Feeling shell shocked

[Lormck]

It's now a month since my husbands fall, he remains semi conscious with a traciotomy - at times he looks at you and a few days ago was following you round the bed with his eyes but mainly just staring into space. He appears to be having terrors and shifting to get away from something..... he is now 48 hours off the ventiliator and they are looking to move him to the Neuro ward. He doesn't respond to any commands..... it's awful and for me cruel, it's not what he would chose and I feels the doctors are not listening. He was a gym addict, hands on daddy, immaculately groomed and he would be mortified to see himself now ....... he is 48 and our daughter is 11.... just so low at the moment as I can tell from his eyes that he is not in there yet I can't help him. I am scared that what he will become is not what he would want and yet I can't help him.

[Hidden]

lormck, it is still early days. If you read posts from people here, many of them were every bit as bad as this in the beginning, but went on to recover most, if not all, of their faculties. It is really awful for you, you are the one watching unable to do anything. Just try to hang in there for the moment and wait and see what happens, he could surprise you. Brains take a long time to recover and all the time he is lying there, repairing is going on. Don't give up on him yet. Keep talking to him, play some music to keep him calm, maybe read to him, anything so that deep down he will know you are there. And look after yourself and your daughter, you have a long road ahead of you and you need to keep up your strength, for him as well as for you and you daughter.

If we could be there to help you, we would but remember that we are all thinking of you and wishing you well.

Keep strong xxx

[Lormck in reply to Hidden]

Thanks it's just looking at him, wasting away, his head dented in and all the problems with the traciotomy bleeding I can't see a future, I am travelling to see him everyday (50 mins each way on a good day) and my daughter wants my time and energy as well. Everyone is telling me to take a break but if I do it feels as though I've abandoned him, I guess my biggest fear is that he won't know his feisty, talented, beautiful little girl who loves her big strong daddy and that literally breaks my heart every minute of every day to the point I am physically sick x

[Hidden in reply to Lormck]

You aren't abandoning him, you are regaining the strength to carry on, it is vital that you do it for all of you. Can someone else be with him sometimes? I know it is so hard to see someone like that but this stage won't last for ever, he has come out of his coma, that is one good sign. When the tracihiotomy can be removed things will be a bit better, that may be what is bothering him and causing the terrors. He was obviously a very fit and healthy man and is still relatively young. He has all those things going for him.

I think if you spoke to the relations of everyone on this forum who has had brain injuries, they would all tell you that this is the awful time, the not knowing, feeling useless. The person with the injury is not aware of all this. I know I didn't think we'd ever get through it and I was on my own, none of our family were nearby but gradually things improved. I brought my husband home from hospital unable to dress himself, feed himself, with no recollection of anything that had happened in the last 10 years. Gradually though, we worked through the problems, he learned the basics and then we started to relearn how to live a normal life. Your daughter will want to do her best for her beloved dad and will help you to get him through this I am sure.

Have you been to your doctor to get something to help you sleep. If you can sleep at night it makes it easier to cope during the days.

Lots and lots of best wishes to you.

Jan

[Lormck in reply to Hidden]

Thanks Jan x you are so kind X not been to my doctor an d need to get back to work soon I can't be off indefinitely. Laura x

[cat3]

I echo wholeheartedly what Jan Is saying. A broken limb might take six weeks to achieve simple 'knitting' and the person it belongs to can more or less get on as normal.

A broken brain brings everything to a halt, and for much, much longer. Please try Laura, to imagine the healing ; the invisible healing, which is taking place in your man's brain all the while rather than seeing hopelessness.

A month is nothing where a mending brain is concerned and your husband has everything he needs right now, which is time............and more time.

So take time for yourself and your daughter to gather your thoughts and rest and sleep, to gather the strength you'll need when he comes home.

There will be changes but, just like everyone here, all of you will adapt and accept those changes in time. I wish you strength, and that you'll see the light at the end of the tunnel really soon.

Love Cat xx

[Sem2011]

I cannot add much more than the ladies have already said. Please consider taking a break from visiting, or visit every other day, you must be physically and emotionally drained. I realise it must be hard not visit him as much, but Cat is right, repairing inside is taken place. Please do not be offended by what I am about to say, but just from my own experience in hospital with TBI,

1. I did not have much memory of my stay in hospital.

2. I felt so 'out of it', I apparently was conscious, but not aware, sleepy, nauseous , and could be quite anxious,confused and angry.

I guess what I am trying to say is you need to recharge and have some time at home to rest, sleep,eat well and be with your daughter. From what I said about my admission I could not tell you if my partner came in every day or not, but he knew I was in good hands and if a change in me was concerning the hospital would contact him. If you visited every other day could be an option. yOur hubby is improving and yes it is a long journey and you will need the strength and energy for his return home. You need to be well as possible to cope with rehabilitation . I know you must be so worried and I am sorry you and your family have had to endure the awful experience of BI.

Take care xx

[Lormck in reply to Sem2011]

Thanks so much I am goin to start having a break xxxxxxx your advice means the world x

[Sem2011 in reply to Lormck]

Glad it helped ! 🙂

[Josnuggler]

I echo everything that's been said. As the wife of a brain-injured victim I remember only too well the feelings you are describing. It's such a frustrating and emotionally gut-wrenching time.

Right now, his health is in the medical team's hands. Yours and your daughter's health are in your hands. Keep yourselves recharged and strong; lots of talking, crying, sleeping, eating well and lean on those around you for support. When the time comes for your husband to leave hospital his health will move into your hands - that's when you need to be fully charged. That is some time away so just take each day steady and do whatever is manageable to keep yourself ok during this incredibly difficult period. You will be ok .x.

My heart and thoughts are with you .x.

Take care .x.

[Lormck in reply to Josnuggler]

Xx thanks

[Pocketsize1]

I had this experience but with my father, it is a terrifying time for you i know but as he is relatively young and was very fit this should help a lot. I was a complete nag at the hospital, you will have many many questions and you have the right to have them answered. It is their duty of care to look after you all. I will keep everything crossed for you, it doesn't seem it i know but it is very very very early days x

[Kirk5w7]

Hi, let me add to this that I wasn't expected to survive but if I did I would be in permanent vegetative state. Twice they asked my husband to put DNR on my notes so that should I have heart or kidney failure they could let me slip away. Luckily it never came to that and my husband had refused any way.

I am so glad I was given the chance to recover, I have defied all predictions. I had to learn to walk etc etc again, learning to feed myself and dress is so hard but I was determined to be the best I could.

Don't give up on your husband, it will take time, but what you see now may not be how he will be in the future.

The brain is an amazing organ with abilities we are only touching on. It really is early days, please, please, please be strong for your family. I remember confusing times when I was starting to awake, tracheotomy in, chest and breathing problems, having my swallow reflex checked to see if I could learn to eat independentl, being fed by peg into my stomach.

It's all very scary now I look back but amazing how the body can respond.

Time is the secret.

Take care Janet xxx

[peaches2]

Best wishes to you, it's not easy but it's def worth the wait! Please try to take a break from the travelling back and forth and have some quality time with your daughter and also to yourself, you need to be healthy and well to keep going. You deserve a rest, it's a long haul and you will be able to cope better if you take care of yourself along with your husband and your daughter. Thinking of you and hoping you realise that you can only be patient for now and that you're not magic, none of us are... you need to rest too, try to stop worrying about neglecting your husband, it's not neglecting him to stay at home every now and then, it's what you need to do! Lots of love. xx

[angelite]

Hello Lormck,

I would like to give you a website link that explains recovery stages from a coma. After reading, you will realise that your hubby really is improving and has made positive steps already in the month since his accident. The fact that he is shifting and tracking with eyes is a very good sign. Brains are complicated things and simply won't be rushed when healing -expect a slow process but celebrate every small step forward. Do take time out for yourself and daughter - you need for life to continue as normally as possible between planned visits - he is in good hands. I'm so pleased that your husband appears to be moving along the right track. Please keep us updated with progress.

healthpages.org/brain-injur...

Sending all good wishes, Angela x

[Kati3]

I can't really say much more than what everyone else has said, i echo everything. Some great advice. I can hardly remember my stay at hospital and a year or two after so definitely try and take some rest, look after yourself and your daughter who will be looking at you for support with the emotions she will be having. Take time to talk with her. You are important so look after yourself xxxx sending strength and hugs, a worrying time but he is in the best place possible and on the journey to recovery.

[razyheath43]

Its terryfiying! youre world has stopped,i know,stya as strong as you can for hubby and daughter and YOURSELF! hugs and healing

[Lormck]

Thanks to you all for your support and reassuring words - today he's been stepped down to the high dependancy ward and I arrived today to find him sitting in a wherlchair, well rather strapped into one. It was quite a shock, he was slumped and the side of his head with no skull was deeply dented. He is now in a room on his own with one nurse to two patients, still unresponsive with the traciotomy. I finding walking away so much harder and the fact that he's had no visitors since this morning is breaking my heart, he just looked so vulnerable and helpless x

[TBI2015]

I actually cried reading this cause your fears echo'd what my exact thoughts were , I couldn't bare the prospect of my independent father being "cared" for and knew he would hate it.

All I can advise you is don't think that far ahead , it literally has to be one day at a time.

Have they done an EEG? Measures brain activity? Ultimately though if he can breath on his own then he will live - when was the last time you sat down in a room with his consultant(s) ?

Ask for this - it's your right and write down what you want to ask so you don't get side tracked.

Unfortunately without and advance decisions request they will push on if they see some improvement.

But I totally get how you feel - fear and desperation for the man you love.

Have you spoke with headway yet? X

[Lormck in reply to TBI2015]

I'll ask that about EEG today, I think I keep putting off ringing headway but I will x off in the hospital now and I'll ask to speak to the doctors xxx

[janb777]

Lormck, So sorry to hear your terrible tragedy. You will be going through every emotion imaginable.

Please do remember life sometimes does work in very strange ways. My son Ade, had a cardiac arrest whilst living in Boston, Mass. USA. Aged 34yrs, young, fit, healthy and beautiful. He died for 25 mins, but they bought him back. Because of the length of time, they put him in ice which helped keep him alive. They then told us he would be in a vegetative state. I refused to believe this and asked for another 24hr brain scan which they did. The flaring on the brain had changed. I won't go into all his treatment and rehab.. But will let you know he is still cleverer than me even though he hasn't got his voice back and is still learning to walk. It still breaks my heart everyday when I go and see him, but he doesn't see that side of me. I am such a proud Mum and love him always. He is still my rock, makes his own decisions and has full capacity. He is one great guy. It's early days for you, I am 6 yrs along this road, but hey! he's joined a wheelchair football team.

Myself and Ade wish you all the hugs and love in the world. Please get in touch if ever you need a friend.

Love Jan and Ade xxx

[Lormck in reply to janb777]

Awww Jan and ade thank you so much fir your message and what an amazing guy your son is 😄 Your post was so inspiring x I have a feeling I may need some friends who understand this new world I find myself in so thank you x

[janb777 in reply to Lormck]

Your very welcome. We all need friends who actually understand all the emotions that you will go through. Heartbreak, guilt, anger, hurt, sadness the list goes on. But when (and you will) smile at something or even laugh do not feel guilty but embrace that feeling. The feeling will be passed on to your loved ones. I hope the day comes soon for you, remember to look after yourself, you need to keep mind and body strong.

Talk any-time you want to. Love Jan and Ade

[Silmarillion]

You are such a loyal and kind person! Just remember that your husband has only just had his brain injury and has been stabilised in intensive care. The real work will begin when he goes to the ward. It can often take time to see the progress in a person and when you see them everyday it may seem like things are happening slowly. Your husband has gone from being ventilator dependant to breathing independently and is being moved to the ward and that is HUGE progress! Being moved out of ICU to the ward is big progress.

I hope your husband continues to progress and I hope you are getting support too!