He's not the same anymore: Hi there My hubby went... - ICUsteps

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He's not the same anymore

MRANDMRSBESTY profile image
41 Replies

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

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MRANDMRSBESTY profile image
MRANDMRSBESTY
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41 Replies
Offcut profile image
Offcut

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

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to Offcut

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

nick1972 profile image
nick1972

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

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to nick1972

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?

nick1972 profile image
nick1972 in reply to MRANDMRSBESTY

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

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to nick1972

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

nick1972 profile image
nick1972 in reply to MRANDMRSBESTY

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

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to nick1972

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

Sepsur profile image
Sepsur

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

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to Sepsur

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

Videodragons profile image
Videodragons

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.

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to Videodragons

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

Videodragons profile image
Videodragons in reply to MRANDMRSBESTY

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.

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to Videodragons

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

MRANDMRSBESTY profile image
MRANDMRSBESTY

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

lgt525 profile image
lgt525

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.

MRANDMRSBESTY profile image
MRANDMRSBESTY

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

Ericeast profile image
Ericeast

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!

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to Ericeast

Thank you xx

sheila21 profile image
sheila21

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

MRANDMRSBESTY profile image
MRANDMRSBESTY

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

BettyTim profile image
BettyTim

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.

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to BettyTim

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

BBDEBS profile image
BBDEBS

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

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to BBDEBS

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

2154oli profile image
2154oli

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

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to 2154oli

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

BBDEBS profile image
BBDEBS in reply to 2154oli

Hi Michael,

Wow what an ordeal you’ve been through. Are you in the UK? There’s a group called Icu steps and they have voluntary support groups across the country. Without mine, well, not sure I could be talking to you now x

IM GOING THROUGH THE SAME THING WITH MY HUSBAND. I feel a lil lost. My husband was really swollen due to heart failure. He was retaining so much fluid he could barely walk or breath. The swelling and fluid were preventing him from exhaling completely which caused CO2 to build up and it poisoned him. His ammonia level was also high because his liver was failing. He went into a coma for 5 days. When he woke up he could hardly move his hands. He started moving slowly, but could not walk or talk clearly. After some therapy he regained the ability to move,walk, and talk but he also has lost his personality. He is not the same. I forgot to mention he's always been a big guy. In October 2018 he weighed 320. When he was admitted to the hospital in January 2019 he was over 400. At discharge in early February 2019 he weighed 224 lbs because of all of the diuretics he received. So on top of everything he's also getting used to being the thinnest he says he's ever been in his life. So he also looks really different. I feel sad that he is so different from before. (I don't tell him though) I know it's healthier for him to be thin but I wonder if he'll ever get his old personality back. He was a great, affectionate,funny, outgoing guy. Now he hardly talks. He's not affectionate anymore. I often wonder if he even feels the same way about me. He says he does, but idk. I ask how he feels physically & mentally. He says good but that he knows he's different. I want the old him back, but like you I'm so thankful he's even alive. I love him so much and I'll always be by his side but it would be nice to know if he'll ever be the same

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to

I no exactly how you feel. Will be 6 months this month and the affection definatly isn't back at all nor his personality. I have to just tell myself to be strong and tell myself at least he's alive but of course it's natural to feel a little alone and in need of attention (I've learned to admit that I am ALLOWED TO feel this as you get into a habit of putting your needs to the bottom of the pile) I made a commitment to my husband that I would love him and care for him for the rest of our lives and I will. Ultimately though a year or two down the line it may be that the dynamic has to change so we can all be happy as individuals . It's about him but it's also about my happiness and my sons and I don't think anyone on here has ever suggested that. You go on feeling selfish and guilty but the least I can say is i completely get it and if you ever ever want to message me please do even down the line as it only gets harder xxx that being said maybe your husband will get better quicker as it's still very early days for you! But everything anyone advised is certainly not the case here. He is lost and I'm convinced the old him has gone. But I love him and will push for tests etc and of course support him like the best mate he has been and always will be. Xxx wish you all the best please message me if you ever need a chat xx

Dgrytter profile image
Dgrytter

A medically induced coma can have many complications both short term and long term. I was in a coma for 5 weeks. My family was told I may never be same... no memory...vegatative state...at best the brain capacity of a 3 year old. By some miracle I made a full recovery. It may take a few weeks or maybe even a few months for him to make a full recovery. Dont give up...he needs your support.

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to Dgrytter

Will always be here no matter what just hard as it's been 6 months and no change at all. X

KrisShack profile image
KrisShack

The first few weeks after my coma I could barely talk due to the vent tube damage in my throat. Could it be something as simple as that?

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to KrisShack

Hiya

No he talks walk all of that maybe weaker than before and certainly very shaky but all in all he just looks and feels like he's 'on drugs' as we say. He's completely number to everything and doesn't get any more help than anti depressants and talking therapies which do not do anything at all. He's completely lost

KrisShack profile image
KrisShack in reply to MRANDMRSBESTY

I was numb to everything and they lowered my lexapro dosage and I feel ever so much better.

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to KrisShack

Hiya

He's on an anti depressant not that (although I'm not sure what that is :-) ) just anti depressants which don't seem to do anything ... would it be weird to want a brain scan??

KrisShack profile image
KrisShack

I'd talk to the doctor about lowering the dosage. You might bring up a brain scan if you feel it's needed. Lexapro is just another anti-depressant. At first I was a walking zombie no happy no sad. I told my doctor and he called it an "inability to process emotion" and lower my dosage by half. I feel fantastic now. It couldn't hurt to ask.

MRANDMRSBESTY profile image
MRANDMRSBESTY in reply to KrisShack

Thank you I will . We have gp visit tmoz xx

I think it is very easy to say 'it will get better, have patience' but how patient does one have to be. I know this is going to sound selfish but the needs and wants of the other partner needs to be met as well. It stands to reason that you are there supporting your husband at a time when he needs you the most but at the same time, who is helping you because this is also having both a mental and physical affect on you.

Usually it's very uncommon to have a discussion like this because one can be seen as being very selfish knowing that their partner has come out of serious illness and their partner starts talking about how it's affecting them and should they move on with their life because the person has changed to much and they cannot go through trying to love again.

Those are questions you are going to have to start asking yourself. Yes it is devastating what has happened to your husband and you are currently doing everything you can to aid his recovery BUT you need happiness as well.

How long are you going to wait to see if the 'old him' comes back again, the man you married, 1yr, 2yrs?

A very good example is that Olympic rower who won the boat race recently. He was in a terrible accident that changed his personality. His wife stood by him and did so for a very long time until it got too much for her. She said in an interview that his desire to push himself in his sport pushed her away from him. It is sad that she has recently split up from him for the sake of the children and her own well being and happiness but life has to move on.

It is terrible what has happened to your husband and the effect it is having on you and the family but life has to move on.

And before anyone shouts me down for saying how heartless i am being, i currently have a relative in ICU, has been their for 2 months now, so yes, i will be having the exact same issues as many in this group have suffered and experienced.

sleeplessblueboy profile image
sleeplessblueboy

My husband also came out of ICU with a different personality. he is less confident and definitely quite prone to getting stressed out over little things which would not have bothered him before. He also seems to annoy me on purpose although he says he doesnt but we have small arguements which would not have happened before although I do try to back off coz I dont actually think he is doing it on purpose. maybe I am different too as I am constantly watching for signs of pneumonia which he has had 3 times in the last 18 months. I think he is a bit better than at first so we can only hope that time is the great healer it is supposed to be.

PattyK2310 profile image
PattyK2310

Hi Mr and Mrs Betsy

Yes I can relate to your story very well! My husband was in ICU/HD battling sepsis 3 months ago. He is also going through bowel cancer. He like your husband was always 'very loud' you more or less heard him before you saw him. He couldn't speak to you without actually shouting and you would have to tell him to bring it down a decibel as you were just sat right next to him. He was always happy go lucky and a cheeky chappie type and we always had cheeky banter going on between us. All that has gone for now though and as you say, he too is a shadow of his former self. He has lost a lot of weight whether its the sepsis or cancer that's done this I don't know. These days he's just happy to lie in bed he's so tired but again we've been told that all falls back to the sepsis. His mobility is quite bad also and we have physios coming in to work with him on that and he more or less speaks in a whisper now and I need to ask him sometimes what he's saying. He's definitely a changed man and I just miss 'us' and hope he comes back to me soon. Now and again I get glimpses of the old him and that's why I know he's still in there.

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