Hi. Looking through your posts it looks like most are related to TBI. But I wondered if anyone had any experience of hypoxic brain injury. My sister had a cardiac arrest and now has hypoxic brain injury. Initially we were told that she had considerable brain damage and did we want to turn the ventilator off. We said no and we needed to give her chance. Gradually she has improved and is awake now, sits in a wheelchair and is talking. All sounds promising however what I find so difficult is there is no engagement, she is in her own little world. Which I don't think is a nice place. She talks constantly but we can understand very little of it. She calls for mum constantly, and repeats the same phrases like ask the way, I can't do it, I see. She gets so upset talking that she cries. But if we try and engage there is nothing. She is just in her own world with what are obviously upsetting thoughts. It is heart breaking seeing her getting so upset and not being able to do anything to help her. The staff on the ward are quite optimistic because how much she has come on but I just find how she is at the moment so difficult. Has anyone else had any experiences like this? How did you help them and how did you cope? Thank you in anticipation.

20 Replies

  • I think this is one of the problems with the way in this country we focus on the cause of problems, rather than the effects that it has on the person, I had a subarachnoid hemorrhage (SAH) just over 2 years ago, but after discharge from hospital, we have found it very difficult to get good home support, there is reasonable 'Stroke' support in our rural area, but as I don't have a diagnosis of a stroke it is difficult to access these resources.

    The differences between a stroke and a SAH in terms of the effect on the person are very small, in medical terms a hemorrhage stroke is a bleed from a blood vessel in the brain itself, the SAH is a bleed on the surface of the brain, but the effects are very similar. Our local health authority is currently reviewing neurological provision, and we have raised this issue with them, the practitioners are supportive of change, but the management seems to be resisting.

    I think what I am saying is that yes a lot of the focus on the forum is from people with TBI's but that the suggestions and support is still very valuable irrespective of the cause of the brain injury.

    One of the most important thing that we were told in the early days after the SAH, was that it is often 2 years before you would know what the long term effects will be, so although you don't say when your sister had the hypoxic episode, I suspect that it is probably early days in her recovery


  • Thanks for your reply. I fully appreciate what you are saying about being specific. However I am aware that there are differences as well as similarities to how people recover between a TBI and hypoxic. So sometimes it helps to distinguish. As I know there are people on here who have had experience of all types of brain injury so wanted some advice from anyone with a similar experience including stroke etc as they can all experience these kind of symptoms. I also appreciate that everyone's recovery is individual but just needed to hear some people's experience of this.

  • Hi pinkmum

    That is so sad for all of you. Obviously I can't be sure but just wondering if your sister's memory is affected she may not r'mber how upset she was, in other words worse for you than her?

    It is very difficult to know what the future holds, but just a couple of suggestions to help engage with your sister. Family photos, gentle touch, some times some senses work better than others, singing/music in a soft voice, (be aware of noise sensitivity tho) and a a cuddly toy. Some of these you may have already tried, and obviously you need to read your sisters reaction in case she doesn't like something you are attempting.

    Good luck and best wishes to you all

    Ps not hypoxic BI myself, ABI, general advice from working with people with mental health difficulties/dementia

  • Thanks for your thoughts. I know it will probably be just time which will help. I agree I don't think she will remember although I am sure it must be upsetting to her at the time as I think whatever it is is real to her at that moment. We have tried those things you've said. I took her a walk outside in her wheelchair yesterday and that calmed her for a short while. I just hope this is a passing phase and she will improve. It would be heartbreaking to think she would stay like this.

  • Hi Pinkmum- I posted this to you on wrong thread- so here-

    My husband had a cardiac arrest aged 37, three years ago. Although I gave cpr immediately- we were out running at the time- he had no heart beat for 29 minutes which caused his hypoxic brain injury. He has been left with spasticty, weakness in his left side, slurred speech. The hardest thing though is the behavioural change. He didn't get seen by a neurological psychologist for 12 months so wasn't diagnosed with executive dysfunction till then. He thinks differently, acts differently, has apathy, no motivation or problem solving skills. 10% of the time he's 'old' D, the rest of the time he's the new version. Headway are an amazing support.

    I am caring for him as well as trying to hold down a very demanding job.

    Initially- post coma, he was almost paralysed and it took 3 months to get him walking. I was also given the option to 'turn him off' as he was suspected to be vegetative.

    His speech was non existent or slurred and words were hard to think of. He was able to use a light writer.

    It is awful, but once I accepted it was a marathon not a sprint I was able to cope a bit better.

    It's so hard but 10 weeks is such early days for brain injury. I kept a diary to show D WHEN he got better. At 10 weeks he was only just out of ICU, not walking, or talking and sleeping for 14 hours a day.

    Just being there will help her by the way- and I promise you she will not remember much of this time either. I would go and just read to D from his music mags. Or take him for a walk and keep explaining what had happened. The distress could be because she cannot communicate or understand situation. Her short term memory is likely affected so keep reminding?

    Can she write?

    It's soooo hard- I'd be all perky all day then cry for 2 hours when I left the hospital. He was 'inside' for 8 months- I swear he cannot remember most of it!

    You aren't alone x

  • Thank you for your reply. It is good to hear from people further down the journey. No she can't write. She just rubs her head and face constantly with her arms. In fact she has done it so much she has made her nose really sore. I just don't feel she knows if we are they yet or not. It's really hard to tell. I know we have a long way to go yet.

  • Can you tell us how long ago your sister had the cardiac arrest ? x

  • 10 weeks ago.

  • We all know the expression 'Time is a great healer' but where any type of brain injury is concerned, after surgery/treatment, time is the primary healer.

    You might opt for intensive rehabilitation for your sister and there is every chance of significant improvement, but it is the passage of time which allows the healing to take place and that is a slow, invisible process which at the 10 week point, is still in the very early stages.

    It can be a long and demanding wait for progress, but in so many cases, well worth the wait. x

  • I had a very serous hypoxic brain injury, subarachnoid hemorrhage, and a bit of anoxia 20 years ago. I think her short memory is currently, in a state where she is forgetting almost everything, except, what is almost instantly occurring. In order to speak, and function a person needs to remember what they have said, and what has been said to them. She is probably saying I can't do it, and I see, because those phrases don't need a whole lot of future or past memory, but explain her situation fairly well. When she says 'I see,' she probably means I only 'currently' understand what has been told to me. When she says, 'I can't do it,' that is probably fairly self explanatory. Is she able to write? I'm asking, because if she can, then she can take her time getting her thoughts out. She can also then reread them, so that she will know, what she has already said. After my injury, I was completely unable to speak, and was only able to communicate by using paper. Still as messy as my handwriting was at the time, I did appreciated the ability to communicate my thought. For a while I used to only write the same phrases, but seeing what I wrote, helped my communication.

  • Thank you. It is good to see that you have made a good recovery. Thank you for your thoughts. At the moment she is not able to write but they might come so useful to think about.

  • Hi gr33nmind! I found it helpful to read your reply to Pinkmum. May I ask you more about the short term memory issue as you've mentioned it? I take it that in your experience this was somehow that was a problem initially but gradually improved. Could you maybe share a bit more about what you know about this? My Dad suffered his hypoxic brain injury at the end of September ie 8-9 weeks ago. His long term memory seems ok but he seems to remember nothing or scarcely anything from one day to the next or even from morning till afternoon. In fact his short term memory might even be shorter than that, we haven't gone about trying to test it yet. It might not be better than even a few minutes for all I know. Obviously we're hoping it's going to improve!

  • I had hypothermia for 6 hours, and my heart was in cardiac arrest for about a half an hour. I had life saving measures performed on me throughout the entire process, so my injury was hypoxic, and not anoxic. I remember one test my cognitive therapist gave me in the rehab. Months of the year were read, in an audio recording, and I had to hit a buzzer every time I heard a month that just preceded another month. For instance, I had to hit the buzzer when I heard January, December, and not January, November, January, February. I did absolutely abysmal on that test, and the months would not stop coming. I remember my therapist saying after the last time, she gave me that test, that my memory and other cognitive abilities would 'never' improve. I took that as being a mean spirited challenge, rather then then her honest opinion. It may have been, but I defied her assessment. Honestly, I am unable to remember, what tests she gave that showed that my memory would never improve, but I'm sure there were some. The tests, I can recall dealt my auditory ability, and they always been a lot stronger then my visual since my injury, so maybe thats why I recall those. Today, although my memory is greatly improved, and is one of my stronger cognitive abilities, along wt speed & flexibility (the ability to concentrate on more then one thing at a time), I still forget things. Like today, I forgot my wallet, when I went to PT. I will forget things, usually because I have attention problems. Like just before we left, my worker asked me if I had everything. I felt my back pocket, felt a comb, and just assumed that my wallet was in my other pocket. Still over the years I have figured out that memory is basically, a problem solving ability. Like if your trying to remember someones name, who has a beard, scan your mind for other people you know wt a beard that you know wt the same first name. Some people can remember w/o doing that, or they do this subconsciously. I know that I am useally unable remember faces, and directions, and appointments, w/o using repetition and tricks, but they do work.

  • Thank you that's really helpful and encouraging!

  • Hi has she got aphasia of some type? If so the upset could be due to her knowing what she wants to say and not being able to say it? Also as it's only ten weeks on it could generally be the overwhelming experience she has been through.

    Can she read or write?

    It will be more upsetting for you because you will recall how she was and see how she is now, the staff may not appreciate that and will focus more in progress.

    Hypoxia can cause brain damage in multiple areas and it can take a while to know for sure where the damage is.

    All you can so I feel is just be with her. It will be worth knowing if she has aphasia or if the nurses etc suspect it as if so this may affect how to communicate with her. Also may b worth contacting your local headway for support for you, even if it's just a place to offload? Do you know your local branch at all?

    Take care


  • Hi. Thanks for your reply. All these comments are a help. No I don't know about our local group. We live in lincoln but my sister is in hospital at Leicester.

  • The headway leichester no is 0116 273 9763

    The one in Lincoln is 07546592526

    Hope this helps

  • Hi Pinkmum. That sounds so distressing for you. My dad suffered an hypoxic brain injury following a cardiac arrest in the last week of September. I recognise a lot of the things you are talking about although luckily for us Dad is responding to us again now. It happened one afternoon when just that morning I had been feeling such grief and despair. All the same the way I have been trying to approach this is to stay as positive as I can. I remind myself that it is early days, and think to myself that we all have to believe in a good recovery so we can give Dad the hope and courage he needs. I can squeeze his hand and stroke his arm. I can talk to him and reassure him constantly in a calm, clear voice that he's in a good, safe hospital with lots of good, kind doctors and nurses looking after him and that he WILL get better. When he wasn't responding we learned to go on our visits prepared with things to read out loud to him or talk to him about, or some of his favourite music to play to him, so we could keep going through the visit without getting too disheartened. I thought to myself that his injured brain could feel my touch and hear my voice as it worked away trying to heal itself and piece itself back together. Maybe think to yourself that she has to go deep within herself for a while in order to heal - but on some level she is aware that you are there with her and is getting some comfort from that. I'm so sorry this has happened to your family too. But I think don't despair, remind yourself that you are trying your hardest and even though you can't see signs of it yet you ARE helping her.

  • Thank you. Xx

  • Hi

    My Husband had a cardiac arrest in June , was down for 40 minutes and now has a hypoxic brain injury.

    It is an incredibly traumatic experience as there never seems to be any clear answers , but I agree with the other forum members replies , with regards your feelings will be much worse than what your sister is experiencing.

    Initially the consultants were very negative about my husbands recovery , but everyday, however small, there has been something to hold onto. And you have to hold on to that.

    I also keep a photo/video and audio diary which has been amazingly helpful , particular on those days where you feel a little bit stuck and there has been no progress.

    Know that you are not on your own and to take each day at a time.

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