Headway

5 weeks in to my husbands BI and feeling terrified

This is my first time and I am just looking for any support and positivity from anyone who has been where I am now.

My husband fell off his bike and sustained a sub arachnoid haemorrhage to his right temporal lobe and a sub Dural haemorrhage

He had a craniotomy after 6 days and is now in a general rehab ward with a few neuro beds.

I believe he still has Post traumatic Amnesia. He is progressing slowly and has periods when he is lucid, but he also has periods when he is very confused and agitated. He knows he is in hospital and is beginning to accept what happened, but he is terrified of being in hospital and cries every day begging me to take him home. He feels I have abandoned him (I visit for hours every day).

We are having a case conference tomorrow and they are saying he needs specialist neuro rehab, but there are no vacancies anywhere. They are now looking 160 miles away in Bristol. He will be so isolated there, his friends won't visit and I won't be able to visit every day, and that's the only thing that keeps him going.

They are not coping well with him where he is, and when he gets very agitated they call security and inject him with Lorazepam. He is terrified and so traumatised by this.

Has anyone else been in this situation where PTA has lasted so long and have they seen positive outcomes.

I would love to bring him home and let him have community rehab, but I am not sure I would cope when he gets very confused and I could not leave him for a second

Any comments would be helpful as I am at a loss to know what to do and how to help him

14 Replies
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Bertie, maybe Headway could come up with ideas for a compromise as they will have information on specialist units and their locations.

Try phoning the helpline on 0808 800 2244 (office hours - free calls). Here's hoping you'll find somewhere more accessible. Best wishes, Cat.

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To the best of my knowledge the amnesia and or confusion can take time, I appreciate that these 5 weeks have probably felt like a very long time.

I was in hospital for days rather than weeks, but equally thought my wife didn't visit much since I didn't temper her visits much, and was on a 5s loop for a while etc

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I had my accident in Germany, I was working over there. I spent nine weeks in Leipzig hospital where I was totally alone when friends and family were unable to fly out and visit. They managed in shifts but I possibly spent half of that time alone, including obviously, every day when visiting hours were over. I was also speaking a completely different language to the one the doctors and nurses who were treating me.

23 years later (and I hope the folks who use this site will back me up here) I am independent, I think I have my wits about me and my cognitive functioning is pretty good. I've not lost my sense of humour either :)

It was a long road back in the early days after my return to Blighty, but your husband can do this, he can fight through the obvious hurdles that you now so clearly see. And you will not only see the light at the end of the tunnel but it will shine brightly eventually. Yes, it's difficult right now to see anything but the darkness, but it will get better, I promise you. And don't ever forget how much YOU are valued in this plight in which you find yourself.

And if you EVER need to chat, vent, yell or just cry, come and find me, the site, or anyone who wants to listen. We're here for you

Andy

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yes love id talk to headway staff 08088002244 and keep on this site with so many people willing to help you as for injecting him with lorazapan their well they were off quickly their from valium

family very addictive and are short release .. . valium lasts longer . 1 mg of lorazapan= 10 mg

of vallium and very quickly your body is on fire for for more lorazapan . see what dose of lorazapan their injecting him .no wonder he gets irritable . but I really hope you get

the help you deserve . this is from the heart .and lorazapan is from my experience with it .

x eddie

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My partner those bleeds and a intracranial one too, from coming of his bike. He now is 10 weeks in and I found headway were amazing. I would ring and also ask if there is a headway near where you live. I have since found out that there is a group meeting near me, but the hospital he is in, which isn't near, had someone from headway come to the hospital, so ask them there if they have any info on headway. Also, this group are amazing with support too. X

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Apparently I suffered a PTA after I came out of my two week coma. I can't remember it.

Was your husband wearing a helmet?

Remain as positive as you can x

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Hi and welcome to the site.

Everyone's recovery is different and sad to say it is early days yet.

On a more positive note ask headway for help. With the right treatment and support things do get better.

It may seem daft but keep a diary of dayly progress ...or not. Then as the weeks go by and you feel there is little progress you can look back and sse just how much he has improved.

We are all here for support.

Pax x

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I can't answer much on this except to say that a friend was undef the neuro team at Southmead in Bristol a few weeks ago and they were amazing. They coped by using skype/ facetime on some of the days etc as they found visits very tiring. It is very stressful and distressing for you right now, the team there will understand that too.

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I had my SAH treated at Southmead in Dec 2015 and was then transferred to the Brain Injury Rehabilitation Unit at Frenchay. If your husband is taken there his care will be first rate. They are amazing.

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So sorry to read your story. I hope that you have called Headway and have a better insight as to whether there are any alternatives on offer to you or what help may be available.

I'll be keeping my fingers crossed that things move in the right direction soon for you both, although yes it is early days.

You have found a lovely forum where you can vent away or share stories...without judgement.

Best wishes to you both.

xx

x

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Of course, it's not the same as being there in the flesh but, if you can arrange to set up a Skype connection Bertie, as gabbycat has suggested, it could relieve much of the stress of separation for both of you.

My ex husband was denied the opportunity of a transfer to Walton Hospital in Liverpool for intensive rehab, and, sadly, myself and our son and daughter were unable to challenge the decision as we were no longer next of kin.

It's a hearbreaking time for you m'love, but with an occasional visit, and the Skype chats, you can keep up a fair degree of intimacy and you WILL both benefit from the treatment of a specialist hospital where staff are highly trained in dealing sympathetically with distressed patients.

And it would be overwhelming for you trying to care for him at home. I'm so sorry you have such an awful dilemma. Please remember that we're always here to offer whatever we can in terms of moral support or advice. And please keep us updated on this challenging situation.

All best wishes for better days ahead. With love, Cat x

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It seems there are 2 possible main sides to BI physical and in the mind. The last being which sounds hardest. I have recently started going to a brain injury group. The bloke who set it up went through confusion stage and had long periods where he was just blank. He kept repeating stuff, would stare at walls for ages had many times where he felt like giving up. I have not experienced any of this as I only met him a few week ago and 5 years on you wouldn't know he had BI. It does still effect him short term memory, concentration and fatigue. Honestly to see him he seems fine. I don't know where you are living but I could give you the brain recovery groups details and/or website for you to read this blokes progress he set this group up in hope of helping other people who have been through similar.

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i can he;p

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bertiefred when they have their case conference, maybe you could ask, when he moved to bristol, if theres any beds for you, that would give him some assurance.

aggression unfotunately, i cant put you at ease, because mood swings and aggression is one of the side effects of my bi, i take medication for it, works most of the time but that doesnt mean im not unpredictable.

good luck

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