Headway
5,431 members7,828 posts

Really need help and advice

Hi I'm new to this but could really do with help/support and advice this is my story:

I got married to my husband on the 12th October 2017 the happiest day of my life then it all changed on the 6th November 2017 when my husband's boss came into my place of work to tell me my husband had been involved in a accident at work and had been rushed to hospital. He told me that a 4 by 7 piece of wood had fallen from 3 stories high onto his head the rest was a blur as I just went into panic mode I got into my car a drove to hospital to find him laid out and his left side of his head caved in. He ended up with a fracture skull and a bleed on the brain he got out of hospital beginning of December 2017 and it has been hard ever since, his mood swings are off the scale and he is not the husband I married we argue everyday but in his eyes he is fine and nothing is wrong but I no there is I just don't know what to do. I feel so run down and alone. I've spoken to friends but they just don't understand which makes me more frustrated please can anyone help

32 Replies
oldestnewest

I am afraid that your story is the same as many bi people. It is hard for them - but also extremely hard for family members. There is no easy answer although I am sure that many people on this forum will be able to give you some advice. It is still very early for him in bi terms, his brain is probably still repairing itself. See if you can get some counselling to talk through these problems and also phone Headway for advice.

1 like
Reply

This was going to be my next step was to get some counselling for myself because he will not get any help and he says there is nothing wrong with him

Reply

Definitely call Headway 0808 800 2244 too. You may also find helpful information on their website: headway.org.uk/search/?Sear... I know denial for me was very strong in the beginning too. Those with the brain injury don't want to think anything is wrong, when there really is. Also please feel free to ask me any other questions you may have. I'll offer whatever answers I may have.

Reply

Thank you means alot

Reply

hi i understand, because ive got a brain injury.

i say things, but after 6 years my wife is used to it and picks me up, i dont realize ive said it.

when i first had it, i ground her down and she had a melt down at work and took me to see the gp and broke down in the surgery, i was referrerd to a psychiatrist who put me on tablets to regulate my aggression and mood swings, they work but every now and then i well.

keep friends away from the house or you will lose them because they wont know how to react to him and so will not want anything to do with you.

you dont say why you argue.

1 like
Reply

He won't talk to me about it and when I suggest going to see a doctor it just starts an argument because he says there is nothing wrong with him it's like he is in denial.

Reply

he is, when you think about it, its only 4 months since the accident, it appears to as if hes had no support from the hospital since they kicked him out in december, lucky you, the same happened to my wife.

Reply

No we have had no support from the hospital no follow ups or nothing just got told 2 go 2 our gp for anything now which we have been twice since 1st time because he developed a secondary bleed on the outside of his skull which they said there was nothing they could do it was normal and the 2nd was his eye sight has gone blurry in his left eye they just said he needed to go to the optician which we did and they said he need glasses

Reply

did you explain to the optician the blurriness was due to a secondary bleed?

what medication is your husband on?

Reply

Yer explained it all hun and he is on no medication they just told him to take paracetamol if he gets a head ache which he still gets but not as much and he says it's more like a punch to the head 4 a couple of seconds then it goes

Reply

i think you need to get back to the gp and request an appoint to see a neurologist, he/she can then order a new scan to see whats going on, but from the old scans tell you what part of the brain was damaged and what else you might expect.

for me its aggression and mood swings ( im on meds ) noise intollerance, inappropriate behaviour indoors and out ( because i dont have any thought filters if i see i see someone fat in a supermarket loading up their trolley with cakes and the like then i tell them no wonder youre fat ). my wife has learnt a lot of my triggers and will distract me.

another problem i have is short term memory loss, but the most frustrating thing is ill be in the middle of a conversation with someone and boom, its gone, what was i talking about.

ive within the past 2 years officially been diagnosed with epilepsy, although ive had it a little while after my brain injury.

1 like
Reply

Hello, Samtopliss

Austerity bites (I'm assuming you're in the UK, forgive me if that's not the case), after a month in hospital, it would be reasonable to expect some after-care, but provision is so stretched/rationed that most of us end up in a situation of "If you don't ask, you don't get." 3am, and I'm wondering if there *are* people who bounce out of hospital and are immediately 'back to normal', or whether we're all released into the wild as soon as we can manage to get our own trousers on the right way around, and told to 'suck it and see.'

First step, as others have suggested, is the Headway helpline, I've never phoned them myself, (verbal speech is one of my issues), but their email support has been fantastic, they're brain injury experts, and will be able to signpost you to the best-fit local resources.

The anger/denial phase, and it is a phase, he won't always be like this, is something a lot of us recognise. I was an absolute tw*t for a few months after my haemorrhage, even more so than usual, it was horrible. On the anger-angle, he's unlikely to be angry 'at' you, you just happen to be there, I developed all manner of weird tactics to avoid the ball-of-anger I was aware that I had become impacting on others. I left a lot of rooms to avoid outbursts, and deviated routes to avoid poking a certain receptionist in the eye. The denial part of it is harder to articulate, and it is looped-in with the anger for me. I was angry at myself for not being 'better', especially in the face of well-meaning individuals frequently telling me how 'lucky' I'd been to survive, so I did what I'd always done when faced with any sort of obstacle, and decided 'fake it til you make it' was the best approach. In my case, it wasn't, and the effects of 'acting normal' for the last three years have taken a toll on me.

'The first step is acknowledging that there is a problem.' That 'step' probably looks like a mountain to you right now, with him insisting he's fine. (Mad side-thought of the way some women say 'fine', in that particular tone, to indicate that it's the opposite of 'fine.') Being who I am, and what I am, I twigged relatively quickly that being angry at everything, all of the time was harmful to me, and potentially harmful to others around me, it sounds like your man is going to need some external influence to point that out to him. That's where we get to 'You can lead a horse to water, but you can't make it drink', unfortunately, he's being resistant, and you're trying to be resilient, faced with what could be a life-changing injury. If you're the one doing all the compensating, you will wear yourself out, that's not fair on you, and could potentially give him unrealistic expectations of what you 'should' put up with, embedding his unreasonable behaviours.

There is help out there, but most of us in this 'new' brain-injured existence have found from experience that none of it is handed to us on a plate, while-ever we're managing to get our shoes on the right feet, and not biting the postman, 'everyone else' tends to take the 'doing quite well, considering' line, and throw out the 'it could have been worse!' platitudes. What sort of help will depend on where you are (my nearest physical Headway branch is about 20 miles away, 3 bus-rides...) In your shoes, I'd present to the GP myself, and explain the emotional and psychological strain that your husband's behaviours are putting on the relationship, if he was doing it deliberately, you'd fit the criteria for domestic abuse, he's not doing it intentionally, he's had a brain injury, and his brain is still repairing and re-routing. Ask for help for yourself first, the cliche of 'You cannot pour from an empty vessel' really is true. Please don't let the doctor fob you off with "That might settle in time.", it isn't settled now, and it's having an impact on your relationship, and your emotional well-being. If your GP is anything like two of the GPs at my practice, they might be of the Prozac-panacea persuasion. (Or whichever brand has given out the best free pens and post-it notes this month.) Medication for you might help as a stop-gap, that choice is entirely yours, but, in the grand scheme of things, it's a sticking-plaster, not a solution.

The man that you married is still 'in there', the Jekyll-and-Hyde isn't the end product. Nobody, literally nobody can predict how long this phase will last, but I'm relatively certain that everyone on this forum remembers it, from one side, or the other. (There are no 'others' here, it's a fantastic community, we are genuinely in this weird world together.) His behaviour towards you is not a conscious choice, so I can't spout off my "If you choose to continue to behave in manner 'x', the consequence will be 'y'." scripts from my previous life, I think the most helpful 'line' at this stage would probably be "I will discuss this with you when you are calm, and reasonable.", to give him cause to reflect that he's being neither. Leave the room if you have to, and don't engage with him when he's not being rational, you've already recognised that continuing discussions when he's agitated leads to arguments. (Yes, I spent an awful lot of time in the early days in 'other rooms', when I knew I was 'on one', but I'd still pass a CRB/DBS check as a result...)

There is hope, there's always hope, unfortunately there are no silver bullets, or magic wands that will instantly 'fix' him, until you find the right person to get through to him that his behaviours are problematic, he will continue assuming that they are normal. Headway can guide you, and this forum can offer a virtual hand for you to hold to navigate through this. You will come through this, we all do.

3 likes
Reply

so youve never been to a headway meeting? we dont care if youve got a speach problem,i have and unfortunately its not a nice one, but im accepted because im a member of the club and so are you.

find out where your local monthly headway group is and come along and make new friends.

steve X

Reply

Thank you u have explained a Lot there and it all makes sense and I can relate to it all

Reply

It is not austerity it is corruption. The vehicle insurance companies lobby the government to forget to claim compensation from the vehicle insurers in TBI cases where the driver is at fault etc. As a result the NHS is bled dry from having to depend on taxation while the insurance companies ought to be pursued in the courts. Please share our campaign to STOP RISK and make Police follow up road incidents properly with proper victim support. Our campaign is here: stoprisk.page.tl/TBI.htm

Reply

Dear Samtopliss,

The people who have replied already have given great insights. I will only add that it is just heartbreaking to think of what you have experienced. To go from the sheer joy of a wedding to the shock of almost losing your true love and then to being the butt of his anger rather than the object of his greatest affection: It is such a lot of intense suffering. We all feel for you and are glad that you wrote in, so you at least see that you have people to whom you can reach out who will pause and want to understand and be of help.

I am sure that you will find the way to keep your hopes high while not expecting the timing of improvement to be too fast, so you do not get disappointed. Similarly, begin caring is always the right thing, but setting some boundaries with the person who is ill is also important, so that he does not unintentionally damage your relationship.

Mostly I just want to say I am thinking of you and will continue to wish you both inner strength and external help.

Best,

Taia

1 like
Reply

Thank you means a Lot

Reply

Hi. Gosh I feel for you. You could phone the PALS service at your hospital and tell them what has and is happening, and say you need some help here. I can add weight to contacting the Headway helpline and your GP. Also you could contact the neurology team who looked after him regarding specialist follow up. And ditto the other advice here. And approach your local Headway. 🌺☕️

1 like
Reply

Hi there and sending you a massive hug.

I really feel for you and wanted to give details of my experience to try and give more insight into the effects of a brain injury.

When I had mine 3 years ago, a stroke whilst at work, I didn't have what I call the classic stroke symptoms and didn't even realise I'd had a stroke despite having done 1st aid training. Although I knew something was wrong with me I didn't realise how serious it was. I thought my husband, doctors and nurses were barking mad and I couldn't understand why I'd been put on a ward with poorly people. In hindsight I was in denial and very confused.

There were a couple of times when my 'out of character' behaviour upset people. Nothing major but at the time it seemed perfectly logical to me and felt like they were overreacting.

I've never had anger issues (though dealing with noise can drive me nuts at times) but I did feel very overwhelmed in the early months which in others could manifest as anger.

My best advice is get whatever help you can and don't be afraid to push for it.

Regards your husband have you noticed if he's tired a lot? Its a very common side effect of bi and can affect your mood a great deal. If he does suffer with tiredness it might help to have routines and try and not let him get stressed or over involved with things as it can zap brain energy at an alarming rate.

Also another big factor given how the bi occurred, what is your husband's employer doing to help eg practical, emotional and financial support?

Lastly please remember to take time out for yourself. I imagine you have so much to deal with right now and need to put yourself first occasionally.

Please don't be a stranger we're here to listen and try and help. x

1 like
Reply

Thank you for your support yer he is tired all the time but he is isolating himself to his bedroom I hardly see him I try to get him out but it just courses an argument so I just leave him 2 it but what kind of relationship is that. We are getting no support from his employer we haven't heard from them since the accident

Reply

Of course he won’t think he is wrong , show him the posts on here . I was just the same I wouldn’t take antidepressants because I said I don’t get depressed but if you can get him to read this he might be able to accept it , citilopram was like a miracle drug for me and now I feel I’m on the road to recovery. Good luck honey xxx

1 like
Reply

Good morning

I'm so sorry to hear the pain you're in. My husband and I got married 5 months almost to the day before he was hit by a car and suffered his bi in 2016.

I can relate completely to how you are feeling. My husband was also convinced he was the same and to an extent still can't see the changes now other than the practical ones like he can't work and needs to rest more.

It's the feels like walking through treacle on eggs shells on a spinning floor trying to balance many spinning plates.

The only advice I can give you is have patience with him. I know its hard but it's the bi making him behave the way he is now. Show him love and when he is angry tell him when he has calmed down that you know it's not his fault,that it's his bi. When my husband is angry I don't bite back it only makes it worse but also it's important to be assertive and make sure he knows that although you don't blame him it also doesn't make it excusable. I have lost nearly all my friends as it's almost impossible for people to understand.

Books I found really helpful in the early days were James cracknell touching distance and a practical guide to brain injury by Trevor Powell, I recommend you read these.

Allow yourself time to grieve it's ok to be angry, devastated, lost and hurt you are going through this try and hold yourself kindly. I've just read the reality slap which I found helpful to learn how to be kind to myself. Also if you can speak to your gp there is help out there for you too.

Take care, Jo xx

1 like
Reply

Hi Sam

My heart goes out to you. I'm going through the same thing with my husband. He's 8 weeks post surgery for SAH.

His behaviour can be awful. I posted on here last week about him leaving me over cat food!! He will argue black is white then when you agree says no it's not it's black. You say ok it's black and he says no it's purple !

I rung everyone and his dog on Friday. I still haven't had a reply from his HATS nurse !! Which I'm really not happy about. But she had already via his consultant referred him to rehab, who had referred him to neuropsychology. So I chased that appointment and got a cancellation for this week.

I rung the Headway helpline they are sending me some fact sheets in the pos. I've already been on line and read them. But my husband being in denial as to there being anything wrong won't look at them. So I'm hoping a hard copy will help as I can leave them laying around. Hopefully he'll pick them up and have a read.

The local headway group where really good and very supportive. Sending emails and making phone calls to his HATS nurse also. You can find your nearest branch on the Headway web site. That's if you aren't in touch already

Has he not got a HATS nurse? If so speak to them if not then as has already been suggested the ward he was on or his consultants secretary to get an appointment. Also see if his gp can help with a referral to neuropsychology.

As you say family and friends have no idea and you do feel that it's you that's going mad. You do have to try and develop different coping strategies and mechanisms which again have been discussed in a previous reply. I would be careful about showing him these posts though because if he's like my hubby he'll go mad. Resulting in yet another argument. Because obviously he hasn't got a problem. I'm are lying and I need anger management.

If you can try and get counselling for yourself it does help to get your head straight. Also make sure you get time away from him to recharge your batteries.

There are also some good support groups on Facebook if you have a look around.

I do know what you are going through I keep having to tell myself that it's very early days. It's not him it's his head injury and it will get better. I'm not going to lie it's b***** hard at times. I do forget and get and get angry but after all we are only human and we can only take so much.

Big hugs xx

1 like
Reply

Yer I read ur story the other day and I could relate to it so much. I'm starting to realise now after been on here I'm not alone after all

Reply

No there are alot of us it's a tough job. I'm hoping neuropsychology can help when we go tomorrow. Xx

Reply

I just wish he would get help but he just won't I've got in touch wiv headway and they have send me loads of fact sheets and booklets he caught me reading them last night and said what u reading so I just said it's some advice and help for me and he just laugh and walked away I've left them lying around to see if he reads them. I'm don't really want to show him these message bcoz I think he did flip which is a shame bcoz I think it wud help him bcoz it's definitely helping me I'm so overwhelm by everyone's lovely comments and support

Reply

I got some fact sheets and booklets in the post today they are on the coffee table but he's not even commented on them ket alone had a look at them. I'm going to leave them there hopefully he'll pick one up and have a read.

I wouldn't show him the messages because if he's anything like my hubby he'll kick off again and that's the last thing you want.

There are a lot of lovely supportive people on here and on the Facebook support groups I'm on. It does make you feel a bit better knowing that you aren't alone. And that it isn't you that's going mad xx

Reply

I cant really add alot more than what has already been said, i too am living with what ur going through, it will get easier for you, your heartbroken at the moment but your love will get you through. My partner blamed our temporary split on me after his BI so i had counselling, mainly to show i was willing to do anything to save us, even though my counsellor said i was fine, but she saw me for 6 weeks anyway. It did give me coping strategies so it was helpful, even now my partner blames the majority of our separation on me to which i now just agree (he has taken a tiny bit of the blame... which i guess is good)

Anyway your in a good place here, you will get alot of support and make wonderful friends as everybody has been affected, its nice to talk to people in the same position but equally as nice to talk to people who are brain injured and can give an insight into how it is for them

Keep strong, sending big hugs and post as often as you want/need to

xxx

1 like
Reply

As everyone has said, the support your husband hasn't received is disgraceful. I would ring the GP and explain, obviously they can't tell you anything but they should look to help, if he's invited for a check up, perhaps it won't push his I'm OK button.

Lots of GPs know very little about TBI but they can reffer to the Rehab service. Contact details for your HAT nurse service here:

headway.org.uk/supporting-y...

1 like
Reply

I am the disabled person in our marriage of 24 years. I had my tbi from a car accident my husband was the driver, my daughter is 22. She was 18 months old when we had the accident. We have been together since the accident but now he has filed for divorce. He says he cannot cope with my moods any more. As the disabled person he should of done it at the beginning. I now have to try and live by myself with a carer to help me do the things I cannot. So if you feel like you do now it is not fair on your husband to stop with him.

Mufc

Reply

Hi,

I would recommend printing all the headway resource sheets and leaving them in a file for him to read when he's ready

Reply

It is important to get help with daily life such as filling in forms and getting the right compensation for the terrible loss you and your husband have suffered at his employment. The best thing would be to find a lawyer but this is difficult. Headway maybe can help. It would be a good idea to approach the headway helpline. It is difficult to accept TBI and it has taken me over four decades to do it and my wife has suffered a lot. Having said that if I had known about my TBI and told her she might not have married me so I am lucky. Staying together and supporting each other is a challenge. Here is the helpline: helpline@headway.org.uk

Reply

You may also like...