My partner appears to be minimally concious. He fiddles with wires attached to him but spends some time searching for them with his hand. He can’t move anything else at the moment and sometimes looks at you but often gazed past you.
He has suddenly got more distressed, elevated heart rate all through the night/day and is that scared he arches his back. The hospital has had to sedated him to calm him he was that distressed.
Please has anyone experienced things this bad? Did you or your loved one get past it? How long did the phase last? Did anything help?
I’m worried that having to be sedated is setting him back as he then cannot respond/ progress. Before he was just fiddling which could be dealt with. But I’m worried that no one can live with the amount of distress he is in.
Please help.
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Loveandcats
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Sounds like post trauma amnesia? They sure don't show you this in the movies do they. When I think back to my ex partners journey, this phase has scarred me the most. From him 'waking' from the coma he would thrash about his bed 24/7 that he needed one of those padded beds. I too wondered how this could possibly help in his recovery, there were times he needed sedating too.
As he progressed about 3 wks on and was walking around, he would fill a carrier bag with anything he could find and try to find the exit, but he looked.... crazy for want of a better word and would have that look you described. Like living hell. When the trachie came out and he could talk, he would describe there were fires, car and plane collisions outside his window and even an airport was being built, hallucinations.
There was a time he was flirting with a HCA and was calling her by name, when she would say no that's her (points to me) he would laugh and tell me to leave.
It then dulled to just confusion, like what day, time, night time, why he had to be in rehab, why I never visited (i did, every day) why i was leaving him.
Lasted in total around 3months, however the part where they are distressed didn't last that whole time, perhaps a month.
I wish you the best of luck and try to take care of yourself as unfortunately you are both still in the early stages. I know when people would say that to me i didn't appreciate it but in hindsight it's true.
Your partner's brain will be fighting to recalibrate by engaging healthy areas to take on the functioning of the damaged ones. So even as you're sitting with him, observing his odd behaviours, his brain will be busy searching for new pathways. And that process can continue whether he's asleep or awake.
Emerging from coma after brain injury is tantamount to a re-birth and re-discovery of the world around us, so fascination with the most insignificant objects is all part of a recovering brain's re-learning process.
During the early stages a great deal of our surroundings make no sense often causing frustration or even distress. It can take weeks or months before rationality returns as new pathways are forming.
Many of us needed to re-learn walking/talking/swallowing/toileting and, though it's upsetting for loved ones to witness, it's a natural but painstaking progression from a comatose state to a functioning, compass mentis one.
Still early days (my family hated those words, and tormenting for you I know m'love). Stay strong by looking after yourself .......and keep talking. We're always here.
My husband was the same in March 2020, once they attempted 5th to bring him round time 5th day on life support he didnt know who i was wife of 19yrs this year (married in teens) by day 2 restrained, sedated, day 3 restrained, mitts, sedated, day 4 of coming round wanted to go home, day 5 onwards just wanted to escape under DOLs then did escape he had PTA (info on Headway website) Day 16 with covid at peak, no staff i challenged hospital to bring him home rather residential rehab home. Weaned him off 15/16 different meds over 15wks im now 5.5mths still at home i refused residential few times with behaviour and its paid off. Now working on independence skills, no cooking though as memory poor. Its going to take months/years working with TBI and the health conditions, but with structure, rountine, consistency has helped.
I have more bad days than good, the behavioural side difficult emotionally and physically as now im his full time carer, 2 young children but due to return to work shortly. I have no support and i do not know what the future holds, but what has works for me is fear, hope, and hoping the home rehabilitation ive put in brings balance with working with TBI. Our little family will not be the same prior March, but i will make it work.
Just prepare yourself dont show any negative, sad emotions infront of your partner can be a trigger with constant confrontation, horrible words hurt, i cry now thinking about it, but remember its not them.
If you need to talk. I’m 31 years into the caring role, had 2 small children at the time too and found it better to get him home . So I understand some if what you’re going through,
This is extremely distressing to watch but very common and often a phase that passes. Google the Los Rancho Amigos coma scale, it describes all the stages post brain injury.
My 15 year old son suffered from a TBI 5 and half weeks ago when he fell from a mountain, his agitation started around week 2 into recovery. The agitation and confusion was so bad that the nurses had to take the bed out the room and put mattresses on the floor. He would try and pull his ng tube out, situp and move to the end of the bed, try to climb out the bed, he was so disoriented . He had a fractured collarbone, rib and broken arm and a wound to his head, that we needed to protect. He was very strong and is 5ft 9. He hated us trying to Stop him, and would get more agitated. Sometimes he would speak random words, and like your partner have a glazed look in his eyes. The doctors tried various sedations but nothing helped - it made him more agitated. He hardly slept for around 5 days - thats when the team decided to take him back to HDU. On HDU an IV line was attached to him to sedate him. This worked for around a day - and then his agitation hit the roof. Myself, my husband and a nurse stood at his bed for 8 hours trying to control him. It was the most difficult period of recovery. That day the neuro team decided to put my son on a ventilator to help him sleep and rest his brain. He was taken back to ICU. It just seemed like he was going backwards and not progressing at all. It is mentally and physically exhausting. I dont think I have ever faced such a challenge in my life.
He stayed in ICU for around 10 days in total- was ventilated for 3 days. His agitation reduced when he was excavated. However- it was still there. I kept being told it will take time - no one can tell you how much time. Its horrible. I know exactly what you are going through. As the team started to reduce the sedation, the agitation would spike up again, the team finally understood that my son would need to be taken off the sedation meds slower than normal. It was around the 4 week point where we started to really see a reduction in the agitation- he started talking more, and being agitated less. There was still some moments of confusion- but not as severe as previously. A few days after my son was able to start eating have normal conversations ( speech was a bit slurred), but was able to tell us if he needed anything etc.
The doctors expected his recovery to take around 12 weeks. Since the agitation phase has finished - he has come on leaps and bounds. He is so determined to get better - he has learnt to walk again ( still a bit wobbly), but it took him 5 days from having to hold the physio for balancing, to actually taking steps. He is able to take himself to the toilet and shower as well.
My son is literally what you call a miracle - the doctors could never have predicted his recovery being so quick. They are looking to discharge him in a few weeks.
i know how heartbreaking it is to see your loved ones go through this stage - try to stay positive. Try to repeat your words. I would hold my sons hand and tell him he was safe, he was in the hospital and he was doing really well. I would be on repeat all day just saying it again and again - but it would help him and calm him when he heard me say it.
Please be assured it will end, and he will come out of this stage, but no one can tell you how long it will take.
I pray he is better soon, take care of yourself. I think someone mentioned the Los Rancho scale - i would read that every day to help me understand what stage he was at, and what to look out for in the next stages. Im here anytime if you would like a chat. Take care x
Dear Loveand cats, I joined this Hub today. Please keep strong. I am caring for someone who cant move anything but his eyes at the moment. But I know he's trying to. Best.
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