what we want and how we want it changes, do we just dump them?  Like we see a better job offer over there and so go to the new job because we get a better deal out of it?  Love doesnt work that way.

Should we dump our disabled in an institution (or on the street) to fend for themselves because I mean we have rights, right?  We have the right to have a jolly good time, all the time, dont we?

Not one disabled person asked for it.  Not one is to "blame" for it.  They did nothing deliberately wrong to get this.  They didnt want it either.  And it does actually affect them a lot more than those around them.  I think that's often forgotten.  Inside the disability is a person who is having a really hard time here. 

Yes ABI is life changing.  And I mean everything!  For years I cried I WANT ME BACK!  I had a strong sense of the person I had been (for half a century) and I too had to go through "grief" because try as I might, I couldnt "return to me" as I had known me.  I lost someone I was rather fond of too.  Along with balance, smell (cant tell when something is on fire near me) taste (might as well chew on a cardboard box and cant tell if fish or anything else is off - cue anxiety). I lost being able to run!  My god I miss it.  But now I leap for joy if I can walk without wobbling.  I lost everything but central vision.  Makes it a bit hard to enjoy the view.  I couldnt work out what clothes went with what.  That part of learning and style was broken.  I had to relearn it.  I didnt like the same things.  I liked things I had previously hated.

I was not the same person.  I am a new different version of a person.  You can either like me or love me or accept me how I am now, or you can go hang out with someone else.  That much of me I now have back.  I am no longer an angst filled walking apology.  I am a human being.  I have value, even if the value is in another area now. 

Do I sound angry?  Left temporal lobe damage.  I used to think it but not say it.  Now I have no filter and anger and joy are spontaneous. Comes and goes quickly.  Its just how it is now.  I will not apologise for it but I do expect others to understand that it comes and goes quickly and its all I "can" do now.  I do expect others to treat it a bit like "mind reading".  If they could sense I might be angry about something before but I would deliberately be nice instead, I was still angry inside.  Now you just see it on the outside.  And it doesnt last.  And it doesnt mean I am dangerous.

Like a child who will cry, whoop for joy, laugh, get mad, change to happy.  You know how they are feeling.  It doesnt mean they are always one of those emotions or its going to be a permanent fixture.  It just means they (key point) have not yet learned to mask or hide their emotions as adults tend to.

I dont know if I will ever get it back.  The part of the brain that does that (sadly for me) has been broken.  And if its hard for you.  Just imagine how it is for us.

I train train train train train every day.  And I mean every day.  Some things have shown improvement but it took a hundred times longer and a thousand times the effort it would have taken a child.  Some things have shown no improvement.  I keep trying anyway.  I figure if I could live to 3 thousand years old I might get back to 20% of what I used to be.  Imagine living with knowing that.  Cue frustration.

I'm going to try to do 2 things to help in this situation.  Firstly explain "norms" and how they are almost OCD but arent actually OCD.  I spent so much "down time: (exhusted and cant even sit up straight let alone stand up) that I got into a habit of going to the computer to do cognitive exercises when I collapsed and needed to rest.  Without realising it I created a "norm".  When on a break or when tired, I would end up at the computer.  It became the norm I would move away from, do something, come back to. 

And I am not a clinician but a few things the poster has said makes me feel "she" is the "norm" the constant, the thing you move away from and come back to.  I had to actually "create" something else then train myself into it in order to stop just about living 90% of my life in front of the computer at my workstation set up so it was comfortable and perfect for me.  But changing the habit was like giving up smoking or sugar or some other "addiction".  It was not easy!

To try and get some space for yourself and alone time (if you have become the habit) might it help to create an alternative "norm"?  Have you tried you + jigsaw puzzles?  You + colouring in?  You + patience (card game).  You + a small vegie patch?  It could be anything.  And once he is sort in the habit of the other thing (with you) over time (quite a bit of time) you would then be able to move away from then come back to that activity "with" him, so the activity slowly becomes the "constant" and you have just gained your freedom and space.

Its a suggestion only.  But it might be worth trying, if you arent completely ready to throw in the towel and leave him homeless on the street to regain your life and take care of yourself.  It's up to you.  It's not easy.  None of this is easy.  And it all goes slowly and takes time.  And I'd be lying if I said otherwise.

I think its worth it.  But I'm not you, and I am not able to say what is best for you.  Only you can do that.

[artee]

@LTS I've been seriously stressing and upset over your post for days. I didn't sleep the night I read it. I have never said I was going to dump hubby. I said I want him in care. You have no idea what has happened in our 21 years of marraige. There is no part of my hubby left that I knew, since his is an anoxic injury (oxygen starvation) that affected every single part of his brain function. He doesn't have bits of damage. It's across the board and it's not mild.

I've gone out of my way to ensure he has some kind of life. Since you haven't read what I've written. We lost everything and I've worked like crazy to even have a roof over our head. I got him back into this country. If I was going to leave, I'd have done it years ago. Instead, I live a non-life, making sure he's fed, clothed and sheltered. I've covered up his shocking behaviour to others, and had to deal with losing every single part of my own life, to live with an abusive, demanding, impatient, controlling, bad tempered child in an adult body. But why should I have grief or hurt when he can't help what happened?

You think it's all about me wanting a jolly good time? I find that nasty. You haven't read anything, or understood what I've written. Or perhaps you're too busy playing judge and jury.

What you wrote would suggest that what my mother did to me emotionally as a child is fine, because she suffers ASPD? Or any child that suffers abuse at the hands of a psychopath? Or that having ASPD and stressing out at abusive behaviour, making my arthritis and migraines worse don't matter? Or are you suggesting my husband can verbally abuse me every waking moment and behave however he likes because he has a brain injury?

So it's ok for me to live in a situation every professional I've talked to says is domestic violence? Or attempting to regain my own health is not important as staying married, because he can't help being how he is? Because that's what your post says to me. I didn't ask for this either and wanting to have quality of life is not wrong and wanting not to be abused yet again is not wrong and I take offence that you suggest that.

I want him in care because I am not the best person to look after him and recognising this was a major step for me. I wonder how you see that as giving up? If he had a physical disability, such as paralysis, and I couldn't phsycally lift him, and I had to put him in care, would that be taking the easy way out? He has a mental illness I can't manage and it's making my own health worse. Some days I think I"m falling back over the edge into the abyss of depression. I'm ignored, ridiculed and insulted because I suffer chronic arthritis and the stress affects my other illnesses to the point I can't even phsycially stand.

Your words felt very hard and harsh to me, but perhaps that's because I read them the day after I learned my birth father died. The person who had me adopted out at birth and refused to acknowledge my existence after he knew my family found me. The day I read them is the day I visited my best friend in hospital, having been too sick to see her for a month, knowing I might not see her again. She died yesterday. I got shouted at, for taking too long on the phone with my sister, then ignored for hours. Today it was road rage, directed at someone who overtook us. Before anyone makes judgement on another, they should walk in their shoes.

[Former-Member]

Hi @artee,

Thank you for sharing your story and being honest about your struggles here. It takes people a lot of bravenss to admit that we cannot deal with certain situations anymore and that we need to find alternatives.

I can hear your sadness by feeling judged so please be gentle on yourself. As you mentioned, we can view some comments in a even more sensitive ways when we're in vulnerable moments.

I hope you're able to find the strength (I'm sure you have been well trained by what you have been experiencing) to focus on the bright side so to support decisions made that are suitable for your own family.

Take care,

Sky

[Former-Member]

Hi @artee

I am glad to see that you have managed to process the post from @LTS and come back on the forum to defend yourself. The discussion between you really highlights I think the difficulties that carers generally have. Sympathy generally falls to the sufferer and I think some who sympathise might tend to judge the family members as being deficient in their caring ability. I generally think that if you did not care you would not be here on the forum trying to get help and support you would of left already.

Cheers.

[Appleblossom]

It is so difficult when dealing with any disability. 

We all have needs.

Sometimes it is more clear or there is medical issues but also there is some responsibility for those with disabilties to get support and TRY to manage any aggression or manipulativeness they may exhibit even if fueled by anxiety.

Yesterday I had difficulty with a lady with ABI.  Everyone in our writing group has given her a lot of leeway but she does take advantage of them.  She was really rude and aggressive to me at a mutual friend's birthday lunch. In the end I managed it by stating that I have neck problems and some small ABI myself from self harming and know others with ABI. Yet this lady is old enough to grow up and have manners.  It was an ok yesterday for me as I could then move away from her grandstanding and carry on ... I actually have to very careful because of neck and spinal issues around that type of behaviour. I enjoyed the day with others.  I will have to deal with Madam on Boxing Day ... but will cross that bridge when I get to hit.  Its just that there can a sqeaky wheel syndrome and some can make a big noise while others carry the weight. 

I can see the different point of view of @artee and @LTS .... which is why it really important to read backstories on the forum if someone wants to make a challenging or slightly oppositional post.  Its ok for there to be different points of view, but when people are seeking help it isespecially  important not to take things out of context.

I hope you are both ok.

I read @artee original post and her situation is unique and isolated and yes she deserves support in her caring role and needs to get her hub linked in with more care from the community.

[artee]

Maybe I might have taken the other posts with a grain of salt had the timing not been so horrendous.

I had to deal with the death of my birth father, seeing my best friend for the last time and her death earlier this week and hubby's extra difficult behaviour because we were preparing to, then travelling long distances for the Christmas period. Anything that appeared judgemental was just too much stress. I didn't need to be told in a support forum that I'm the problem when I hear that from him many times a day when I'm being shouted at or insulted because I require an answer to a question and have just asked six times.

I am in mourning again for the loss of my friend. One of the two people I know that had any comprehension of what I deal with on a day to day basis. It's not that she knew personally, but that she was willing to listen and to offer suggestions.

I need to get away alone for a day or a week, but it's nearly impossible to do without a permanent home or even region where hubby can be left safely alone. I can't leave him safely overnight, as he's likely to do something that will cause him harm, because he doens't pay attention. He won't seek help and a few months ago decided that he isn't the one who has issues, so my task got just that bit harder.

[ivana]

Hi Artee,

Sorry about your loss.

You do need to have a few days/week to yourself as hopefully it would provide some rest and refreshment and the ability to see your husband with a more positive outlook.

Has your husband ever actually put himself in harms way or is it more that you fear this will happen due to his illness making him more irresponsible and unable to calculate dangers properly?

Its good to remember that your not responsible if something happens to him.

At the same time,there are practical things that can be done to minimise risks (eg:removing gas bottles,removing knobs off stoves,removing matches and so on).

If your really certain that he definately will seriously hurt himself and its not just a fear then perhaps it would be possible for a respite service to stay with him for a few days?

Some respite services try to be thoughful and flexible and match the client with a respite worker they feel comfortable with.

http://www.bluecare.org.au/Care-and-Support/By-Service/Respite-Care.aspx

http://www.bluecare.org.au/Our-Locations/Centre-Details/354-Blue-Care-Ipswich-Respite-Care.aspx

http://fsg.org.au/service/respite-adults

Jacanda Centre

07 32613311

http://www.headwaygoldcoast.org/about/our-services/

http://anglicarenq.org.au/mental-health-and-well-being/respite-cairns/

07) 3261 3311

canda Centre for Acquired Brain Injured Rehabilitation and Residential Care