Sorry this is a long one but i just want to get all the info out for any help or guidance please.
Im posting on behalf of my mum as shes a little overwhelmed...
My dad age 66 had a fall from a height whilst at work on 8th March 2022, he was airlifted to Nottingham Queens hospital and put into an induced coma.
He sustained a brain injury on the frontal lobe as well as skull, sternum and spinal fractures.
He spent 10 days in the coma with very little response to anything, and at this point we were gathered to say our goodbyes and had the organ donor team on standby to take some of his organs as per his wishes. Consultants advised that if he did come round then there would likely be quite severe deficits and he would likely never walk or maybe talk again...
His breathing tubes were removed and he slowly fought his way back to us!
He was then moved to the trauma ward where he stayed for a month in order to operate on his spine and get him to a stage where he could be moved to a rehabilitation centre. At this point he started talking again and day by day his memory was getting better although his short term memory wasn't great.
He spent a further 7 weeks at Leamington Rehab Centre where he learnt to walk again and his speech and memory still continued to improve. We could have lengthy conversations with him albeit he confused words sometimes and got muddled with names etc.
Finally on the 7th June he was allowed home! He walked from the car to his spot on the sofa for cuddles with his dogs and his neighbours came out to greet him, it was a truly amazing day as we never thought we would get to this point!!
He has now been home with Mum for 4 weeks and she's finding it a struggle to motivate him to do anything at all. We know that his whole life has been completely changed as he has had his driving licence taken off him for 12 months and he has had to retire from work so he 'feels useless'
He has new characteristics which she is trying to be understanding of such as he just constantly flicks through the TV channels, he seems to be reading the 'info' tab about each and every programme but doesn't actually settle on anything for more than a few minutes.
He has always been a huge music lover and has over 1000 vinyl records which he would always play on his pride and joy record deck, but he's just not interested anymore no matter how much Mum tries to encourage him to put a record on (he seems to google a song on his phone and then again just scroll through his phone reading and half playing songs...)
He talks constantly about his bowel movements and doesn't seem to mind who he's telling
He sleeps throughout the day and then is restless all night, keeping Mum up who has just in the last couple of days has just had to have a procedure on her back so shes needing to rest too.
Mum has tried to put in to practice some of the suggestions the Rehab centre advised when he left there.
He has a whiteboard which my mum updates daily with any tasks he needs to complete and visitors coming etc. He very rarely completes or even attempts any of his tasks.
She spoke to his GP a couple of weeks and he has been prescribed antidepressants which seems to have lifted him slightly.
Mum doesn't drive (although she has actually started lessons now) so getting out and about is a struggle as myself and my siblings are spread out across the country so not always on hand to help out with lifts etc.
I have found a couple of support groups local to my Mum, so will suggest them to her and see if they might be worth taking him along to and i have downloaded a Headway leaflet on fatigue following a brain injury and some of the things make sense but i suppose im just wondering if anyone has been in a similar situation and can offer any suggestions of things that have worked/helped them?
Thank you
Written by
SLK1985
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hey slk.welcome to group!get your mam to join love.what you just wrote resonates with a lot of us.i would say on this forum we split between those that have b/injury and family looking for answers/support.know that there will always be help here for you all.my best wishes
Thus may not be advice you are wishing to hear but well done on progress so for.
It's early days on the long struggle back. Like you say he has changed, we'll he's also got to adapt to this new person he is. First off he has to accept this new version. Believe me that is no easy feat.
The white board is great but start small. Simple little tasks that this new version can actually achieve. He will still be improving for a while yet. Then he needs to adapt to the restrictions he may have.
Believe me there will be no one more upset and frustrated at the inability to complete tasks than your father.
Try and find your local headway group and meet and talk to them. It took me about 8 years to accept I wasn't the man I was pre bi.
I'm a long way from who I was initially after my bi but it was a long road getting there.
Hi, I fully appreciate the worries and frustrations you are receiving from your dad. I suffered a TBI back in 2014, and as my wife would happily confirm it took me three years to settle down to a relative normality. Whilst I appreciate it is still early food hot you, along with my friends I do strongly recommend a visit to your local Headway, and in due course, perhaps with a pole it would be good getting him out walking. In the meantime, reading and listening to his music might help.
just to add that maybe the tasks on the whiteboard need to be split into manageable smaller tasks and assign them a time slot per day.My day had to be split into half hour chunks that I could tick off when done.
And to remember that TV watching takes a lot of brain power - no way I could watch it and concentrate on the program for more than a year after my BI.
Musiv/audio books were very useful then.
It's very early days. It took me a year to find any motivation
The best idea is to get in touch with Headway and support groups.
Brain jury is sort of the same and also a little different for everyone.
Lack of concentration and ability to focus is common. Reading and listening to music and watching TV all are high brain energy activities. They may be too much for him but he can't figure that out. Lack of awareness is also a big thing.
Find out from Headway what their intro info is. He may be able to get assessed by an OT who can see what he can do and what he can not.
There are things out there like an ap called CanPlan which let's you photograph each step of a process to remind you what you do.
With a bi you can also be in a state where you think you are functioning but you aren't- in his case the constant channel etc flipping may be from this rather than boredom on his part.
He can continue to make progress with a lot of effort but it takes guidance and also your Mom needs support. Ask Headway what the have for her.
Headway had lots of stiff but also is not magic and most people end up having to advocate for themselves and lived ones a lot. Get your gritty determination out, you'll need it.
Living with someone with a bi is tough. I have one and I am no panic to be around. My sleep schedule is irratic, I get irritated at too much stimulation and it is hard for others not to take that personally . I do not do efficient. I have to fo one thing at a time or I don't do anything - it just all goes bye bye! And I don't know what I was doing. Writing it down only means I have to wait for my brain to operate again. It doesn't always.
Fatigue is a big thing for people with brain I juries. Their brain has to work really hard even for simple things snd when it gets tired, that is it.
Sleep is healing. A nap here and there is a good idea.
He won't know right now what he can or can't do - you assume you are old you, til you try something and can not do it.
It is important your Mom doesn't get burned out. You may have to look at moving you closer or them closer. Change is not your Dad's pal at the moment though.
You'll have a better idea once hechas some assessments done, but don't take them as written in stone as a lot of here were told we would never this or that, and we got there anyway. Just what you get is a surprise.
Hard to face loss of being able to work. He may find things he can do to feel useful, eventually.
Poor guy and your Mom are going through a lot, and there is no clear path. It us the nature of the beast.
Taking care of basics- sketp, eating properly, walks ig possuble or whatever gentle exercise is pissible, are all super important .
Oh, the other think they forget to tell you us changing weather can have an impact - your brain can't always regulate the changes as fast as it could before and you can be tired before you think you have done anything at all.
Keep us posted, people are good at sharing and people find different things work for them.
Yes, family and care givers too. Venting also allowed. We get it .
Hi I am the wife of a brain injury survivor and can completely understand what your mum is going through. I know that this awful event has happened to your dad,the same as it has to my husband but as the partner, you are trying to help and care for a person who looks like your partner but in many ways just isn’t acting like them anymore.
My advice to your mum,would be, to be kind to herself, she can’t fix this instantly, it’s going to take a lot of time,patience and acceptance.
We are 2 years and 3 months since my husbands stroke, he cannot walk,cannot sit up by himself,he sleeps about 20 hours a day and doesn’t want to do anything.
Your dad has made fantastic progress, just take a breath and let him settle into his new self and for you all,as his family,just give yourself time too.
As lots have said, it is very early days. Put his tasks as simple things, getting up and dressed, making a cup of tea, looking for birds in the garden, just 1 or 2 things and gradually increase.
I understand the tv comment, I couldn't make decisions as to what to watch or listen to, and didn't understand them half the time, my brain felt overloaded so it was easier to sit in silence without having to think or process anything. Did your Dad like classical music, as I found I couldn't listen to singing as I couldn't process what was being said. I was an avid reader but it took me about 18 months before I read properly, I still don't remember what I have read after 3.5 years. Tell your Mum to take everything slowly, not to expect great improvements, as long as he seems happy and not worrying about things. Fatigue is difficult to understand and he is bound to be struggling with it, if your Mum can try to keep him awake in the day, or maybe nap herself might make the nights easier.
I hope things are improving for you all, and keep asking everyone on here, even the smallest query, as they are fantastic at replying and suggesting relevant sites, books, contacts etc.
Hi I am a wife of a brain injury survivor , my husband fell downstairs in July 2021 was in hospital till Sept then rehab till November . I am finding it hard trying to adjust to the person he is as I haven't had a app with consultant since this has happened we are getting told drib and drabs of his injuries. He sleeps from 7pm -6am and will sleep during the day . I have tried different agencies for support but no joy . We as a family have tried white boarde because when he was in rehab he had a timetable so he knew what he was doing at certain times and sleep tracker so I can keep a eye on his sleep pattern . I really understand how your mum feels it's so hard for us as carers but I always think how must my husband feel as his life changed overnight . Hope your mum can get support and you as his kids x
Hi,My husband had a severe stroke 4 years ago which left him with very little speech and walking with a quad stick in the house and wheelchair outside. He can now only read short sentences. He was only 57 at the time and working in finance. Life for all of us is very different.
My husband is also clicking through tv channels and has to be persuaded to focus.
Since he left rehab I have taken him to an adaptive gym twice a week which has been a god send. Anything structured run by anyone other than family sees him motivated and working hard.
Sending good wishes to you all. It takes time to accept the changes and cheer the small improvements.
As everyone has said, it's so impot to know that you're in for the long haul. It really is very early days yet. And yes, get your mum to join this group, I've found it so useful and supportive since my husband's TBI 3 and a half years ago. Don't think anyone has mentioned puzzles - we found them really good, any puzzles like Lumosity on your phone, wordsearches, jigsaws - anything to help form new neural pathways.
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