Struggling

[Eltonsilver]

Hi all, I'm finding it so difficult at the moment with my husband and his BI.

He went into rehab 2 weeks ago, which I thought, great we will be pressing on but no! He refuses to get out of bed. He was 6 months on the medical neuro ward and they had trouble keeping him in bed now he won't get out. Has anyone been through this themselves or with a loved one? He was in a room on his own in the other ward for various reasons now he is in with 5 others. I thought at first he was just overwhelmed but now I don't know.

We are also struggling to get him to admit he is in hospital, I don't know where he thinks he is but denies he is in hospital.

Am I expecting too much too quickly?

Any comments are much appreciated I am getting more stressed by the day.

[fity123r]

hiya my husband had a brain injury in december 2022 he was quite bad at first he was in rehab for 6months during his time there the first 2months he was actually in bed all the time he wouldnt engage with others he had severe cognition problems he didnt know where he was he didnt know what happend to him after 2months he was walking around the wards but because he had unsteady balance it was very unsafe for him to do that

now after 18months my husband knows where he is but dosnt remeber the date and day he knows he had a brain injury he can now walk independently sometimes but sometimes it still is very unsteady he can feed himself he couldnt do that when he was in rehab he can now even make tea and cook a curry wit my supervision

his sleep pattern still stays the same some days he will sleep all day long some days he wont even sleep for more than 18hrs

even know if i dont encourage him to get up he will be in bed all day long doing nothing

i think its early days for u yet and it will happen just stay strong and be patient now i know with brain injuries its a very very slow process and every day he will achieve something different xxx

[Eltonsilver in reply to fity123r]

Thank you so much for that. I have a lot of positives, he can feed himself, no problem, tell the time and even read sentences, he even beat me at connect 4! It's the refusing to get out of bed thing, as he was desperate to be out before.Thank you so much for b the reply

[cat3]

Elton. whilst your husband's brain is reconfiguring and struggling to connect with the here & now his progress will be the classic 'One step forwards - two steps back'.

Once I became fully compass mentis my family explained how, on one day's visit, I would be rational and back to being the mum they knew ; the following day I was hallucinating, agitated, talking gobbledygook and totally lost to them.

These early developments are worrying and disturbing to loved ones, but my consultant assured my son & daughter that it was all par for the course in brain injury, and that periods of clarity & rationality were evidence of better, more stable days to come.

Hang in there m'love whilst your man struggles to find his way back to you..... Cat x

[Eltonsilver in reply to cat3]

Hi Cat, the OT was explaining that he didn't even believe he's in hospital, goodness knows where he thinks he is, she thinks of we can convince him of that it will help

[cat3 in reply to Eltonsilver]

Dear Elton.. This is about my neighbour who, a few years ago, sustained a hypoxic brain injury after a heart attack. I hope it helps a little...

He's a gentle soul but, in hospital after his brain injury, he thought he was in his local pub and that doctors and nurses were barmen & barmaids who were holding him against his will. He was aggressive and kept telling staff he needed to get home to his wife 'cause she'd be worried.

He didn't recognise his wife but repeatedly tried to fight his way out of the ward to get home to her ; staff had to use a 24hr 'bodyguard' to contain him. A few months later however he was home ......and joking about reports of his 'confabulations'.

I know his case differs on many levels with your husband's, but I hope this shows the potential for progress even after the most bizarre behaviour. I doubt any persuasion can register with your man until his brain is good & ready. My consultant constantly referred to this as 'Turning a corner' when reassuring my loved ones.

It still breaks my heart thinking of the sadness & anxiety my loved ones suffered seeing me so changed, so your own predicament resonates big-time with me m'love...

Sending all best wishes for your man, and for his turning that corner. Cat x

[Eltonsilver in reply to cat3]

Cat3 you are really helping me through all this, I can't thank you enough. He was better today he had let the nurse shave him we nearly got him out of bed, maybe next time. He even wanted his telly on which he hasn't bothered with so hopefully selling into the ward

[cat3 in reply to Eltonsilver]

That's such good news Elton.

More forward steps on the (pretty haphazard) path through brain injury. Thanks for this update m'love, and keep them coming... x

[Woo777]

I think I was about 2 years before I got to where I am now . Fairly normal ( I think ). it’s a very slow process healing of the brain , hopefully you will see him improve soon xxx

[Skallagrigg]

My son is 18 months on still won't get out of bed somedays, I thought it was cos the rehab had nothing planned for him to do but it's not, it's just the brain injury, it's horrible for us as we want them up and moving as we think that's getting better, but for them it's their way of healing and dealing with their brain stuff, at least that's what I believe, that keeps me going

[robmb]

Hi Elton, sorry you are experiencing this, my husband had a TBI on 3rd July 21 and was in hospital for over 3 months which looking at lots of comments on here doesn’t seem that long but as we know everyday is a long day. During his stay he was in and out of a coma for 3 weeks so there was really no prognosis at the time, we had to wait for him to “come round” the next part of his journey was different again we could visit and it was like pulling teeth or we’d visit and he was really concentrating. Several times he lost focus of where he was and still doesn’t remember anything about the accident. I can only emphasise with what you are going through it’s hard it’s confusing and very frustrating, all through Robs recovery I was always asking myself questions why what if etc, the only thing I can honestly say is with sheer determination support love and understanding he’ll get there. Rob had his final appointment with his consultant at Salford Royal last week and he was really impressed with how far he had come in such a relatively short time he has been signed off to re start work albeit very slow phased return and also to contact DVLA for his license, so believe me when I say you never think there’s light but there is, it’s still a daily struggle he’s not the same Rob as he was before the accident but he’s here he’s alive and at home. Take it easy on yourself give yourself timeout fresh air exercise swimming walking the dog, coffee with your bestie and don’t punish yourself xx

[Eltonsilver in reply to robmb]

Thank you, it's really hard. He is doing amazing considering we didn't expect him to make it through the night when the accident happened 6 months ago. I just feel I'm on a treadmill at the moment in site it will get better. My horse and dogs have been my saviours everyday and of course very good friends and family.