TBI And the effect on partners

[Izzy070769]

It’s nearly a year since my Fiancé suffered a severe TBI in a collision with a lorry, she was my passenger along with our two children and the accident has changed our lives forever. The journey through recovery has been horrendous for our relationship and has left us financially struggling to pay the bills.

I am a pretty strong person but I am finding it very difficult to deal with the Jekyl and Hyde personality and emotional mood swings that rock our home life each week. I can’t reason with my Fiancé since she suffered her injury, I had obviously hoped that surviving and coming home would be joyous but that’s not been the case. How do I deal with someone that now has no empathy, lacks emotion and reason and seeks to push me out of her life???

[Hidden]

It's bloody hard. It's only 6 months since my husband had burr hole surgery for a chronic bilateral sub arachnoid haemorrhage and an acute left sided haemorrhage. Caused by a tbi - when the 1st bleed occured 10 yr ago.

He has no insight at all into the effect this has had on his personality, so much so that as I'm so awful I've been alienated by his family. Non of whom have done a thing to help him. He left me 2 months ago but still expects me to act just the same towards him and his family. He's got no empathy or emotional understanding at all. It hurts like hell and I'm not sure we will survive this as I'm not prepared to be treated like this for much longer. I know it's not the real him but he has to start to accept the truth. Brain injury or not we the carers shouldn't allow them to treat us badly, when they won't accept it from us. We need to set boundaries for our own sanity and if that means ending the relationship then that's how it had to be.

[Izzy070769 in reply to Hidden]

Your husbands family have taken a very familiar stance to that of my Fiancé’s, she had created such a negative view of me that they have attempted to push me out of their lives and that of my children. Of course I’m not having that and but Ive had to employ solicitors and go to court to secure access to my kids. All that on top of everything else...it’s a wonder I’ve survived myself.

The lack of insight is a recognised condition as are the changes to personality and anger issues all of which I am aware of now and do understand, it’s still very hard to tip toe around all the time but necessary for the sake of our children.

Our stories are all so very sad even when you try and look at the positives

[Izzy070769 in reply to Hidden]

Thanks for reassuring me I’m not on my own dealing with a new difficult partner

[Hidden in reply to Izzy070769]

You certainly aren't alone, I've joined a brain injured carers group and so many of us are going through the same thing. The support from that group and the help I've received from our HATS nurse has really helped. Letting him go and get on with it has been so hard, especially when I can see how much he's struggling. But it's something I have to do.

He's been waiting nearly 4 months for a full cognitive assessment !! I'm hoping that when he sees it in black and white then he'll start to realise he's changed. He has said to his daughter - who lives in Australia that he thinks his emotions have changed. Her reply was you are fine it's her !! How the hell does she know ? She's never spoken to me about it since I rung to tell her when he was admitted into hospital. No thanks or reply when I let her know how the surgery went. It makes me so angry. He's admitted that no one but me cares but still I get the unreasonable behaviour and anger. He won't read the headway publications or anything related to head injuries, he's in complete denial.

I know it's all part of the injury and normal in these situations but it doesn't make it easy.

I do however feel much better since he left as I'm not walking on egg shells all the time. My mental health got really bad. I found counselling really helped too. Have you tried any yourself ? You also need to make time for yourself and your needs. Which I know is impossible when you have children at home. Good luck x

[Izzy070769 in reply to Hidden]

I have had a few sessions with a counsellor which was a great help as regards the PTSD I had immediately after the accident.

We are living separately now which is really hard on the kids and me thou it’s easier from the perspective that I’m not being verbally and emotionally abused on a daily basis and I can try to get back to full time work. Its virtually impossible as the partner of some one with a TBI, to reason with them, you are the target for all of their irrational anger and frustration.

What’s the name of the group you’ve joined that’s been of help?

Thanks again for taking the time to message your help and support here

Best wishes simon

[Hidden in reply to Izzy070769]

The page is brain injured carers support. They are fab really helpful and supportive.

Hopefully your fiancee will start to develop some insight because that's the vital key I think. I could be wrong though. I wish my husband would start to gain some because until he does nothing is going to get better. Watching him living as if nothing has changed is tough.

We are on holiday at the moment, we fly home tomorrow. Then next week I return to work on a phased return after 5 months off. I did go back 9-10 weeks ago but he kicked off big time over where I put my car keys ?? That escolated into everything I say or do being wrong. I was in a bad place mentally by this point and had a couple of panic attacks. He couldn't cope with them Which is why he left me. Hence more time off work.

I won't be there for him so much then so I'm hoping he's going to seek the help he needs and realise he can't keep doing what he's doing before he crashes and burns.

With no-one to pick up the pieces x

[DTBI]

It took me three years to recreate my brain to the extent I was fair and reasonable to my family. Sad but true. It is so difficult to deal with something you don’t initially recognise as being damaged, and then realise it needs to be reconstructed. Personally, I started focusing on my brain and did a couple of hours exercise on it each day, I then started to write a couple of books. I recommend you try and be as persistent as you can and encourage her to focus on the repair of her brain. Good luck! x

[Izzy070769 in reply to DTBI]

Thankyou for taking the time to explain and encourage. We are really hopeful that the specialist rehabilitation she’s starting next week will help her develop strategies and insight

Best wishes Si

[HJ10HMO in reply to Izzy070769]

Its hard Izzy and does not get any easier. The changes in personality are real but each case is different. Its been 2 years since my partner had his TBI and in the main he has been very lucky. Most people dont really notice the difference between before and after but living with him sometimes has me wanting to throw in the towel. He has become so self centred and everything is about him. I dont think he means to be like it but he just does not think. Its hard for us to understand and things like hot weather make them more tired and grumpy, I know in my heart he does not mean to be hurtful but sometimes he is so I try and step away and go and do something for myself. If friends and family experience this they can just walk away but when you live with it everyday it can get you down. I usually get him to go and have a rest then revisit the behaviour once he feels a bit better and he is then mortified that he has upset me. Lots of love xx Mo

[Hidden]

It is so difficult isn't it. The person you love has become someone different, someone you wouldn't chose to be with. Please ring Headway and talk to them, they can offer lots of advice. They may have a Headway branch near you where your fiance can go - listening to other people with a bi can be helpful, she may be able to have counselling. You could have counselling too, it doesn't change things but helps you to see them differently.

Do get in touch with your Citizens Advice Bureau for help with the bills. They are experts at this sort of thing.

Good luck, it is a difficult situation - I've been there too,

[RogerCMerriman]

I was a total horror to my wife, still can be, during the first year. I can and still do get upset/out of contex things I’m better than I was but I’m still fighting a inner toddler/teenager at times.

[AVENA]

Hi, I am 13 months into this and my husband has had an amazing recovery from a Ruptured Brain Aneurysm. This week though has seen quite a change in personality. Negative talk all of the time, really not bothered if I am around or not, everything (literally everything) I do is incorrect or wrong, he is making things up about things he has arranged and I have just wanted to not be around him to be honest, I could feel my happy soul leaving through the front door but leaving my shell behind, stuck in the house with this black cloud. Tried everything, even prepared my own Stand-Up Routine, but such negative feedback, I ended up getting arsey as one does, cried in a room on my own several times and then had to ring the Headway Nurse for a chat (which helped a lot). I really thought not sure if I can keep doing this forever, this is totally pants, so I went for a swim and cheered myself up so I can deal with it again! So that makes me think what changed. The only thing we have done differently is four days of interaction with others. Socialising with old friends and fishing for a few hours, an appointment with the consultant & seeing the staff that looked after him last year, which was hugely positive and a visit at home from our helper who is very jolly. He looks tired and does not sleep well. He cannot motivate himself this week to do anything other than look at his computer for hours and hours & hours although he researches music (his love) and scientific papers which is related to his work, so quite positive stuff but interjected with some other things that we won't mention here on occasion! I think I am dealing partly with too much activity may be, along with lack of sleep (consultant is going to help with this) & maybe sadness/depression(?) realising what he can't do. Whatever it is it is a huge strain on me - the lack of empathy & outright negative nastiness drives me away and although we are in the house together I feel like I may as well be on my own. Even the poor old dogs can do no right in his eyes - Any thoughts on how to tackle this or observations of what could be going on here would be gratefully received so that I can polish up that red nose, put on those big clown shoes and try to be more jolly today!!!!!!!!!!! whilst also working full time from home which is a challenge in these circumstances. The heat is not an issue as he feels the cold all the time and these temperatures are actually quite to his liking. HELPPPPPPPPPPP

[Izzy070769 in reply to AVENA]

Hi Avena hows this week been at home? I hope it reassures you to know that all of those things are nearly always as a consequence of having suffered brain injury of one kind or another. I totally understand just how hard this can be for you both. We are a year along the road now after my partners TBI and she is really doing amazing in lots of ways, but she’s still hard work. As hard as it is to deal with the swings in mood etc, I always remind myself that it’s because of her injury and that she wasn’t like this before. So try not to bite back, sometimes saying nothing at all in retaliation will quench a potential argument. And yes it is really upsetting, every time.

Best wishes Simon

[AVENA in reply to Izzy070769]

Much better week thank you - sleeping better due to a change in medication which seems to be helping no end. I am also learning not to take the bait, a hard one as I always have to have the last word!!!!!!!!!!!!!!!!!!! We are moving along a lot better. I went to the Headway Carers meeting and got some excellent advice on Friday, it was well worth it. I hope you are doing okay too.