Is it normal that my mum isn't obeying commands after 3 weeks awake? (Total 6-7 weeks in ICU)

So my mum has been on and off the ventilator and has done 24 hours without. The weaning is going well. Still has a hospital infection but hopefully the holes -caused by over ventilation are getting smaller and will know for sure when they do next chest scan . They are doing a bit of Physio and stretching her - thank god. I wrote to the head of Physio and there is talk about a special chair she can sit in. Dying for her to get out that bed for a bit. As I'm sure she is. She is still delirious and her frustration and discomfort is clear and real to me. She is a bit more with it but still not obeying commands . Sometimes she nods straight away when I ask her questions and she's mouthing things to me but mostly I just can't make out what she's saying . She won't or maybe can't move her legs when I ask her. She is able to rock them side to side and is lifting her head off the pillow and moving her shoulder and upper back muscles . So altogether seems to be getting better but very very slow progress. Did anyone else take a while to obey commands and come out of the delirium? I'm wondering if it's because she's not on her normal anxiety and anti psychotic medication whilst she's on the pain killed oxycodone (which they are weaning) she is moving her head around bsck and forth and grimacing and very unhappy but is calmed when reassured and spoken to . Wish there was a psychiatrist at the hospital!? Only the pharmacist that I can speak with about this abd the ever changing doctors .

6 Replies

  • Ellie you have got the MOST important point there, that your mum calms when reassured, cant stress enough that this is one of the most important things that you can do for her, all along the road to recovery she will, at times think she is never going to regain her strength, never going to be able to walk unaided again, and never going to be able to the things she used to do before, because it takes a long time to master all these things it seems like they are never going to come back again, but bit by little bit small things happen until one day you think, oh i have got that part of me back.

    as i have said to you many times my illness only went on for a relatively short time compared to your mum but even then it has taken me over 12 months to get anywhere near my old self and even now i am still a little tired, so just keep doing what you are doing and you will both come through this, i am just glad that you have seen some improvement however small it is of mega importance, stay strong and make sure you take care of you as well as mum, sending hugs xxx

  • please contact me whenever you need to sound off, I understand more that most what you are going through right now and how helpless you can feel in this situation,even if you just want a rant I am here, still thinking about you each and every day

  • Thanks Isabel . Love reading your messages . It's crazy how long it takes to regain strength . I'm very lucky to be in touch with you and some others that have been through it . Will be printing out your messages to read to her read to her whev she's well! Xx

  • Hi Ellie,

    I can understand what your mother is going through as I spent 3 months in ICU with no recollection of the first seven and a half weeks, even though my wife and family say at times I appeared to be communicating with them, I was probably the lucky one not knowing what was really happening, but at times in that drug induced world, things can appear very frightening, you also can have up to 2% muscle wastage a day while in ICU, I remember not being able to move my legs, unable to speak because of my tracheotomy and found it difficult to communicate even with a pen and paper, getting out of bed for the first time felt like torture to start with but the physios do a great job (even if it doesn't feel like it).

    Unfortunately three and half years later, I've been left with post ARDS pulmonary fibrosis, a result of my double pneumonia, severe sepsis, MOF and ARDS, the road to recovery can be a long bumpy ride but with the support and understanding from family and friends it's a lot easier and if you have an ICUsteps support group near you I would recommend contacting them, details can be found at

    Best wishes to you and your mum on her continued recovery.

  • Thank you . Sorry you have not fully recovered . I know it's a long road ahead and she may not fully recover. She is also very lucky though that she made it as it didn't look good so will plan to stay positive And always feel lucky like you that she has a second chance . Xx

  • Hi Ellie, It's lovely that your mum has such a compassionate and caring daughter and this will really help her. Delirium is very common in critical care especially when someone has been so ill, it can go on for a few weeks and of course is really upsetting to both the patient and the relatives. You are doing all the right things, keep talking to her about normal things and trying to reorientate her (show her photos, always say what day and time it is and where you have been etc). I suggest asking the staff about her normal medication and explain that you are worried that she is not having it, sometimes it is appropriate to omit it but now she is getting more alert they may want to add it in again and antipsychotics take a while to gain full effect. Might be worth asking if they can get her talking there are things you can do for patient's with tracheostomies which allow them to speak and this tends to help with delirium. Ask her questions to get her brain stimulated again nothing hard and if she can't answer them it doesn't matter but just random things e.g. what was that shop called where you used to work? or whatever is relevant.

    Best wishes to both you and your mum, its going to be a long haul but it sounds as if she's making good progress, 24 hours off the ventilator is a big step forward!x

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