New_beginning

My husband (41) sustained TBI, ICP monitor life support when he came round didnt know who I was, day 8 ng tube and other tubes removed put on ward in March 2020. Post traumatic amnesia (PTA) put on DOLS i was told he couldnt come home, required 24/7care he was mobile, delusional thoughts (went end of July) he kept obsconding like he was in some action film. However it was his obsconding that won me getting him home (we have 2 children). They couldnt keep him safe and they knew they had bo staff capacity peak of virus.

What we have been through, you couldnt write. I put us all at risk bringing him home, no support not even from family/friends. We are 7mths now hes doing brilliantly, exceeded all expectations. We are a long way still managing behaviours, managing fatigue (stroke symptoms), memory, word finding. I took 6mths off work to provide 24/7 care. But now back at work full time juggling. (its impossible).

I carried out all his speech and language, physio, being his therapy, being and still continue to be his emotional punch bag. All meals homemade to manage muscle waste, behaviour, fatigue and he has now put on 3 stone and maintained, he was so thin under 10st leaving hospital. He was on 16 medication leaving hospital took 15weeks to wean him off with GP reviewing (that was risky managing behaviour in itself).

We have one visit per week from clinical psychologist to check in how we are, as i also continue to be his occupational therapist.

Were at the early stage but you have to prepare yourself, its going to be physically and emotionally draining youve never experience before when or if you bring him home.

I dont have no answers, i dont know what path will occur for you. But this just a tiny glimpse im afraid.

Why i took the risks, i know my husband is there, my heart and head concluded the professionals rationale on his prognosis didnt sit right and I have hope and my decision making despite the trauma that will be forever with me of our experience I made the right decision.

I love my husband to the moon and back, im a wife on a mission.

Good luck x

jodac

I too had a TBI,ICP and DOL on me I woke thinking I needed to go home and go to work .I had 2 12hr guards because I too would wander because I needed to go to work the fact I had skull fractures facial and rib fractures and a wrist in a cast didn't matter it's the delusions at the begining but they wear off so hang on there and stay strong for him my son did for me even though I didn't know him at the beginning but it worked he made all the right decisions

Hidden

All I can say is doctors dont know everything.

Time heals..how much..cant tell u as we r all different n different brain injuries ?? Hope is huge.Love n support is huge.Be by his side,love him,n let time tell u the rest n what will be.

I was told I would never get out of a wheelchair n etc etc etc..Well I'm not in a wheelchair 24/7, n is as needed PLUS I can do everything they said I couldnt.

Lynd

This is a common behavior and can last for several weeks. My Husband thought he was at work, in a hotel, on holiday.

It is very upsetting.

We are two years down the line and life is much better and we have a pleasant enough life together but there will be quite a few hoops to jump through.

Stay in touch and let us know how you are getting on and if you have any questions please ask x

Lynd

Also if you look for Headway website they have a lot of reading material and they are great to talk to.

Try to read as much as you can to enable you to get a grasp on it all.

Two weeks is so early so take everything a day at a time.

Marnie22

I would advise you to call the Headway helpline. They will be able to support you and give you information. They have helped me a lot. The number is 0808 800 2244.

I wish you all the best.

🌸

cat3

Loulau, assuming your partner is under the care of a a neuro team, I'm puzzled to hear there's been a prognosis after only two weeks.

Neuro specialists are often criticized by concerned relatives for refusing to speculate on long term outcomes of brain injury. But they're not being obstructive ; it's simply too difficult to predict the long term outcome of serious brain injury, and a hasty prognosis could offer false hope or unnecessary anxiety.

I hallucinated and told bizarre stories for weeks after a bleed on the brain but my family were told it was too early to reach conclusions and only time would tell what the final outcome would be. I was lucky and (in the consultant's words) 'Turned a corner virtually overnight'.

Don't give up hope. Keep reinforcing your partner's need to stay in hospital whilst reassuring him of your love. Plenty of physical contact such as hand massages and stroking of the arms can be very comforting and help calm agitation.

Ask to speak directly with the consultant about the basis of information you've been given so far. And phone the Headway helpline after the weekend for extra support and printouts of information on hypoxic injury. (Helpline no. freephone 0808 800 2244).

........hoping your man's condition will gradually improve in time m'love. Please stay in touch. Cat x

absa

i suffered a hypoxic brain injury from cardiac arrest. they told my family i would likely be brain dead.

but here i am working full time in public accounting, lifting weights, running errands... living life like nothing has happened.

loulau02

Thank you so much for your words all. I truly hope my partners situation will get better from now on.

However, he now seems to be getting more and more agitated to the point of agression. His docters will only allow people near him is we call beforehand, because we seems to trigger too much emotion in him.

Only his first line relatives are allowed to visit in te afternoon, and simce we're not married, I am unfortunaltely refused at this point..

It hurts me so much that I will hardly be able to see him from now on. I hope with all my heart he will progress to a point that I can resume regular visits..

Once again thanks all for your kind words of hope xx

absa in reply to loulau02

they had me in ankle restraints, wrist restraints and a posey vest, because apparently, i was trying to fight everyone, and escape the hospital.

so please don't be discouraged.. im not sure i was even aware of anything at all in the first 2 weeks. I know for a fact that i was staring blankly at the wall for the first week after they brought me out of my coma - hence the reason they thought i was vegetative/minimally conscious.

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mp3mills

We are 16 years post hypoxic brain injury due to cardiac arrest. He spent 3 months recovering before being discharged back home. He has very little short term memory (5-10 mins on a good day) and therefore isn't safe to leave alone.

There has been no improvement since the day he came home but we have learned to live with it and had many laughs along the way when things have gone slightly wrong.

It is still very early days for you and Headway told me that most improvements take place within the first 2 years of a brain injury, so only 2 weeks I would think it would be very hard to say what his prognosis will be.

Keep looking for improvements and keep a diary if it helps.

Sarbear123

Hi loulau, my husband suffered an anoxic injury from sudden cardiac arrest aged 36. For about 9 weeks he had very little grip on reality. Was imagining things (confabulation it’s called) had zero memory. And was totally disoriented to when and where he was. He didn’t even recognise me intermittently and we were together 17 years.

It’s now 15 months later and he’s back to work full time. Memory is still a challenge but it’s soooo much better than it was.

There is no way the doctors can give a prognosis at this time. He is young and the brain can rewire itself at this age.

Feel free to contact me with any questions x

Orleans1011

Hello I have been in the same situation. Time and intense therapy is what is needed. It is a blessing he can do all of his daily activities.

New_beginning

How are you and hope in such difficult times things are progressing for your partner.

loulau02 in reply to New_beginning

Hi.

He is cuurently in a brain rehabilitation unit. He has made quite some steps since hospital, but he now seems to have plateaud.

His doctor is suggesting looking into a closed assisted living facility for him, because she does not expect him ever being able to live independently again..

He has virtually no short term memory and is extremely impulsive (is in the shower, sees his toothbrush, starts brushing his teeth and forgets the shower for example).

The only thing he wants is to come home. He doesn't understand why he is there and doesn't think he has an injury. Sometimes also still doesn't even know he's in a rehab unit. He just begges to come home and threatens to walk alway or harm himself when told this isn't possible (hence the doctor's opinion on finding a closed living environment).

It's such a sad story for such a young man. I still cry my eyes out every night and miss him so much. I still hold some hope he might improve further, but his chances seem to be diminishing every day.. It breaks my heart

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New_beginning

I feel your sadness, but i wonder if lockdown, no visiting,not seeing familiar faces have impacted. I truely hope when this awful virus eases, and visiting commences this supports familarity with him which i really hope makes positive impact on his recovery. He must feel so frightened waking up with changes in himself nevermind waking up to such dramatic changes with how things are.

Dont be diminished on hope yet recovery and rehabilitation takes years, stay positive hes a survivor and will just take a bit longer due to restrictions. X

loulau02 in reply to New_beginning

Thanks for your reply. It warms my heart.

Where I live I am allowed to visit him, so in that respect I am quite the lucky gal.

It's just sad that these are very short visits with no option of participating in his therapies. But I'm happy enough that I still get to see him once a week and take him out for a walk (or just eat something nice I bring with me, this man loves his donuts).

I will always stay positive! Thank you once again. X

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New_beginning in reply to loulau02

You are lucky to visit him, that wouldnt happen in UK, and how lovely you can go on walks especially going via first post. Yes it is daunting at this current stage but loads of progress has been made. His rehabilitation plan should be shared to support progress and medication reviews to help with development.

Yes you stay positive it certainly gets me through the day and were nearing 11mths with my husbands TBI, you have to remain strong your his protective factor, yes life will not be the same, but you work with TBI to ease heightening emotions and behaviours, and rehabilitation should be providing strategies how you can manage these aswell.

All the best x

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