Post Traumatic Amnesia

Hello, I wrote a previous post entitled "He's a fighter" about my father in law. He's suffering all the symptoms of PTA, but it doesn't appear that anyone has actually said that he has that... maybe it wasn't taken in. But either way, it's so hard watching the whole family trying to cope with him in his new "awake" state, one minute recognising people, the next not. Having to explain. Over and over where he is and what's happened . Watching the heartbreak in my fiances eyes as he tells how his dad is mouthing swear words at his mum (he still has the trache)

He tried to get naked yesterday , getting out of bed I. The night and becoming distressed when over stimulated and his wife is SO desperate to communicate with him and he's not responding very well. It's all so heart breaking. ) he's been "awake" by awake, I mean the first time he followed a command since last Saturday. it's now been 8 days which I know doesn't bode wel for the severity of the brain injury. It was hypoxia by the way due to a cardiac arrest. He was dead for 50 minutes (being worked on the whole time)

I have tried to ask my fiancé to ask the Drs if he does actually have PTA, because if that's what this is, then they would all know that this is not the version of him that they'll ultimately have. That most of this will pass. Everything else is going well, he can stand,sit, throw a ball, answer questions by nodding/shaking his head. He has never been a patient man and is becoming very fristrated with being stuck and not able to talk.

I want to tell them that if a dr can tell them this is PTA, which is a normal stage of recovery, that all of this will pass, that the sill he does have now can be built on. He's mouthing words which bodes well for when his trach comes out. But to also reassure then this is not the true "him" and most of the awful disturbing behaviours will go as soon as soon as he starts to retain info... any input would be great... feeling desperate here. No one is very open to asking the drs and its all very delicate . I just wish someone would confirm that for them.i want to make some of the pain stop for them all. Thank you all x

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  • This is the most awful time for families. It is very easy to say 'give it time', 'just wait a while' but that really is the only thing you can all do. The brain is wonderful and in many cases it can heal itself to some extent - but it has to rest and repair first. Your poor father in law cannot understand what is happening, he is bound to be frustrated and upset.

    Just try to be there for everyone, try to stay calm and maybe make notes of what you actually want to ask the doctors so you don't forget what you need to know.

    He is in the best place, he seems to be having the best of care. Just hang in there for a bit longer and see what improvement he is making, it may be very small but if you watch carefully, you should see things getting easier for him. Don't forget you can phone Headway whenever you want clarification about anything,

    Our thoughts are with you all. Just remember, we can't do anything practical to help but talking to others who have been there does make things easier to bear.

    Jan

  • Firstly Curly, 2 to 3 weeks is such a short time where the effects of brain injury is concerned. For several weeks after a brain haemorrhage my behaviour was bizarre (so I'm told).

    It's quite common for patients to be distressed and disorientated, and even aggressive for some time whilst the brain is compromised by injury.

    My family were shocked by things I said and did but the nursing staff assured them it was the norm in a high dependency neuro ward.

    Another example is my next door neighbour who had a heart attack a month ago. He's the most mild mannered man yet, owing to hypoxia, he was so confused that he was actually sectioned in order to keep him from escaping............SO out of character.

    It's a wait and see period that you're all having to endure right now my dear and it's such an anxious and uncertain time. But whatever label you put on your father-in-law's condition, you can be sure the nursing staff will have seen it many times before and won't be at all judgemental about it.

    Hang on Curly ; I hope that a few more weeks will make a big difference.............a really positive one .

    All best wishes, Cat xx

  • Hi Cat,

    Just re-read this, so you yourself went through PTA? Do you not have any memory of that time?

  • None whatsoever Curly. My ex-husband had a SAH 6 months later and was treated by the same staff. I was embarrassed to meet them all again when visiting, but I needn't have worried.

    Yes, they said, I'd been difficult and distressed, but no more so than any other disorientated patient they dealt with every day.

    I was a bit embarrassed when they called others saying 'Look who's here' then gathered round to tell me about my antics which they'd apparently found hilarious ! :x

    It's like they were discussing someone else and I felt bad that I didn't remember these lovely nurses who'd cared for me all those weeks.

    But it makes sense doesn't it Curly, that a damaged brain won't make memories ? xx

  • It does make sense. Goodness what an ordeal. I'm glad you didn't remember x

  • Just as in your situation, the ordeal was firmly on the shoulders of my loved ones.

    Even though I was apparently distressed (mostly from nicotine withdrawal !) all I remember was the slow realisation that I'd been very ill but was now recovering.

    I feel bad knowing what my family went through but, just like your father-in-law, had no sense of their anxiety at the time.

    Please keep us informed of any updates won't you Curly ? Thinking of you all. xx

  • I will. Thank you. Today he has been put on the bag rather than the breathing machine. He was very grumpy today but has only slept 2 hours in 2 days. There was talk of him having something to help him sleep tonight. Things are very tense with everyone and it's hard not to take it out on each other when we're tired. I've had to go back to work this week full time and we have 3 kids. One who's autistic. It's tough on everyone. The same day my father in law had his heart attack, his own father passed away of cancer. It's all a terrible shock on the family. Thank you for your thoughts and advice. It means a lot x

  • I hope you can stay strong m'dear ; you have so many challenges right now.

    I really will be thinking of you Curly.

    Love........xx

  • Thank you. Will update as things move along. Patience is not something any of us are good at. :)

  • Hi curlycuz

    In danger of putting both feet in it again but perhaps it would be best if you rang headway while your fiance was with you so that they could speak with him directly.

    While your concern is perfectly natural there is so much going on in everyone's heads that it may be seen as interfering by you.

    You simply cannot take their pain away. The best and only thing you can do is to be there for them...to listen, hug, give cups of tea and generally be their rock.

    Love n hugs

    Xoxo

  • Thank you! At the moment, I have been asked to store all I find in a file for when my fiancé wants to read it. He does not right now which I understand. I just hear the distressing behaviour daily and can't help but hope and wish that someone medical would come and say "hey guys, right now, he has PTA, this is normal and not the final result and most of this distressing behaviour will pass. Because rift now they're all looking at it like they're going to have to deal wit this version forever and it's very disheartening . I think I'll leave it for now as I do t want to push anyone. It was an e mail FROM headway where PTA was suggested to me. I'd never heard of it, I read it and it made SO much sense and everything they describe, he's doing... anyway, maybe I'll just come here to seek advice for myself. Thank you all for responding. I just believe so much that he is still there and so much more of him will come back. Still v early like you all day! Thanks again x

  • Brain injurys seem to be difficult to, predict outcomes from, which goes some way to explain doctors reluctance.

    This said it is very early days even as a high functioning I was though out of PTA at that point still really, odd in many ways!

    Emotional support is vitaly important, one of the cleverest moves my wife made was to ring her sister so she could help her, be that fielding worried friends ringing my phone or just being there.

  • Hi like cat and others have said 'it's very early days many on here have suffered this on one side or the other, so your not alone I was at my worst the first two month I really didn't care who I hurt mentally or physically I have learnt to control both i still have the ocasinal outburst in stressful situations but it was to late for me, stick with him he does not mean what he says but you must ring headway and get support this can rip family and friends apart.

    Luv and hugs

    Lew-ann

  • Have a look at this book and the website by Dr Diane.

    Coping with Mild Traumatic Brain Injury, by Diane Roberts Stoler. This manual explains the diagnosis, treatment, and rehabilitation of brain-injured people and offers practical suggestions for coping with physical and emotional consequences of brain injuries.

    If and when he can eat properly, try Tina M Sullivan, Nourish Your Noggin. She is a nutritionist and Dr Diane treat her son. She wrote the cookbook to use Dr Diane's diet tips for those with brain injuries. The recipes are very nice. While you wait for your copy to arrive, you could try things like healthy smoothies with almond or coconut milk, green juices using fresh ginger, kale, cucumber, pear and lemon. Add raw organic coconut oil to the smoothies (also use it to cook with). It contains lauric acid which aids brain healing.

    The healthy brain food also consists of avocado and free range egg. Dark chocolate with high cocoa content is also on the menu. How about some hot drinking chocolate with a bit of coconut oil and a little tumeric powder? (Tumeric features in the recipes and is one of the main spices used in Indian cooking).

    I'm sure you can think of ways to spoil him with nice foods.

  • Thank you so much Jayne, I'ma big fan of healthy organic, clean style eating. It might be something the rest of the family have to agree on as I don't often cook for them. I will happily make things to take over. I imagine they will be advised to revise his diet when he starts eating again anyway because the heart attack was caused by completely blocked artery...

  • Curlycuz

    If you are looking for something hopeful you could look at miracleman 's introduction .

    I know that every injury is different but it just might help.

    Love n hugs

    Xoxo

  • Thank you. He is indeed a miracle . The body is an amazing thing. I just really hope he'll come out of this and come back to the family. We all miss him very much. The kids don't understand and want to visit him. Very tough. X

  • Update: Hi all, I thought I'd give you guys a little update; so my father in law is progressing a lot faster than we thought he would physically. Yesterday he took a walk to the reception desk (with help) and back again which is wonderful news. He has also had a valve put into his trach pipe so he can talk! A lot of the time he's confused. For example he's asking my sister in law to go get the car so they can go. Still getting pretty annoyed because he can't (who wouldn't) and having some hallucinations . The nurses have told the family that this is normal as it's his brain trying to "fire up again". Yesterday for the first time he recognised his grandchildren. (Our three kids) and called them by name. He has yet to ask about his father (he sadly died the same day my FIL was rushing to be with him) and were not mentioning it as it seems to upset him.

    Actually, I am under the impression that at the moment he's only recalling people if promoted (photo book) not taking away from the amazing situation that's occurring just want to make sure there's no confusion here. He also had a few sips of water and loved it. He tried some jelly and apparently was disgusted by it 😊

    He is complaining that his hips hurt (he was due for hip replacement before he had his HA.he is still on the cardio ward , but there's talk of him being moved to a neuro rehab Center in north London in the next week or two depending on his progress. He also is using just the breathing bag now so no more breathing machine. It's still very much one day at a time and for a lot of the day he zones out and comes back periodically. He watched a film on my mother in laws ipad yesterday and seemed to enjoy it, I am surprised that they're allowing this as a few days ago they told us not too much conversation or over stimulation because it stresses him out and he gets angry... not sure if that's changed now. Anyway,its day 22 and I feel he has progressed beyond what anyone ever expected and is nothing short of a miracle after being technically dead for 50 minutes. I appreciate all your support so much. Love to hear more stories if anyone wants to share ! Lots of love x

  • Excellent news!

    I had a TBA in July 2005. I am told that I was taken home for a couple of brief visits, but I don't remember them. I went home overnight at Christmas, which I *do* remember, but then I went back into hospital for a couple more months (going home at weekends).

    In the few months before Christmas that year, I asked (repeatedly) why my husband kept bringing in a baby, along with our toddler. He *kept* telling me that she was ours, but I kept forgetting. She is now at secondary school, but I still don't remember her being a tiny baby (or breast-feeding her, which I couldn't do with our first; or us moving home so that we had space for her, or ...). A year and a half of my memories are permanently gone, but my day-to-day memory is absolutely fine, now, and my long-term memory - I eventually went back to work, as a university lecturer.

    So, it can take ages to recover, but it can happen - don't give up.

    I hope he continues recovering well.

  • Thank you so much! You're amazing and I'm so glad you're "back" . How do you feel about the life you had before? Do you feel the same or like a different person? X

  • Well, sometimes, I feel a 'failure', as I am so much more 'rubbish' than I was before (I am 'blind', my handwriting is horribly messy, I have bad balance, I am not allowed to do a lot of the research that I used to do, my voice sounds silly... although apparently it sounds OK to everyone else, but it sounds very silly to me).

    But other times, I feel like a great success: I have done so much, to have recovered from my brain injury is really great - a lot of it is just down to luck, but I know that a lot is due to determination: I think: "I *will* do this, I *can*...". I have run the London marathon twice, for Headway. Well, I have got round it, I didn't manage to run all of it. But hey, I am 'blind' and disabled so, however bad my times were (and they were *very* bad!), I can still be proud of myself. I WILL NOT give up. :-)

    It sounds like your FiL is heading in the right direction. It might take a while, but don't give up on him.

  • You are amazing! Wow, I wouldn't even attempt a marathon! And es you're right, your body and spirit have recovered one of the most traumatic events ever. I know your family most be SO grateful to have you still, to have you able to speak like you do, write at this level and be "here". From the recent experience I can say there's nothing more heartbreaking than having someone you love so much "right there" able to touch them and speak to them but have them not respond back. You know, almost 5 years ago we lost my father, suddenly out of nowhere, until then I thought that was the worst day of my life... I thought death was the most awful and saddest thing to ever happen. I realise now that it's not. I am so grateful for my father in laws progress when I see so many still willing their loved ones back into consciousness. Hang In there together 💞

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