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
Written by
bertiefred
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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
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
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 .
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
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.
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.
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.
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.
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
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.
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.
Hi, my daughter (22) suffered a severe traumatic brain injury last year after attempting to take her own life. She took an overdose and jumped of a bridge onto a bypass. I am an ICU nurse so I have nursed many neurosurgical patients over the last 17 years. Five weeks is very early days even though it will have felt like a lifetime for you. The bouts of confusion and agitation are normal and may take months to improve. You are very lucky being able to see your husband. Due to the pandemic, even though I work for the trust I did not see my daughter for five weeks. Whilst she was in my ICU they allowed me to visit, once moved that was it. I had many unreadable texts, and phone calls at all times of the nights begging me to take her home, stop the pain and asking where I was. It was so hard. My daughters was non weight bearing due to fractured limbs so needed someone by her bedside at all times to stop her trying to get out of bed. She was confused but slowly this all improved over the months. My daughter kept begging to go home, telling the Drs my mum is an ICU nurse and she can look after me. So she was discharged early with a hospital bed, commode, wheelchair etc, as she was still non weight bearing at that point. I’ll never forget within hours of coming home she became really agitated and confused. She became dysphasic, everything was “tissue”, whether it was pain, toilet or a drink. My husband struggled with this, so I sent him to a friends while I settled her down. Due to my ICU nursing I’ve dealt with this kind of confusion and agitation many times, but for anyone who has never experienced this it’s quite frightening. I found with my daughter if she became over stimulated, with pain, environment, noise or emotions this caused more confusion and agitation. This may be the case with your husband. I have to say I believe my daughters recovery was helped by being at home, for weeks being in hospital without seeing any loved ones was a form of social deprivation and it didn’t help her mental health. Once home she improved quickly but we really struggled to get the physios and OT services in place. At one point we felt so alone and forgotten. Caring for my daughter at home was really hard. My husband and I had to worked opposite shifts to ensure someone was around for her, as we could not leave her alone. Even now a year down the line we still make sure someone is around for her, but that is mainly due to her mentalhealth. If you do decide to care for him at home, please get some help, support and some respite. My daughter is doing great now, she will always have minor issues but over the last 6 months she has come on leaps and bounds. Remember 5 weeks is very early days in your husbands recovery. If you want any advice or have questions please message me. I’ve been in your shoes but I also have knowledge and experience nursing brain injury patients xxxx
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