How do you live with the not knowing?: Hi All My... - Headway

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How do you live with the not knowing?


Hi All

My husband suffered a hypoxic BI after a heart attack, we are now 8 weeks in. He is conscious but hugely confused, not making sense, doesn't seem to understand he is in hospital. I don't think he can see properly, he doesn't really respond properly to questions but occasionally manages something approaching a conversation.

We've been stuck on a normal ward in hospital but after much fighting and kicking off he finally has a place at a specialist rehab unit from Thursday which I know is what he needs

I know from what I've read here is that only time will tell what kind of recovery is likely however he is only 54, we have a 9 year old boy.. how do you possibly cope with the not knowing... it's like the worst kind of limbo.. any advice gratefully received


21 Replies

Stay postative keep beliving he will come back to you and take care of yourself!

It's life unfortunately, bad things happen to good people.

He will do so much better in rehab, I too was kept on a general ward because there were no beds available on a neurology ward and even though they looked after me well it wasn't the care I would have got from a specialist ward.

Make sure he has plenty to stimulate him. My sister made me a perpetual calendar that had to be changed each morning, the nurses and cleaners used to compete for who would turn it over each day.😄 It helped me grasp the concept of days passing and it was fun too.

My daughter brought me a child's, and I mean early years, block puzzle. I was disgusted with her, but to be honest it was great I progressed very quickly with harder and harder jigsaws I was soon able to do 1,000 piece wasgijs. Helped my fine motor skills as well as recognising the shapes.

When I came home I started doing paint by numbers, I had real trouble with numbers, some of them looked so alike, agin I started with cheap children's ones now I do large adult ones I've framed two, Nefertiti and Tutankhamen. And anyone that sees them doesn't believe they are paint by numbers.

So, think outside the box as he progresses and it'll be fine although different xxx

There is life living with brain injury, just different from what you were expecting and planning for.

Take care

Janet x

in reply to Kirk5w7

Thank you Janet for replying, he seems so far from completing even a child's puzzle that I'm really struggling with what the future looks like, I will keep trying, these forums are invaluable

Your post gives me hope, thank you for taking the time out to reply x

I'm sure you'll see improvements once your man is settled in a rehab ward, with all the available therapy. And, when he's ready, the aids mentioned by Janet will help his brain function, as well as shifting his focus from negative thoughts/images.

And two months is so little in terms of recovery Nix. So take a step back and prepare for many more months of gradual progress ; our brains are highly complex, and your man's brain will be doing what comes naturally, minute by minute, ....................searching for ways around the damage.

But it's confusing for the patient when an injured brain compromises the ability to think straight, so don't be too disturbed by his confusion.

My family reported some 'bizarre' behaviour and speech from me (I was SO shocked, & 6 months later returned to apologise to the staff for being such a handful..............they laughed and said I'd been one of the better ones !)

Don't judge your husband's progress on a daily basis. There'll be bad days amid better days, but I hope you'll start to see more of the better days when he's at last in the care of specialists.

Look after yourself with proper food and rest. I really feel for you my dear knowing now the toll my illness took on my own family.

All best wishes for better days ahead....... and please stay in touch. Cat x

in reply to cat3

Thank you Cat, that message is hugely appreciated, I'm taking a few days out at my mums in Spain for a little R&R with my boy after the darkest of times... I can't wait to get him moved and get the specialist help he so so needs, thank you taking the time to reply, I know I need to be patient but I always struggle with that, in work, in life etc thank you again x

in reply to Nix111

😖 x

Not knowing can be very hard Nix, I totally agree. But really there is no choice. You have to wait and see what happens because it is impossible to predict. Just as in personality, looks etc everyone recovers from BI in a different way and on a different timescale. I'm sure your husband will get through this and that your love and support mean so much to him. I wish you and your family all the best.

in reply to lcd8

Thank you for taking the time to reply, very much appreciated.

I'm the worlds most impatient woman so this is a real struggle for me. I can deal with anything if I know what I'm dealing with...

I know there is no choice, I'll give him all the time in the world in reality if I can get my husband back and Daddy back for my son

Thanks again


My husband is still not properly conscious after 7 months. The not knowing is awful. Trying to be hopeful but having realistic expectations at the same time. Your whole future changed in an instant with all your hopes and dreams. All I can say to help is it does get easier, I have learnt to accept what I cannot change, I keep positive no one knows what the future will hold. It is early days for you try to keep positive , look for changes in a week to week basis rather than day to day. Be patient and try to look after yourself x

in reply to Hhodg

Thank you and I'm so sorry to hear about your husband... this really is a nightmare kind of limbo isn't it..

Can I ask is your husband talking? Does he know who you are? Have you seen any improvement in seven months?

I've been out at my mums in Spain for a few days so I'm hoping and praying I'll see some kind of improvement tomorrow when I go back in.

Thanks again for taking the time to reply that's very kind.

I hope your husband continues to recover


in reply to Nix111

My husband cannot talk or communicate. He seems to know us smiles at us, reached out for us and has just started laughing and crying appropriately. There have been constant slow, subtle changes from no awareness over the months. They say that people improve for years so there is no reason to think he will stop changing at the minute but change is very slow and up and down .Don't be concerned if you don't see changes day to day you have to get used to the idea it will take a very long time, as tough as that is. Take care and look after yourself x

Dear Nix111, its so tough the 'not knowing' but like other people have said - it really is an unknown and there is no easy answer. It is great that he will be moved to the specialist unit tomorrow - that will be such a positive thing for him but they should also be able to support you and your son way more too. I hope your trip to Spain brings some light relief for a while - and maybe even some sunshine. Take care xxx

in reply to CJDA94

Thanks for the reply, I'm hopeful the move to the unit should help but I'm also a little apprehensive about the change for us both, the break to Spain has been invaluable, I feel relaxed, refreshed and ready to face the next chapter - thanks Nicky x

Hello Nix111 and welcome to the forum. We all have different experiences, but every single one of us will be able to identify with the limbo of not-knowing, whether we were the ones making no sense in the beds, or the ones sitting at the side of it, wondering what on earth was happening.

I was an utter nightmare when I was 'brought around' after the sedation/induced coma following my brain haemorrhage, even before I was verbal. The first sign of life out of me after I'd finished retching when the ventilator and naso-gastric feeding tubes were removed was an obscene hand gesture at my husband. I terrified my son, by calling him "Little brother!", and threatened to kill the husband more than once. I insisted I'd been out on day-trips, when I was 'stuck' to the bed with a multitude of pipes and tubes, and repeatedly asked my son to bring a bag that wasn't at the side of the bed, even though I was certain it was.

It was only after I came out of hospital that I learned about 'confabulation', for me, that was false memories, I can 'remember' parts of being in hospital that didn't actually happen, my reasoning is that my damaged brain didn't like there being 'gaps' in my memory, and filled the sedated-spaces with all manner of highly questionable 'events'.

I was confused, too, I wanted 'out', too, the last thing I remembered from 'before' was taking a plastic bag to the side of my bed, in case I was sick again, then I woke up, in hospital, in WRONG pyjamas. (The husband had grabbed the first sets he thought might be my size in Primark, and they were very, very wrong.) I was atrocious with the nurses "What day is it? How the hell do I know what day it is, all the days are the same in here?" "Do I know where I am, I'm in hospital, aren't I, but there's nothing wrong with me!" Having your brain stirred up isn't a very comfortable experience, and I was Queen Tetchy of Irritable-shire for quite a while.

None of us can give you a time-line on when he'll be 'better', as Cat has pointed out, the brain is an intricate beast, and brain-recovery isn't as linear as six-weeks-in-a-cast-and-the-broken-bone-sets. None of us can predict how much of 'him' will come back, even your doctors won't be able to do that, because every brain re-adapts differently.

How you deal with the not-knowing is by accepting that he's had a major medical issue, and that he's survived it. You deal with it by knowing that you're pushing for him to be in a more appropriate setting, and that the care and intervention he will have there will be more appropriate than on a 'general' ward. (No disrespect implied to any general ward staff, all NHS employees deserve medals the size of bin lids, or at least a pay-rise in line with inflation...) You deal with it one day at a time, the sun will always set, and it will always rise again, that's what you need to do, care for yourself, and your boy first, so you have enough energy to deal with whatever caring for him entails.

in reply to Gaia_rising

Thank you so much for taking the time to reply and for sharing your story and tips on how to cope, that's so very helpful thank you. I know I must focus on me & Finn, I just miss him and the life we used to have so very much. Can I ask how long ago was your brain injury, how long did or is your recovery taking and do you feel fully or nearly fully recovered, I realise every BI is different, it's just helpful to hear people's experiences. Thanks again for your response x

in reply to Nix111

Morning, and welcome to the little corner where we talk behind the teacher's back, and tell it like it is.

My haemorrhage was February 2015, and I had a further round of corrective surgery in March 2016. I was discharged from hospital 2 weeks after the first surgery, and that's when the 'differences' started to show. I'll not bore you with specifics, because everyone's experience is unique. I don't feel 'recovered' at all, but that's just me 'being hard on myself', a lot of things that used to be effortless/subconscious now need additional processing, and when I become aware of my over-compensating adaptations, the chasm between what I was, and whatever I am now is obvious.

That aside, with my 'bizarre, over-compensating behaviours', to quote Workplace Well-being (formerly Occupational Health), I am relatively functional. I have visual disturbances, balance and co-ordination issues, and my sleep-pattern is ruined, but I 'get by.' The big one I'd advise you might be an issue is the dreaded fatigue, I'm two and a half years in, and essentially useless after dinner. (Work-around, anything that needs doing is done before dinner, and I don't answer the phone, or respond to emails after 6pm, because I can't guarantee I'll be civil.)

Contact your local Headway, and they'll be able to link you up with local support, but enjoy your time with Finn before you catapult yourself back into searching for answers, my son has told me that his Dad wasn't really 'there' for him when I was in hospital, double-whammy effect on him there.

There's no real right or wrong, you know not to expect miracles, and, with my experience, I'd say the most important thing is to reach out, and not try to do everything yourself. I was too proud to ask for help, and it backfired.

Morning Nix111, Sorry about the cliche but time is a great healer and one of the things you have to learn is acceptance and patience and tolerance. Tough I know but will keep your sanity. I'm 2.5 years in from my bi and I'm still not right so going back for a service, my wife and kids are finding me really difficult and we all need educating on the new Nick.

Hope you have a positive Wednesday. Nick

in reply to MXman

Hi Nick, thanks for the reply, yes I know time is a healer and it does get a little easier each day, sorry to hear about your injury and slow recovery- I wish you and your family strength. Take care, Nicky x

Things will improve in time. Try to show him photos to see if he recognises them and what people were doing in them. This will give you an idea of his level of understanding so you can try to explain where he is and what happened in a way he will understand. I think your husband sounds like the man who set up the BI group I go to in his early recovery. It took him 2 to 3 years to recover but he got there focusing on fitness.

Hello Nicky

My husband had a cardiac arrest and hypoxic brain injury 13 years ago at the age of 47. If we hadn't been visiting him in hospital at the time of his arrest he wouldn't have survived. It took about 30 mins for the docs to get him breathing again. Our children were 11 and 13 at the time so I completely understand how you are feeling.

There is no answer to your question, you just survive from one day to the next. It will help when he goes to a rehab unit as he will probably get speech and language therapy and physio. Hopefully you will see progress. If not from day to day but week to week. Keep a diary where you write down everything that you notice about his behaviour. Gradually you will see the improvements. I visited him every day while the children were in school and helped with his physio etc. and then again with the children in the evening.

My husband was in hospital for around 3 months and although he walks, talks, reads etc. he has an extremely poor short term memory which means he isn't safe to be left alone.

I was so lucky . . The local Headway Group were holding an information afternoon where my husband was an inpatient on the Neuro ward just after his Head Injury

They have helped and supported us for seven years now and they are brilliant They have all been there and bought the T shirt ! ...It took us a couple of meetings to settle in but now we help other newbies to settle in The Headway Family are Great it is so reassuring to know you are never alone and that other people have been where you are now and you learn how to cope with whatever life throws at you ...

I was told to expect the worst following Johns Brain surgery but now he's almost back to normal.... in a lot of ways he is different ,some better than before sometimes , often he is ' beyond tired ' too tired to be tired ! Etc but the extra hours that he sleeps are good for both of us as having him around the house 24 / 7 was a strain initially

We have learned to only do one thing per day Attempts at going to the doctors and then onto the supermarket caused great fatigue and unhappiness

Keeping a diary is good for both planning and noting achievements ....He keeps his own diary now so he knows what's going on and remembers what has gone on

And we have boxes ...for keys ..letters ..appointments ..pens ...notepads anything forgettable has a box. !

I could go on and on but I'll say goodbye for now and good luck X

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