Hello. My husband had a brain injury on his brain stem. He stayed on ITU in a semi coma for 4 months. For the past 8 weeks he’s been in rehab. The most distressing thing is that he often seems disorientated and has a poor short term memory. Also he gets fixated on an idea which isn’t true but can’t be persuaded. He doesn’t seem himself.
Does anyone else have similar experience please?
Hiya Rayoflight123-
I was in hospital for just over a year after a bleed in brain stem due to an AVM. 4 month ICU etc.. & 8 month rehab this happened in 2012 & to this day I still get disoriented, confused and short term memory is shocking, I’m also a bit OCD since my bleed, it’s taken some time to get used to the new me and to live with my disabilities but I’ve finally accepted myself.. HealthUnlocked is a good place to get info of other survivors, relatives, spouses and to just vent off, people here understand 😁
Hello Rayoflight123- I can only go from my experience with my husband apart from he has had all home rehabilitation from March 31st 2020 the hospital was is a right state dealing with first news of covid and pandemic they had low staffing and husbands heightened behaviour from leaving ICU with short stay on ward, then transferred to local hospital again low staffing and obsconding became worst, police found him. At that part from being on life support to bizarre, risky behaviour with fixation and his thoughts at that time he believed he was right, was infact post traumatic amnesia it was solid for 4.5months but traits went in November 2020. The brain injury team involved would never give timescale when this post traumatic amnesia would go. The nearest I could describe was horrible case of dementia. My husbands home visits from brain injury team finally back on this month as lockdown in January prevented support. We have survived our first year and he has short term memory, behavioural difficulties, poor fatigue, hearing difficulties, word finding difficulties, still has stroke symptoms on left side but he is mobile. Our friends and family walked away May 2020 they couldn't handle. I've been on my own with 2 young children, working and caring full time. I was lucky to be diverted to this forum from Headway Nurse as my only support to get advice, put my thoughts in writing. I hope you have support, I wouldn't want anyone to be in same position as me. However, I feel very lucky my husband is progressing well from being on life support, and now starting to cook with supervision and we've adapted and adjusting living with TBI.
Dont feel this is has good as it gets just yet, it can improve, progress is very slow but I smile and feel positively with each progress he makes. Alot can happen in 12mths.
All the best and keep strong.
Hi. I think the Headway helpline could give you good information, help and support. They have a great deal of experience with all kinds of situations. Their number is 0808 800 2244. I do hope things improve. 🌸
I’m having a similar experience to you. My husband keeps obsessing about remembering a cat that doesn’t exist. He is really upset about this cat and really thinks that I’m being dishonest with him... however, finds it funny that he doesn’t remember his young kids names or birthdays!
I hope it gets easier for you xx
When my husband came home, he didnt know or acknowledge the children. 6th week home it was like a switch, and unexpectedly said I will change her nappy; our daughter not long turned 2. Its scary that PTA stage, yet he was able to test the internet speed but got ridiculously obsessed and took every wiring from house inside and outside, then several weeks later realised what he done, whilst I'd been trying to get through to provider. 13months later obsession on internet speed test, he does multiple times a day, he kept obsconding to a pond fill and land refused as roads from 30yrs ago. Even now if he thinks something happened or I cant get my mystical ball out to correct; it's happened no matter how I try to correct him.
It's crazy journey were on now, I can laugh at some of his comments or actions because it's just bizarre but many makes me cry and feels were only just touching surface to keep progressing and further away than I realised.
Stay strong x
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