I just found this through headway. Eye 9 years in, husband has had a difficult time of this and I have had it worse in some ways
I'm seething at the minute that no one guided us to help after. They just dropped us off from the hospital as if the scar is healed and will finish healing at home and all will go back to normal. And it never did, and there was no understanding of this, no support, no appreciation of what I've had to go through. I wasn't even clued in myself.
I'm sorry but the hospitals are stupid beyond. For 7 of these years I thought my husband's challenges were all my fault, I thought if I would only be nicer and more patient then he'd be kinder, but honestly that's not normal and not possible. I've been mothering him all the years coz that is what was expected of me. There was no understanding of the wife that I am and what I deserve.
Where was anyone who could sit with us for a bit and gently tell us what may be different, and tell us who to reach out to as necessary. I was alone for years!
I'm only less alone now because when the next crisis came up now 6 months ago I was like I can't handle this anymore and finally shared how unkind and abusive and demanding he's been. And finally I dropped that carers guilt and began looking after myself a little. I lost my appetite for 9 years because I felt so guilty and neglected. I've been struggling hugely for years because of the difficulties with illness.
The one organisation I did reach out to was for cancer so the message I got from them was that benign is fine and we would be fine. Being that I'm independent I was like ok in that case we'll get through it ourselves and we'll be out of it in 6 months to a year.
K rant over coz I feel bad for you dear readers but I could write a book on the abuse I faced. I was actually advised to contact women's aid org for support because it's that difficult. So sad. The tumor and surgery robbed us of so much basic that we deserve
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StrugglingSpouse
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I'm sorry to hear about everything you've gone through for the past 9 years. The healthcare system is very broken and it is hard for both the victims of a brain injury and the carers that support them.
I know this advice comes 9 years too late, but take the time to sooth yourself with 'self care' as you have to help yourself before you can help others. It takes both parties for there to be a successful relationship, and he has to be willing to make an effort just as much as you are.
I know Headway provides advice for survivors and carers. Perhaps they know of other specialists you can talk to navigate and resolve the problems you are having with your husband?
We can't get back the years we've lost, but perhaps you can use that frustration to help others avoid similar problems you've experienced?
I talk to God through Jesus Christ quite a bit and He helps me work through my problems. Life certainly hasn't been easy, but He's been there for me in this world that can be quite cold and cruel.
I hope this helps you for what you are going through. You are not alone in this!
Thank you for your detailed response and very kind words. I read your response a few times. I really appreciate. Very helpful.
I have already been an advocate for others and I hope to make changes in the health care system too. Just a bit of education goes a long way because there are many many charities out there that offer support but it's knowing
This won't help, though I will say this is typical in Canada as well. After my injury I used a community service where volunteers gave rides to people going to medical appointments - thank goodness ! I should have kept a list though, because I met a lot of people who had brain injuries and hadn't heard the word - they had had a stroke, or some sort of aneurism or embolism, some family member was acting strangely after a car wreck, etc etc. One guy had been a police officer who was send flying into a bus shelter by a car passing to close when he had someone pulled over. All stitched up etc and sent on their way.
The system is broken. Of course you are mad. Anyone would be.
And, the silver lining is now you know and you can take some action for yourself.
Do give Headway a call and see what they have for you.
The divorce rate is really high when someone gets a brain injury, and look at all you have weathered. What a strong bad a** you are. You deserve acknowledgment for all you have done. (Yes, I know that's not why you did it and you would just like some help!)
You may have to do a lot of phoning around to find things and also get your advocate helmet on.
It is true the system is broken and there still is the odd professional here and there who has help to offer - not just as many as one would hope, and they mat be in unexpected places.
hi, suffered a tbi in 2000, mum got in touch with social services. Try y local council for an assessment. Had to wait a year for appeal after dt asked me two questions & stopped my benefits!! Lived off bank of M& D for a year before appeal gave me long term benefits. They got no support either, sis ran care home for disabled so she helped her greatly. Hope y find support here!! If only a place to rant/vent y frustrations?!! Good luck and hope y find support somewhere
hi .. I’m not surprised at your name … it is hell and I’m the one with the brain damage ..
I have little to no control of my temper ( this new me ) and have been physically and mentally abused when I was younger .
It breaks my heart to have sat on both sides of the fence and am working my ass off to improve this me .
Please get counselling alone and with your husband it will help more than you realise .. I very much hope he will join you as with education about head injuries and both of you sharing possible difficulties you don’t want to talk about you can move forward ..
me and my husband have been for counselling and it has helped us so much .. I have to say it takes both of you to work at it but I would say only do this if you are safe to do so .. sounds a bit blunt but I have been on the other side ( not head injuries) and YOU are the most important .
My husband isn’t the most patient of people but with me I am blown away by how much s… he has put up with .
Not sure if you are new to this group .. but for me it has been the best place to not feel alone .. Sue
Wow Sue! Thank you for your candid honest message and so much valuable information. I only read it twice but there's so much more to take in I shall read it again and again. Thank you thank you thank you!You're a true honest hero! I'm blown away
Thank you!
What do you mean by if safe to do so, do you mean if its emotionally safe for me to do so? Please elaborate
The blunt bit is a whatever is happening you have to put yourself first .. even if you are the only one who goes to councilling you will alter / educate yourself on how you perceive / deal with your difficulties .. hopefully your husband will do the same .. the only person you can change is you and how you feel .. that is why you have to be first and that is very much ok .. It is fascinating how and what we can deal with .. even with my very wonky brain I’m still working to achieve a better life balance and that is slow as I forget so much so I just keep reading or listening to the same podcasts or talks on the Headspace app as that is one of my problem areas ( memory that is ) very much recommend Headspace app meditation .. hope that makes sense to you 😊Sue
Thank you for the eye opening clarity. I have been putting myself first because I instinctively realised it was that or drown. However I wasn't getting responsive positive feedback or affirmation or confirmation that that's exactly what I should be doing. So it's been hard to feel good about it. I'm much better at the carers guilt than I was and I hardly have any guilt but it does still linger deep down and it can rear its head. Mostly because my husband doesn't understand and can't yet find it in him to be unconditionally giving and kind to me and happy for me. Instead of the showering of praise and reassurance I need from him he withholds positive affirmations. His parents have been stupid and in denial too and also very judging and non accepting our understanding of the situation.
Out the house I am much more healthy and whole because he's not knocking me and my friends are very considerate and keep cheering me on with my self care.
At home it's harder
Hearing your affirmation feedback and reassurance is so magical for me therefore
His parents denial is quite often occurring . This last 12 months has been very tough as I to was in denial .. I’ve always felt I would get thought anything and even this I felt in would succeed. How wrong was I . And that not defeating it is a part of excepting the new me . I’m unsure if your in the uk and what your area is like for rehab as where is live it is non existent and this has been a massive negative impact me . I’m guessing this has escalated my anger problems . You will find a way though this with help 😊
Thank you for so kindly giving me so much of your time! You hadn't given me so much of yourself. I really appreciate. I am in the UK.
We do have support now, a community team and there are other charities I am aware of now that I wasn't. I think that's the anger, finally finding what I needed years ago and feeling like where was all this when I needed it then?
I had no clue we were going to go through anything, that we even needed support, let alone the names of the supportive charities.
I feel much better already since I've written here
I’m happy to give any support I can as like you I had no idea apart from on my hospital discharge notes it said about Headways ..
I want it to change , not to be left to find out for yourself if or what is available and being greated with just about every GP, Drs , Physio etc words of “ we don’t know anything about TBI” or words to that effect .. I was very lucky that I had knowledge of Brain injuries, mental health ,1st aid and rugby rehab injuries and recovery plus a determination to fight for what I knew I needed .. where are the people who don’t have this background or have lost the old memories from their brain damage .. luckily me old jobs where writing notes and keeping diary’s as this has helped me beyond belief with short term memory difficulties .. I do smile when I read back over these conversations and think oh yes I agree with so much that is written and am surprised that some of it I have written 😊 so happy I still agree with me and can laugh at myself 😁 Sue x
Hi Teazymaid, I'm in the U.S. and I can tell you it's the same thing here. All the Drs here say just go home and rest as there are no treatments. I suffered a TBI and brain bleed 4 yrs. ago was going through severe anxiety, depression, loss of balance was having a hard time dealing with it , wife didn't understand because I look normal. I started researching on the net and found 1 Dr who treats brain injury with CBD and fish oil all I can say is it worked for me . His name is Dr Michael Lewis,he has a book called When Brains Collide . You can go to his website and get the protocol he uses for free . Hope this helps.
i am in the u.s. also , mood swings,depression ,anxiety for no reason , just blam and you feel like you are coming unglued .My balance troubles are ongoing. I have had people dismiss my injury ( fractured skull brain bleed, concussion) because i was injured on Friday afternoon at 5 then home on Sunday at 2:00 pm. ( the blood seepage around my eyes convinced them otherwise ) But like you said , on the outside all is good, like nothing ever happened , but if they could only see inside ,,,,,
Wow !! That is very visible .. I’m sorry you also have had no aftercare .. the think I don’t understand is the lack of passing on information as what actually happens when you get brain damage .. even if there is nothing they can do at least explain why they can’t and don’t put you in endless waiting lists ( uk ) it is invisible but we are having to deal with it and for me I very much needed to even hear the words “there is nothing we can do “
after going home, i had to see my family doctor,as a followup about 3 days after . all he had to say mostly was , did you show the staff ? you have what they call raccoon eyes , a classic sign of skull fracture . ( Peri-orbital ecchymosis) just means bruises around the eyes .. my fracture was on the back left side of my skull . hah , of course my biggest worry was making sure his staff saw my eyes . he says your fine go home ... Ps, its been 6 months and i still have dark circles where the blood was under my eyes . i asked him if the blood vessels had been damaged. he said " maybe " . probably not ..
I fractured my skull up though where the spinal cord goes .. the words I can’t find . Also c5 and c6 but no black eyes just bleeds on brain .. only visible bruises where in my shoulder where I also broke my clavicle ..
Wow, that sounds like a thorough job. Someone asked how bad did my head hurt , I told them imagine an ice-headache that lasted 16 days/nights straight. You got broken up pretty badly ( that had to have been really painful ... the hospital i went to , never checked my neck .... the trauma surgeon at the neuro-trauma center they consulted with - said you guys need to do a cat scan on this guys neck ! , so they did.. they posted the results in my file. the patient needs to be counseled because upon review they found I had ... the early stages of arthritis in my neck . so , as i lay there oozing blood from around my eyes . they said you have early stages of old man neck. (lol) , they also noted that i am about 20 lbs over weight ,so i need to be counseled about my obesity . (lol) i wonder for a while about what they were most concerned about ! ..... anyway i hope that you are feeling better after that kind of structural damage ....
They didn’t find my ruptured hamstring until two years later as I kept saying that is still hurts and cramps easy… eventually something listen to me and stopped say that it could be spasticity .. and yes I had a partial ruptured 10 cm long and they never looked at that bit 😂😂😂 I actually find it funny as it is so ridiculous you would think it was out of a comedy 😂
they gave me only over the counter strength " paracetamol" or Tylenol to my fellow Americans. little doses of another drug another over the counter drug called Antivert . Over the counter means" non-prescription necessary ". needless to say , didnt do much . they told me drugs like morphine dilate blood vessels in your brain and will make the pain worse . ( i haven't researched that theory much )
I was on morphine both in hospital and at home for sometime … never heard about it making pain worse and from what I remember it did ease my pain and also I knew when I was in need of it again because of the pain .. I did also have other pain relief as well
Glad that worked well , In america cough syrup with codeine takes so much paper work , my g.p. wont prescribe it because of the needed back ground checks on me , drug counseling , he would need to provide and monitoring of its use. ( he stated once he could sell a pistol to me much easier , he doesnt do that of course , but just as an example ) Let alone Morphine . tylenol only for me . i guess bleeding around the eyes and a bloody mess on the back of my head that oozed blood for 3 days , doesnt qualify me for pain drugs
Hi Bluesky36 wow your injury was worse than mine no skull fracture just had a big bruise on the front right side of my head. I had the mood swings also and could barely walk ,spent 3 days in hospital. You may want to check out the book I mentioned, I found that the CBD calmed my brain,the fish oil is to heal your brain ,our brains are 40 % omega 3 . I'm pretty much back to normal except my short term memory ,balance comes and goes. My wife and friends say I'm not the same person but I don't feel any difference. Hope you get better soon.
Hey Gordo, I have had pretty good results from the fatty fishes ,walnuts and blue berries . Bad results from foods that stoke inflammation . I have wondered about CBD... HAH, i didn't mention it , but sometimes when i am, really tired , my short term memory resembles a bucket with a hole in the bottom . The first time the bad mood swing hit , i refer to it now as a werewolf mood swing . too bad i own a company , an employee did somethings that aggravate me on a good day. That was not the day to do that , i didnt do anything out of line , i said as little as possible and returned to my office. My eyes glowing red .... with practice i can see them coming , the memory troubles i can see that coming too and make "adjustments" . Since this whole thing started in August 2024 , after spending 3 days listed as Critical with Life Threatening injuries... I find myself saying more of certain things , at certain times ... not inappropriate , but things i wouldnt have said to some people before, usually just really nice things ( not crazy though) . I used to engage in political conversations , not anymore . Most petty interpersonal differences i just dont have any need to bother myself with ..... but i will say that a group of people i used to tolerant their present just to be correct , i just avoid them all together .
Here is a question, How many of you have had friends /or family treat you different once they learn you have a TBI ???? i have lost a friend and another just looks at me funny when we talk like she thinks i am going to start flapping my arms or clucking ) no and i never have done that sort of thing.
Hi Bluesky ,glad to hear you're doing good with fatty fish and diet . Kick up the omega 3 by getting a liquid fish oil ,the one I use is from Now foods , yeah I've had people treat me different but they say I'm different if that makes any sense. My wife tells me I'm not the same and it's a problem sometimes. I know about those mood swings I would go from easy going to get out of my face ! In a heartbeat. Thankfully those have passed along with most of the anxiety and depression.
I though my own research which is bloody difficult with memory loss .. I have to read and read and read again to attempt to understand .. this should have come from rehab not necessarily for improvement but for education in what life can be like with brain damage .. again they will say they don’t know that either but when someone asks them understand ling care and support would very much help reduce the anxiety and depression .. I though USA would have been a lot better then here .. such a shame we damaged the worst bit of our body’s and look normal 🥴sue
Totally! The rehab should give this to us or at least some direction
I have already let some people know. I shall speak to my surgeon and neuro oncology team too and anyone really that's involved in brain injury to let them know that they have to give some education, some understanding and they can't just drop people home into totally new lives they and their families know nothing about.
I do a lot of advocacy and empowerment, I shall do it here too
No one should have to be a struggling on their own spouse!
I was a complex mental health support worker before my accident and I worked with a guy who has brain damage .. without this knowledge I don’t know where I would be .. I’ve chased Drs , mental health nurses , pharmacy all on a regular basis and right though Covid where I never missed seeing my clients albeit though windows and doors .. luckily that bit of me I still remember and knew that I was actually doing the same things as the guy with brain damage .. I got my own cognitive books and could do the simple things at first then I kept working at it daily until I could do it better .. I never saw an OT for the first 9 months as it was in the later end of lockdown .. I never saw family while in hospital .. like you with doing advocacy I know what is wrong but I can’t express what I am trying to say and write notes continually . My diary is my brain ….
Wow! That's incredible! And you being such a super source of support from your end now, from all sides actually - abused, survivor and complex mental health support worker. You're just incredible!
Thank you so so much for all you have shared! I have no words how helpful, how inspiring, how you so get it! Your advice and descriptions and understanding and experiences and your self awareness are all so incredible!!
Thank you and I don’t know what else to say apart from I don’t think in incredibly at all .. or many many years I have felt there is no point in having to deal with horrible things if you can’t turn it into a positive .. that’s it really 😊sue
expressing things can be a problem , i have a mild case of noun aphasia since the injury , usually when very tired , when conversing sometimes i'll speak a wrong word that sounds like what i am looking for. once doll came out as dowel . blue came out as balloon . i guess it will either go away or just a part of the new me .
I'm not managing with my non husband husband. I've just left him. Going to have a break. I think he'll need to move out for a few weeks so I can look after myself and rebuild my life a little. I have just completed putting lots of things in place for him rehab-wise and now he has to go along the rehab route if he wants to live with me. Otherwise I'm out. I will ask all the support people, therapists etc to make sure they do their best to push him to become the best he can be. I can't accept their laid back attitude of just letting him be and then I'm the one that has to live with him. I can't accept, that because poor thing he's had a brain injury, then we just have to feel bad for him and life has to revolve around him and no one else can live normally. He's been psychologically and emotionally abusive for so many years now and I feel like I'm losing my sanity now. That's not OK. I have contacted abused women's support and they have said they will guide me. They have said this is am abuse situation. He has to put in the most effort he can into being the husband and father we need. I accept all his limitations but not that he's all limited. He's capable in his way, he's not a disabled brain dead vegetable, he's not in a coma, there's a lot he can offer and he has to bring to the table whatever he can.
He cannot be part of a marriage of he's not marriageable.
I feel like he's missing so much education, and couple therapy can help, so maybe. For now I am out.
Pear send some love and encouragement and feedback Xxx
I am so sorry to hear that you are not able to live with your husband .. he is very lucky you are trying to find help for him and even though you can’t live with him your still trying .. I do t blame you at all . I wouldn’t stay with me and I am trying to improve where ever I can .. let’s hope your husband gets the help he needs and that this system of NHS will one day improve even if only starting to understand how beyond difficult head injuries are .. Sue
Thank you thank you for your empowerment and honesty. Saying it as it is from both your perspectives has been extremely powerful and valuable.I wish you well and feel better, stronger, and all the healing in the world for you and all of us.
Thank you to everyone who's so kind and supportive on this forum. It means the world to me. You have been here for me in a really difficult difficult time. You are all heroic!!
Hi there,I'm so sorry you're going through this. But I hope you'll find solace in knowing you're not alone. We're 18 months out from the tbi and we are still riding the roller coaster. My husband's emotions are all over the place, I never know who I'll wake up to. Like you i feel guilty for trying to keep my head above water by spending lots of time in a different room just so I don't have to deal with the stranger in my home. It's really tough because he's still the same but with all his bad points highly magnified. Where he'd have a grump on before, he is now aggressive, verbally abusive, and can be like this for days or an hours or change hour to hour. It's so difficult to deal with and there is hardly any support for the family. If we didn't have insurance involved we would have been left to our own devices since laat Feb! Because he can feed himself, walk, talk etc the nhs are not interested. It's so hard and I really feel for you. It's hard to.know you're now a carer at such a young age and you don't know what to do for best, save yourself or help them. Try taking as much time for yourself as possible, getting a break is crucial. Sending love
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) But like you said , on the outside all is good, like nothing ever happened , but if they could only see inside ,,,,,
Being part of this community
I found this on another website ,it is just beautiful, made me cry. I didn't write this
An emotional rollercoaster and I want to get off! 
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Fed up withPTSD
