Hi everyone. My husband has recently been in icu on a ventilator for 4 weeks and we nearly lost him. Thankfully he has now been home for a few days but is like a different man. Watching him nearly die was absolute the worst and scariest thing I've ever experienced and I'm so thankfully that he's now home with his family but he is really really struggling.The hospital have been horrendous, offering no after care at all (medical or psychological) and I'm trying to help him through this myself.
He is absolutely terrified of everything, so scared of something happening to him and him ending up back in hospital or dying.
He suffered with depression before all this happened and now his mental state is even worse.
I feel useless.
I'm hoping there may be others here who can give me some advice/support .
Thanks for reading.
Much love
Jo
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Mammajojo
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Hi Jo, gosh what an awful time, I’m so glad your husband is still here but a very hard time and a hard road ahead. Just a few questions, what lead to your husband being in a coma in ICU? How long did he spend I hospital once awake? Does he have ICU acquired weakness? What is his mobility like? Sorry for all the questions but a bit more detail makes it easier to give you advice etc. I was in a coma 6 months ago, I was asleep for 12 days, fully awake 5 days later and home after 7 weeks in hospital. When I woke o could only move my head, I had to relearn how to talk, move, feed myself, walk etc. quite literally everything. I tell you this because I was so well supported by the community discharge team made up of Physios, OT’s and district nurses. Before discharge home they had visited me I hospital to figure out all the equipment I would need so that was all ready for me when I got home. The physios visited me every week to continue my physical recovery. Initially my GP did my appointments at home until I could get to the surgery. I didn’t feel I needed psychological help but my GP made it clear that the help was there if at any point I needed it. I also had an ICU follow up appointment to assess how I was doing, I was offered ongoing support. Has your husband had an appointment? Or is one in the pipelines? Does he have an ICU diary? Does that help? I know myself that I struggled to comprehend that so much happened to me and was done to me that I didn’t know about. The diary was brilliant and helping to fill in the gaps and prompt my wife and family to tell me more. Initially I needed to talk a LOT! I couldn’t retain a lot of information to begin and needed it repeated often. I very much appreciated people’s patience with me but also they said it really helped them too to process everything. I found the critical care support network on facebook and honestly it was and is an incredible place of information and support. Support groups happen via zoom twice a week, once specifically for family of survivors and one for the survivor. Maybe you would both find those helpful? I also needed lots of information about critical illness and ICU in general and it’s a fantastic place to start. There are some great resources on the internet if you have a look.
If your experience is recent you are probably all still in flight or fight mode, adrenaline fuelled. It’s so important for everyone to be kind to yourselves, try and eat well, rest and sleep as well as you can, get outside if you can, even if it’s just 5 mins with a cuppa with your face in the sunshine. It’s not fluffy soft advice, we know from research that these small things make a big difference. We keep a diary, initially writing in it everyday, 6 months down the line I write less often but we document everything, it helps me, especially on bad days I can look back at how far I’ve come.
It’s so completely normal that we have huge fear of being so poorly again, everyone will agree that each time you are unwell now will be terrifying, I am the first one knocking on the door of the GP if I am worried, my wife is right behind me too!
Don’t underestimate how an event like this will have forever changed you all and that’s ok, you will find your new normal again.
Are there any specific questions you have? Ask away!
Keep on at your GP for the help you both need, don’t forget to take care of yourself too.
Hi heretotellthetale Thank you so much for your reply.
He has been home for 7 days so it's all very recent and your right it's definitely fight or flight mode at the moment. Everything you have said above is spot on with what we're all feeling at the moment. Thankfully he is opening up to me about his thoughts and feelings so I'm just doing my best to listen to them and support him as best as I can.
Seeing him so scared is absolutely heart breaking.
We were on holiday in disneyland paris when he became ill, he had a massive blood clot in his portal vein in his liver and all his major organs went into failure, he went into septic shock and also had 4 infections in his blood, 2 of them rare and 1 so rare the doctors had never heard of before. He was in the coma for 4 weeks with 4 failed attempts to bring him out. In the end he ended up with a tracheostomy which thankfully helped them bring him round successfully.
He was then in hospital for another 8 days before being discharged.
He does have icu weakness which we are still working on at home. He is walking with the aid of walking sticks now. Due to the tracheostomy he is still on soft food diet at the moment but is gaining his strength back slowly and doing well. We have no follow up care from the hospital (not even physio follow up or anything for the tracheostomy wound care) all we have is an appointment in 3 months to go back and get his diaries. Our GP has been trying to help but the hospital have not sent all of his notes over yet so he says his hands are tied until he sees them. We contacted the hospital to ask about full notes and they are saying the discharge letter they gave us is enough but the GP says no its not... its all ridiculous to be honest. We feel the hospital has failed with their duty of care in many ways and are taking it further with a complaint. I've just contact the critical care support network to see what support I can get for us, and I'm looking now for any other places that can offer support too.
Thank you so much for taking the time to answer and the advice, it really does mean alot to know we are not alone.
All of what you say he is experiencing is common. I have not been to a shopping mall since I was released over 2 years ago, and even now still avoid small children, and anyone who is coughing, sneezing, etc. That was quite a bit worse at first, but has lessened in the last year. My depression came long after my release - as in recently.
I know it probably feels as if you are useless, but you most certainly are not. I would not have survived without my wife just doing what she could when she could.
Physical therapy is necessary, but there is a lot he can do at home. There may be guides online, but if you can't find anything useful, send me a chat message.
Sedation for any length of time can have side effects, and especially ICU stays of several weeks. My wife was warned I might not wake up the same person I was. Fortunately, not much changed, but some did. It is common to be fearful - our bodies and minds are essentially still in fight or flight mode, and may stay that way for many months, or longer. Sedation can affect nerves, causing both physical problems - numbness, pain, and/or difficulty with some physical tasks. I have come to believe it can also cause neurological changes that affect personality and behavior. Many of us lost our conversation filters, and now say what we think, usually without thinking.
Memory loss of that time, and even days or weeks before going into the ICU is common. Those memories may not return. Short term memory can be affected - such as forgetting common words in conversation, or forgetting a task we planned to do just seconds after walking into a room to do it. That can be frustrating. I deal with that everyday, but try to just adapt.
He also may have experienced dreams or nightmares while sedated that seemed very real, and could be having difficulty reconciling those with the real world. Ask him if he wants to talk through what happened so you can tell him of the real events. Let him decide when and how to do that. It can help us reconnect with the real world, and come to grips with what happened.
An ICU stay is very traumatic for everyone - both patient and family, though in different ways. Many experience what is called PICS - Post Intensive Care Syndrome, that includes loss of physical strength (i.e. starting over learning to walk, building strength to pick up a spoon and eat, etc), stress from the event, fear, flashbacks, and behavioral changes. Essentially it can be a form of PTSD.
As Sepsur suggested, if you have a support group locally, join. It should be a great benefit for both of you. We have no real post-ICU groups in the US, so beyond physical therapy, we are on our own here. This forum was my only resource for feedback, but there are a lot of people who know what you have both been through and can offer advise, or just confirmation that it takes time to recover, a lot of time.
Hi lux95Thank you for taking the time to reply to me.
Yes alot of what you have said rings true for us both.
I'm going to look online at what physiotherapy I can do with him at home as we have no follow up with the hospital at all.
He is definitely in flight or fight mode at the moment.
Where you say about changes to personality, that's spot on. He's so different to how he was before so I'm learning how to be around him, certain things seem to be triggering to his mood, his temper is now quite bad at times as he doesnt have the same level of patience as before.
He definitely has PICS and I believe PTSD from the trauma of everything.
But I will do absolutely everything possible to support him through it all.
It actually has helped me reading the replies on my thread as I felt so alone and useless trying to deal with everything.
Hi I’m sorry to hear what you’ve both been through, but a Lux95 has said this is common for most of us Zicu survivors.
I’m 16 months out now. Yes was not going to make it make on more then one occasion, and lucky to be here. I was lucky in some sense as I had a team come and put equipment in for my like seats fir the lounge and kitchen and bathroom, I had a team come morning to watch me shower and get dressed and the same in the evening, nurses coming to dress my bed sores etc.
But I had to learn to walk talk swallow eat with one hand arm , my mental state is still shot, I like others are beyond scared of catching anything that would talk us back to ICU I’ve worn a mask from when I was able to get out and indoors before that if anyone came to see us I’m still waring the mask. I had psychotherapy for a long time but I’m still not right. My energy levels are very low, having to rest during the day. My cognitive skills are low it’s hard to do or think straight depression, look up PTSD, PICS, ICUAW, ICU Delirium, some of the explanation behind what’s happening to your husband. Things will be better but slowly. We have a term here called Our New Normal, we will never know if we will get back to our old selves.
Just post again if you need more advice in the weeks and months and yeas ahead.
My partner tells everyone he’s not the same man that went into hospital
Hi bihH63Thank you so much for taking the time to reply, it means so much that people here will chat and offer advice, friendly ears ect cos I've been feeling so alone trying to deal with everything.
Alot of what you have said is just like what my husband is like now.
He's so scared of being around people so is wearing face masks, making people wash their hands and use hand sanitiser before they come around him ect.
I'm starting to realise that this is all our new norm and may be the new norm for a very long time.
Just being able to speak to people like you who have been through/going through all of this is helping me so much as I just want to be the best wife I can for him to help him beable to cope and get through each day as best he can
Hi. Not problem, it is nice to know you’re not alone which I thought I was before I found this page Just knowing helps. It is a long road I won’t lie to you and it takes a strong partner to cope with all he’s going through, it’s nit just helping us with daily tasks like washing and food prep cooking driving being there fir anything we need that we can’t get ourselves, but being able to cope with mood swings anger and depression and sometimes nothing , nit wanting to communicate. We do what we can for our partners in life but!!! You have to look after yourself as well. That might mean getting a friend or family member to look after him while you get some rest, albeit just going out on your own ir talking to friends or being on you’re own but get that rest when you fell you need it.
Also reading above to your replies try contacting the Hospital Advocate and getting them in involved with the notes issue. That can be sent immediately, it’s ridiculous to say a discharge letter is enough. Not only that on mine it missed vital information about my admission and treatment. Good luck.
Also ask about ICU rehabilitation meetings for him and physio, psychologist not health in mind which they will fob you off with, it’s not that it’s not good but he will need a Clinical psychologist face to face, not phone appointments.
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What was your mobility like when you were discharged home?
Dad has delayed response to swallowing reflex when being weaned from tracheostomy… anyone have any similar experience? 
Please tell me I’m not alone ?
93 days in hospital with covid - 19 and finally home! 
