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Brain injury

(99 Posts)
babybarrister Mon 12-Nov-12 11:08:52

Just to say James Cracknell who suffered from a brain injury after a cycling crash is doing a webchat today about his new book written with his wife - I am sure that I cannot be the only spouse living with a brain injured partner, so please come on down and contribute!

babybarrister Thu 15-Nov-12 11:05:21

2blessed - I don't know what to say save that I am so so sorry for the situation you and your family is in and I hope that you are getting some professional support for yourselves as well as your DH. Life can be really shit. BB

prettybird Thu 15-Nov-12 11:09:33

2blessed - don't feel weird.

I know where you are coming from. When mum finally died, there was a sense of relief and we could start to grieve for the woman she had been.

She was profoundly miserable - and that is not 'cos of poor quality care, it was 'cos the part of her brain that made her care about things had been damaged. Nothing could give her pleasure, she was just existing sad

I ended up asking my dad why we were forcing encouraging her to eat extra every time we visited, when she didn't want to (she didn't really eat at meal times either).

In the end, we stopped trying to push food on her and just encouraged her to have the semi-solid fluid stuff to keep her mouth moist (she found swallowing liquids almost impossible).

I do feel guilty about not appreciating the progress she made in the first couple of years, when we almost got her back (as much as we ever were) before the deterioration set in. sad

It's ok. I don't get professional support, but tbh, I don't think I need it. There was a massive change in all our lives after the accident, but the dcs were very young (6 and 3 at the time), and don't remember much about it all. They've both lived with it just being me and them for over half their lives now, and they're fine. My older ds is asd, and actually was also injured v badly (he had fractured skull and shattered bones in his leg - so badly that at one stage amputation was considered - but they managed to patch him up, and bar a few scars, you'd never guess! Younger ds escaped completely unscathed, and says now he remembers being in the ambulance with me, and then granny and grandad coming to the hospital to pick him up...but after that, nothing else really struck him as unusual, so he has no great recollections of that time.
We all feel ambivalent about visiting dh - older ds gets quite anxious and a bit distressed sometimes, but other times is fine...younger ds is ok, but doesn't like it if his dad tries to touch him, or hold onto him. In fairness, dh does have a tendency to grab your hand and then squeeze as hard as he can, and won't let go, so I understand where ds2 is coming from. He likes a particular board game, and will play it for hours, both boys indulge him in this, but he gets very narked if he doesn't win, then it all gets a bit shouty and we leave.
I absolutely hate going, and tend to have a cry after, and I can't eat before - I get this kind of knot in my stomach.
I met somebody a while ago, a lovely man, who I had known through a friend for a while, so he knew what had happened to us. We got together 3 years ago, and he's great.
I laid it on the line quite brutally though - I won't divorce dh so I can't marry you....you can't move in with me and ds's...and I will always be responsible for and look after dh...are you sure you still want to go out for this dinner?
Anyway,I suppose my point here is that we feel that our lives are normal again, it's a different kind of normal, but still. Lots of people are separated, both ds's are at secondary school now (ds1 in specialist unit attached to mainstream) and have friends that don't even know what happened, I assume they just think that dh and I are divorced. I too, have some new acquaintance/friends that I haven't yet felt the need to tell - and since they've never probed as to "am I alright?" I guess I don't come across as woman with tragic backstory - and lots of people have those anyway, I'm nothing special, and I have no desire to be the object of anyone's pity.

Just read my last post back....jeez I can go on a bit, sorry blush

prettybird Thu 15-Nov-12 11:51:14

Dh could always tell when mum was "better" when I visited her, as I would come home more distressed. It somehow made it more difficult when you could see the glimpses of the "old" her. sad

She did not "go peacefully into the night".

Ds was 7 when she had the accident. He's quite upset that he can't remember what she was like before the accident. I suppose the more difficult woman she became was a stronger memory and overwhelmed the previous ones.

insancerre Thu 15-Nov-12 12:03:36

hi everyone
glad I've found this thread. My DB is recovering from a TBI sustained in a violent assualt when he tried to help a friend who was being attacked. It has been difficult for me as I live several hundreds of miles away and can't visit as often as I would like.
I read his fb updates and feel like crying most days when I read them
especially this one
"had a letter from the hospital outlining my medical problems from the assault. I'm Romberg's positive (had me worried til I looked it up, means my sense of balance doesnt work correctly), have memory loss, problems with speech, hearing loss, pain in lower limbs, poor attention, constant headache, problems with mobility.
Also my diagnosis on reaching hospital:
a GCS of 7 (means I was in a coma, a
GCS of 3 is braindead, so 7 isn't good at all)
Traumatic left extradural haematoma (means I had internal bleeding in the skull, which puts pressure on the brain and causes brain damage)
Traumatic subarachnoid haemorrhage (means bleeding into the brain, real nasty this one, usually means death, so lucky to survive, but there's a chance of it happening again).
That cheered me up, I was much much worse than I thought, and I already knew I was close to dying. But really really lucky to survive and come out of it so well"

The very worst part is the man who did it has not been charged because my db can't remember any of it and the police don't have enough evidence although they would like to charge him with gbh.

madwomanintheattic Thu 15-Nov-12 16:17:14

Oh, blessed, that sounds very tough. It's good that you feel you have coped with such a huge change in your lives though, and have negotiated a new way of managing an ongoing relationship and commitment to dh. I'm sure you have ups and downs. I'm pleased you have been able to form new understanding relationships, too x

Insancerre - does dbro have access to headway? He sounds just the type that would benefit enormously smile and he sounds as though he is doing really well.

TheWombat Thu 15-Nov-12 16:20:39

Madwoman - DH didn't have Pax insurance but I can't believe you didn't get anything. How can a TBI not be on the list? Grrrr.

Sadly I have no idea who did the transfer to Selly Oak - and of course DH can't remember. At the time when DH was injured the military hospitals had been shut down and yet nothing had really been put into place at Selly Oak. I think there's been a huge learning curve stemming from the increases in casualties in the last 10 years, and in the increasing media attention. Not saying they get it right all the time now, but slightly better than dumping someone just invalided out from a war zone straight into a bomb-scare train station (doh).

I think there is a weird 'don't ask, don't tell' thing going on with fighter pilots / navs. It seems like (un)fitness to fly is a bit of a taboo subject as nobody wants to be grounded. So people who suspect something's up don't want to raise it. In the case of my DH, it was really only when someone realised his impulsiveness /aggression was putting his crewie at risk that things came to a head (I wouldn't have liked to have been in on that little conversation!).

Yes, the seizures are a bit crap - but we are used to it. I have never known DH any other way. The bit I hate is coming home from work and wondering whether I'll find him unconscious. Once I came into the living room and saw him laid out on the floor, where he'd banged his head on our brick hearth. His forehead was two inches from our hot wood burner - makes me shudder.

Interestingly we have a pet cat that recognises when DH is having a seizure. However he never actually does anything helpful - just waits until DH is still, then curls up on top of him, wherever he is lying, and does his best to prevent anyone (paramedics, me, anyone at all) from getting to him and administering any kind of medication or first aid. Nice! hmm

TheWombat Thu 15-Nov-12 16:29:25

Hello 2blessed and welcome to the quiche. I am so sorry to hear about what happened to your family. I agree with prettybird - nothing weird about not wanting your DH to be in pain any more, or to want some kind of release for you all. You must feel so very torn sometimes but must be so proud of your DC. I'm glad you've found an understanding new chap and that things are mostly back to normal. You must be an immensely strong woman, I am a little bit in awe blush. Puts my experiences into sharp perspective..

madwomanintheattic Thu 15-Nov-12 16:50:36

Dogs are increasingly used as seizure assist companions - never heard of a cat though!

TheWombat Thu 15-Nov-12 17:08:20

Insancerre (great nickname by the way) your poor DB - I live hundreds of miles away from my DB too and would also feel so helpless not being able to do much practically. Can I ask how long it has been since his HI? It sounds like he was very poorly but that the specialists are doing a thorough job of working out the impact of his injuries.

Must be so frustrating that they can't find out who is responsible for the assault - and very traumatic for your DB too. My DH's memories do change over time, it may be that the memory of what happened will return at some point, so don't give up entirely on the thought that the police will have more to 'go on' one day.

I agree that Headway might be a great option for your DB - if he's able to use social media like FB then tell him about the Headway forum. It's quite a lively forum and he might benefit from being in touch with other HI sufferers as he goes through rehab. My DH has found it useful and sometimes posts/lurks/plurks there.

I think the Headway forum is also open to family members of people with TBI too, in case any of you are interested..(I'm not a member myself).

TheWombat Thu 15-Nov-12 17:17:33

We would love to get a seizure assist dog and have looked into the options. The sticking point for us is that the residential dog training programmes only take people who get frequent seizures - so that in a space of two weeks, the dog can be repeatedly exposed to the TBI sufferer's seizures and trained to respond to them. With DH, his seizures are usually once every one or two weeks - sometimes less, if he's been good with sleep.

However, we are looking into getting a support / assistance dog to help boost DH's morale, feel more confident about going out in busy places, and importantly, carry his meds and notify someone if he needs to take them. We've found these two charities who do great work in this regard - might be worth looking at for others too?

Hounds for Heroes - injured service people only

Canine Partners

If anyone wants to read about a dog that transformed the lives of a family of a brain-injured person, have a look at Endal. He has his own website here and you can buy a book written by his brain-injured owner here

Maybe not quite the thing for you and your family BB, sorry

insancerre Thu 15-Nov-12 19:12:25

thank you madwoman and wombat. I will tell him about headway- he is a bit of a computer geek so may know about them already. We communicate just through facebook at the moment as he can't use the phone as he can't really hear and he finds texting too hard at the moment.
The attack happened at the end of september, so yes he is doing really well, but gets frustrated at how badly he has been affected and at how much his life has changed.
I really hope that he does remember something soon. I t was awful having to tell him n the hospital what had happened to him- his attacker was a friend of his.

babybarrister Thu 15-Nov-12 21:44:47

Insancerre - brain injury is sadly a marathon not a sprint. Headway really is very good though for giving support on that path. As I have said up thread it really is v male friendlysmile
We are just struggling with trying to understand DH work disability insurancehmm - they do not exactly make it easy
Anyway wishing everyone on this thread a lot of hope and positive thoughtssmile

TheWombat Sat 17-Nov-12 12:41:47

Hi everyone, how are your weekends going?
Just to let you all know there was a v interesting interview with James Cracknell on BBC's Hard Talk. Will be on iPlayer if you want to see it. smile

babybarrister Sat 17-Nov-12 14:23:52

Thanks - will have a listensmile

WonderWomanwasmyheroine Tue 20-Nov-12 21:12:31

My dh had a traumatic brain injury in 2004 as a result on a hit and run...van v man..I think we can all see how that one ended!

He was in a coma for 2 weeks and then utterly bonkers for 2 weeks. We had been told he may not survive and if he did he would probably need care for life. He then made an astonishing recovery so when he was discharged the professionals who were expecting a vegetable wished us well and we went on our way. The only specialist he saw until we made an insurance claim nearly 2 years later was an opthalmologist! He subsequently attended a centre in Birmingham run by Rehab UK who were amazing but limited in their funding, it made a massive difference but he hasn't worked since 2004 apart from a brief and disastrous return for a few weeks.

Every so often...every couple of years or...he forgets what it was like when he went back to work and thinks he could cope, he couldn't. He struggles with stress, being 'told' to do something, prioritising and not expressing every opinion no matter how rude from time to time, he also has completely lost his sense of smell which can be a mixed blessing.

My ds was 5 months old when he had his accident and 18 months later we had twin ds, I do sometimes wonder how dh/dc will cope with each other as they get older...he can be extremely inflexible at times...but we are where we are and you get on with it.

I have no choice but to work full time which I probably wouldn't have done otherwise and I have a strangely independent/dependent dh which can be wearing.

What I struggle with is peoples reactions, they either can't see anything wrong at all and think you are making it up/exaggerating or watch him like a hawk waiting for him to do something dreadful because he has brain damage - which he doesn't do. I am sure it is why he is viewed with even more suspicion than even house husbands normally attract.

Anyway didn't mean to write so much but reading the thread made me want to...a selfish response if ever there was one grin

babybarrister Wed 21-Nov-12 09:27:04

thanks for writing - I really have to say I think we all have balls of steel - I too have been through various "life events" hmm and can rate brain injury as a real bastard!!!!

Do you ever still use Headway? they really are very good indeed - DH attends meetings and finds it very helpful to speak to other people as did I.... I will never forget the first session we went to - the feeling of relief for me was frankly overwhelming - I can still remember the warmth in all senses of the word as 3 months after the accident I finally managed to get DH there, the doors opened - it was snowing outside - I stumbled into a big armchair and a mug of tea was put into my hand. It is very difficult to put into words how important it was for both of us to be with people who actually understood what we were going through...

anyway onwards and upwards! smile

madwomanintheattic Wed 21-Nov-12 23:02:59

Danny Nightingale. There's a chap that could do with Headway.

I am unremittingly cross with the MOD now. I don't give a fig that they've locked him up for being in possession of a stupid war trophy, but why did no one realize what a state he was in? Why did they let him carry on working? His wife must be beside herself. This is exactly what happens when you let dudes with brain injury carry on regardless in the MOD.

Aaa argh. Fecking testosterone has a lot to answer for.

<cross>

<but waves to Wonder Woman>

babybarrister Thu 22-Nov-12 14:37:35

www.crimeline.info/uploads/cases/nightingale.pdf - this is the transcript of his sentencing hearing - includes evidence about Brain injury from Headway - he is now going to the Court of Appeal

TheWombat Thu 22-Nov-12 18:28:23

Waves to wonderwoman. Hello and welcome. Not a selfish post at all, in fact have a brew.

I agree that people's reactions are a challenge. It's hard for me not to interject sometimes when I hear MIL or similar saying something which makes me realise they just don't know how to handle this.
I'm working FT too.. But am lucky that DH loves to cook and is very house proud with perhaps a touch of TBI-induced OCD so he takes great care of the housework side of things.

I agree with babybarrister that we need balls of steel - and will raise you a thick skin into the bargain wink.

Please keep posting and letting us know how you're getting on. It's nice to know that we are all undergoing similar challenges.

Yeah, when I heard about Danny Nightingale I immediately thought of all of you on this thread. I do hope that the appeal goes ok for him and his family.

WonderWomanwasmyheroine Sat 24-Nov-12 15:52:11

flowers babybarrister and TheWombat . Ditto the house proud cooking husband...there is an upside to everything and a touch of OCD with zero sense of smell probably makes for the perfect househusband.

IL's are probably the worst culprits with the misunderstandings, my Dad DH's FIL still asks every time we see him when he will be getting back to work....it's been 8 years! Needless to say we see them less than we used to hmm.

As for Headway we did give them a try but now we live in the least populated county in the UK they are a bit harder to access. I might try to get him online though as I do think the need for support is probably going to be lifelong in the same way as the impact of his accident is.

VinoEsmeralda Tue 27-Nov-12 15:21:46

My DH has just worn out our Miele washing machine! He is in charge if washing and does at least 1.5 loads a day! OCD re cleaning and cooking is a military operation, don't try and help or he will boil your head for stock.

My DC were 11 weeks and just 2 when DH then his accident. I was told he was unlikely to survive ( major trauma to other internal organs although brain was most threatening plus massive blood loss - needed 28 or 29 units of blood, can't remember exactly). He made a through the 1st 72 hrs and then was woken up after 2 weeks and made an amazing progress from then on. Amazing sheer determination.

He is the same - can't work but sometimes he thinks he can, pops up every so often. I work full-time now and can honestly say he makes a better house husband then I ever would be a housewife!

babybarrister Tue 27-Nov-12 20:53:44

Does anyone have a DH on here who does work as mine works part time and does not seem to realise he is not in fact superman ... He thinks he is a failure as he is not working full timesad

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