hi
I am new to here, my husband had a traumatic brain injury last august an has been in hospital and most recently rehab.
I was told the Gp has asked for a mental health assessment and ordered a section 3 due to his agitation and aggression the rehab have told me they are not meeting his needs which I fully understand,
Has anyone else been through this?
I am heartbroken 💔 I feel I’m never going to get him back,
Thank you for reading
Chantelle xx
Hi, when I first had my brain injury the rehab I was going to go to initially couldn't take me for the same reason - My behaviour and outbursts of aggression, so a rehab centre that was willing to take me was found, but this was all within the first few months of being transferred from hospital and it sounds like your poor husband has had a longer time of it. As soon as my behaviour improved I was transferred to the original rehab centre which I returned home from.
It may be a case of looking for alternative centres that will take him. I hope you get to support you need
Thank you so much for replying I know it can’t be easy for you, he came to the rehab in March then had to have a shunt fitted in may due to the pressure on his brain, they have even put him on mood stabilisers, none of us can get him to engage in therapies which would help him a lot
I hope you are ok now thank you for reply 🙂
I can only speak for myself as, no two brain injuries are the same and I've been on mood stabilisers for the past 12 years, but I also never had any kind of surgery or a shunt , but I know people who have. You will get a lot of advice and support on this site. Sending wishes to you and husband. Don't give up hope. x
I cant comment on rehab because I refused to let them send me there! I just wanted to get back to work even though my neuro suggested three or four months of rest.
Being a survivor is brilliant as I regard it as having a second chance which few people get.
Six years on I am fine most of the time, but get distressed and frustrated by people who dont know or care.
We all react differently to these situations as do the general public with no medical condition, but the agitation and anger your husband feels may be due to his feeling overwhelmed and helpless in being able to resolve things or by being demeaned by others.
I can certainly correlate to that and must say, use this and the Headway helpline to bring up your concerns. You will not be the first or last person to do so and it is a “safe” place where the conditions are certainly understood.
Keep strong👍
Thank you for your reply, yes I feel he’s frustrated his cognition is really poor all his words are mixed up,
I wanted to bring him home but his professionals wouldn’t let me it went to a best interest meeting we’re they all decided what was best for him,
He is deemed as having no capacity at present but nearly 12 months on and now he’s being sectioned a section 2,
I just want my husband back, my son misses his daddy, I’m starting to realise I may never get him home thank you so much for your reply I hope you are ok? Xxx
Hi Chantelle,
Call Headway, they are your best best for resources. The number is under "pinned posts" on the right.
They have all sorts of things, and don't forget that both you and your child also need support.
Every injury is different because it depends on what part of the brain is impacted, and that is not so easy to tell - because some or all of the damage doesn't show on tests, because it is the result of swelling or broken neurons, etc - too small to show.
What I can say is freshly injured people in general tend to irritate easily and be angry. I can't speak for others, but for me at the time I had constant headaches and my brain felt kind of like my feet feel if I walk too far on a hot day in ill fitting shoes with no socks, plus with something sticking in the back of my skull and being on fire at the same time. Well, such feelings would make anyone at least touchy...
I'll also say generally speaking the amount of anger goes down as time goes by - again, depends on the part of the brain injured.
These past few months will have felt an eternity - and in the scope of brain injury, your husband is still considered freshly injured. Yup. Sorry about that. Most healing happens in the first three or four years - it continues after that, just slower.
Headway will have resources for families that can help you learn what to expect and perhaps give some counselling to yourself and your daughter so you have some sort of framework to deal with it all. It's pretty tough going it on your own when you have no idea about how any of this usually goes. Here is a good place too - we are a friendly and positive lot and we also don't sugar coat things.
It is a tough and rough road, it is a marathon and not a sprint. And, although docs can give you their best guess - they don't really know for sure, either... and it can be really hard to know exactly what will happen.
Please call Headway, they can refer you to people who can look at the details of the case and give more specific guidance.
There are a lot of gaps in the system and you really have to go after things sometimes, and it's worth doing. There are also often local brain injury support groups who can give you names of medical people and advice about dealing with them specifically - who to go to and who to avoid.
He is still him in there and he also has changed a lot and will continue to change. People with brain injury are not very aware and it can be a long process for them to heal and learn to deal with the changes.
I am 15 ish years out and my journey has left me feeling more myself than I ever was, in many ways, and I am also very different than who I used to be. Not just the injury, but experiences going through the process afterward, have changed me. I still love who I love, though, that hasn't changed. I'll also say I have struggled a lot with people thinking I have turned into a jerk - which I have not - the problem is a bit complicated because I can't multi task so I don't take in casual comments thrown at me and I have to work on one thing at a time and can't interrupt it to do this or that - which some may see as rude, until they understand that I can only do 1 thing at a time and if they ask me something else while I am doing that I likely won't answer and if it is to ask me to do something else I won't remember what the something else is. I 'm not trying to be rude, I just operate differently now. Before I could interleave 20 different things and not skip a beat.
If he is still in hospital it is because his level of need is more than you can manage. Believe me when I tell you if you have a disabled person at home the system relies on you wwwaaayyyy toooo mmuuccchhh and you will burn out if you try to take on having him at home too fast. You also need to concentrate on your daughter and have her have as normal a life as possible even though she misses Daddy dreadfully.
Try to find a balance for yourself.
You may want to have your husband seen by a neuropsychiatrist if you can, or speak to them as well if he has been. Please don't freak out about the psyciatrist bit. In the history of medicine , which is very focused on the physical stuff alone, every time they ran into something they didn't understand they through it in a big basket called 'psychiatry'. Even the study of the impact of vitamins ended up in psychiatry, for example. These days a neuropsychiatrist does a medical doctor training, a psychiatry training, and a special training on the brain. They therefore have a good guess about whether symptoms are down to a brain injury and what may be down to mental health, and they are well acquaintanted with the medications that can help in either case.
If he does need a different care situation, just make sure the people have a background with the brain injured - if they want to put him somewhere where only mental health is understood and treated, that will likely not be the correct spot for him. There is a difference in approach. However, having said that - Headway is your best bet - I live in Canada and things may be done differently here than they are there.
Remember to stop and breathe, take in the blue sky and smell the flowers.
Leaf x
Hi Chantelle
I just wanted to send you a hug! I had a “moderate” TBI almost fiveyears ago and in the early days the GP found it hard to know what pathway I should follow.
I was unable to talk and fell a lot etc. They initially thought a stroke pathway but I saw a neurologist privately.
Long story short I saw the neuro and got a diagnosis ( post concussion syndrome then FND) and had specialist rehab.
It is unbelievably challenging for your husband for you and the family. I do not know what support you have or dialogue with the medics but you will get there! As the patient I found it devastating and frustrating not knowing who I was or why I couldn’t function. Once I was able to research and advocate for myself, get some control back, life seemed better!
I’m still married and we have a simpler life but a good one. Hope is a very strong feeling and motivator.
Good luck ☀️
Thank you for your reply, the front of his brain is damaged and the rest was shook in the accident he wasn’t expected to make it, and done so well to get this far.
It just seems to be 1 thing after another,
Thank you for your reply, I hope you are well? You are doing extremely well xxx
Hi again, I am so sorry you are all going through this and wish you the best. He is lucky to have you researching and supporting him. X
Good morning T-88
Not sure I am qualified to respond as 25 years ago I just bashed me brains and the clever people induced coma to protect me from myself - no shunt. My injury was Glasgow Scale 8 so severe but not the worst.
Didn’t like hospital too much, who does, and got up to all sorts of tricks to escape they told me! Anyway they let me go after 3 months only when they had a rehab place sorted which turned out to be 3 days a week on the Wirral for 3 months. Don’t know what they did but they told me just before Christmas 1998 they'd done a really good job and I was free - told them they were talking crap but what the hell, I was FREE 🙂
So off I went home to my wife and my pub for Christmas .... 2 days before Christmas (I think, being exact remains a bit difficult) found my dear wife in bed (her son's interestingly) with another bloke, a customer actually. There I was, not on the same planet and this guy wanted to fight me! All very bizarre but it got better, wife called in the idiot doctor who'd been in charge of me in the General hospital. This guy came to talk to me, he sat there and blamed me for the situation I found myself in, accused me of drinking like a fish even though I spent most of my days asleep at that point and buggered off, never saw him again. I didn't have a clue what to do but was sensible enough to understand there was no way back and it was best to get the hell out.
Mum and Dad were at that point in Portugal for the winter, Dad called me and said 'you can go home but you understand it's not a doss-house and you must go to work with your brothers'. We had a family business and that was the sensible thing to do so off I went. Dad sorted out my past and things went well .... and there I'll stop, it's a very long and boring story that hasn't got any better some details are in other posts I've made over recent times.
I'm sat here wondering why I've told you all that .... oh yes, the help that's available is bloody limited of the one size fits all variety and to be honest is not really help. I find the posts here more helpful as everybody here has experience and no 2 head-bangers are the same.
In my experience you must fight, fight for every last thing - it is hard work, it is very boring, sometimes it is very traumatic - but you must not give in, the system will f*ck you over. One little thing I would suggest and recommend is you keep a record of everything, I keep a journal - sometimes I look back out of interest, but mainly I have found it useful in my continued aim to get better.
Best wishes
Michael
My son is 31 months in, sectioned, medicated, in brain rehab the lot, I freaked at the section too, looking back it was the right thing to do. I couldn't survive with tom home, I have another child at home too, the medication has worked for Tom, or/and his brain is healing, but it's only been the last 6 months that the violence has calmed down, he is going to move soon to a nearer rehab to me, will he ever come home I don't know, I.m getting older he's in a wheelchair with only one arm and leg in full use, I won't be able to lift him, he still needs one to one care, But I do know people who have brought their family home it's been hard work physically and mentally, a whole change of life, and with a lot of support it can be done, get all your stuff in place and get him out if you want, use Headway, the brain charity, counselling, social services and then fight for him it can be done good luck
Welcome T.
I'm so sorry for your plight.
As others suggest, contact the Headway helpline for expert advice and support. They have the knowledge and resources to help us through the stress and uncertainty of brain injury complications. All best wishes, Cat x
Hi
My partner had a DOLs order when in hospital which was reviewed by social services. He behaved appallingly in hospital but it was eventually found to be delirium. As others have said every brain injury is different so get advice from someone likeHeadway. I had one OT who nearly led us down the wrong path with her determination that it wasn’t delirium.
J
thank you all for your comments I really appreciate it, he does have a dols on him at the minute they don’t feel he’s safe to leave, his cognitions are terrible, but you have reassured me that a section isn’t a bad thing so thank you all of you xxx
Hi
I so empathise with you as my partner had a bleed on the brain in January 2022 and because we are not married and I am not next of kin I have been treated terribly and this is all because of them saying he does not have mental capacity even though I have been there for him when they’d let me. They then transferred him an hour away from where we live to a home that houses residents with learning difficulties so he only converses with the staff and I am restricted when I can see him. He has always got agitated and and can get violent towards the staff when they stop him from being with me and no one actually thinks maybe he wants to be with me, they just always say he doesn’t know what he wants, who he wants or where he wants to be and because the home is not trained to deal with people with a brain injury they just want him to stay calm so they think the best thing is to stop him speaking g to me at times and stop me seeing him. At the first big meeting we had in June the dols and the social services and the manager at the home all decided together plus his father who because him and my partners mum have cancer that it’s best for him to stay there but they are looking at it from a different perspective that he is looked after if anything happens to them, they just all would love for me to stop seeing him. I am fighting an institution and feel like I’ll never get him back. Even headway said they could not help with this kind of situation as when there’s no mental capacity it’s in the hands of those who are thinking of my partners “best interests “ 🙄 It’s so sad to see the person you love being kept away from you and having him look at you and kicking off more or less pleading with you to not understand why your leaving him. I am appalled at how partners are treated they are more or less saying you should leave someone when they have had a brain injury, you don’t matter anymore. I am so frustrated, heartbroken and miss him so much and there’s not a thing I can do. If he had had broken a bone I would still have him with me but because he’s classed as not having capacity I’ve lost him and as you know yourself I have had to grieve for the man I’ve lost but I never thought i would have to live without him.
I am so sorry if my story as not made you feel any better but you are the first person I have come across who’s story is similar to mine.
J xx
Oh my god I am so sorry you having to go through this, that is absolutely disgusting.
We are married ( only 3 years ago we have been together 20 years) but I don’t have power of attorney,
Have you contacted a solicitor?
It is a disgrace your being treated like that, weather he has capacity or not you know him a lot more than they do and know what he would want, it is something I say to these professionals all the time.
Please don’t give up, that’s 1 thing that is keeping me going that and our son, we have to have hope
Thank you for sharing I know it is not easy xxx
He may need a Psychologist or Councelor to get over this. Maybe they could recommend certain meds that can help.
Advice for a newbie please
Steve's discharge from Neuro rehab after TBI
5 weeks in to my husbands BI and feeling terrified
How to help with memory loss
Advice on how to help my father welcome
