AM I BAD / WICKED / SELFISH OR MAD

[RachelEBarber]

Peter (my husband) had a TBI 3 months ago. Still has severe PTA. Can anyone tell me how they felt?

[ncmurphy1951]

i might be able gto if i knew what pta was apart from parents teacvher association

[RachelEBarber]

Hi. Post Traumatic Amnesia. I do know the longer it goes on the less recovery Peter will make. He still doesn't know us and is not making any new memories. He lives in his own far away world.

[cat3]

Hi Rachel. You are obviously in a dreadful situation after what has happened to your poor husband, but why do you ask if you're bad, wicked, etc.......

My ex husband,Geoff, had a massive sah over a year ago and still doesn't speak or walk, but he does seem to recognise people and responds to questions by nodding or shaking his head. ( His haemorrhage came 7 months after mine but caused more damage). So my son and daughter have been through the same trauma twice.

Can you tell us a bit more about how you're feeling ? Cat x

[RachelEBarber]

My husband had a TBI 3 months ago and is still in severe PTA. I feel like he dies again every day. I feel selfish as I'm not the one with the injury and am terrified of the future. Right now I don't feel I can find the best way to support him because I'm not even sure I am good for him. I've struggled with agreeing to the PEG and created real division with his daughters. They think all the above. I don't know if I can face being a carer. If I love him enough surely I can?

[cat3 in reply to RachelEBarber]

That's a natural response when you're faced with something so overwhelming. But your mind is leaping ahead, imagining scenarios which may not be relevant. If Peter is three months on from his tbi, it suggests that any recovery will be long and slow. So you, also, need to slow right down and stop torturing yourself about the future....one which might be very different from what you're imagining.

Please don't try, at this time, to reach any conclusions about your relationship, you sound like you're still in profound shock and need to be attending as much to your own needs as his.

Do you have people.... family members to support you ? I wonder if some counselling would help you to get to grips with all this. Headway helpline is where many people have received great support in times of trauma. I see biker has given you the tel.no. on the 'Post' section.

But as you already know,by now,there's a whole bunch of people here whenever you want to 'talk'.

Please accept a massive hug and very best wishes. Cat x

[Dorsetcharlie]

Having a loved one suffer a brain injury is like being in trapped in some dreadful game of snakes and ladders...with some REALLY big snakes! Please don't judge / doubt yourself; its a terrifying time and you're still there, that's all that matters.

3 months is very early days in brain injury land (I'm sure you're already sick of hearing this), so try and remember that, even though it doesn't always feel like it, there will eventually be more ladders than snakes.

In the early days we kept a weekly 'facts' journal to help keep us sane. This contained the things we knew (minus any optimism or pessimism) about my husbands current condition. Every 2-3 weeks it showed us small but definite changes and helped us to see the upward trend in the midst if all the terror. I also writes a blog which is hugely comforting and will, hopefully, be helpful to Jake one day. I recommend this as an anti-madness strategy! (hopegoesupanddown.blogspot....

My heart goes out to you & I'm sending you a bucket of hope.

Charlie x

[RachelEBarber in reply to Dorsetcharlie]

Hi Charlie,

Looked at your blog. Right now I don't think I can hang in as long as you have. Nearly 2 years. Him not knowing me every day is a living hell. The only thing that makes it bearable is that he has no awareness of where he is or what has happened. Most of the time he seems quite content in his own world. He's just started with another infection (he was low yesterday) so they're trying to get to the bottom of this one. Everyday I want him to know me and everyday I'm frightened he will. What if he doesn't love me any more? What if he loaths how he is? It's like being between a rock and a hard place. Thet tell me he's making good "functional" progress. I don't allow hope. That way I don't get disappointed. It's 3rd time round for both of us. Met in our 40's. For me I found the right one at last and to my great surprise after being together for 15 years Peter decided we should get married which we did last August. Peter's accident was on 17th June. Not the 1st wedding anniverserary I had imagined. It seems so unfair to lose him when it's taken all these years to find him. Rachel

[bikerlifestyle in reply to RachelEBarber]

What if he doesn't love me any more? What if he loaths how he is?

none of us can answer that first question, BUT think of it as starting again, starting to get to know each other, a fresh start, learn to love each other again.

in one way we brain injured people are lucky, its not often people get a second chance to be how they want to be, and i bet if you asked the majority of brain injured people if they are nicer people now and they feel they are better than they were before, they would say yes.

so whilst your love may not be the same, its not to say it wont be there, and depending on recovery you will love new traits and you will hate others, but thats no different to a normal healthy relationship.

what if he loathes how he is?

has the specialists talked to you about anger?

now we all go through a period of self pity, and mourning these times can be hard, we will hate how we are until we learn acceptance (acceptance is the golden fleece, it can be so hard to find, but when you have it, it can work wonders).

now if there is one thing i want you to remember is however angry he gets, however vile the things he says are, he does not mean any of them nor probably will he remember even saying them, IT IS NOT PERSONAL i cant say this enough, i was vile to my family, but i did not mean any of it, nor do i remember saying the things i said, i only know because they have told me

now not everyone has severe personality changes or excessive anger but it is common so just be prepared

i am trying to explain and dont mean it to sound so hopeless, because its not, i just don't know how else to explain it.

i was in a similar situation i got married in nov 95 and moved into our new home the week after then in march 96 i had my motorcycle accident, i have no memory of my wedding, i look at the photos and they mean nothing, they could just be photos of someone else.

this is hard, very very hard, but do not give up, as you said " it's taken all these years to find him." and he will be inside, and he will know you are there, even when we do not show it, he may not remember the things you do for him but he will appreciate them and he will know you were there and then every now and then you will get a glimpse of the old him, until you either get the old him back or adapt your love for the new him, but he will end up a better person, i think we all do, and you will have even more bonding you together.

as i said i dont mean any of this to sound negative i just dont know how to explain it any other way, nor do i say any of these scenarios will happen, everyone is so different in their recovery speed and amount i have wroe this and dont even know if i am making a point i have just rambled on. but i hope there is some comfort somewhere in here

[Dorsetcharlie]

It is horribly unfair and I do understand Rachel, believe me. I am sending you every ounce of hope I can muster. Charlie x

[iforget]

Rachel I too want to send you hugs and buckets of hope and patience and humour (all of which you are likely to need). When someone gets a traumatic brain injury the focus is always on the patient, but the trauma is not their's alone and it affects everyone around them, especially those closest.

You are not bad, wicked, selfish or mad...you are human. Your feelings, hopes and fears are all perfectly valid. Be kind to and gentle with yourself as you move through this journey. It can sometimes feel like walking through treacle...but its not all sticky, there is sweetness too.

You are not alone and there is support available. If you ring the Headway helpline they should be able to put you in touch with your nearest group.

Take care

[BaronC]

I can only add my twopenneth to what has already been posted here. You are never alone and don't hesitate to ask for help and advice any time. The carer often needs just as much help as the one who has the condition/accident, etc. I know my friends and family did. In short, stick around, we don't bite