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RachelEBarber profile image

I'm not sure if this is the space for me as I'm a relative and not the injured person. 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 being on this space. I'm not the one with the injury. 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. I hope someone can help me.

23 Replies

please dont feel like you dont belong here, you are more than welcome here, and it's good you have found us, there are other non brain injured persons here too, and for the record i believe that family and those close to us suffer more than we do at times.

know one will pretend things will be easy, but you can expect here is knowledge that we have gone through are going through it, and by we i mean brain injured people and their carers

you are not being selfish, you are just looking for the support you need.

it may be worth pointing his daughters to this thread so they can understand and get support too, no question is insensitive or wrong and we don't have to tip toe around issues.

but remember every brain injury is different, in the terms of symptoms and recovery, but there are a lot of core similarities too, so we can only guide you with what we have been through so don't take what we say as gospel as its very subjective.

now how can we help

you say there is division with his daughters (i assume you mean they are your step daughters by that) what is the issue and how was it cause, maybe if we can find the problem, we can offer our advice and they can read it and/or join in and get better understanding and support

Hii, I will add my support to you too, this is the right place for you, Biker is very helpful and writes a lot of sense, listen and take his advice, he can be o good supportive friend, we are all here to help with a wealth of personal experiences to help you along the way, don't feel alone or that you are being selfish, what has happened is life changing, so get your support where you can. Take care xxxxxx Janet

Thank you so much.Yes you could say step daughters although that's not really accurate. They are in their 30's and they have never lived with us or indeed been very involved in our lives.We've been together 15 years. I know Peter would not want a PEG and have fought hard to try to wait until he would eat normally. In the end I have agreed. They think I have put him at risk, delayed his recovery and "given up on him". His prognosis isn't good. Peter would not have wanted life at any cost. They disagree. They say I am not making decisions in his best interest but my own and want to "turn him off". I am beginning to wonder if they're right.

I try to explain that it is my life that is utterly devasted and the only person who could make me feel better isn't here. That I'm fearful of what the future holds for Peter and for me. They always come back that it's all about me and that they will go one seeing him whatever.Implying I don't love him enough to do the same.

cat3 profile image
cat3 in reply to RachelEBarber

It would be such a relief to get the 'other' perspective as we are the former family of the sufferer and his wife won't talk about him. (Post below). x

i had a sah in dec 20007 i still say today without the one i love besdide me everyday urging me on encouraging and cajoling at times frequently re assuring me of her love for me i would not havre remained alive let alone walking such that walking with a stick is no strasnd by your man this is a very uncertain time and life will never be the same again but i urge you not to abandon him in his hour and time of need

I would only stay away if I am doing him more harm than good. Whatever the outcome I will fight for the best for him. It's just that I'm not sure that I see the right "what is best". I desperately want him to come home but don't know if I'm up to what that might mean. I feel I might condem him to a life in a care home when if I love him enough and am strong enough he could come home.

i think being open and sharing your fears and feelings with his daughters might be best (not always easy or possible i know)

but it really is early days, so don't give up

you say peter would not have wanted life at any cost, but i think you need to go forward with the assumption that he is going to recover and do whatever it takes, because any help he gets now early on, can make a big difference, no one know how well he will recover, but a lot of us here are testament to the fact that we can recover well enough to live a good life, yes we have problems, issues restrictions, but i can tell you that i would rather be here and disabled than not be here.

its a case of rolling with the punches and taking it day by day.

its hard, very hard for everyone, and truth be told its probably going to get harder, but hopefully things will get better

lubilu on here may be able to offer better advice as she is in the opposite position you are in, she is the daughter and her step mom is taking charge, so she may be able to offer some better help and or advice.

dont give up hope, the person you love is still in there

their helpline is on 0808 800 2244 or to talk things through in more detail. They should be able to give you guidance and support to get her the help you need.

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...........? What has happened was, and still is, beyond your control and it's natural to have a whole range of feelings which you wouldn't ever have had before.

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.

Geoff remarried many years ago and we are experiencing similar difficulties to you but with his wife. Everyone agreed that Geoff should have a PEG as he was unable to swallow........that was soon after the sah. However, he is now being introduced to soft foods and seems to be coping so far. And we all (daughter, son, mother & me) think that, even though he's now in a nursing home, he should be receiving speech and physio therapy to at least give him the chance to progress a little more.

Until now, only his wife has been allowed access to his doctors, and she has not been passing on relevant information to the rest of his family,which has been heartbraking for our son and daughter as they've always been so close to him. But finally, these two wonderful people (daughter & son) have pushed through the red tape and are now able to speak openly with the GP responsible for Geoff's care, and he is arranging for a reassessment and possible therapy.

My heart goes out to you, Rachel. I remained friends with Geoff since our separation and I have lost a lifelong pal. But I've had my own life, and I know it will be devastating for you, as it has been for my son and daughter and Geoff's 91 year old mother.

To get more information, you might be wise to speak to my daughter who's also a member here (under the name Lubilu).

I'll alert her, if by the time I post this, she hasn't looked in on Headway.

Be kind to yourself.........please don't feel guilt for whatever you are feeling at such a troubling time. Cat x

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Rachel - please don't give up!

When a brain is recovering it needs an awful lot of energy (it uses 20% of you calorific intake when you are well!), so it is really important that Peter is getting enough of the right nutrition at this crucial time.

My husband sustained a severe brain injury in October 2011. He was given a PEG as the NG tube is so invasive and unpleasant.

It took 6 months for Jake to start to have thickened fluids and another 3 months before he was ready for a normal diet - he's just scoffed roast lamb and apple pie!

This is not the hospital giving up on Peter, it is them giving him the best chance whilst maintaining his comfort.

You are amongst friends here Rachel - hang in there.

Charlie & Jake x

Hi Rachel, I don't really know where to start as its been such a long road with so much happening along the way! First, my Mum ( Cat3) suffered a SAH (bleed on the brain) it was a terrifying time but luckily she has recovered pretty well ( there are some after effects and for mum they aren't much fun but she is still cracking on with her DIY!) 8 months later (aug 2012) and things were just calming down when I got a phone call at work from a nurse to say I needed to get along to the hospital with my Brother as soon as possible as my Dad had suffered a catastrophic SAH. We were told he may not survive the night. ( whilst this was happening, Dad's wife was very quick to remind us she is next of kin.... I thought hmm, this isn't going to be easy!)

We all eventually left the hospital and I told my Husband that the scale of Dads brain injury meant if he did survive it would mean that he would probably never be the same man again and if he was going to be left severely disabled he would absolutely not want to carry on - this is something he said to me many times over. My dad was 65 at the time, still had his own business and worked his bum off. He would then go home and start building something, or smashing something to bits! This sounds awful but I honestly felt that dad would not want to get through that night if it meant his quality of life was going to be changed so drastically, and as I knew how strongly he felt about it, It broke my heart but I thought that if he was going to be left with severe brain damage then it may be best if he quietly slipped away.

We were called back to iCU early the next morning as he was going to be taken off his ventilator and it would go one way or the other. We were waiting to be told it was time to take him off the ventilator, however, a nurse came to tell us he has begun to breathe on his own before the ventilator had been removed, they whisked him off for surgery and he remained in a coma for 3 weeks.

At first he could not move or speak and he was fed via NG tube. He gradually regained movement in both arms and has a really good grip. He was gradually introduced to thickened liquids and soft foods for a while but stopped swallowing and was given nutrition via a peg. This is something I have never questioned. The thing is, he did survive whether he likes it or not and not giving him nutrition isn't an option.

He was eventually transferred to a physio unit but eventually they felt he wasn't improving so an alternative had to be found. It would have been too much for his wife to care for him at home ( she did want to and was looking into adaptations) he is unable to walk and is still being fed via the peg. Although in the past couple of weeks he has started having soft foods again.

After dad had been moved, I kept asking his wife if physio had been arranged but she just kept saying he needed to settle in. 2 months or more down the line and she just kept giving us the same answer. We thought that as she s next of kin it would be impossible for us to speak to his G.P. ( we have hit many a brick wall previously when trying to get info from the various hospitals he was in as we are not next of kin) however, the nursing home gave us the G.P's details and my brother and I have both spoken to him and he is now referring dad for a physio assessment. I just felt that dad was just being let down. To me, he cannot speak..... He needs someone to push for the right treatment for him.

The way I look at it is, yes, Dad never wanted to be like this, it was his worst nightmare, but it has happened so what option do we have but to make sure he is getting the care and treatment he needs in the hope that he will gradually recover enough to have some quality of life. We cannot leave him lying in a care home waiting for someone else to do something because it won't happen.

I know it is hard for you as his wife, my heart goes out to you, but it must also be hard for his daughters. The thing is we all feel guilty that we are not doing enough or we are not doing it right but there is no instruction manual for these situations and all we can do us our best.

Thinking of you, Helen x

Hi Helen, you've said so many things that fit with my feelings. Unlike you, for a while I thought Peter would not forgive me if I allowed him to have the PEG, he would say I should have let him die. It took me a long time to accept that his body had made the decision to live. He has TPN as he kept pulling the NG tube out. End result very acrimonious best interest meeting with his daughters who feel I just want to give up on him. Not true. Anyway PEG is now going ahead.

Yes I said the next of kin thing too! I can only tell you that I felt I was the only person who could protect Peter and yes I was fearful his daughters would try to take him away from me.2nd wives feel they're up against the ex wife in the background and children who have know their dearly loved husband longer than they have.

We don't have the best of relationships but it's never mattered as everyone could remain civil and not under each others skin. The thought of having to let them into mine & Peter's life felt (feels) like an intrusion.I haven't excluded them as you seem to have been and they have always been able to get the same information as I get. We just don't talk and seem to have entered into some sort of hierarchy of pain and rights.

My worst nightmare is Peter having to live out his days in a nursing home. It seems to me that I will have failed him in everyway if that happens. I couldn't let him slip away and I'm not good enough to bring him home.

I will try to mend the relationhip with them. I have started realise that if I want Peter to come home I am more likely to be able to achieve that with all the help & support I can get. If Peter& I are to have a life together maybe I will have to share him more. This must all sound so selfish.

I didn't really expect to get much help from this "support group". Couldn't have been more wrong. I've heard from people who suffered the injury, wives much further down the very long road and you helping me to look at why I've been like I have with his daughters.

Not bad for Day 1.

Thanks to all of you. Feel like I have somewhere to turn.


Hi Rachel, we haven't fallen out with dads wife, she just doesn't communicate and only rings us on the pretext of passing on information when she wants a lift or something. We wouldn't mind at all but she never once has genuinely asked how we feel and has cut my nana, dads 91 year old mother who he loves dearly, off altogether. My nana hasn't done anything to deserve this, yes she goes on a bit but how hard must all this be for her. We do speak to her but gradually she has pushed us away and I find it really awkward to talk to her. I wish she would open up properly and we could all support each other.

I agree that if you can work with his Daughters it might make things easier. If you try and it doesn't work then at least you have tried.

We all think we can't cope when something this overwhelming and life changing happens. When I got the phone call about Dad (after what mum had been through) I crumbled into a sobbing heap at work and remember saying I can't go through this again, but here I am over a year later, I've had no choice!

Every case is different and maybe your husband will recover to enjoy some quality of life, fingers crossed xxxx

Ps neither me nor my brother would want to take Dad away from his wife and my Mum doesn't interfere, she only offers support to me and my brother, she and dad remained friends but nothing more and she has tried to be quietly supportive to his wife. I am not sure of the history with your husbands daughters, all situations are different so I can only talk from my own experience which may be different to yours xxx

Hi Rachel, My husband had his TBI 10 weeks ago. The doctors told us he would probably never recover. Now he is in rehab, eating well after having had a peg for some weeks. I felt much the same as you, would he want to live a life dependant on others & was quite prepared to "pull the plug".

He proved them all wrong & has fought back. Without the peg, he would have starved.

I know it's going to be a long battle & at times I think to myself, would it have been better if things hadn't gone that way. It's not selfish, it's normal.

I have days when I wonder how to go on, but you do!!. Keep writing in, I have found the support amazing

My son had a PEG after a TBI also a trachy to help him breathe. He came out of hospital still with his Peg in although he was by then eating normally. It was a simple process when he had it taken out. He still bears the scars although they do fade but without both operations he would not be here today.

It is not the end of the line to have a PEG fitted it is almost an essential to help get better.They are given all the nutrients. Probably better than our diets!

Rachel, I've been talking to lissaip and have been very encouraged by her story. If you haven't read it you might find her words quite inspiring ?

Hope you're bearing up. Thinking of you. xx

Hi Rachel.i too live with partner who suffered severe brain injuries.hubbies happened a year ago and hes still left with many difficulties even tho he thinks he is back to normal.i feel I hav lost my hubby too.everyday I deal with major rants and paranoia.repeats a lot as well.i get to point where I feel I could walk out even tho I know hubby can't help it.doesnt make it easier to deal with on day to day basis.the close relationship he had with our 8 year old daughter has been affected as well and often I hav to comfort her and is very hard to hear ' I want my daddy back' our son has moved out as couldnt cope either.your not alone and this group is great as the lovely people on here can offer perspective from both sides xxxxx

Hi Rachel-Same happened to my husband 19 months ago-told he would be very badly brain injured and initially it appeared that way, couldnt feed himself, speak etc. dont give up, fight his corner my husband is now driving which i would never have beleived. You are human! we all get these feelings of why us etc-all on this site have been there!It's hard but it is very early days. I know you dont stop thinking about it every minute every hour and i really feel for you! x

Hi Rachel, my partner suffered hypoxic bain injury a year ago, coma for 6 weeks then PTA for 6 weeks. The prognosis wasn't good. As Charlie says, the NG is so invasive. My partner pulled his out every few days and it was so distressing for him to keep having it re-inserted. His PEG was a blessing - for all of us! He was certainly a lot more comfortable


He started eating by month 4 and his PEG was removed by month 6. It's still very early days in terms of recovery for your husband, so every reason so stay hopeful. From being unable to sit up, control his limbs or do anything for himself (no memory of family, limited speech and much more!) my partner can now walk, talk, feed himself and even managed to escape from his rehab hospital last week, on his own and catch a bus home! Something I thought would never be possible!

It is a roller-coaster ride, take one day at a time and never give up hope.

Yep another wife of a BI man here - he was in a coma and they said he could have ended up a vegetable but he's here, seven years on, walking and talking as normal in the main. He has memory problems and mood swings but in the main I think he's done alright for himself. Hang on in there, the next few weeks/months will be like a rollercoaster but you'll get through it. Doctors are programmed to give you 'worst case scenario' Rachel, and having been on here a while, I've yet to hear of a worst-case actually happening. Good luck x

Forgot to say, my dad had his NG accidentally inserted into his lung, this wasn't picked up for at least a day and the feed was going into his lung during this time, his lung was also punctured but he was unable to tell anyone as he could not speak. After surviving his brain injury, he ended up back in ICU. The peg is by far a better, safer option xx

my dad suffered a tbi 14 weeks ago and it was a very bad bleed, they said he might not even survive the night but being the tough irish man he is he has and he is getting stronger by the day, my dad had to have a peg fitted 2 and half weeks after the tbi i didnt even question it as i knew they was doing it for the best, he is eating normally now but still has the peg fitted and he dont mind as he knows he is getting all the vitamins and minerals that he needs xx

Hi Rachel, you have some wonderful knowledgeable support here from those who know exactly what you are going through and can give it to you from both sides of the fence. It makes me feel so inadequately knowledgeable to comment much or offer support when I now know how very very minor by comparison my own TBI was in March this year. This forum and the replies to posts made, by many of those above, now supporting you, have in the main been of such support to me and comfort by just reading them. Just as my own friends support to me helped enormously

Please try and take heart, comfort and strength from all the above you have here and know that you are not alone in your anguish.

Have you spoken to Headway, or perhaps told Peter's ex and/or daughters about Headway and this forum ? If they knew and started looking at Headway's site and this forum, who knows, but it may help sooner rather than later to help build some bridges between you all with a mutual understanding and acceptance that you do all want what is best for Peter. My thought are with you x

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