Brain making up it's own reality post TBI? - Headway

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Brain making up it's own reality post TBI?

Purplelover25
Purplelover25

Hi,

Partner is 6 months in following TBI. Can't seem to find my answer on Google or here... but does anyone have experience where TBI survivor absolutely believes you've said something but you definitely haven't?

There have been a few occasions since him being home where he says that myself or 4 year old daughter have said something which we haven't, but just lately he has become fixated with things he believes I've said or done. Getting frustrated and angry that i won't agree or admit I've said these things. For instance, he believes I've told him he's not the father to our children. Absolutely not the case at all. He says he doesn't have any doubts he is their father either.

Whilst I can sympathise that it must be torture for him believing these things, it is also becoming torturous being on the other end of the accusations and trying to shield the kids. We are having joint counselling and will bring this up, but it's not for another week yet

16 Replies

I've literally just re-typed my question into Google it has popped up - it's called confabulation!

Now the difficult task of presenting it to him, as he doesn't believe / in denial that there is even a brain injury...

Lynd
Lynd in reply to Purplelover25

My Husband was convinced his parents and brother were visting him even though they are sadly long ago passed away. When he came home he called me a liar for telling him they were dead.

Eventually I broke the cycle by showing him paperwork to do with their death.

When he was in hospital he was so convincing I half wondered if they had been visting from another existence.

It is tough to deal with. No easy answers. What hurt me was I was dedicating my life to his every need yet he so easily turned on me and called me a liar but you do have to put sentiment aside as it is all part of the brain injury and as in my Husband's case the confabulation did eventually go.

Be as strong as you can. Lots of things improve over time.

Purplelover25
Purplelover25 in reply to Lynd

That was a worry that my partner would have forgotten his mother had passed away a year before. I couldn't imagine having to break the news to him about that :(

Definitely is hard to be accused of not being there to support them or not visiting him at all whilst in hospital, but as you say, have to put it aside. I just have to keep reminding myself the man I fell in love with wouldn't believe these things

WinB
WinB in reply to Purplelover25

I forgot my Dad died in 1999 and when I realised I cried and said Goodbye again to him. I was saying to my Sisters "Tell Dad I'll be up to see him when better so first place my Daughter took me was Cemetery..Spoke to Dad and said every day I'm getting better Dad...Also saw him when out of it and he said "I cannot talk to you your Mum will kill me" Funny how you see people who have passed lol not that they were allowed to talk to me. I was never in a place where I was at my Happiest Dream maybe ??

My partner spent all his time in hospital confabulating! The things he was convinced about were utterly ridiculous including where we were - he was in a different country every time he was asked. Now, 18 months, on I think he still believes some daft stuff but can largely control voicing it. In hospital, we were told to orientate him - eg tell him we weren’t in Holland / Outer Mongolia - until he got cross. Now I “correct” him sensitively (except when I’m tired and fed up).

Other examples now when we argue about whether I’ve said something etc are down to tiredness and the resulting confusion.

Hi

My husband had confabulations too. The psychologist explained that the brain is searching for the answer to a question/thought and due to the brain damage it can’t find the answer so the brain makes up something in it place that they then believe to be true. Husband coming up to 11 months now and not as bad and can sometimes see some logic when explained to him but for the first 9 months it was terrible. Loads of things, he told me that his sisters dog had died, when hadn’t. Thought he was in the SAS/IRA, lived in Thailand, I had calls in the night from Rehab saying to get the papers he had been asulted my Noel Fielding? He thinks he had always had an aneurysm and we all knew always knew about it, i tried to explain that his family and I would have known and he would have been monitored if we had known but even now still thinks this.

I was very scary and so hard trying to explain things to him, me and the children were/are shouted at a lot and told we were lying to him.

I hope this phase eases soon.

That all sounds very familiar. My partner thought he had been shot by a foreign government whilst wearing a Roger Moore mask and after all that I had lost the books he was protecting!

I sort of wish his confabulations were more on the quirky side rather than anger. But I've learnt be careful what you wish for!

We got the darker ones too - he accused me of being unfaithful, selling the house etc etc. But 18 months on it is all much better.

WinB
WinB in reply to Paddington18

When in hospital I told my Daughter I'll pay for this, thought we was in a cafe it was dinner time up the hospital she told me. "Pass my bag Daughter" Mum your bag isn't here, don't muck around Daughter get my bag up my treat" she told me all the funny thing I said xxxx

Not had experience of this so not sure this idea will help or not.

You could try talking with him about this and explain you want to help him know what is real and what’s not. To do this suggest you both or you if he’s not able to write down things that have been said so he can later look back on what’s been wrote and if it’s been written down it was real if it hasn’t been written it didn’t happen or wasn’t said. Now this may or may not work as he may not believe what is or isn’t written down and there will be things that you don’t think to write down, but it’s something you could try.

Thank you for the idea, will suggest it

Yes - 30 years on my husband still does this. It’s jut always about things that have been said, it’s often about events that he describes that are nothing like what really happened. This can be difficult as I don't always know what he’s told people.

Hi, I think the idea of writing things down to look at in times of confusion /confabulation is good.

I was very poorly in 2014 and got my children to take the car away and hide the bath plug in case I got confused about what I was allowed to do or not.

"luckily" I live alone so fewer chances for upset... Though I had plenty of those too.

Please ensure that your counsellor is headway trained as you may otherwise be facing more problems. Many don't know the difficulties of confabulation. Now may not be the time for couples counselling unless they are definitely headway.....

Good luck

I read a scientific paper (which I can’t find now of course) that experimented on people with unprovoked confabulation and rather than compensating for missing memories it seemed to be caused more by a messed up ability to categorise memories in a timeline.

My husband is only 2 months post injury but the confabulation was definitely the most distressing symptom to me. I drew out a timeline on a long piece of paper and marked out every major event from the past 2-3 years. Holidays, weddings, the birth of our child etc. As he asked about things we added to this and stuck it on the wall. I don’t know why but this caused a big reduction in confabulation and he loves looking at the timeline. I think it’s another way he can self-orientate.

Dear Purplelover25,

I have Vasculitis, that has caused, a Large amount of Brain Damage. Apparently when I first became, how can I put this, 'Responsive'/ able to 'Respond' Tony Blair had just been elected PM. I was Convinced that Margaret Thatcher was still Prime Minister. I'm told, that it took, quite some time, for me, to realise my error. I also believed that I was in Scotland, having travelled there by Train. (I was, so I'm told, making 'Train Noises' using the 'Overbed' table.....I bet 'everyone' Loved me!) I don't recall Confusing the Living, and the Dead, though.

I had, some years later, a Whole Series Of Tests- over some weeks/ months- to asses my Memory/ Brain Function. There were some Interesting Results. I'm due a 'Follow Up', quite soon, it being over Fifteen Years-since the last ones were carried out.

One lady who came to 'our' Headway, I don't think I personally knew her, Came out of a Coma believing.....She was a Teenager, that she didn't have Children (she had two) and had no Recollection of her Marriage! I believe, in the end, the Lady 'accepted' her Family, even though, she did NOT Recall them. There is also, often from the Non Brain Damaged person(s) point of view, a type of Bereavement for the Person, that They Lost. She has Never 'Said' it but, I know, that My Own Mother 'Misses' the Old Me....Funnily enough, so do I! However I won't Dwell on that, It's what you have Now that's important.

What You have is a, somewhat confused Husband', who is unsure/ unclear about what Is 'reality'...What might have been a Dream...What he might have 'Imagined'...He is having, a LOT of difficulty, in trying to Organise his thoughts- let alone 'sort' Fact from Fiction. What he Needs is, Love, Support, Caring and TIME. TIME, to Sort himself out, TIME, to Take stock, TIME, to find that he Loves you! Brain Injury 'Recovery' is a SLOW process and you will need a LOT of Patience. Please Don't 'scream', at him, 'How Many More Times, Have I, Got To Tell You.....' Sorry but Time, and Patience, really is the 'Key' Purplelover.

I'm afraid, that there, are no real 'Answers' that I can give/ offer you. Except maybe this, again from a Lady whose Husband attended Headway. She described how her 'Overcoat' became Damaged but with Love, Care and Time...In the 'Pockets', were all the Love, and Memories, from their Life together.

I am sending, you BOTH, My Love as I'm sure All of us do.

AndrewT

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