Induced comas: If you are desiring some sort of... - ICUsteps

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Induced comas

CalicoJack
CalicoJack

If you are desiring some sort of understanding of what and where your loved one is experiencing within their induced coma, please contact me. I am more than happy to talk about my experiences in an induced coma. It was incredible!!!

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Hi CalicoJack, I was hospitalized for 35 days from the 26th November to the 31st December last year, 11 of those days on ICU, 7 of which I was in a induced comma, I have a very small immediate family and the majority of the responsibilities fell on my only daughter.

I have very little memory of my time in hospital prior to being placed in the induced coma and only have any memory of anything other than brief flickers of anything up until around 3 days after leaving ICU and going back on a ward.

I have been home now for 3 weeks and one of the things that I am finding most difficult to comprehend deal with is the guilt of putting my daughter through what I can only think of was an horrendous time for her, she coped incredibly well and like myself is a very strong person but I know it was a very tough and challenging for her, it was only after the 6th and 6th dayattempt that I was successfully excubate, I cant believe how painful those 6 days must if been for her.

I have very little information on what and how both I and her can expect now and would appreciate any help, tips or advice you can give...

Many thanks...

Sepsur
Sepsur
in reply to Briggzy63

Hi Briggzy63

I come from a similarly small, tight family.

The majority of the responsibility for caring fell on my wife, who was also trying to manage the rapid decline of both of her parents, her Mum was slowly becoming immobilised by a brain tumour & her father with COPD, in fact, they both died within a year of my discharge. I cannot imagine what they all went through as I remained in a coma for 57 days. They were frequently told I wouldn’t survive the night.

Once I had woken up, I was determined to regain as much of my life as possible. Relentless physio therapy & determination. I refused to be a burden, I wanted my independence so that my family no longer had me as the centre of their concern. Of course I hadn’t appreciated that this fierce fight for autonomy would bring its own problems. They all began to worry that I was trying to do too much too soon. A lot of the time they were right. Stubborn determination might have brought us through critical care but it has a double edge to it. I had to listen to all their concerns too.

Did/do I feel guilt for what I put them through? I didn’t get ill on purpose or out of spite - I would never intend to put them through that hell & do everything not to find myself in that situation again.

If I m ill - I go to GP or hospital & don’t shrug it off. I exercise, eat well and look after my health - that’s all I can do.

Your daughter will only want what is best for you & thankful that you survived - you would have done the same for her.

Hi Briggzy,

We were in hospital around the same time last year. I was put into an induced coma on 15/12 until 25/12 and left hospital on 31/12.

We’re still really close to our ITU experience and have a lot to process. I too feel incredibly guilty about what I put my husband, parents, siblings, extended family and friends through. I also have a huge amount of guilt about not seeing my children for 3 weeks. I suffered badly from delirium when I was extubated and I had dreamt that my husband had cheated on me. The first time I he saw me when I was awake, I told him to F off and refused to look at him. He was absolutely devastated at how I’d reacted and ended up having to leave the ward to go and cry! What makes it worse is that I’m his second wife as he lost his first wife to cancer 3 years ago. I can’t believe I put him through all the worry he’s already experienced all over again.

One thing we have come to accept though is that we will never be able to understand the other’s experience. He doesn’t know how traumatic I found my stay in ITU and I will never know how awful it was for him having a wife that was critically ill. Did you have a diary whilst you were in ITU? I have been invited back to meet with an ITU nurse to go through the diary and experience.

I’m glad you are home and the one mend, what a rubbish Christmas we both had!!

Vicky x

Grant_za
Grant_za
in reply to Briggzy63

Dont feel guilty.

I have had to take care of my mother for the past 3 years, in and out of hospital (i calculated i had been to the hospital about 250 times over the last 3 years), she'd undergone numerous surgeries, spent time in ICU, then 3 months in an isolation ward due to surgical infection.

This left her bedridden, but I had to continue taking care of her.

We only do this out of love for the other.

This is what your daughter did for you. It's out of unconditional love for another that we assume the "burden" and take on the tasks effortlessly and without complaint.

Your daughter did this out of her love for you.

Dont feel guilty, repay her with love.

If for some reason you land up in hospital again, she will simply pick up from last time and continue providing care and support - out of her love for you.

The things I dreamed and hallucinated too were incredible!! I can’t believe my brain was capable of imagining all that!

Sepsur
Sepsur
in reply to VickyC1982

I lived a multitude of lives from beginning to end

VickyC1982
VickyC1982
in reply to Sepsur

I went to America, lectured Americans on obesity (all whilst on a ventilator!), went in an iron lung in New York, went to New York for Christmas, flew in a helicopter about 8 times all whilst hanging from the bottom of it, had to donate body parts to be saved, made loads of new friends who all proceeded to drop dead in front of me, imagined my husband had cheated on me with several women...... That was just what I dreamt in the coma!! The real fun started when I was extubated where I was still deluded and confused but then the hallucinations started!! I still can’t believe my brain was capable of all of this!!

One of my dream themes was being held prisoner in a bistro bar by a group of gangsters. I had something they wanted but weren't allowed to take, I had to willingly hand it over; I knew if I did this they would kill me, so I stubbornly refused. I would escape from the bistro and there would be chases all over the world, only to be eventually recaptured and held prisoner again.

The bistro bar was a strange, dark place during the evening. Amid all the busyness there was a game going on between two glitzy gangster girls sitting in horse saddles suspended from the ceiling: they would swing across the bar from opposite sides and try to unseat each other. At the end of a swing they would catch hold of a tree stump with spikes on their boots; at one point I was standing next to a stump when one of the gangster girls crashed her spikes inches from my head, looking at me with icy eyes that said 'that was meant for you '.I

I never actually saw the gangsters themselves, they were always in shadow or chasing me in powerful cars.

This was just one of my dream themes, there were many more.

The most terrifying dream I had was that the doctors determined I wasn’t a worthy/useful enough human being and in order to be saved, I had to donate baby parts! Those baby parts would then be put together and given to childless couples!! The baby parts that I provided that weren’t good enough to be used, I was made to throw into the sea whilst dangling from the bottom of the sea king helicopter. I thought this had happened at least three times and when I came round, I was petrified and in tears in case I was taken away again and full of guilt and remorse for the parts of my potential children I had discarded into the sea.

Obviously now I can see that this isn’t remotely possible but it was awful at the time and I was obsessed by it. A helicopter flew over my house a few days ago and I literally froze. I hope with time, that fades.

That's really disturbing Vicky, hopefully with time the emotional impact will ease. Best wishes

I wonder if it makes a difference if you were generally someone who remembers dreams. My husband never remembers his dreams. He remembers none from being critically ill in sept. I always remember mine and when in hospital many years ago was having dreams and delusions from diamorphine . I wake up many times in the night in the middle of dreams. Are you still dreaming now?

Generally, I don't tend to remember dreams, except if they are very vivid or disturbing, but I can still recall my dreams from my period in critical care, nearly five years on now. I wrote then down a few months after my discharge, as a means of therapy, and I now wonder if I could recall them so well without this.

One thing I would add is that I feel I have vivid dreams more often since my time in critical care.

I didn’t dream prior to my ITU admission due to an antidepressant I’m on. I had horrendously vivid and terrifying dreams in my induced coma. Some were also ridiculous and funny but I don’t ever remember dreaming like that in my life before. I can remember every detail of them but don’t generally remember too much of my dreams if I do have them 🤷🏼‍♀️

Interesting!

OMG so pleased to find others with similar experiences, I was in a 9 day coma from 20/12 so it’s all very new, I’m home but still very much in recovery trying to make sense of it all

VickyC1982
VickyC1982
in reply to Bailey15

Hi Bailey15,

You’re another person that had a crap Christmas like me! I was admitted on 15/12 and was on the ventilator for 10 days until 25/12. Today is my one month anniversary from being out of the coma! I’ve found this group really useful for support. I hope you are recovering well.

Vicky x

Bailey15
Bailey15
in reply to VickyC1982

Hiya, yes crap Xmas and new year for us too! Still can’t quite believe what’s happened tbh, I’ve lost from 20/12 to 3/1, v strange ‘dreams’ which seem so real, it’s v confusing still. Have u been back to icu? They said I will be offered the chance at some point, meet the staff and see where u was etc, I want it to feel familiar but also doubt it will. How r u feeling now one month on? X

VickyC1982
VickyC1982
in reply to Bailey15

I have been back to the ICU to give them a card and some presents to thank them. I expected to walk back in there and everything to just click into place, it didn’t! I was taken to the side room I was in and then the bay in the ward. I didn’t recognise either and I was really disappointed. I did however begin profusely sweating, my legs went weak and I started shaking on seeing the door to ICU. I’m going back to meet with one of the nurses and get my diary in the first week of Feb but I’m not sure how I feel about that at the moment.

One month on from being extubated, I’m feeling OK. Physically, I have no problems breathing and I am slowly regaining the strength and weight I lost whilst on ICU. I have some scars on my wrists and my neck from the central and arterial lines but you’d look at me and think I was perfectly normal and healthy.

The hardest thing for me has been the mental and emotional side of things. I feel a huge amount of guilt for what I put my husband, children, family and friends through and I feel like a terrible mother for not seeing my kids for a month. I also struggle with the horrific memory of the dreams, delusions and hallucinations I had. They were very disturbing and even now they can send me into blind panic internally. I’m also starting to remember being semi conscious for small periods, I remember trying to scream but no noise came out, desperately trying to let people know I was still in there and fighting but feeling completely paralysed, feeling the tears rolling out of my eyes but being unable to cry. I try and remember everyday that I should be thankful to be here but it’s so bloody hard sometimes. I also saw my respiratory consultant on Friday and was told that he, the consultant radiologist and consultant intensivist had all expected me to die and that my lungs were ‘not compatible with life’! This has really set me back and I sat up until 4am this morning consumed with thinking about dying and how close I came.

Sorry for the long response but I feel it’s important to be honest about my experience. I’m desperately trying to think of ways to raise awareness amongst the medical field about what exactly ICU patients experience as I don’t believe they or people in general understand what a physical and emotional assault it is.

Vicky xx

Bailey15
Bailey15
in reply to VickyC1982

Hi Vicky,

Thank you for your reply, I really appreciate you sharing your experience and your honesty too. It sounds like you had the same thoughts as I do regarding a return to icu which didn’t pan out, had a feeling that may be the case but in a quest for answers I hope something may register, I will still go in as I think it will help I want to meet the team and although it doesn’t seem like much, say thank u. I have thought about and tried to get my head around the impact this has had on my partner, children, family and friends, who have all been amazing thru this, I’ve thought about the what ifs and how things could have been so different f I hadn’t gone to the doc, they hadn’t called the ambo, if the doc hadn’t seen me who called how ill I was etc etc it’s mind blowing. Im the same as u in that physically I’m better in that the illness is gone what’s left is the weakness and physiological impact. Ultimately I know I am so so lucky and I keep telling myself this everyday and Knowing there are people out there that understand about the experience and have been or are going through the same is a strength in itself xx

I feel really guilty about not having gone back to ICU/critical care with the gift basket & card I made up for them in thank you, which is 2 years ago now, Want to go back, have been in the hospital plenty of times, have stood outside the doors of ICU/critical care looking in through the windows in the doors, but never daring to go back inside yet I do want to do desperately but feel foolish & guilty now for not having gone back immediately or sooner, and fearful they will just laugh at me going back now with gift basket & card. In my mind never to late to say thank you, but my family mock me with laughter saying to late now and treat me as if - Yet another thing I couldn't even do right!/Failed at! Patronising my inability to have gone back in sooner not understanding at all why I couldn't. They treat me like me not having been able to go back in is a huge disappointment to them from me even though none of their business what I do, but now fearful going back in will result in the same reaction from the icu staff there towards me too. All trying to guilt trip me. My Mum mocks me saying - Well the nurses who looked after you won't be there now anyway after all this time! It's just gone 2 years & wasn't 2 years when she said that repeatedly to me. So now I feel really awkward about ever going back inside despite wanting to, but feeling a bit anxious about doing so which has been the preventer for me, that fear of the unknown.

I was extubated 2 years ago just past on 25th Jan. Still recovering, I remember a few of my dreams, but mostly I was in a white bright light room lying flat on my back but being levitated above it by white but almost transparent beings all holding hands saying don't break the chain, they were protecting me from a dark grey hunched over hooded not human, not monster, not scary mass that wanted to take me and would if they broke their protective chain. I could only see it out of the corner of my eye, they encouraged me without actually speaking out loud to me to not look at it, as that would draw in its attention. It was death, it was omnious but not evil or scary, I just knew if it got me that was the end and nothing after. The beings had beautiful but blurred features almost like smooth moulded silicone, human features but not fully formed. Almost flat, everything white about them butt the black outlines of their eyes, noses, mouths. Very delicate and beautiful. They kept saying don't let it get her, don't break the chain. They were speaking into my mind, telling me not to be afraid, and that I was okay. And they were filling me with the most powerful unimaginable untainted purest love so deep and emotionally. That kind of love isn't found in humanity it was the purest love from elsewhere, not from earth. Thinking of that love can reduce me to tears even now, an insurmountable loss it is felt like. It was a healing love but them waking me tore it away, and now it's loss is felt like the death of a very dearly loved one. I feel hollow/empty and bereft inside. My coma dreams were wondered, I'd have happily stayed receiving that pure untainted white light of overwhelmingly unearthly love, but I was aware also of my desperate desire to leave an awareness far off of my then just turned 13 years old son needing me, so I fought to survive for him. Waking from my coma what was the weirdest strangest thing where reality was completely altered and and I guess that's where my nightmare began! Upon finally getting to a ward way before I should have left ICU everything I was like I have been reborn again the majesticity and all all of everything like seeing everything again for the very first time and majestic sky so blue in the winter snow on branches outside icicles all see through the window. Everything was beautiful and majestic and slowly slowly is recovery took hold everything became a bit duller a bit less majestic and magnificent but I will never forget my experience it was for me a wonderful experience despite the fact that my heart stopped briefly and my parents called in twice to say goodbye & watch me die. I wasn't expected to survive. I wasn't aware of any of that I was in this wonderful place but upon waking it was a nightmare mixed in with magnificent majestic beauty. I miss my coma and I actually long to go back because it was filled with such unbelievable peace and and overwhelming pure love that nobody would want to come away from that, and to leave it so suddenly is heart-wrenching. I was seriously at peace in my coma, and here in reality awake conscious my life is not at peace. It's a life despite my love for my son and my determination to get back to him I was also happy to leave behind as I live a very lonely stressful life filled more with sadness than happiness. My anxiety and depression completely left me in my coma, I was stress, depression, anxiety, troubled & sadness free. Now I live with health complications because of the illness I had and physical issues because of the Coma which I don't think now after 2 years will ever be fully recovered from. This may sound negative so don't get me wrong I am positive and have fought hard and well to just be able to walk again & do normal stuff, but everything now is more challenging than it was before and more exhausting but I do keep fighting because I am I'm very determined person. I wonder if anybodyelse has found since their coma they now feel off balance/u stable in the dark, and and vision not so good anymore blurry at times and definitely not as good in the dark. I can not to go out in the dark now because it makes me feel quite off balance and a bit not dizzy, but as if everything is just moving slightly.

I went back and the biggest gift for some of them was remembering how Ill you was, and how you are now. The ability to walk in there is gift enough. I do some service at the hospital I was in; maybe that’s an option even if it’s only once. Or even a 1mile-any miles charity walk for awareness etc...you can feel like your giving back in so many practical ways. Even leaving prayer in the chapel in the hospital (to anything you may or may not believe in, even if it’s a positive note) goes a long way for me. I have done that before 👍🏻 good luck and well done all.

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