Is anyone there?: I've been to see my partner today... - Headway

Headway

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Is anyone there?

123Bereft profile image
18 Replies

I've been to see my partner today, he spent the first half an hour playing with my hand as if he'd never seen one before, still didn't look at me, was then fiddling with his gown and looking at the pattern, then he was trying to pull my watch off, it was quite disturbing, it was like he needed a toy to play with. It still felt like he didn't react to me. He is now four and a half weeks out of induced coma. Has anyone experienced similar?

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123Bereft profile image
123Bereft
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18 Replies
Loveandcats profile image
Loveandcats

Hi, my partner has now started doing the same! He found his way to the wires attached to him and tried pulling them off. It’s like his hand shakes and searches for things in a slow confused manner. Nothing will stop him doing it. Its like all he can think is how much he wants the wires attached to him to come off. I personally think it’s them maybe trying to make sense of things? I could be wrong, but I just feel like my partner isn’t fully conscious, but knows I’m there, and is trying to make sense of the things that he can feel as it seems to be all that he is currently aware of. I’m glad you’ve been able to see him, and I hope you’re doing okay. My situation hasn’t changed with the doctors since we last spoke. Sending you and your partner my love

123Bereft profile image
123Bereft in reply to Loveandcats

This is exactly how how was, I had to keep stopping him from fiddling with the wires, at times he was shoving my hand away. Thank you, I'm thinking of you, take care.

cat3 profile image
cat3

I feel for you so much.

Even all these years later it still hurts thinking of my son and daughter's ordeal as I lay oblivious. I started to re-engage with reality at around the 8 week point, but was told my rate of progress was 'surprising'.

So there's every chance of a turnaround for your man. After fearing the worst for weeks, my family were suddenly greeted with the words "She's turned a corner" .......and the rest is history.

I really hope your partner turns that corner soon m'love. x

cat3 profile image
cat3 in reply to cat3

I've just read your comments about pulling out tubes ; I had to have my hands heavily bandaged to prevent me pulling mine out repeatedly !

123Bereft profile image
123Bereft in reply to cat3

Yea, he's wearing a big glove, but I asked them to remove it so I could hold his hand. Thanks Cat3, your replies always give me hope.

Baldiarch profile image
Baldiarch

I've pretty much recovered, (at least as far as I'm likely to now...) from a severe brain injury, sustained about 20 years ago, and i can recall having pulled tubes out of my arms, in the early stages of recovery, or at least I can recall having been told that I did....

I can also recall being incredibly confused about where I was, and what I was doing in hospital, with feelings associated with the frustration of being there, and having limited mobility, and, so, maybe pulling tubes out of one's arms is just an expression of those frustrations..?

I was so confused, initially that to verbalise my frustrations would also have been difficult, even though I could stilll speak...

I hope that's helpful?

I agree with cat3 sometimes the ordeal for partners and children is worse as we are oblivious to what's happening, I too had mitts when I first started coming round I kept trying to pull the tracheal tube out when my son sat with me the mitts came off and he like you held my hands but when he left he'd worry when I look back on it now I realise how hard it was for him but I also know that he loved me enough to do it which gives me peace so you keep doing what your doing it will all work out in the end,best wishes

cat3 profile image
cat3

Further to Jodac's remarks I felt I should mention how, along with dreamlike memories of discomfort, the only other vague recollection I have is of someone performing reflexology on my hands & fingers, and the release from agitation.

My daughter described later how my son would unwrap the yards of bandage from my hands and massage them throughout the visit.......then rewrap them on leaving. It was only after discharge that I recalled lovely dreams of 'someone' massaging my hands, and I became quite emotional on learning it'd been for real.

I thought I should mention how these simple acts can be so comforting and reassuring, and apparently memorable..... x

123Bereft profile image
123Bereft

Thank you for your replies, he did seem agitated, I think it upset me because none of his actions yesterday seemed like they belonged to him, if you get me. I love him and miss him so much but I know now, mainly from here, that it's a very long road. Take care all.

Hi, yes my dad was the same. Mostly he kept pulling at his gown and lifting it all the time and we think he was agitated by the catheter but he doesn’t remember any of it now. He was so confused and often ‘not there’ in the first weeks after he came round. There was a long period of delerium when he believed he was in different places as well, which slowly receded but it really did take months. I’m moved by Cats recollection of feeling touched during her recovery. My dad doesn’t remember but I would also massage his hands and feet every day to keep joints moving and blood flow because I was concerned about the impact of being immobile for so long and it’s made me feel as if he would have been aware even if he doesn’t recall it. Whatever you do for him, it will help in the long run. Familiar smells and sensations will encourage memory. If he’s touching you and trying to make sense of his surroundings he’s definitely there. Take heart and have patience. Julia

123Bereft profile image
123Bereft

Thank you Julia, your reply feels so reassuring, I'm so hopeful but also so scared.

Bradybunch35 profile image
Bradybunch35

Hi

I’d say all of that is normal.

My husband was very detached and thought aliens were coming into his room.

I always tried to speak to him as normal and when he did something weird, which was every 2 minutes, said don’t do that darling. Love is crucial, I thought he was childlike in a mans body. I knew he would grow new neuro pathways so just thought of him as forming a new brain. It was the only way I could relate to what was happening.

He has made a wonderful recovery, very poor memory, we live a normal life as best we can. It’s different but ok.

123Bereft profile image
123Bereft

Your right, and that's how I've been dealing with it too, thank you for your reply, it all really helps.

Shushy profile image
Shushy

Yes - my husband is now 31 years post Injury but I remember how disheartened I felt when he was first awake. I was left thinking ‘is this what we’ve prayed for ?’ He was disconnected, didn’t remember anything, and pulled out tubes, catheters, anything that felt strange. He was tired and didn’t understand anything that was happening around him. Now I realise that he’s brain was was only just started to recover - it was actually very early stages, even though it seemed to have gone on for ages. I think we get so badly misled by tv and films showing people waking up, saying ‘where am I?’ , and making a miraculous and immediate recovery. If only real life was like that ! (Have you noticed how glamorous people in comas look on screen too) .

Give him time, do all the things that people have suggested, read to him when you run out of things to talk about, take in photos and music to help his memory. Try not to get too upset as he won’t understand. Look after yourself too.

Things will improve I am sure x

123Bereft profile image
123Bereft

Thank you, I am so thankful for this forum, being able to get real answers from people with real experience.

Purplelover25 profile image
Purplelover25

Hi

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 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.

123Bereft profile image
123Bereft

Thank you, I've learned from here things that none of the Drs have told me.

plc38 profile image
plc38

I was in a coma once. This was for about sixteen days after my RTA following a cycling accident. This was nearly 25 years ago though. My senses recovered fairly gradually and my immediate long-term memory never completely recovered. The car impacted on my right lower leg. Most of my visits to clinics have arisen from the damage to this area, including a foot drop.

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