what's 'normal'

tyllwyd

But I'm wondering how much help can a gp actually offer? If the OP's husband is well in himself and coping with everyday life - and has improved since the original accident - can they do a lot more? He might genuinely have changed, and be more forgetful and less thoughtful than before, but maybe its going to be a case of learning to live with it? I'm thinking of Richard Hammond and James Cracknell - they have both had brain injuries that have had long term effects on their personalities.

itsanne

tyllwyd wrote: »

But I'm wondering how much help can a gp actually offer? If the OP's husband is well in himself and coping with everyday life - and has improved since the original accident - can they do a lot more? He might genuinely have changed, and be more forgetful and less thoughtful than before, but maybe its going to be a case of learning to live with it? I'm thinking of Richard Hammond and James Cracknell - they have both had brain injuries that have had long term effects on their personalities.

But they weren't just left to get on with it.

Some help might be available and knowing about problems makes it much easier to devise strategies to cope with / get around them.

Seanymph

For me I think it would be the knowing that the behaviour was because of the accident.

It's hard this living with a man who can't follow you conversationally if you take a sideways jump and says 'I don't understand you' and you have to rewind and walk step by step through the conversation again to explain why you made a connection.

This morning he said 'I put' and stopped so I jumped in and said one sentence, and he laughed and then said 'the bags of rubbish from the garden into the van'. It was a step too far. (Dumpy sacks full of green waste - he drives a big van to work, recycling centre about a mile from his work)

He said what bags, (he was looking out of the window at them) I said not to worry (I knew he hadn't followed) - so he said he was confused, what bags.

I explained - I was referring to the bags of garden rubbish, into your van to take to the tip from work.

He looked at me and said 'have you asked me to do that'.

No, No babe I haven't.

'Good'.

It is difficult. I get it's not life changing, I can be patient or tolerant or use linear speech more, make less jokes. I am grateful he can drive and is functional and only stutters and slurs when he's tired.

But it would be lovely to know these things ARE because of his accident - somehow it would be easier to know there is a reason for his not damned well phoning for a week - and make myself doubt myself less. This morning he said he'd cleaned the ice of my car window when he started his van to defrost.

I asked him if he was being 'super thoughtful to make up for crap husbanding last week'.

'No, just had it in my hand so I did yours too'.

He absolutely says what's in his head now.

So I said 'you should be being thoughtful because I was very cross with you'.

He said 'ah'. Now I know he will TRY and be thoughtful, because I've pointed out that he should be.

Does that make any sense at all? Once I say it he knows that's 'right' - but he can't work it out by himself.

I'm carrying a lot of responsibility here.

If he is watching something on his computer, or on the tv - and I'm not doing it with him and he sees something he likes - he comes and finds me and demands I watch it.

Now I don't WANT to say in front of him to a doctor that is a problem - because he'll just stop doing it - this literality he's gained. He'll think it's a problem, I won't do it. But then he won't share ANYTHING.

But it IS annoying - I'll be watching a film, he's on youtube, and I'll have to pause it to watch a guy climbing a mast, or an advert with a cute baby, or a plane doing a flyby of someone on the ground.

Now I can do that, but it's easier to do that if you know it's because of an injury.

I get that he is in really good shape compared to loads of brain injured people - and I will love the new him as much as the old him - but the new him is different to the old him, and adjusting is difficult, and making me question myself - I don't know if it's the accident, or if he's just thoughtless.

I'd like to know I think - but then, I agree - he can't be helped, I have to live with it - it's a waste of resources really just finding out so I can know that his new stutter is a result of his accident, and he does care really he just says he missed me to carry logs because he did, so it'st he truth, and if nothing else he speaks the truth now.

luckycat99

I think the assessment would be important for making sure he is OK to drive - although you don't have any concerns about this, a head injury can affect your safety and there are rules with DVLA in this regard. Also like someone said, there are techniques and strategies that your husband can be given to help and it would be a shame if he missed out on something that could be helpful.

RedBern

from your descriptions it sounds like there's something going on - and only a trip to a specialist can help make sense of it really. However, you could both get coping strategies from a proper diagnosis - your OH could perhaps start exercises which will help him 'brain train' and you can continue to be tolerant

There's little help available on NHS - or at least there wasn't following my injury - but - again - Headway would be a good start. I still have problems with words, I can be mid-sentence and know that the word I'm looking for 3 words hence has 'gone', so I have to negotiate a very wordy alternative. Also, words that look or sound the same I have trouble 'retrieving' - it's difficult to explain but there's like a 'hole' in the middle of a word that doesn't let you retrieve it properly. People who don't know me wouldn't know I have a problem though, but this is something I've had to work on. Start the diary as well - if nothing else it will show if there's an improvement over time rather than a decline. Good Luck

itsanne

Seanymph wrote: »

For me I think it would be the knowing that the behaviour was because of the accident.

It's hard this living with a man who can't follow you conversationally if you take a sideways jump and says 'I don't understand you' and you have to rewind and walk step by step through the conversation again to explain why you made a connection.

This morning he said 'I put' and stopped so I jumped in and said one sentence, and he laughed and then said 'the bags of rubbish from the garden into the van'. It was a step too far. (Dumpy sacks full of green waste - he drives a big van to work, recycling centre about a mile from his work)

He said what bags, (he was looking out of the window at them) I said not to worry (I knew he hadn't followed) - so he said he was confused, what bags.

I explained - I was referring to the bags of garden rubbish, into your van to take to the tip from work.

He looked at me and said 'have you asked me to do that'.

No, No babe I haven't.

'Good'.

It is difficult. I get it's not life changing, I can be patient or tolerant or use linear speech more, make less jokes. I am grateful he can drive and is functional and only stutters and slurs when he's tired.

But it would be lovely to know these things ARE because of his accident - somehow it would be easier to know there is a reason for his not damned well phoning for a week - and make myself doubt myself less. This morning he said he'd cleaned the ice of my car window when he started his van to defrost.

I asked him if he was being 'super thoughtful to make up for crap husbanding last week'.

'No, just had it in my hand so I did yours too'.

He absolutely says what's in his head now.

So I said 'you should be being thoughtful because I was very cross with you'.

He said 'ah'. Now I know he will TRY and be thoughtful, because I've pointed out that he should be.

Does that make any sense at all? Once I say it he knows that's 'right' - but he can't work it out by himself.

I'm carrying a lot of responsibility here.

If he is watching something on his computer, or on the tv - and I'm not doing it with him and he sees something he likes - he comes and finds me and demands I watch it.

Now I don't WANT to say in front of him to a doctor that is a problem - because he'll just stop doing it - this literality he's gained. He'll think it's a problem, I won't do it. But then he won't share ANYTHING.

But it IS annoying - I'll be watching a film, he's on youtube, and I'll have to pause it to watch a guy climbing a mast, or an advert with a cute baby, or a plane doing a flyby of someone on the ground.

Now I can do that, but it's easier to do that if you know it's because of an injury.

I get that he is in really good shape compared to loads of brain injured people - and I will love the new him as much as the old him - but the new him is different to the old him, and adjusting is difficult, and making me question myself - I don't know if it's the accident, or if he's just thoughtless.

I'd like to know I think - but then, I agree - he can't be helped, I have to live with it - it's a waste of resources really just finding out so I can know that his new stutter is a result of his accident, and he does care really he just says he missed me to carry logs because he did, so it'st he truth, and if nothing else he speaks the truth now.

Absolutely not! And you don't know what strategies might help if you don't know the exact nature of the problem. Good luck.

Eager_Elephant

((seanymph))

My husband is very similar to yours - but my husband did not have a brain injury as such, he had an eye infection (poss shingles) that was not treated and the virus has damaged his optic nerve and the nerves near his optic nerve.

My husband has neurological damage to his brain and he has changed a lot.

We see a neurologist (on our 2nd one) but there is not much they can do about the pain he has in his head.

There is also nothing they can do about him forgetting words, forgetting things I told him 2 seconds before - the consultant says it is his medication but I know it is not.

I know that Sun Addict (her husband had a tumour on the brain) and Please Let Me Be Lucky (her husband had a motorbike accident) are also going through very similar things. Their husbands do not recognise how ill they are either.
See if you can find their diaries - they are on DFW boards.

I am not sure how much rehabilitation will help as any rehab should be within 6 months of any injury to get best results.

My husband often forgets he is ill and gets frustrated but we are learning to adapt as a family. I now work full time and he will work part time (when he gets a job) as he cannot manage full time hours now.

Tahlullah

I really am struggling with the right words here. I cannot even begin to fathom what you are going through, what it must be like to suddenly find that the man you married is not the man you married. He looks the same, sounds the same, but there are differences. Subtle to those who know him casually, but blindingly obvious to you. It reminds me of the film 'the bodysnatchers'. Sorry, I do not mean to be rude or flippant, but it's the only comparison I can think of.

I hope that you find the strength to cope with the difficulties to come, the strain of having to make all of the decisions, of being the one who always has to be the carer rather than the cared for.

You already know that the changes are due to the brain injury, it's just that you need validation to feel the way you do, someone to say yes, it's ok to struggle as this is normal behaviour, normal for someone who has experienced a head trauma. It appears that the diagnosis is less for your husband and more for you, what you need.

Again, I wish you luck on your journey. If you ever decide to start an online diary, so you can chart the ups and downs of his progress and stages of development; and more importantly, to get support from the forum, I for one will read and offer support where and when I can.

Seanymph

Eager Elephant thank you for sharing your story - and Tahlulla you get it. You really get it.

He is still him, his family can't see it - he can talk about 'the old times' without missing a beat for an hour. So when we see them on a Sunday for dinner and they talk endlessly about who's dead and which house they lived in and what stupid thing his dad did on holiday that year - well, he's there, intact and with it every step of the way.

But I see it, and feel it, but then I doubt myself - and then I think it's nothing really, this slight slurring of words, and dropping of the right one, or checking with me what he's done.

Well, with the strength and support on here (thankyou) I asked him last night to visit the GP with me.

Needless to say he doesn't want to go.

He argued his 'fineness' - so I used someone's fulcrum argument, that I can see the change he can't feel. And as I hadn't had a bang on the head he would have to trust that I was doing it because I COULD see a change.

Then he told me that I'd said it may take over a year for his brain to 'settle down' and he was still 'settling'.

I said if during the year his brain was making changes, and some help would further his recovery then he'd need the help within the year - not afterwards once it had all stopped altering again - but now, when it meant he could recover further.

He's 'thinking about it'. Which is code for - I know generally you don't nag, so if I 'think about it' for long enough you will go away with this idea.

Not this time buster.

Without all of your support I wouldn't have asked him to go to the doctors - so thanks to every single post.

I understand that him being AWOL for seven days isn't a divorceable offence, but it wasn't the AWOL causing the problem - it was the unusualness of the AWOL.

*Is really keen for people not to think I am some sort of demanding high maintenance Beverly Hills Wife.

seashore22

Seanymph wrote: »

The no present was because he 'couldn't think what to get me' and thought he'd 'take me shopping at the weekend'.

He was very sorry, once he'd worked out that I found that unacceptable, arrived home from work with gifts and I think it's fair to say was an error he wouldn't be repeating.

It was lazy husbanding - but to me doesn't feel on this level.

He did wake me up, bearing tea, on my birthday, explain the no gift and offer the trip - he didn't expect the reaction he got though, he thought he was being reasonable, so perhaps this is in the same league. I don't know. I know no gifts hurt my feelings, but this just feels like I don't even figure in his life - or at least in his thought processes.

In our house that would be totally normal and acceptable behaviour and that's the problem with asking other people whether something is normal or not.


But my husband would have found another way to contact me if his phone had broken. That would be our normal.