My husband has suffered a hypoxic brain injury following a heart attack, I did CPR for 15 minutes till the ambulance arrived and then they worked on him for a further 25 minutes. He was in ICU for 3 weeks but is now on a regular ward and is breathing unaided, he can talk but isn't making any sense and he doesn't recognise me or respond to direction or questions, he keeps pulling at his bed sheets and is very agitated. The waiting list for our local neuro rehab unit is 8 people and there are only 18 beds so that could take forever. I'm meeting with his consultant on Thursday to try and get him assessed and get the CCG to fund a private unit in the meantime.
Has anyone else been in a similar situation and seen significant improvement in their partner or relative
Does anyone have experience of how long it may take to get funding / any advice
Thanks in advance for any help you can give
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Nix111
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Hi my husband had a ruptured brain aneurysm on the 21 June 2017. I like you did CPR & was told to prepare myself for the worst as they flew him to a hospital 60 miles away. He was eventually moved from ICU to acute, then to a stroke ward (that was awful) & then to the rehabilitation hospital on the 21 July. I have seen a lot of what you describe over the last 12 weeks and understand how totally distressing it is.
He is due to be properly discharged with support at home in early October. It is a long road and even now I am aware that we have a very difficult path ahead. All I can say is try to look at it in weeks & months and not days, that is what I do. We have gone from near death to now sitting at home with a weekend visit listening to favourite music and pottering at home gradually getting used to things as they were. There are very difficult times, but keep positive, improvements do come, they just come very very slowly.
Thank you for the reply and the advice, this forum has given me hope for the first time in 7 weeks, I've got all the time in the world for him to recover and I'll fight for the best care every inch of the way, if he's talking there has to be some brain function despite the very gloomy prognosis from the consultant- we have a 9 year old child and I'm heartbroken- I'd love to hear more about similar stories of hope, I wish your husband a swift recovery and you strength in the challenging days ahead x
I know how lonely it is & miracles do happen. They tell you to look after yourself, I have been really bad at that, but realised early on that you must eat, sleep and exercise otherwise you cannot keep up with the stamina that you need, Your daughter also needs you to be okay so do take that rest when you possibly can. It is vital - says she who didn't do it but now has to!!!!!!
Hi Nix111, my husband also had a cardiac arrest in 2015. I also done cpr for 15 mins and ambulance crew worked on him for 30 mins. He was in icu for 3 weeks, then high dependency for a couple of days and cardiac ward for a few weeks and he started talking in there but didn't make sense for some time and was so agitated that they had to put big gloves on him to stop him pulling his feeding tube out. He was moved to a rehabilitation stroke hospital 4 months later and he was very aggressive and angry for awhile until they sorted out his medication and then he started to calm down and then 3 months later he was transferred to a birt unit. He was away for 12 months all told and he's been home for nearly a year now. I'm not going to lie it's not been easy he's wheelchair bound now and has cognitive problems and twitches and he's quite child like and can't make decisions for himself but you adjust to it and i wouldn't be without him. Hope this helps. You have a long road ahead it takes months. They say the brain repairs itself over 2 years and what ever their like after that is what your left with. It's very very early days for your husband so do all you can to encourage him and he will improve. Good luck. I feel your pain and anxiety. Be strong and the best advice i can give you is take some time for you and don't feel guilty about that because i know how that feels but you will really need to or you will burn out i nearly did because i was there every day without a break. I also had a 9 year old daughter and it was a hard time but they are very resilient. If you need to talk about anything I'm here. Take Care Sue X
Thank you Sue, your reply is hugely appreciated, I had a good visit today, he still doesn't recognise me but he definitely answered some questions correctly that I asked him, he also gave me a kiss when I said kiss me - a glimmer of hope in dark days - I know there is a long road ahead but time is an easy thing to give. I am taking a little time for me, I'm taking Finn my 9 year old out to my mums in Majorca for a few days next week, I need some time off this rollercoaster and now I feel he is stable I think I can and deserve that. Sorry to hear what you've been through and I hope your situation improves further still, let's keep in touch, thanks again, Nicky
Hi Nicky,that's great news that he is doing things to command. He will start to recognise you very soon he defiantly knows who you are that's for sure. When i asked John in the early days he used to say i was his mum lol i wasn't impressed with that but we laugh about it know. I'm glad you are taking time for yourself and Finn you both need to recharge your batteries. Your husband is being very well cared for. It may sound strange but in some ways my life is easier because John was a bit of a control freak he liked things done his way but now he's so laid back and not stressed any more lol. Yeah definitely keep in touch. Hope you have a lovely rest let your mum look after you because you need pampering too because believe me your husband will be getting a lot of that in the future. Let me know how things go. Take care Sue xx
Thanks Sue, I had a really good visit with him today, see below, I've arranged a rota of friends and family to visit while I'm away including a few minor celebrities I work with (we run an event management company) and who are friends, the nurses are very excited! I'm looking forward to some much needed R&R with my mum and family which should leave me ready to face the next challenges. Take care too! X
Hi Nicky, that is fantastic news. John still struggles with the ages of our kids sometimes and other times he's spot on. John has lost alot of old memories which is quite upsetting especially memories of the kids when they we're little he can't recall so be prepared for that. Wow i bet the nurses are excited. Have they said where his brain is damaged? John's is front lobe and the gangila(not sure of the spelling) his eyesight was affected badly to start with but it soon came back. Take care Sue xx
Thanks Sue, another really positive visit with lots of conversation- he was trying to order Burger King earlier!! I'm trying not to be offended that he remembered the cats name Smudge but not mine!! Desperately trying not to get my hopes too far up & I know there is a huge road ahead but the progress in the last week from a DNR to this feels astonishing- meeting the consultant tomorrow I just need to get him the help and support he needs, the ward he is on are treating him well but it's a chest ward not neuro rehab so that's tomorrow's battle! Thanks for the message much appreciated x
Hi Nicky,that's great news that he's remembering things and no try not to take things to heart as he will forget your name at times but he will definitely know who you are. How did it go with the consultant? I found those very early days very stressful due to the consultant being very negative and not giving us much hope he was so so wrong and now calls John a miracle. Take care stay strong. Sue x
I can relate to everything you've said. My partner suffered a hypoxic brain injury in 2013. In the first weeks he wasn't expected to survive. He went on to recover to the level you describe and was in a local NHS rehab unit for a few months then transferred to a private BIRT unit which was funded. In all he was in hospital/rehab for a year.
For months he thought I was his sister and talked complete nonsense. To cut a long story short he has been home now for 3.5 years. He does need constant support but is so much further on than anyone thought. As you have no doubt been told, every brain injury is different but there is hope for you. Very early days for your husband and you are already seeing improvements so keep positive and I'm here if you need an ear.
Thanks for the reply, these stories do give me hope, I feel I had a bit of a breakthrough today, I asked him if he knew who his son was, the name of his boy and he looked at me, smiled and said Finn - which is his name! He seemed to think Finn was a baby and when I told him he was nearly 10 he said 'wow, well technically that's 7' I said no it's 9 and he laughed! He thought he was in a Chinese restaurant today, kept asking for menus and telling me what he wanted!! When I went to leave and said goodbye he asked if I had paid the bill!! It was far my husband but there were moments of joy and crucially hope! I'm hoping the consultant meeting goes well Thursday and we can get him moved, thanks again for your reply and I hope your husband continues to improve and you cope with your changed lives.
Hi Nix111, I read your initial post but wanted to wait until I had enough time to reply properly. I'm so sorry to hear about your husband but pleased that even over the few days since you posted it sounds like he is making progress. It sounds like a similar situation to my husband, cardiac arrest at home, 2 weeks in ICU (the neuro Drs told me there was little brain signs and to prepare for the worst), he then had 6 weeks on a cardiac ward and then a short stint in the local neuro rehab unit. We were very lucky that by the time the bed came up at the neuro unit - my husband had made great progress with the incredible input of a great OT on the cardiac ward.
That was 3 years ago and today is a totally different picture. My husband works (slightly less hours than before due to fatigue) and a different job within the same company. He's back to driving and goes to the gym and does a lot of cycling. Its an amazing recovery but for me its hard because he's quite a different man to who he was before. Thankfully his relationship with our daughter (now 8) is the same and with organising and planning from me - I can leave him in charge of her for a time.
The main thing that has helped me is attending a carers group run by headway. All our situations are different and I always say I feel like a fraud being there when many people have a lot more things to deal with than me - but my husbands memory issues and loss of executive functions have definitely changed our relationship.
Anyway - it sounds like you are in very early days of your journey and I really hope your husband gets the help he needs and deserves. I think the acute care was excellent and the community follow up care 'ok' but I have literally had to fight for every appointment which can be draining.
Definitely take time to look after yourself too - its very important - and definitely take up every offer of help (for anything) that comes your way.
Thank you all for the replies, my husband continues to make small improvements and he recognised me yesterday - he kissed me and said love you meanwhile he is stuck on a chest ward getting no specialist rehab while we wait for a place in the rehab unit, he was 8th on the list but thanks to me kicking off, calls to the CCG, a letter from the MP and some friends in senior positions in the NHS he is now 2nd on the list so hopefully only a 4 - 6 weeks, some friends are crowdfunding to get private support in the meantime, just waiting for CCG to confirm if we do pay privately for interim we don't loose our NHS place - it is so frustrating having to fight when your life is falling apart...
I find the not knowing the worst thing of all, not knowing if he will recover to any quality of life, not knowing how our relationship will turn out, not knowing if I am now in effect a single mum, it's really the worst kind of limbo.
Thanks to all for support, these boards are so helpful and insightful
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