I have been told a few times that when sedation is turned off for my mom she opens her eyes but does not respond to commands. With all honestly, I’m so grateful that she’s doing a little tiny better than I’m not worried about that. Yes, I understand that it could be signs of brain damage etc. The doctor has explained that to me, but I think my mom needs time to be more alert and fully be awake. She’s only been off sedation for maybe 1-2 hrs then she’s back on it so in reality her body is not clear of it.
My question is, for people here who experienced the intubation and icu stays. After being critical and on an induced coma, what did you think right when your eyes opened? Were you confused? Did you question what was happening?
Or maybe If your loved one told you their thoughts, if you don’t mind sharing. I’m trying to understand what my moms mind is thinking for those minutes.
Thank you so much in advance for sharing.
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I want to stress that everyone’s experience of waking from sedation is unique. How people react to the sedatives & paralysing agents is equally unique. So my experience is not the same as others. It took me 11 days to come properly around from a 57 day coma. Because my kidneys failed and I was on dialysis for 7wks, my body had retained loads of fluid, so as I was waking, the staff were dehydrating me causing my skin to peel. I had such massive muscle waste, that All I could see were my peeling hands which looked claw like( because I couldn’t raise my head).
So, bearing in mind the incredibly eloborate ‘visions’ I had been having under sedation, my first conscious thought was wondering what sort of creature I was.
My grasp of reality improved over the next week but ICU delirium is a frightening journey that effects around 50% of patients.
Thank you for sharing! I cannot imagine how scared you must have felt. It makes sense that her eyes only stare and do not react as they want her to.
I understand that every person is different. I pray that soon she’s fully alert. I wish I could know what’s going through her mind. I hope soon I can find out.
Hi as Sepsur said everybody is different, my husband has no recollection of any time in ITU or when he came off sedation. It took him days , he looked like a frightened rabbit in the headlights, I hadn't seen him for 6 weeks and was crest fallen when they zoomed call me . He was terrified and just stared through me .
It was a long time before he knew what was going on and could react .
Thank you for sharing his experience. I am happy for your husband and all of you that he’s recovered. Hopefully soon I can share that part of our experience with people as well. Thanks
I was out of it for 6-8 weeks I am told that I had conversations when I don’t know but it must have been when the voice box was fitted to my trachy. I have no memory so can’t really help you.
What I can say though is that when I gradually recovered and both in hospital and home I became very distressed about what I couldn’t remember but that is me. Some people just aren’t bothered and just want to move on.
Thanks for sharing. I wonder how my mom will react. She’s a very strong person. She’s always been and I can’t wait to be there with her all the time. Your experience makes me realize that maybe she get frustrated as well and is overwhelmed or anxious about not remembering. I’ll be there first hand to help her. Thanks for sharing your experience again, it’s helpful as it opens my mind and helps me understand that something like this can happen and to be ready.
Hi, my partner was in an induced coma for 11 days, the Sunday just gone, which was approx 70 days later was the first time he spent most of my visit without his eyes wandering or staring vacantly. It all depends on how your mums brain deals with recovery, I know now that for us the road will be very long and that every experience is different. Take care and look after yourself.
Please remain hopeful for your Mum to recover. The best advice we were given by one kind consultant when my younger brother was lying critically ill in an induced coma after sepsis from flu. His youngest child was 6 at the time. I spent every day visiting him in ICU pre Covid. It took him a month to fully come round from withdrawal of sedation. As Sepsur says everyone’s experience is different. My brothers kidneys weren’t working and he was critically ill because his lungs had failed with sepsis so he was on a ventilator and ECMO. His body was recovering from infections and critical illness coupled with kidneys not working so there may be reasons why your Mum is taking time. We were told there may be no recovery when my brother was lying unconscious and unresponsive. It was so hard. Remain hopeful is the best advice we were given.
I’m very hopeful and positive. Of course I have those moments when I get more angry, depressed and anxious, but I think it’s part of the process. I can’t help but feel broken at times. But I have truly found it within my self to believe with all my heart. I know I can’t question Gods timing, but I get so desperate trying to figure out when my mom will finally come home.
I also see my mom is not having complications anymore. She’s really fighting. Her anemia is done, kidneys back to normal, heart rate normal, bp normal. Her X-ray showed a little improvement on the pneumonia. It’s all good news and looking like she’s going the right direction. I’m very grateful for that, but I honestly wish she would have never gone through this horrible illness.
I was very confused by all these people around me when they kept reducing my sedation. I had lots of delusions/ hallucinations where creepy drs were outside my room etc so I felt very scared and alone. After coming off the ventilator I couldn't remember my childrens ages or birthdays and it took me weeks at home to start to piece things back together. It's a very scary confusing process so it's very hard to tell what it all means
I read a few articles about hallucinations and visions from people waking up from sedatives. I’m scared my mom is having the same and I’m unable to do anything about it. I wonder if being there in person would help her? But then I’m really scared of not being strong enough. It’s a mixture of emotions.
I think it would have been much better if I could have had visitors for reassurance but unfortunately no visitors allowed at all. I didn't even get help to call my partner and children on the ward after ventilation. I was so upset. If you could go, I would try .
From my perspective the only person that can deal with the hallucinations and nightmares is the person having them. Some people are not bothered by them others have to deal with them and they are certainly frightening when having them and if they are relived. What is important though is if you are told about them you mustn’t dismiss them as they are very real. I had particular problems with a clock and when I came home the toaster took in this evil role. It took awhile for people to understand that I really did have a problem with the toaster. It’s now 6 months since I left hospital and whilst it still follows me I’m not bothered by it and I have even used it.
My husband found it increadibly hard to watch me in the same state that your mom is in right now. You’re not really seeing any signs of the person you love. Please stay positive, this experience is sometimes very confusing and frightening for some of us (not all). I am now very well and enjoying life again. It took a while to get to this point and with lots of support, patience and love, I’m hoping your mom will get through this. Be hopeful that you will have your mom back, as you knew her, in the future.
Thanks for sharing your story. I don’t have the strength to go see her and have her stare blank at the wall. For that reason, I haven’t asked to be let in for visiting. I don’t know that I can handle that. I’m pregnant and I’m trying my best to really push through and believe that soon this will be over. I trust God. I know his times are perfect, but I can’t help and get overwhelmed and anxious. Such hard times for the families. I’m glad somehow mom won’t have much recap of everything she’s gone through.
I totally understand, you really do seem to have a lot to cope with. Something that I found a real comfort was a photograph that my husband brought into icu for me. I was so confused, trying to make sense of what was going on around me and a photo of my children really helped my state of mind (I hadn’t thought about them until I saw that photo, not forgotten but very very confused.) If you could have someone bring a picture of you in it might help your mum and also help you to feel like your playing a helpful part in her recovery. I also found it helped the icu staff to connect with me and vice versa. It was lovely to have them chat about my family when they saw the photo.
That is A great idea! Thank you so much for sharing! I’m going to be taking one today. The nurses are kind enough to come out to the Lobby and take things inside like candles, rosary etc. I’m going to be taking a pic of my siblings and I so that mom can think about us when she wakes up.
She’s now so much better. Her doctor told me for the first time in 6 weeks that he thinks my mom is going to recover just well.
Wonderful news, I took in a memory board of photo's for my husband , he didn't know who many people were and got confused with names of who was who when he first came round. So pleased you have had positive news x
Hi, I had no recollection at all of what happened to me whilst in icu, I spent 6days in icu. When I did come around and recovered everything was hazy to start with & had brain fog but after a few weeks that cleared and I wasn’t so confused with things. I had muscle waste which I had to have physio whilst my stay in hospital which after a few weeks I was able to walk unaided again but it was a real struggle & so distressing to begin with not being able to do things I always could do!
Wishing you’re mother all the luck 🤞🏻I’m sure she will do just fine xx
Thank you kindly for sharing! Stories like yours make me believe that one day Mom and I will be able to share our experience. You’re a walking miracle!
I was intubated for 12 days and they tried waking me up for a week straight. My husband said that I would wake up but I wouldn’t respond to commands like squeeze my finger, and then they would sedate me again. They said I would seem aggregated and my eyes would get really wide and frantic. They would give me MRIs thinking something was wrong with my brain. Finally my husband suggested to them that he would be on zoom with me when I woke up so I could hear a familiar voice. That was the day that I was able to fully wake up.
Also I was having really intense dreams/nightmares from all the painkillers/sedatives and I feel like that could have been the reason why I wasn’t responsive. The line between reality and dreams was really blurred and the drugs were so intense. I feel like I may not have been responsive because in my dream the doctors and nurses were trying to kill me or perform experiments on me and I didn’t trust them.
I hope your mom is able to fully wake up soon. Is she able to hear a familiar voice via zoom or something? Maybe it will be helpful for her too.
Thanks for sharing Your experience. I keep reading about dreams and hallucinations. It worries me and honestly makes me feel so sad that I can’t be there to even try to Help.
We’ve done zoom. We usually pray the rosary when we have her on the phone so I hope she can hear us and know we are with her somehow.
My dad was off sedation for about two and a half weeks before he showed signs moving his foot and nodding his head don’t worry easier said than done and keep being positive. My dad told me that he doesn’t remember a lot his mind is foggy and that he does remember having dreams and that they felt so real but not much else while he was off sedation he did experience delirium and chewed his mitten off (restraint) and took his restraints off more than a few times. Pls keep ya updated and may you continue to stay strong so that you can be strong for your mom ❤️I was very anxious through out all the four months and it hit me at the end like a ton of bricks rest and try and eat well take care of yourself hugs 🤗
Thanks for sharing your story. My mom was taken of sedatives yesterday. She initially didn’t open her eyes, but nurse said when she called her name out loud that She opened her eyes. So apparently that’s good because she responded to her name. Other than that, she was still very confused and went back to sedatives shortly after.
I have hope that she needs to come off completely off sedation for her to fully awake and for her body to have time to come back to reality. I keep being told possibly brain damage but I don’t know if it’s me who refuses to believe It or if it’s my hope that she’s just heavily drugged and needs time to come back. Which ever the outcome is, I’m anxiously waiting for my mom to come back.
Apparently the doctors thought I was anxious when I was waking up; but I don't remember that – I just remember everything being weird. Reality, dreaming and hallucinating all merged into one.
In retrospect some of it is quite amusing. The nurses had put my hands in mittens to stop me pulling out the tubes, and I incorporated this in a game I was involved in in my dream – my opponents were cheating by tying up my hands. And I was playing the game while swimming around in a fish farm within the Arctic Circle (probably explained by the fact I felt so cold). All that kind of thing.
So in my case, the answer to your question "Were you confused" is a definite yes.
I just want to say thank you all for sharing your stories. They give me great hope! Three days ago my mom suffered cardiac arrest. She died three times. Once on the way in the ambulance, and twice at the hospital. I am so scared. They are saying when they bring down the sedation that she just stares. She is not responding and when the ventilator is turned down she gets agitated. I still have very little meaning behind that. I have looked everywhere for information and after finding all the scariest things, I decided to look for hope. So, thank you all. I have read every comment. I hope everyone is well.
I would suggest you pop this on as a new post as more people can offer information to you. Hope and faith is all we have whilst our loved ones are in ITU, but take comfort she is being looked after by wonderful, caring specialist.
When my husband came round from lifting the sedation ( I lost count of the sedation holds he had - I'm talking scores ) it was days before he did anything he just stared through us. He also got very agitated and his BP would rise sharply. It was a delicate balance but they got there in the end .
Hi Ferham, my husband is going through a similar situation at the moment becoming anxious every time he has a sedation hold so they have to increase it again. Can I ask what finally helped your husband become less agitated. Many thanks
Hi Keen runner, I'm so sorry, I/we don't know, we got very limited information on what treatments he got, I was just getting an overview daily from a liaisons team. These were made up of retired anesthetist and consultants. I asked why they had to keep doing it, I was told, it was a very fine balance of different meds to get it right and when he was ready. I'm sure if anybody with a medical background was reading this they would be aghast with the blunt description. I do recall them saying they were using sedation to help him to relax. I guess they need to ensure they are not interacting with the other meds. Once he had the trachy things started to improve very slowly .
I'm so sorry I can't really answer this for you, but can confirm I lost count of the amount of sedation holds they tried .
Hi, it's comforting to know that he had numerous sedation holds but eventually they pull through when they are ready. My husband has had several already all with the same response. We sent him a voice message yesterday to see if it helps. They mentioned a trachy last week so maybe that will help. How long was your husband in ICU and how is he now? Thank you so much for the information. It really is helpful x
I'm so pleased it helped, he was in ICU for nearly 40 days on a ventilator for 36, he had the trachy 12 days prior the successful sedation hold. When I say numerous, I'm talking over 30.Once he came round from ITU, he was still incredible poorly and was moved to a critical care ward and was monitored by critical care and HDU medical staff for a further 3 weeks .
As well as the affects of covid and a heart attack, he suffered from the most horrendous delirium, which to me and my family was equally devastating. We hadn't been warned this could happen. The amazing thing is he doesn't recall any of it, he went through every emotion possible, he was angry, aggressive, emotional and would just giggle and mutter to himself. He wouldn't interact with anybody and would just stare through us.
Eventually it started to lift and some of the nurses (they were amazing ) said to me keep a diary of the things he is saying, and call it covid craziness . I built up a wonderful relationship with the nurses, some would facetime me and couldn't hold the camera still due giggling from the covid craziness - I didn't do a diary, but now he is much better I wished I did, she did say to me one day you will look back and giggle- she was so right.
So 9 months on, he has scarring on the lungs and his heart is still an issue but these are being monitored.
His mobility was the thing that has really got him so low, he wasn't able to walk, lift a cup, feed himself etc. He had weeks of intensive physio and this has continued back home (once a week for an hour ). He is now walking without any aids around the house, he is able to walk up to about 3 miles slowly, but had nerve end damage to his lower limbs and foot drop.
He is now able to drive , which is amazing. The only thing he s not able to do is household chores
😀 Please feel free to ask away, I hope this has helped
Thank you so much, it really is useful to hear your experiences. I hope hearing our voices helps him but at the moment he just shows signs of agitation when they do the hold. Reading your experiences I realize what a mammoth journey it is but I'm so pleased your husband is making such good progress. At the moment I know my husband is only at the beginning of his journey and everything is still really uncertain. Just hoping and praying we see more signs of improvement soon but he is stable now. It really does help to hear from someone who has been through what I am going through now.
It's such a difficult place you are in. I think that's lovely that he can hear your voices , we didn't have that as they didn't have tablets or phones then when he was in ITU. We had weeks of him being "static " it was groundhog day for weeks, one day the consultants called to say we are seeing small improvements . I'm praying you get this soon xx
I know it's been a month since you last posted on this thread so you may not see this. My dad is in the ICU with a ventilator. He had a heart attack and went into cardiogenic shock. He has recovered so much. He just got a trach put in yesterday after having the ventilator in his mouth for over 3 weeks. He gets really agitated when they take the sedation off. We weren't warned about this until it happened. I'm reading up on this and realizing that it is a much bigger situation than it seemed when talking to the doctors and nurses. I'm so afraid. How is your mother now? Has she gotten better? I hope your mother is improved. This is a very difficult situation
Hi, sorry for the delay in replying. When they first took the sedation away my husband became very agitated so they then reduced it slowly which was better for him. My husband is doing really well and is due to come home in a few days!! I hope your dad is doing better now. It is a tough time but things will improve x
The hospitals have said the same about my mum and said she is not responding. So they want to stop the treatment but i think they are rushing it. Mum has been on vent for 21 days. Had trach done 4 days ago. What can we do i am very stressed. Was anyone else told they are giving 24 hour notice and for 2 members of tge family to see tge patient
I am a 28 year old woman and pregnant at that time.
When I woke, I remember wondering if i was in a car accident. It took me about 30 seconds until I clicked, I seen my husband and remembered.
I've just asked my husband and he says that I was scared. He said it went from scared to realising but not being able to speak as they wake you intubated. I was frustrated with no being able to relay whatever was going on in my head to my husband, then I was angry. He says I was grunting angrily.
I remember a little of this but mostly just feeling afraid.
When you wake up, you have had no recollection of how unwell you have been. I dont think many people realise the mental and physical toll it takes on the human body - I certainly didn't and I'm a trained nurse. I was so relieved when they placed me into the induced coma because I was so unwell that I didn't think of how my mind and body was be affected.
My advice is, when your mum does seem more coherent, make sure she can see you and hold her hand. It's likely one of the hardest things she will ever do but if she sees a loving face, it will help her to know she is okay.
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