I've said this before that i think for some reason i bring out the worst in mark. After this weekend I'm more convinced.
It all started Saturday my eldest daughter wanted a lift to train station which is 10 mins drive by car. Train due at 13.05 and because she wasn't ready to set off by 12 marks frustration began. I was driving of course. So we set off at half 12 as my daughter could see things building up. On the way there mark just lost it. Shouting that i never listen to him. That couldn't be further from the truth. I could see my daughters look of shock through the mirror and shook my head so she knew to keep quiet. We dropped her off after I'd got out the car and gave her the biggest hug. She needed to enjoy herself.
So i thought I'd take mark for lunch. I know he either can't or won't make decisions it's always do what you want. ...so got to restaurant car park and it started again. I know why. He said he's holding me back and I'd be better off without him! This time my reasoning wasn't working. I tried to say he wasn't holding me back and all i wanted was to spend time with him. All this in the car in the car park. By this point i didn't know what to do. So i only said should we go in or come back another day. ....and he yelled do what f******g want
Well as much as try to control my feelings in front of him. I just couldn't i started the car and thought we'd best go home.
I could bearly see through tears and without even looking at me said in the coldest way I've ever heard
You'd better pull over. You shouldn't drive like that. ..
I just wanted to get home. Which i found out wasn't right either as he wasn't sitting in the house all day.
So i drove to marks sisters by this time i felt just numb the silent tears had stopped.
When he walked in. He was like a different person. Laughing and playing with his godson. I just sat there wondering if I'd dreamt the last hour or so.
Today hasn't been much better. Is it always going to be like this. Never felt so alone it's like I'm invisable.
I lost mark that morning in April and doing my utmost but how when will he really see me. X
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debbie36a
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Hi Debbie, Just reading your post is making we fail up. Its so tough for you and I know how you feel. My wife is string and hides it but some times she lets it out, this is rare but happens. My father doesn't understand whats happened to me even though he claims he does sometimes the flippant replies prove he doesn't.
My heart and prayers are with you. I don't know what to suggest apart from be patient but I'm sure you have done this. Would Mark be prepared to listen? As said before would he go to the headway centre and listen. I understand his feelings are not what they were as he's changed but he must still know who you are and love you. Doesn't he see that you get upset and he's the reason in this case.
Be a good idea if you could talk to someone too, someone who knows how to help you in these situations. Im sure they could help at your local Headway centre, its worth a try. I really hope you have a good day, God Bless. XX N
Think it's time i contacted them just to explain. I don't think he did see how upset i was he didn't even look at me. ...mine you he rarely does until i say look at me. He just kept his eyes on the road. Anyway just got to work gonna be a long day. Hope you have a good day too xx
Hi Debbie. See if you can get yourself and Mark along to Headway support groups, you will be able to get help and advice from others with BI, as well as keep on this forum. It is hard for the carers as well as those with The BI. I'm not sure how my wife copes with me. Keep strong and keep talking.
Debbie my heart goes out to you both. There is so much in your post and please forgive me if what I say is not east reading for you.
It is still very early days for you both.
You did lose Mark that day in April.
Mark seems to have a level of awareness of his injury and that is why he told you to pull over...it was not safe.
Playing with his godson says it all for me..it may not look like it to anyone else but we with a brain injury are like children in a lot of ways and play is learning without the hassle of trying to be an adult.
I say this because a lot of what you have posted resonates with me. For me the worst was being followed round the house making sure that I had switched things off after use or locked a door. Trust me they were rough times but we got through them.
Being easily frustrated seems to be part of the territory of the early days of coming to terms with the new life. Even if we can talk we can't always reason. Can't promise it would work for you but you could try some distraction techniques when you first notice Mark showing signs of frustration. Looking back they worked on me.
If it is safe you could leave Mark at home in situations like this one in future.
Now Is the time to remember THAT smile!
Lots of lovenhugs
Xoxo
PS please can some of the carers/partners give Debbie some words of encouragement thanks.
Hi Debbie. Please don't feel bad about posting the bad times. This is your space where it is safe to do this. We wunderstand more than most where you, and Mark are at. There is no judgment here....we wear those shoes.
This isn't you ' bringing out the worst ' ... It is the draining, terrifying, at times trudgingky boring and yet sometimes awe-inspiring and achingly exhilarating experience of you and Mark scrambling together up a mountain called 'life post BI'. It is a buggrr to climb and there are lots of scree slopes to send you sliding back down, grazed and sore. You just hit another patch of scree. And yes, it hurts and it makes you feel like it is too hard getting back on the path.
But it is worth it, hon. And that is part of why we are here, to shout down to you on those days when we are that bit higher up, to let you know you can get here too, to tell you about shortcuts or ropes you may have missed, and to wave at you a big picture of that smile to give you encouragement to keep going.
And Mark no way wants to be on the mountainside without you, believe me. It is just that sometimes, we feel it would be easier to find a cave on the side and curl up and leave it at that. And those travelling with us end up feeling unwanted, unappreciated, unloved. But it isn't like that at all, it is just it can and does sometimes totally overwhelm us just how big the mountain is and our poor befuddled brains can no longer cope with the concept and so go to shutdown.
When that happens, we need to foget about the mountain and think about the next step. And only the next step. Because with those who love us beside us we can always take that next step. And then the next. And after a while we can stop, and smile, and enjoy the view.
This, I still am on the whole calm, but I do get angry and it lasts for days sometimes! And it's often over nothing, I do get stressed and overloaded sometimes with people leaving the house etc.
I am better at recognising it and not letting it take control but not always sadly!
As others have said 'it is not your fault' and you are not the reason Mark is now so easily provoked, irritated and angry. I just looked back through your posts to remind myself what happened to Mark and I note that following his tbi he had part of his brain removed. I am wondering what area of the brain that was and whether that explains the difficulties of emotional control that he is presenting with or whether he has damaged his frontal lobes? The frontal lobes are responsible for our executive function so the control centre for all we do in our daily lives and our emotional control. If this is an area of his brain injury the difficulties with processing information, decision making, being able to apply the 'brakes' on his emotional responses, to think through how to deal with a difficulty or conflict etc may be affected. Anger and irritability can also be a result of the frustration felt through not being so able to follow conversations, multi task, deal with busy or noisy situations and other everyday stressors. Plus if he is aware that he can't do things like he used to be able too with some loss of independence, unemployment, financial worries etc this will be felt by Mark and expressed as anger but is frustration with the changes in his abilities that he is now struggling with. I can identify with this as I also find my limitations and reduced ability results in me being frustrated, irritated and angry and I have little control over expressing it! Other possibilities are that he is depressed because what the tbi has done to him and his life and he is depressed because he is struggling to accept or come to terms with that. It is like a grief process he has to go through to accept that the previous Mark has gone and is replaced by a very different and changed one. As his nearest and dearest it is you who gets it all directed at you and has to try and cope with it whilst you also have to try and accept that the Mark you knew has been replaced by a changed man. Yes do ring the Headway helpline if only to off load all the upsetting stuff that is happening to you both. But hopefully they can help you both access some additional help too.
I believe it must be his frontal lobe if not more. I will have to approach the headway help see how he feels about it. I wish i could fix him.breaks my heart
There IS help for Mark's anger Debbie ; it's just a matter of whether he'll, firstly, accept that he needs it and, secondly, agree to go for it.
It really is very early days in terms of readjustment, and frustration & anger is so, so common after brain injury. Please get some advice from the Headway helpline rather than trying to muddle through this yourselves ; their help is available for just such problems as yours & Mark's.
Their number is 0808 800 2244 9am-5pm, mon-fri. They can arrange treatment for Mark to help him recognise the triggers for his anger and coping strategies to deal with it. It's a long process, but hopefully it can help you to unite in fighting back against this barrier between you. xx
I do feel for you,please do take the time to ring the helpline when you get in,i PROMISE they are amazing,i know youre world has stoped spinning headway helped start it up again,however in the end you need to do what feels right for you and youre daughter,blessed be xxx
I have rang headway and told them everything she gave me a number for a local group but it only runs once a month. She just said to ring anytime but I'd rather stick with this group.
Anyway i have contacted marks BI rehab OT who has just recently started coming to see mark and asked if mark is going to get any neuro phycologist help as i feel he now needs this.
No reply to my text as yet but I'll keep on about it xx feel better today hope your well
Please believe YOU do not bring the worse out in Mark. This is classic brain injury behaviour. Mark's brain is coping with damage , broken connections , which in turn situations, emotions because confused. An analogy of Mark's brain is the motorway is blocked and thus the B roads have to be used, but sometimes they are not working or the driver who is delivering the 'information' has forgetton the he is delivered.
I too as TBI told my partner often he would be better off without me. It was not because I did not love him dearly, but I felt a burden, I could not come to terms with my brain injury in the early days, and sometimes I felt God it would be better off being totally alone and at least I could cope better without having to cope with my anger, non acceptance and fatigue, and not have the pressure of 'still keeping it together' and having to be so controlled to not cry,become angry and stressed.
Mark reminds me of me three or so years ago, and I can still be like this now. The clock is ticking to get the train, it is getting late, and the anxiety in Mark will be building up, and this turns into anger. His eyes will be fixed on the road when you are crying because he is probably thinking 'shit I cannot cope with the pressure, anxiety and anger, and I have upset my wife, I do not know what to say, I upset my family, so he will keep quiet' unable to rectify or understand where the hell this all comes from.
He may have put on a front for his sister and played with his grandson for distraction. We can change very quickly from anger to normality. I know because my partner told me so.
As others have said it is important to have support. Local Headway groups are a lifeline for carers and for person with the injury to help understand what the hell is happening as he will feel out of control. If you can ask to be referred to neuropsychologist. It saved my relationship, which at one point we could not cope, and very much on our own, with no family support. I left and stayed with my son for a bit because situation was not good. But, we got through it😄. It is not easy, but neuropsychologist will be able to 'unpick the knotted knitting ball' as my neuropsychologist described and implement strategies to keep our relationship sane. It is early days, but it does improve with the right support. I think you said Mark had frontal lobe damage, which I have. This controls your emotions, appetite and executive planning.
Hi Debbie just wanted to add that I have read this whole thread over again and I am having the lump in the throat moment... Where else would you or I or any of us get all this support and help? Just makes me realise how important this forum is and has been for me making me realise that I was not alone in my thoughts when I first came on here and started sharing my problems.
I know how I felt and sometimes still feel with family and loved ones especially my mother and father. Not caring for them and thinking they were against me and that my wife was and then battling with my own thoughts thinking how could I be thinking that and why would I be thinking that...? A constant battle but the reason BI.
As said above Mark is in there and as Cat said he doesn't want to be alone either, I know its tough and so does my wife and kids but it will be worth it in the end. If you can get to a headway centre and take Mark with you. God Bless. N
I don't know what I'd do without you all. No one else understands. I am ringing headway today. I'm ready now and that is ALL down to all your support on here. I adore mark and i won't give up. I just lose my way at times. X thank you
Oh Debbie I feel for you, because whAt you wrote reminded me why I left my husband nearly 3 yrs ago. He used to be the same , his mind worked but his brain didn't. I used to think he was callous, and of course in company, the most genial friendly person you could wish to meet.
To best if my knowledge, not had or done anything to cause BI. Although I do know a ? Gun he was using at work, putting nails in a ceiling, apparently a nail hit something too solid above, then made a horrendous explosive noise and he's always had tinnitus since then. All long before I met him, just what he told me. Funnily enough his brother also has that, and has similiar personality characteristics. Kept telling me straight after my car accident I should go out and buy another car and drive straight away, it would have been more convenient for him if I did. So no, no empathy. Rather than be an inconvenience I moved to a village with a couple of shops, sorry though I felt for my s-I-law. I didn't want to be n inconvenience, and I'm the one with the brain Injury!
We were all brought up during the 50's, when walloping kids was acceptable then! You really make me wonder, which I know doesn't help you, and I'm not advocating you leave him, but I can relate to how Mark has left you feeling. We all know something physical, however it happens, leaves it mark on personality and the brain. I hope you are feeling a little better/happier today. Shirley x
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