Hi my partner sustained a cardiac arrest and is 4 months gone mid 40's . He still hasn't got any cognitive skills he's in a hospital ward still . Very basic sleep wake cycles . Limbs moving slowly , scratches head or nose or tries to pull out wires . Facial annoyance at noise especially machines alarms going off! I do play music and tv programmes to him . He just rubs his ears as if it's too loud a noise .
He Looks around but doesn't follow command? Worried he will be trapped like this with no progress to being able to spk. He grunts and sighs a lot . Tries to move his limbs as if he's trying to sit up . But fails as muscle distrophy .
Anyone had a brain injury who can give me their perspective on what goes on in the mind of the injured? I know he can hear but I'm worried he's in pain or can't communicate his feelings . Does he know what's happened to him? What's it like being the one on the bed looking out? How long did it take you to understand a command to actually reply back a yes or no? Anyone who looked after their partner? Perhaps you can give me hope on to hanging on in there. Each day I sit and wait for that murmur or a squeeze of his hand in response. It's like I've lost an adult Gained a newborn .
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Lemon-trees
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In some ways that’s what has happened. His brain has been damaged and the neural pathways disrupted. Some of those neural pathways can be reconnected and some unfortunately will not. Your partners brain will have to relearn those, but your partner will have to be able to help that happen.
So, that is why you will see the baby/ child like responses.
I did not have a cardiac arrest, I had encephalitis which caused my brain injury, I can tell you my experiences.
I was in a coma for 3 weeks showing no signs of recovery at all, in fact my husband was asked to put DNR on my notes as my brain activity was so low that they were concerned my organs would fail or I would go into cardiac arrest and they knew my chances of a good outcome from that would be very low, they warned him that if I should survive I would likely be in a permanent vegetative state.
During this coma-time, I would rise and fall in consciousness sometimes being aware of there being people around me and hearing snatches of conversation. I was aware of my children reading to me and find I cannot listen to my iPod now as the tunes distress me.
I did notrespond to the squeeze my hand request but my family proved I was “in there” by asking me to move my tongue on command which I did, this then prompted more effort from the nurses and doctors.
I am unsure of the timescale, but I was in ICU /HDU for around a month, I was then moved out onto the general ward, they never found room for me on a neuro ward and then when a bed became available for me at the local rehab unit I was moved there.
Everyone’s brain injury and recovery is different because the brain is so complex and is wired differently, but to get as good an outcome as possible, you have to encourage the patient to relearn how they did as a child. Repetition and practice is key, just as a child does, it is the best way to lay down new pathways in the brain. Learning to walk again as an adult is so difficult and the muscle atrophy you get when lying in a bed for weeks doesn’t help. Physiotherapist is crucial.
But the best you can do now is stimulate your partner’s brain by not only playing music but reading and talking to him, include him in conversations, ask him his opinion then if he is aware that will encourage him to try to respond.
I could go on for an interminable length of time with this, but I will stop now, if you require any more information just ask I am happy to share any knowledge I can as there really is not enough information out there from survivors. Don’t berate the medical profession for not giving hope, they really do have to prepare families for the worst, but throw yourself into stimulating your partners brain as much as possible. My family did it for me, they never gave up hope and I am eternally grateful.
I've no recollection of my brain haemorrhage 7 years ago, nor can I remember the following month. But I'm told I was extremely agitated, mainly due to nicotine withdrawal and pain ; apparently my son gave me hand massages which calmed and pacified me.
Your partner's plight must be dreadfully upsetting for you ; I know I was deeply saddened hearing about the dark places my family had inhabited for 2 months. But I heard later that agitation, even aggression, is commonplace after any brain injury as the brain struggles to find new pathways, and surroundings are unfamiliar.
I found the presence of a daily visitor (therapist) who came with reassurances a couple of times each day to reinforce who and where I was and why. He always asked me to repeat these details and his name ; it was the beginning of awareness for me and very comforting.
I hope your man is receiving physical therapy of some sort ; if not you might want to ask what's available as massaging limbs and joints can be physically & mentally therapeutic.
Sending all best wishes for a breakthrough, if only in speech to begin with, before too much longer. With love (and a big hug) Cat x
Hi Lemon trees.My husband(who was very fit)suffered a cardiac arrest 2years ago this week,resulting in a hypoxic brain injury.He was in a coma for 3 weeks.When he first started coming round he just waved his arms and legs round.No eye tracking or response.We were told he would probably not recover as scans showed no activity in his brain.He was moved to a respiratory ward once awake.He was peg feed and had a traceostomy.We thought that was what he was going to be like but when he eventually got a place in the rehab ward he improved.Slowly at first.I played him music and talked to him.He was in a wheelchair to start off but eventually learnt how to walk again.5months on he returned home.We never thought he would reach that stage.Roll on 2years and he looks normal(he isn't the same man I married)but he's still with me and speech getting better.Good luck.(My husband has no recollection of his accident or anything from before.He thought he had always lived in hospital)Everyone is different and it's not easy but just be there for him.xx
HI Lemon-trees. I had a stroke 'mimic' in Feb 2016 and am as totally recovered as I think its ever going to get. I never lost consciousness and because of that I was discharged from hospital after a few weeks and never went through that 'coming round' thing. It did take me a good 7 months to regain skills such as walking though. Also my speech was slurred at the beginning and I had trouble moving the left side of my body (arm, leg etc)). Fortunately I was referred to a local community rehab team and they were a godsend. They visited 3 times a week and taught me loads of exercises and things to improve myself. I did these almost religiously and retained positivity about my recovery. I hated being 'poorly' but also strangely didn't recognise my own symptoms. I felt completely normal except for physically being unable to do things. I really hope your partner will make a quick recovery. But in the meantime just be there for him and try to be calm and patient and not rush him.
My husband had an Hypoxic head injury pretty much the same as your husband.
Now six months after he is home but with very poor short term memory.
His only memory of the hospital period is starting pretty late into rehab.
It is a long job to get on the road to recovery and I saw my job as providing lots of chat and puzzles, books pictures etc. It is a hard job as it is pretty heartbreaking but stay with it and enlist support for yourself from family friends etc.
If it gets too much have a break and recharge the batterys.
Thank you all for replying . It's very much appreciated. And it gives me an insight from the other perspective .Today we had a proper arm stretch as if he's lying on a beach arms up behind his ears. He also moved his whole body as if he's turning in his sleep. I'm hoping it's his body waking up . I did some food tasting with him today and he made awful faces with a pinch of salt . He can't swallow yet but does taste at the tip of his tongue. He's also learnt to grip his mouth shut now as if he's expecting a uninvited poke about. He's also getting irritated by wetting himself so I do hope this the him becoming aware ?
Sounds promising Lemon-trees. And the swallowing is commonplace after brain injury, except for me it was the other way round ; I couldn't stop swallowing so eating had to be supervised in case I choked with involuntary reflex. It takes time to re-learn the simplest actions.
Oh, and I'd all but forgotten the waterworks issue. My first awareness was a feeling of acceptance that it must be normal but, as I became more compass mentis, the embarrassment kicked in and the determination to get moving so I could get control of it and make it to the loo (managed to lower the safety rail and get my feet on the floor, then legs collapsed like a newborn calf ! )
There'll (hopefully) be lots of trial & error, frustration & maybe a few swear words ; I really hope so m'dear as it's all part of progress.
Sounds like you're doing a great job. Keep the updates coming, but please make time for good nourishment and a bit of self-pampering to keep yourself strong in mind & body ! Love Cat x
Did you get annoyed at all? When your family played music or spoke to awaken you out of your coma? And how long was your vs to MCS ? At the moment it's MCS and I'm wondering how long to expect before the next turning point ? He's going to rehab in next few weeks . Will the physical excercise hasten the recovery to the brain? He is flaying on the bed and is getting really fed up of lying . His legs have dangled on the floor and many Times I see his facial expression in anger mode as if he's fed up of us not helping him. We adjust him but he slips down the bed or wiggles about .
Don't think I was ever in VS ; just unconscious from the bleed and totally unaware of everything around me for several weeks. Didn't recognise my family (upsetting for them) and only remember a therapist who visited me several time daily to instil information such as his name, my condition and whereabouts. It was a month before I stopped thanking a neighbour for visiting (apparently) who turned out to be my daughter.
But, as I learned after discharge, I'd been very angry and frustrated about the drips and feeds in my neck and after haemorrhaging quite badly from pulling them out I had my hands bandaged which I constantly undid with my teeth. My daughter, already disturbed by my odd behaviour, said she didn't know whether to laugh or cry seeing me with what looked like 'white footballs' on my hands for the first time. ( A matter of 'Oh God, what's she done now ?'). She and my son used to hold my hands to stop me misbehaving then re-bandage me on leaving !
I could go on...……. but it was heartbreaking hearing later what bizarre behaviour they'd had to witness day after day. So I really do feel for people like yourself living through a similar episode. My family thought I was lost to them so it took many months 'debriefing' afterwards, and I was blown away by stories of my behaviour.
I guess your man's progress will be slow, but try not to look too far forward m'love ; it's by looking back that you'll measure how far he's come.
Your behaviours sound so similar to my mans. Hand boxing gloves we call them ! The glares we get and arm swings! I do occasionally burst out in laughter as the expressions are so funny! Thanks for your detailed reply X
Thank you for this information and I will try to think about it more. And you can find something interesting in cherrypiestrain.com and I will explain why. You should to see the whole picture and work with a real problem. And for this, you can try to get better with your brain.
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