My husband is a TBI survivor!: Hello all! This is my... - Headway

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My husband is a TBI survivor!

Bethan23 profile image
41 Replies

Hello all! This is my first post. On Christmas Eve my husband was involved in an unprovoked attack whilst walking home with myself and our 3 young children. He fell and hit his head and had 2 fractures to his skull causing an acute subdural haemotoma and his jaw was broken. He had a craniotomy and the clot removed, then after recovering well for a few days went downhill and subsequently had a craniectomy to give his brain space to swell. For the following few weeks he was struggling to walk, talk, depressed, suicidal, angry, confused, and each day threw new complications. He was convinced he was completely fine and was being held in the hospital because I wouldn't let him come home!

Unbelievably he is now home and doing incredibly well! To other people he seems pretty much normal, aside from his paralysed vocal cord making him sound like a darlic and deafness in one ear, oh and the massive dip in his head where his skull once was!

He was on a waiting list for community care which has now of course been suspended with covid. But we do our own kind of rehab with activities at home and I think we're doing a good job!

How is everybody coping at the moment during lockdown? Any recommendations for things to assist with his cognitive recovery, such as games? Is anybody else in the early stages of recovery?

Thanks all xx

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41 Replies
HungryHufflepuff profile image
HungryHufflepuff

Hello. I'm sorry to hear of your story. What a traumatic thing for you all to have witnessed. I am not in the early stages of recovery as it was a long time ago and I can't remember what helped me with cognitive recovery. Often I find it hard to concentrate for long and can't focus but recently I found sudoku which I can lose myself in for ages and it's supposed to be good for cognitive wellbeing. I have a dip in my head too.

Bethan23 profile image
Bethan23 in reply to HungryHufflepuff

That's great that you have something you can focus on and can get really lost in. We will give that a try, thank you! x

Bethan23 profile image
Bethan23 in reply to Bethan23

Do you mind if I ask if you will have a cranioplasty? My husband was due to have one last week but of course cancelled with COVID19... x

HungryHufflepuff profile image
HungryHufflepuff in reply to Bethan23

I'm sorry your husband's procedure was cancelled. So many things are just now. ☹️ I don't know if your question was aimed at me. A consultant told me I have a plate in my head. I can't remember anything from the first year after it happened, apart from a few snapshots of memory being in hospitals. I don't know what procedures I had and haven't ever felt able to address what happened or talk about it. I recently joined this group and this is the most I've ever talked about it or actually allowed myself to think about it. So I think my answer's not very helpful. I hope your husband's surgery will be rescheduled as soon as possible.

Bethan23 profile image
Bethan23 in reply to HungryHufflepuff

Ah sorry, my husband has a dip where he will have the plate put in then hopefully his head will be reshaped.

Wow, you are incredible! It is brilliant that you have come on to this forum, I hope you are able to get some answers to any questions you might have.

Thank you so much for responding to me, your answer has been really helpful. Please contact me anytime if you want to talk about anything, maybe i'll have a little insight or can help you to find some answers. Or perhaps my husband can empathise...

The hospital my husband was in have been really good at offering after advice if I call. Do you know which hospital you were in to ask for some clarity if you needed it? Also, the Brain Charity have been really helpful to us. Sorry for the information overload! x

walkingtalking2 profile image
walkingtalking2 in reply to HungryHufflepuff

I also was touched by your response, I know the world of embarrassment and awkwardness around things, my BI is probably very different to yours. However, please feel free to message privately if you would like to discuss. It has brought changes in me I would never have believed

walkingtalking2 profile image
walkingtalking2

I am so sorry you have been through this. What a terrible thing to experience. I too have had reduced hearing and have two noticeable skull indents, I wear a hat in public and around people I am less comfortable with as my hair has thinned along the scars. My family were very good at forcing me to play games I had no interest in but they did all help. Jenga, Uno and eventually other card games, but I did struggle to begin with. My father also played hours and hours of boggle with me, I hated this most of all, it made me so frustrated that I eventually had a total meltdown, accusing him of wasting time. He showed me all my previous answers from months before, how I had improved my writing skills and coordination as well as going from an average of 2 letter words to 4 and 5 letter words. Things do improve with work and time. I now do crosswords and sudoku daily.

Bethan23 profile image
Bethan23 in reply to walkingtalking2

Wow that is incredible, good on you! And your family!

My husband is very good at having a go at stuff with little encouragement which is great. He's really doing tremendously well. That's great idea to keep track of his progress to see over the months, thank you for that.

We have just tried a crossword but didn't know many answers ha! We'll have a go at Sudoku x

walkingtalking2 profile image
walkingtalking2 in reply to Bethan23

Your husband is very lucky to have such a caring family, I would definitely back keeping a record some way. I found it very touching that my dad had taken note but also know he as well as me took comfort in seeing I was progressing, even if my BI aftermath still frustrates me every day!

Thats reassuring, I dont know any of the crossword answers 😂 I thought that was the aim ;)

walkingtalking2 profile image
walkingtalking2 in reply to walkingtalking2

Also I had a cranioplasty.

Bethan23 profile image
Bethan23 in reply to walkingtalking2

Hehe, bless your dad :-) he sounds lovely. Family make all the difference. I have found we have some truly wonderful friends around us too, we've had a lot of support.

It's been a crazy few months with lots of contact with solicitors and detectives, doctors and nurses, etc, so that's kind of been our record keeping so far. But we keep meaning to start a diary too.

Ha yes I suppose you're right with the crossword! We ended up just filling in anything that would fit which was still entertaining and funny!

Would you mind telling me what your recovery was like after the cranioplasty? I absolutely understand if not. We have had different advice from the brain injury team to the hospital so not sure what to expect!

Thank you for getting back to me x

Bethan23 profile image
Bethan23 in reply to Bethan23

I am just figuring out how to use this and just read your first post. It is really incredible that you have managed to put all of that on paper, really well done you are so brave. xx

Ruuj profile image
Ruuj in reply to Bethan23

Hello,

In March 2017 i had a subdural haematoma as i was being treated by Warfarin for a DVT... I also had the crainioectomy followed by a Crainioplasty 18 months later. I can understand how horrible this experience has been for you and your family... it's really hard on everyone i know. Till date i am much better but i still have a shake in my left arm and have some degree of difficulty remembering things. It does get better but it will slowly. The brain is incrdible and with time you will all heal. For me i started to slowly get better and i think this is the norm. Your husband will get better with time I will always pray for you and your family. Sudoku is good even thay game where you have to find the words.. x

Ruuj x

Bethan23 profile image
Bethan23 in reply to Ruuj

Hello,

I am so sorry this is a late response, I missed your message amongst the others.

I am pleased that you progressed through your recovery. My husband is too, remarkably well but we know it's a very long road ahead.

We're in a safety bubble at home on lockdown, but I fear it will set him back in the future and maybe affect his confidence. xx

Plenty profile image
Plenty

Hello,

I have a BI also. I am relate to the rehabilitation at home you and your husband are trying to achieve. I’ve tried games at home with my children, but unfortunately I’ve not stuck to it for very long. Sudoku i have now done for a few years, which I’m getting better at and also give something to concentrate on each day. But possibly useful to have a game that involves communicating and interacting with others.

I’ve also used 2 apps on a smart phone, for brain training, elevate and peak.

Going out for a walk each day, fresh air and a bit of exercise.

I’ve not had the “dip in the head” that you mentioned. But there was another BI survivor in the same hospital as me that had the dip in his forehead, and when he had the procedure that gave him the more rounded front the his forehead, a lot of people noticed how is confidence had improved.

The rehabilitation progress is slow with a BI, and by no means easy. For me it’s been a bit of a roller coaster and I’m still on it.

But I think having family around your husband will be helping.

The headway group meetings are useful too, if you can get to any? (They have been cancelled at the moment for social isolation)

Good to read other people’s experience on here.

All the best.

Misty4 profile image
Misty4 in reply to Plenty

Sudoku not for me I’m afraid. I was always useless with numbers which seems to have got worse since my meningioma op in 2018. Reading is more my thing, always was. I miss my book club although we are all in touch on what’s app. Agree about Headway, I only went to one meeting before the lockdown but wish I’d known about it before.

Bethan23 profile image
Bethan23 in reply to Plenty

Thank you for sharing some of your story with me. I will have a look in to the apps too, I hadn't thought of that.

You are right, it is a rollercoaster! It's a nightmare situation but it has also had it's highs and we are managing to keep a sense of humour, like when I am mid-sentence and he leaves the room as he's lost attention!

I had looked in to the Headway meetings, it's something I'd be interested in but I'm not sure my husband would. He wasn't full of confidence before all of this so even less now. Although I think it would help for him to talk to people who have been through similar things.

I hope you manage to build up to play games with your children more. My husband is getting better at that now thankfully, it was very difficult for him that his relationship changed because of it...

All the best to you too xx

ExPat352 profile image
ExPat352

We found the old type memory picture cards you play with kids were very useful. Initially starting with 6 pairs in a uniform row and progressing over months to full box in a random mix, I was accused of cheating when I tried to place them in rows (to help me 😂). We also did lots of crosswords, sudoku and general knowledge quizzes. Jigsaws, jenga & Lego all brilliant for fine motor skills etc. Hopefully he can play some of the games with the children to give you a break & make him feel like he’s being dad too. Well done you, it’s tough but you have to keep going. x

Bethan23 profile image
Bethan23 in reply to ExPat352

Hehe I think you're allowed to cheat after what you've been through! :-)

We are enjoying quizzes, it's very fulfilling to see him improving in areas like this, he is getting quicker to think of answers and managing to play with the kids more too. He was devastated by the effect this all had on his relationship with them, but it is mending now.

Thank you for your kind words, it's nice to feel like we're all in it together! We don't know anyone who has been through anything like this so it's hard to talk about. x

leila65 profile image
leila65

Hi Bethan23

So sorry to hear what you have all been through as a family... My son had a TBI from similar in Crete end of July last year and had double craniotomy which he was on list to be operated on before all this happened. It sounds like your hubby is making great recovery in such a short time... My son was very lucky to be alive and has too made good recovery though has problems with speach and cognition though it has improved.

His rehab has been stopped and not sure whether they will resume it. For many months I was his only real regular support.. I helped him to learn words and did puzzles with him.. He loved suduko... And we did word search and I got some stuff from speach therapy.. We did writing and reading... And he was motivated to keep at it. I must say that has dipped somewhat and I felt it had become a struggle in the last month so I'm now giving him a holiday from it to see how he gets on.

He loves gaming and in some ways I do feel it's helped him.. Though I fear it's a distraction from facing what's happened to him too... Though moodwise he seems fine.

It's been a tough road however we are both slowly healing and I just try not to worry about what's ahead and take each day as it comes.

Happy to talk to you if you wish to share.Best wishes to you and your husband in his recovery. He is very lucky to have you.

Ley :)

Bethan23 profile image
Bethan23 in reply to leila65

He really is making great progress, however I find that when I tell anybody else that they think I mean he's back to normal and ready for work! it's good to come on here and you know what I mean! He's a long way off work ready, he hasn't left the house without me yet. Before lockdown I tried to get him to go in to a shop on his own whilst I waited outside but he was very anxious at the thought of it so I didn't push. I started to worry the lockdown will postpone a lot of his recovery and confidence, but he's home, safe and well and improving every day!

Thank you, your son is also very lucky to have you. I too am here if you want to talk about anything at all, even a change of subject.

Best wishes to you both, stay safe xx Beth

claretand profile image
claretand

Hi Bethan,

Sorry to hear your story, it sounds like your husband is making a good recovery. I suffered my TBI in December 2018, very similar to your husbands, a double fracture of my skull, an acute subdural haemotoma resulting in a decompressive craniotomy and a double SAH. My vocal cords were damaged due to the tracheostomy and I also lost my hearing in my left ear. My voice came back to normal after about 6 to 8 months. To help with my cognitive recovery it really was a step by step procedure, from colour by numbers in the early days all the way through to sudoku and memory training as by recovery continued, I downloaded memory games on the net and I found they helped me enormously, the alzheimers society have a extremely good site that help with brain training. I hope your husbands recovery continues to go well and yes like me he is a survivor. Good health to you both.

Bethan23 profile image
Bethan23 in reply to claretand

Thank you for sharing some of your story, please share more if you would like!

ENT think the hearing loss is due to nerve damage and not sure about the cause of the vocal cord paralysis. His voice improves later in the day, however really deteriorates if he needs to strain his voice at all, such as on the phone or playing with the kids... It would be great if his recovered on it's own gradually, although the brain injury team said he should be able to have simple surgery, I think they inject botox in to the cord, which will improve it quickly.

I shall have a look at the Alzheimer's Society, that's very useful.

Thank you, best wishes to you x

S21NTE profile image
S21NTE

Hi, our stories are quite similar. My husbands TBI was caused by a single punch, unprovoked, attack 2 days before christmas. I was with him. It put him in a coma, he had 3 bleeds inc a subarachnoid haemorrhage and a subdural hematoma. He had an evacuation and craniotomy.

My husband is an actual miracle and wasn't expected to survive. He had pneumonia, ecoli and sepsis too. After a week in a coma, 11 days in HDU and a week on a neuro ward he was transferred to a rehab unit. When he was there he had no awareness and also felt he was being held against his will! They worked miracles and he walked out after just 5 weeks.

Don’t get me wrong we have issues and more comes to light almost daily. It’s going to be a long journey.

We managed to start SALT before lockdown, it’s now being done over the phone with my help. We had been having private physio to try and strengthen his right side whilst waiting for the outpatient referrals. The neuro rehab hasn’t come through as of yet.

We follow a lot of the practices that were done with him as an inpatient. We write lots of lists and timetables. We do have work sheets but have also been given some apps to use from the SALT team. I’m happy to share. Word searches, sudoku, and puzzle books are good too. We play scrabble and cards to help get his brain working.

It’s difficult with the lock down but we manage to get through each day.

It’s very traumatic but I remind myself of how damn lucky we are to still have him.

Best of luck to your family and take care. x

Bethan23 profile image
Bethan23 in reply to S21NTE

Wow that is so similar! My husband was also only hit once and fell in to a coma minutes later, so scary how much damage it can do.

A friend of ours has been doing to work with him, he's a PT and helped people in recovery from strokes etc before, whilst waiting to be referred for NHS physio. He had an initial appointment with physio but the brain injury team had said not to do anything physical with them just yet, just get in the system, but they did a lot of physical things and he was in a lot of pain afterwards. I'd like him to see a neurophysio after the lockdown, or just keep with the PT instead.

That would be great to try the apps you mentioned with SALT, thank you so much. We've found some therapy sessions online, but never sure what is reputable! His consultation was over the phone with SALT last week and they said they'd send information over to do from home but we haven't received it.

We too feel so fortunate. it's unbelievable to think what a terrible state he was in just a couple of months ago. He seems pretty much back to normal to other people, but he and I see he is struggling a lot. It's good to come on here to speak to people who understand. I actually feel as though some people think we're milking it by saying it is a long time before he can work again etc! I appreciate it's hard to understand though.

One day at a time, especially through lockdown. I'd love to keep in touch and know how you are both progressing.

Stay safe, best wishes xx

S21NTE profile image
S21NTE in reply to Bethan23

Hi,

I’ve just sent you a message with some details. x

FlowerPower62 profile image
FlowerPower62

Hi, I think games and puzzles are really important. I make my husband do them every day! There's a free app called Lumosity, we were both doing it every day before his TBI, and we both still do it now. Another really good one is called Designs for strong minds, specifically for those with brain injuries, but had to pay for that app, about £30 I think, but we'll worth it. Wishing you both all the very best.

Bethan23 profile image
Bethan23 in reply to FlowerPower62

Thank you so much, I shall check these out!

Take care xx

PauseBeStill profile image
PauseBeStill

Hello Bethan, I also sustained a TBI nearly 45 years ago following an unprovoked assault and found the daily practice of mindfulness meditation has helped me.

Bethan23 profile image
Bethan23 in reply to PauseBeStill

Thank you for responding. My husband was a daily practicer of mindfulness meditation before. Although he's struggling to meditate at the moment the other elements of mindfulness have really helped us both a lot so far. I'm pleased it has helped you too x

Juniorbhoy profile image
Juniorbhoy

Hiya Sorry you have been through all this with children being at the attack!Our stories seem so alike. My husband was attacked 8Dec 19 and we were told that he probably wouldn't survive due to the head injuries he received.

My husband is now home also but only because he was due to transfer to inpatient rehab but it went into lockdown the same as his hospital ward. So we brought him home.

While the boneflap was removed my husband's brain shifted and caused paralysis and deterioration so the op to replace the skull was carried out 6 weeks after removal.

My husband has very limited speech, 4 or 5 word with a couple being swear words so we have no idea if he is happy, cold, hungry in pain! It's very very difficult every day trying to work out what he is saying to us and the frustration and anger he must feel is horrendous!

We are in contact by phone to rehab staff (although we have never met them) and we are attempting to try video call with them at some point as we feel this is valuable learning time that is being disrupted due to this virus. At home we have been doing jigsaws, and also preschool learning alphabet books as we need to start right at the very beginning again with my husband.

I have only posted once before looking for advice as we really are struggling with the lockdown as my husband doesn't understand why no-one visits him now but in hospital he had new visitors every day!

I wish you and your family the best of luck xx

Bethan23 profile image
Bethan23 in reply to Juniorbhoy

I am so sorry that you are going through this. It is truly devastating. It is even worse with the virus and everything too.

I'm pleased you are able to keep contact with the rehab team, and hope you get the video calls. You sound like you are an amazing support to him, it must be a very testing time for you but sounds like you are acing it!

My husband had a very rocky first few weeks, every day was different, some improvements then major set backs. Once he found his voice a bit more and he started to become a bit clearer of mind that really helped him to settle. I really hope your husband manages to improve in these areas too.

Do you have anything to work on from SALT? We had a phone consultation with them but they didn't sent to worksheets over. However, some of the people on here have sent me names of some of the apps that SALT recommend. i don't know if they'd be something you could use?

I am here if you ever need to chat, even if it's not about TBI's! xx

Juniorbhoy profile image
Juniorbhoy in reply to Bethan23

Hi Bethan

Thanks for your reply. Hope you've had a good week and your husband is improving by the day.

Can I ask what SALT is please? I've seen it mentioned a few times on here but as we are new I don't know who or what SALT is, but if they offer any help or support to my family especially my husband we will contact them.

Video call from Rehab through Skype went ok this week. Physiotherapist is an angel but obviously they only have a set amount for each person. My husband who can't communicate but trys his hardest seems to want to talk all the time about him having difficulty with his right side. He only say five or six words over and over, "hey how hun f**kin hell"

So most of the video call time was taken up with my husband speaking. It's all new to him and us so am sure we will find a way of making this work until this virus situation is over!

Obviously we are trying to encourage him to talk all the time so feel we don't want to tell him to be quiet while Physiotherapist shows him exercises. Catch 24 situation!

It's been very interesting to see the difference between your husband's recovery and mine when they happened within weeks of each other.

Every brain injury definately is unique.

I hope you and your family are well. #Stay Safe xx

Bethan23 profile image
Bethan23 in reply to Juniorbhoy

SALT is the speech and language therapy team. I suppose they'd need to be in contact with you to give you the appropriate advice and tools to try, but there are apps that they recommend.

It is very strange how different the recovery process can be. Ian is doing remarkably well, but I do fear he's a little in denial of his disabilities. He is adamant that he is back to normal really, but he still has a noticeably shorter attention span, can barely sleep, has very altered speech so may need an operation on that too, and is deaf in one ear. This all effects his confidence and now we're on lockdown I'm the only one who can go shopping etc so he's completely housebound, bar family walks round the block. I worry about this bringing up new confidence issues in the future, although I'm pleased he's getting lots of chill time at home with the kids...

It'd be great to stay in touch through this and know how each of them are getting on xx

Bethan23 profile image
Bethan23

Hi Teynboy,

Thank you so much for your response, it made me smile to know you have written a book together!

That is good advice, we are weary of the obstacles that lay ahead. At the moment we are on lockdown which is actually really lovely to be at home all together, the kids are enjoying it! But my husband will be delayed in all of his appointments, operations, and to simply go to the shop alone. I worry that confidence issues may come in to it (although he too feels invincible at this stage!). Then further down the line he will return to work in a very busy, very loud factory...

I think your book would be really helpful for us to read. Please can you let me know how to get a copy! xx

Juniorbhoy profile image
Juniorbhoy

Thank you very much for your words. I've not as yet called the helpline as we seem to be doing ok for the moment.

I read your introduction and thank god you lived to survive the tale. Must have been frightening to be told you are lucky to be alive. Best of luck to you xx

Flumptious profile image
Flumptious

Hello Bethan.

What a rotten situation - the attack itself, of course, but also Covid.

It is still early days - I was off work for eighteen months.

I need to keep very good records of everything that I need to do - I have a big 'To Do' list for work, and a detailed calendar, listing all the things I have to do each day.

Bethan23 profile image
Bethan23

Thank you, we keep saying we need to keep a diary. At the moment we have regular contact with the police, solicitors, GP, etc so that kind of feels like a log of everything! But lists are definitely useful. At the moment there's not much to write about at home!

I hope you are doing well now and staying safe xx

Bethan23 profile image
Bethan23

This is great, thank you so much. We'll check it out! xx

Lisamarsh profile image
Lisamarsh

What is the name of the book pls?

Lisamarsh profile image
Lisamarsh

Hello - I’ve only just seen your post from some time back.

What is the name of the book please.

My son (34) sustained a severe TBI back in 2019 and had craniotomy. He is a walking, talking miracle and for all intents and purposes “back to normal”. He returned to work 6 months after his accident but his personal life has fallen apart. His wife left him as she couldn’t/didn’t want to cope with him during his recovery - so he lost his home and daughter. He came back home to live with us (his parents). He went on to have a very acrimonious divorce where she took him to the cleaners financially and then a long drawn out child access court case over a 2 year period. His ex wife tried to use his TBI against him seeing his daughter. He eventually won the case and now has shared custody and his daughter come to stay every other weekend.

Unfortunately he lost his job as a contractor during Covid, and has since had to declare himself bankrupt at the end of last year.

He has been through so much stress over the past 3 years and is in a very depressed state at the moment. He is drinking, smoking and taking recreational drugs (weed) to excess. He drinks so much that he can’t remember what’s happened, and can get very aggressive. Last week he went on a bender and we couldn’t find him for hours. He eventually turned up with a black eye - he apparently had been jumped by 3 men who assaulted him - he was hit in the head (thankfully he was ok and no apparent impact to his TBI/plate.

As a family we are desperately worried about him. I believe that he is on the verge of a breakdown - he looks terribly fatigued, hardly talks and will not socialise, comfort eats to excess so much so that he has put on so much weight that he is now 20 stone, is so short-tempered and quick to anger, and had not interest or compassion for anyone or anything. I am really worried that he is giving up and will end up doing something to hurt himself. I don’t think that he had ever come to terms with the accident and the effects that the TBI has had on him and his life. I feel like he thinks he is invincible and it’s like he’s got a death wish as his behaviour is so scary.

Any advice you could offer would be appreciated - thank you

Lisa

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