Headway
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Will it ever get better???

I need abit of advice people! I haven't posted on here for a whole as things have been hectic

My husband suffered his tbi in October of last year. He made a really good recovery and was home within 9 weeks.

Unfortunately home life isn't great if im honest! Its got better but at the minute im at breaking point. He has really changed! He shows no affection anymore! Hes unable to read when im upset and if im crying he doesn't think to come and give me a cuddle. I have tried to talk to him but this gets me no where! Today i have asked he moves out because i really have had enough!

I no a lot of relationships break down when a partner as suffered a tbi but i thought i would be able to fix him if that makes sense! He was such a loving man and its breaking my heart to see him so differently.

Please can anyone give me any advice of there experiences of my situation.

Would making him leave the family home realise what he is losing? Will his affections every come back? I lnow people will say talk to headway and i do but i really would like to here of other people experience in this matter.

Thank you

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Hi Vikki, if you mean will he return to the person he was, then im sorry to say very unlikely.

However it is still early believe me. In the early days, i didnt want to be touched, i couldnt relate to anyone, i felt like a stranger in my own house. I knew who i was and who all the family were i knew it was my house but it no longer felt like my life.

Im 6 yrs on now and around the 2-3 year point it all started clicking back into place. Id have been horrified if my husband said he was leaving or asked me to leave. I was learning how to live with the new me.

Im sure if your husband was honest he probably hates the new him. But men are notorious for admitting they have problems much less talking it through.

He will feel that since he recovered so quickly then all these issues we, BI survivors, have would not apply to him, he’s invincible in his eyes. So, what to do, id say he needs counselling but he probably wouldnt go, i didnt think i needed it but i did and it made for some uncomfortable discussions with my husband afterwards. You see ive even said to my husband “it was a good job it happened to me because you wouldnt have been able to deal with it”.

I hope you can iron this out, being on your own is no fun, then again neither is living with a stranger.

Much love

Janet x

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Hiya Janet

Thank you so much Janet! You know I’m pretty lucky considering he is very much his normal self it’s just this barrier of reading when I’m up and down, being loving and showing affection! It’s horrible he’s not able to show this! I’m not giving up on him just yet! Maybe asking him to leave was not the right thing to do! Tonight I tried to talk with him and he said I show no love either! When I go over and give him a kiss he kisses and cuddles me back but this is not something he does on his own accord! I’m hoping this will return. We communicate better in text! Xx

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as janet said idoubt it.

have you ever stopped and asked yourself why your husband doesnt show you affection? maybe that part of his brain was damaged and he doesnt know how.

you say hes unable to read, thats because the length of time we can concentrate on something has gone, youll probably find hes got short term memory loss as well.

we get fatigued easily, dont like noise or strangers, can be rude and act and say inappropriate things inside and outside of the house.

my wife had a melt down, the same as you, went the gp, and i was referred to a psychiatrist who prescribed me something ( not anti depressants because i wasnt depressed ) to stop the mood swings.

maybe you could also look up your local monthly headway, talk to others further along and have a chat with the darlings who keep us in check before considering considering a poor man with a brain injury, who wouldnt last 5 minutes, on the streets!!!

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Thanks for your reply! Yes of course I have considered all of the above and I understand it must be hard for him, but on the other hand I also have two small boys to look after, one of which is disabled. I would never see him on the streets, I have loved this man for over 20 years I just want some part of him back!

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you didnt mention the boys or the the fact that one was disabled vikki, of course that puts a different light on the matter.

what really annoys me is, we get sent home and its left to the wife to deal with, neither knowing what the hells going to happen, things could be sweet for a while and then all of a sudden all hell breaks lose and the wife has nowhere to turn, thats what happened to us anyway. i ended seeing a psychiatrist ( i still do 6 years on, he referred to a neuro psychiatrist who diagnosed me with adult adhd ) and a neurologist who diagnosed my epilepsy.

i take meds for my behaviour which works, although i think as ive said i still have my moments.

while you try you will never understand what its like to have a brain injury, only people who have a brain injury understand so that is the worst thing you can say.

i think its important you get your husband along to a headway meeting so he can mix with other people like himself as it will help him on his journey and it will help you too .

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Hi, I totally get where you are coming from. My husband had burr hole surgery in January for a chronic bilateral sub arachnoid. They say the initial bleed was 10years ago. Over the last couple of years his behaviour had changed. Due we think to the silent bleeds he's been having.

We have only been together 4 years.

Since his surgery his behaviour has got worse. This has impacted on my mental health which 3 weeks ago resulted in me having a panic attack. He left and has not come back. He's even rented a house!!

As you can imagine it's been a bad 3 weeks. Although over the last couple of days I think he's beginning to regret his decision. Too late now he's got a house!! I've started seeing a psychotherapist which is really helping. And we are in contact and going "on dates" so all is not lost.

My husband is waiting for a full cognitive assessment, which can't come fast enough. He has no insight at all into how he's changed. I'm hoping that this will help him gain some understanding.

His HATS nurse has said that it's better if we aren't living together at the moment. I've just got to stand back and watch him crash, like a run away train. Then pick the pieces up afterwards.

This is the hardest thing we will ever have to do. Is your husband receiving any help or support? And are you having any counselling ? If not then I'd give it a try. Normal counselling is no good in our situations you need someone with experience in head injury.

As everyone has said it's early days and with time hopefully he will be more like the man you married. But he'll never be exactly the same as before.

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Thanks for your kind words, of course separate is the last thing I want but yesterday was such a awful day. Today we woke up early and had a little chat! I told him I want him to try harder to get back to his normal self unfortunately his response was well I am! The. He replied well I have a lot on my mind, and in fairness he has! We are currently filing for bankruptcy on his business! Thinking of moving home and weather we can afford a holiday this year high we all desperately need! I looked back today when he was in hospital and was so loving and so like his old self! I’m taking this as a positive as it’s been there! If that makes sense xx

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It does my husband thinks he's the same as he was before and that it's me with the problem .

He too was his normal kind, caring self for the first couple of weeks after his surgery. I really hope he returns x

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I have no advice...my dad is in hospital at the moment and has been for nearly 11 weeks. I’m terrified of what his personality may be like if he does ever come round...I just wanted to send you some positive thoughts and hugs x

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Sorry to hear about your dad Lauren! I know how difficult it is in the early stages! Hospitals make this journey daunting. I hope his ok xxx

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Thank you it’s almost 12 weeks in. He needs a cranioplasty hopefully over the weekend then see how he goes before getting his place at Homerton for rehab 🤞🏻 good luck with everything I hope things improve xx

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Very brief reply for now as it's late for me.... But just wanted to say that Oct 17 to now is such a short time in terms of brain illness /injury. Do not give up hope yet. It took me at least a year to find ANY sense of pleasant emotions after my cvst.

I'll try to write more tomorrow.

If not pls discuss with headway for more help

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It might be morally correct to stand by your partner in such trying circumstances but I can't help agreeing with Marie21_ . Putting some distance between the two of you to enable you both (but especially your partner) to take a step back and calmly/objectively assess your needs and the impact of the separation, might well bring home the value of your relationship.....(for better or worse).

When we live together but can't get close it's worse than being alone so, for me, that would need dealing with. I'm the brain injured one and I know I can be distant and impatient but I also appreciate that, without others, I'd become depressed and reclusive.......so I work on my attitude every day ; it's hard work but the alternative is isolation.

If you were to take a break Vikki do you have relatives where one of you could stay for a time while you both lick your wounds ? xx

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Cat

Thank you for your understanding

I have two boys to look after and one is disabled, I have to make them a priority, it can be quite upsetting to the 7 year olds when there daddy is constantly shouting and swearing! Although he realises his actions are inappropriate he can’t stop himself hen he gets going.

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It's so sad when a relationship is threatened by issues outside of our control, especially when there's been a long history of compatibility. I hope you'll find your own way of persuading your man to get help for his mood swings Vikki. The loss of empathy might be the biggest issue ; it's something I really struggle with and I still mourn the loss of my demonstrative days, but it's SO common after brain injury.

I hope you can hang on m'dear but, if not, no one would judge you for putting your boys first in this complex and highly challenging situation. I'm sure you must feel exhausted.

All best wishes, Cat x

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I suffered a TBI back in 2014 and was a challenge for my wife for 3yrs. I am now close to who I used to be, I do fully appreciate and understand I can never be exactly the same as I was. Damaged brains will never repair they have to be reconstructed by the victim. Not easy but equally not too difficult. He needs to comprehend what has happened and it might take him consultancy’s and time to arrive where you want him.

Sorry to appear negative, but he needs to see and accept the changes imposed by his brain damage, before redesigning himself should he wish to do so. Cheers x

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Thank you for replying and don’t apologise you didn’t seem negative. I understand he will never be 100% like he used to but at this stage he is still very much in the denial stage and can only really concentrate for short periods of time. Although he has also been very lucky that his cognitive thinking has not been affected! He is eager to go back to work but at present cannot handle his fatigue and that’s really when his new personality shows.

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Thanks for your reply. I understand from my own experience, it’s easy for you to notice any difference. It won’t be as easy or even feasible for him to do so at present. I only got my driving licence back in November, but when I did I set up a computer based new business which is going well. However, six hours on-line, is far more tiring than walking for six hours, and may always be so. No worries though, that’s a waste of time & energy for me. Good luck with it x

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Dear Vikki

My heart goes out to you! The shock of such change is enormous and it sounds like you already have some other big things in your life to cope with, with young family and disability to boot.My husband had autoimmune limbic Encephaltitis last October and has become a nasty critical selfish stranger. I am told he will recover but it agonising and distressing living through the process. I have wanted to throw him out so many times, my lovely patient and benign husband is lost to me. Life can be very cruel.

I don't think there is any " right" way to respond to this, we are all different and the brain injury is different in each case in the way it manifests. For me as a spouse it's realising that the situation is not all your responsibility nor yours to "fix" and you'll make lots of mistakes.

It's tough too, because it's quite hidden in many ways and sometimes passing acquaintances can experience the bu person as " normal" but of course it all unravels in the intimacy of marriage.

All I can say to you is hang on in there if you can, but make sure you get lots of support and love from all your friends and family and above all look after yourself. It will become clear when and how to make big decisions as time goes by. Sadly some marriages and relationships are casualties of such dreadful health events, others not. I am a retired GP and I have always been astonished and awed of how strong and enduring we can be in extreme adversity. Follow your heart, it will be the ultimate guide for how you and your family choose to deal with this situation.

Dinah

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Life is so cruel Dinah

I’m sorry your going through something similar! It’s heart breaking and so unfair to us all including the people with brain injuries.

he is all I have ever known since I was 17 years old (20 years ago) he has always been abit Highgate but now it’s at a all new level. It’s really odd because we have a disabled child and his emotions and affection towards him is 100% the same, it’s be and the other twin that’s get it from him! He was with my dad yesterday and told him all I think about is myself! These words really hurt as throughout all this the last person I have thought about is me! I’m trying to look after my boys and him! Run two of my own business! We have two dogs which he hasn’t offered to walk! He can’t see what I’m doing and that’s what’s upsetting. He has done though about a month ago and made comments like you shouldn’t be working like this it’s not fair! I think the key with my husband is managing the fatigue! He couldn’t get out of bed this morning to help me with the children but he has been for quite some time now. Funny isn’t it how awful he was yesterday and yet today he was still in bed when I left for work and when I came back 5 hours later he was on the sofa asleep. I’m expecting a rough few days with him and then we may go on a high again! Who knows life is so cruel xx

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Hi there Vikki, we are now 20 years on from my husbands ABI and it was very hard in the early years. We both struggled with the 'new norm', trying to find the way to make it work best for us both. It is different - less of a partnership and me more a carer. We found momentum and headway essential - we had counselling separately and together to help us at our worst times.

He went to Momentum for 6 months 2 years in, then Headway day service after 15yrs and now attends Headway social activities a couple of times a week. I gain support from Headway carers and local carers trust activities.

We both get massive support from speaking to others who really understand our situation and it helps us realise how lucky we are to have each other - there are many in a worse situation and we help others when we can.

Sadly there is no 'fix' - but a greater understanding and acceptance does come with time. For my part a cancer diagnosis 4 years ago means I understand the fatigue aspects much more now.

Sadly we went to a friends funeral yesterday and we both commented that life now isn't what we expected it to be when we married 30yrs ago, but it is good to be together, have each other and wake each morning to live life to the full in the new norm.

There were times in the 20yrs it seemed too hard, but my heart said to seek help and find a way through which we have done. Take care xx

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Sue thank you for your advice! I have tried to get him to go to our local headway group but he refuses! My gp as suggested counselling for me but I don’t feel ready yet! I would probably just sit there and cry and be unable to talk! Maybe in time it’s something we can do. I know he has been very lucky, lost no cognitive skills, cleared for driving and wanting to go back to work which is abit difficult because he was a roofer and that’s how he had his accident! I wouldn’t be able to cope with him leaving the house each morning thinking I was going to get that awful call again. Thank you xx

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Vikki, you need to look after you first, only when you are at your best can you help him by being patient/understanding/honest and the rock which he needs to find a way through. Yes the counselling sessions start as weeping sessions (mine did) but it gets better and you find those things that help you while you wait for him to accept he needs help. My husband is the old fashioned head of the household chap, a mans role is to earn the family keep. He was scared of that change in status and wanted to be his old self so was in denial for some time lashing out at others for his shortcomings. He too drives and went back to work (he had an rta while at work) quickly but as a bailiff he could no longer find his way roadwise and could not count money. 6 months after returning to work he was begrudgingly willing to accept he needed help and went to Momentum. So start by looking after you - make time for you, go and have a pamper, go out with friends for a walk in the fresh air who'll let you moan, whinge and cry, do something you love (singing in choirs for me, maybe painting or decopage/quilting for you), and possibly join Headway carers. We are here for you when you need us xx

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In short:-

In all likely hood, YES, it will improve, but there maybe backward steps and some angst along the journey!

I had a Traumatic Brain Injury, TBI, in June 2008. I was in hospital for 6 months, having been in a coma for 4 days. I believe every TBI is a unique event, and even though there are common features between a lot of cases, there are no guarantees regarding recovery timetables.

I had particular difficulty with empathy (understanding others feelings), and to a certain sill do, though I have become much better*, so couldn't accept how irrational and unacceptable my decisions of behaviour was. *(My wife would probably be a better to answer whether that is true.) As I now work with Autistic adults, and don't seem to express my feelings in my body language, or read that of others, it has a positive effect when working with a group who have historically have trouble 'reading' peoples body language.

There is light at the end of the tunnel, best of luck with it. Some negative effects of brain injury, can have unexpected results; and though it may be traumatic at the time, or even inconceivable, there could be some humorous bits! Honestly, 10 years on we look back & have a chuckle, and we are still together, which is no small achievement. 75% of people who have a TBI separate from their partner I believe. My wife after one particularly bad incident, sat me down, with tears in her eyes, and told me if I carried on the same way, we would have to separate! It took me time to process this information, and though it didn't have an instant effect, it certainly struck a chord. It changed the way I think, and even though I rebelled a bit at the time, after my initial silence and outrage, it was a life changer. I new those figures after reading James Craknell's autobiography, and didn't want to add to them! (I had to learn to read again after my TBI, and the first book I read was 'Touching Distance' and it took me AGES!) James had a TBI and even though the circumstances were very different, his frontal globe injury, emergency treatment, and the initial few months post injury , was remarkable similar to my own. It was shattering for meas I have no recollection of a month prior to the accident, or three moths while in hospital afterwards!

As I have said GOOD LUCK to both of you and your family. Be strong! Its worth it!

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