Log in
ICUsteps
3,128 members908 posts

He's not the same anymore

Hi there

My hubby went into a coma, 7 days which is not as long as some I know. He's recovering well only he just seems to have lost his personality. He says sometimes he is low but most of the time he just feels normal but different.

He doesn't smile or laugh is quiet and says he's not feeling depressed (again some days low)

I keep telling him from other stories it looks like it takes a while to get back to normal. But I've also heard some people just loose a piece of themselves for the long haul. I don't really know how to judge it. Physically I can see improvements but mentally and personality he's just different altogether. He was the loudest person in the room previously and now a shadow of his former self.

Did anyone experience short term a similar situation or indeed long lasting personality change?

I am here for him regardless I just don't know what to tell him. He says "I was only in a week" and I say that is long enough to expect a long recovery.

He's just different in his personality even on his good days and I miss him so much. We as a family are going through it with him. He had pneumonia and sepsis and I found him dead on the bed so I am just happy to have him here but I am also struggling so much.

Any similar stories out there? From a wife's perspective maybe also? I'm struggling so much x

27 Replies
oldestnewest

I was 10 days in a coma and a total of 32 days in ICU. I lost 3 stone and had terrible memory issues for many months. My short term memory is not as good as it was but to be honest the first few months I was worried I was getting dementia? It is not uncommon I understand that a form of PTSD can occour?

I still have vivid memories of my stay in ICU in 2008 and what I call my second life that was in no way normal! I can only speak for myself, I did find talking about how I was feeling and what was going though my head no matter how strange it was helped me.

I did find doing suduku improved my mind as a distraction and a brain exercise.

Be well

Reply

Thanks for your reply. Yeah I try to talk as much as possible to him it's hard as he's away with the fairies sometimes I wish I could help him more

Reply

I had a similar experience 3 years ago, had pneumonia and many other complications, spent 2 weeks in an induced coma and a further 6 in ICU. I can totally relate to how your husband feels, I too suffered similar issues with feeling low and being quiet. I guess the body and mind deals with stressful health situations the best it can, I think it goes into some sort of safe mode as a coping mechanism.

I fully understand what you are going through my partner had to endure my moods and quiet periods.

It's taken a long time for me to recover but I'm getting there both in body and mind but it can take time.

You're doing a fantastic job, try not to worry too much, you are there for him, make sure he knows it, give him cuddles, it all helps, it did for me.

Wishing you and your husband all the best x

1 like
Reply

Thanks so much. How long did it take for you to feel a bit more like yourself? In your head? Or do you still not have your old self back?

Reply

I think probably about a year before I felt better in my own skin but deep down I know that there is a part of me that is missing/lost that I don't think I'll ever find again

Reply

Thanks for letting me know..that's scary cos he's waking up crying and very depressed now most the time really bad insomnia and I just hope for him that gets better sooner rather than later. Got a check up with ICU tomorrow so will have a chat with them thank you

Reply

I've been reading a lot that many patients who have survived ICU have come out with some form of PTSD, although I've been too scared to get properly diagnosed I think the symptoms ring many bells with me. I would speak to your GP or ICU about this as a possibility.

Also I have a lot of feelings of dissociation and regularly shutoff emotionally, perhaps as I said before it's a coping mechanism but I think my partner finds this hard, she either thinks it her or thinks I'm being in a mood. Which I suppose I am.

Regarding the insomnia, I had this really bad when I left ICU and finally got home, it went on for about 2 years, and was fixed by being diagnosed with sleep apnea, so now I have a machine that helps me breath at night. I've had this for about a year and this has made such a difference to my wellbeing, although the dreams I have arent exactly pleasant !

I hope you get some answers from your checkup, let me know how you get on, good luck and all the best

Reply

Thanks. He's already got sleep apnea from before he was ill he used to fall asleep all the time without wanting to, now he can dose during day but night he is awake with really weird thoughts. Says it's like he has two brains and the thoughts are filtering from one brain to another before he can get rid of them and then another thought and another etc going through this weird filter system in his head. Bless him I will have to work it all out tomorrow thanks so much

Reply

It takes 10-14 days to recover from everyday you are on ICU. It also takes along time for all the sedatives & effects of the medication & effects of the condition that brought him into ICU to leave system fully. Often because organs are not working at peak, it takes longer for kidneys & liver to do job etc patience is the name of the game. It took me months to get back to the new normal

Reply

Yeah I had heard that so I keep telling myself not to worry too much and that he may get better in himself after January or something. Thing is he is super stubborn, really bad at decision making nd I feel like I'm nagging him then I feel terrible for it. It's tough thanks a lot for your reply great help

1 like
Reply

This is isn't a wife's perspective, but I hope it may help. Two and a half years ago I was in a coma for much longer and I know exactly what you mean by "Some people just lose a piece of themselves". Some days I just feel dissociated, as if I'm not quite there. And one of the frustrations is that it's so hard to explain.

But this is becoming rarer, as if parts of this "lost piece" (i.e. me) have been gradually returning – and this is a good feeling. Good luck.

1 like
Reply

VIDEODRAGONS How long has it taken you to start feeling like the pieces were coming back? Thanks so much, he completely dissociated like you say and he is aware of it which makes it worse! It's a bit like what you don't know can't hurt you but he knows and I imagine it's really tough. Thanks so much

Reply

I'm afraid it was about 3 months before I felt things taking a turn for the better. Luckily I managed to get help, via my GP, from a psychologist, partly because I had suffered for a while from ICU psychosis. I would certainly recommend exerting some gentle pressure on the GP to arrange help – and I think you're right to emphasise that a week is definitely long enough to cause major problems. The poor old brain takes a terrible knock when it's in a coma and I'm not sure that a week is so different from a month or two.

Reply

Thank you I have been on the case with everyone he also has other health problems chronic pain and stuff so it's busy busy busy thanks so much

Reply

Sorry to hear that. I no what it feels like when they start talking about further complications your just in a very dark, emotional and stressful place. I would talk to hubby for 8 or 9 hours a day I was told that he got sepsis etc and I felt it would never end. To be honest I count my lucky stars everyday and I am grateful to all the staff they were amazing. I really hope your dad gets better but I definitely will say it takes what feels like forever then all of a sudden they start talking about waking them up (I really hope that happens soon for you) be strong and patient and thanks for your reply

Reply

I was in a medically induced coma for 14 days for very severe pneumonia. When I came out of the coma I was a shadow of my former self for awhile. (This was this past April). It was because everything was such a physical challenge. Even climbing a stair or getting into bed or dressing required huge effort due to the muscle atrophy while sedated. Also, I had to retrain my brain to remember things again (like names and addresses) and it was scary. So I was so concentrated on all of that, I was not able to really connect with others around me for awhile. Now, I am doing MUCH better (6-7 months later). So give it time.

Reply

Thank you. His memory is not as bad as when he first came home that side of him is 'ok' but not fab. It's good to know that you did indeed start feeling better within the average timescales they talk about. That would mean in the new year he may well get back to himself. Physically he's actually progressing albeit slowly x

2 likes
Reply

I was in icu in a coma for month,had a ytach,feeding tube,had to relearn to walk..Your hubby just went through a traumatic experience and he’s most likely experiencing a form of ptsd like I have. Your body just kind of shuts down trying to protect itself,or you get lost in thought trying to block out and at the same time remember the bad stuff. He will get better with time,just be there for him and be as supportive as you can!

Reply

Thank you xx

1 like
Reply

Sorry to hear about your husband's after effects of his sepsis. It is year ago this week I was in ICU in an induced coma for a week after sepsis following a bout of food poisoning so similar circumstances. I found I lost confidence as previously thought I was wonder woman and invincible. It has taken ages for me to 'settle' and even now I have moments when I feel not quite right. I had lots of hallucinations caused by the drugs presumably and for ages was seeing things that weren't there!! I'd make a terrible witness!! I was totally convinced there was a huge spider in my bathroom but it was a knot in the wood I'd seen for twenty years for example. I think an alpha male would have trouble with this adjustment!! Hopefully with patience he will get back to how he was though such a huge near death experience is likely to be a life changing. I am physically stronger but think emotionally I need longer. Stay strong. X

1 like
Reply

God that's crazy glad your well, yeah alpha male he certainly is.. no hallucinations though thank goodness. Will take time from the sound of it thanks so much. At least we were able to save him thankful for him being alive it's been the worse thing we have ever been through

2 likes
Reply

My husband was in induced coma for 2 weeks, and he spent 3 weeks in a ward. He had to learn to walk again, as he lost a lot of physical strength. Just like your hubby, physically he was doing but emotionally scarred for good few months. Also, my husband was growing a business right up to the time he got sick, and he almost lost everything. Basically, he had to start from zero again with his business, due to the long recovery thus causing a lot of his clients went elsewhere (I don't blame them).

Also, the effect of drugs during ICU stays can impact them for a long time. My husband remembers a lot of gross and vivid dreams that happened during coma, that he thought he had gone crazy.

In our situation, we reached out to get support from families, friends and our local community, and the help was tremendous! It enabled us to feel like "we can do this together! " My husband felt reassured and it restored his confidence that he is not alone. I, too, felt the same. Talking to others helped us a lot. Sometimes we cried when I re-told the story but we feel much better afterwards. I guess everyone deals with this kind of thing differently. Best of luck with everything.

1 like
Reply

Glad to hear it's getting better . We did talk and had a cry and he has since been told a couple of friends have been through the same which is horrendous but good to hear from others about it. Just a waiting game I suppose... thanks for letting me know if appreciate your story

Reply

Are you in UK? If so look up your local ICU steps support group.

I was in coma for 14 days in Feb 2016, I felt like it was decades, and the mental trauma, I struggle to describe now, but let me tell you, it felt real, it felt long, it was the most terrifying experience of my life.

I also spent a further 3 weeks on a renal ward, I was 38 at the time, the breadwinner for my family, a woman with a sparkling career, and I lost everything about me apart from 95% of my personality.

Year 1 physical recovery, year 2, trying to put on a brave face because everyone says “you look so well” and inside you’re screaming I’m not, everything hurts, I’m so damn tired all the time, I have no energy for life, why did I even survive this to live within a bubble of reality. I spent my first 3 months out of coma thinking I’d died, and I told everyone this, because 3 months in real life was nothing compared to 2 weeks in a coma.

Each anniversary is bloody hard, so take his mind off it as best you can. Like me and many others, he may well have PTSD, so speak to someone who can support. As someone who has PTSD, I feel a fraud compared to the service men and women and front line emergency services but in my coma, the visions smells sensations and feelings were horrific and scary and my brain shut me down to help me cope with what my head and heart could not connect.

I have fatigue still, 2.5 years on, but I have been to a fatigue management clinic and now know how to manage my time and commitments better. Maybe if he is overdoing things trying to “get back to normal” this is having an adverse effect.

Am I who I was before? No. My values, ethics and morals are still there, but I’m quick to anger. Just talking to my husband right now, I said can you help me articulate this to this lady going through what you went through because I know I’m not the same. He said to tell you I’m not a million miles away anymore from who I used to be, but I’m in the neighbouring street and ambling home.

Knowing me I’ll end up in a shed at the bottom of the garden but it will be our shed.

I’m waffling now, but hope this helps a bit. It’s a damn long journey to recovery and please don’t underestimate the power of the brain to protect the person. It’s not him, it’s physical and it’s for his protection.

D x

1 like
Reply

Oh thank you so much that's very sweet of you to share your story. I think he is trying too hard to get back to normal and I need to tell him to relax. He sleeps a lot but he tries to go and socialise and it's painful for me to watch x I will definitely keep all of this in my mind as we move forward thanks so much x

Reply

Hi I'm michael I was in icy for 8 to 10 weeks in icu I was in a coma for 7 and half weeks and i had septice and full organ failer and so much more and I'm finding it so hard to deal with the mental stress. I had to learn how to walk talk and deal with sycosise and i would love to talk to others who have been in induced coma becuse wen i try telling people they dont under stand I hope bye talking to others I can learn from them and if I can help any one that's a bounce

2 likes
Reply

Hi Michael sorry to hear that. My hubby going through similar and from posting on here it seems everyone has had similar bad recoveries. It seems like it really effects your mental health and just about everything. The only thing I keep reminding myself and hubby is to be patient as it won't get better overnight. You can defiantly speak to gp and go see someone like a counsellor or psychiatrist to talk and I would say don't be too hard on yourself you have been through a lot that no one will understand. Talk to your family about how you feel otherwise they may not understand or deal with you correctly. It's always good to talk and this site is great as their are so many people that have been through something similar

I really hope you can be patient and take it steady and at least your alive x

1 like
Reply

You may also like...