Help me help them

Ex ICU nurse. I remember when I first found out about the experiences sedated patients have... I talked to my unconscious patients, orientated them and told them that they were safe. What else could nurses do? These experiences are awful and you all must have been so scared, I can't even begin to imagine.

I'm going back into ICU mid 2017 and would love to help more, all ideas are so very welcome.

Wishing you all peace and health.

😊

20 Replies

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  • Hi Fifoh, you sound like a wonderful ICU nurse ! I hope your ICU colleagues can learn from you.

    I realise that ICU staff are extremely busy what with having to monitor all the machines and look after very sick people etc but if you could share some of your expertise and empathy, it would be brilliant. When I was in ICU, I don't think many of the staff understood my very peculiar mental state. Trying to sort out what was real, from delusions and paranoia, was hard work for me.

    And I'd guess that many ICU patients are aware, at a very fundamental level, of how sick they are (even if sedated), which can be very scary. Telling patients they are safe is a very nice thing to do.

  • My aim is to one day be an educator and do exactly that. Until then I will continue with suggestions.... which may or may not be heeded.

    I hope you have made a full recovery and wish you a long and healthy life :)

  • Hi ex icu nurse. I was in icu for over 2 weeks and the only thing i remember was the dreams . The worst part was when I awoke I had no idea what was going on and no one was telling me and having had a traccie I couldn't ask. So please remember the patients want to know even if they can't ask . Worse still no one advices me about how long and hard road it would take to recover . I am 2 years on and still not a 100%

  • I'm so sorry to read that you're still not over the mental anguish left from ICU.

    I'm not sure why some nurses don't communicate with their patients, particularily as they are waking up or once sedation has been weaned... that look of relief and understanding from a patient when you explain what's happening to them, and why they might be hallucinating or feeling strange.... is uplifting, it can make your whole week better!

  • Hi Fifoh . Thank you for your concern. My anguish started with my GP getting my diagnosis wrong . Somehow icu managed to save my life . Only problem was a lack of communication so please tell all your colleagues to talk to us . It helps no end. Cheers and all the best in your future

  • I spent almost a month in ICU battling sepsis, pneumonia and pulmonary embolii. My family were not told to keep a diary although I have read about this being very helpful for the patient to understand what happened to them. They were not allowed to take a photograph of me but again I think this would have been helpful for me to understand my situation. I cannot praise the ICU staff enough because they saved my life. It is commendable that you have asked how you could support patients in the course of your work. I think a diary and a photograph may have helped me to separate reality from delerium and horrific dreams. I still get horrible dreams all hospital based and usually the morgue features in them. It is unfortunate that the support afterwards is also scarce. Perhaps I was told I was safe but I have no recollection of this. I think you are very special and an ICU angel.

  • I do like to make a special point to talk with families and explain what is going on with their loved one (as much as I am allowed). I love your idea though... a diary is brilliant!

    Most ICUs don't allow photographs, but I do encourage family to bring in copies photographs of themselves, the patient and their home, so that as they wake, the patient can see people know who they are..... and it reminds the staff this is a person too.

    This is a great forum for support and I agree the hospitals should do it.... but I doubt the funding would ever go there. There is too much controversy even admitting it!

  • Hi lesanne

    My family were adviced to keep a dairy and trust me it was a massive help . But they were not allowed to take pictures. Not long after I came round I asked my wife if she had any photos, she said no and l was very disappointed.

    Regards Mick

  • Same Mick, I really need a photo of me to understand how ill I was but don't have one

  • Hi you sound like a fantastic nurse. I am 18 months on from my 3 week stay in ICU, I'm still struggling after being diagnosed with PTSD due to delirium etc. The things that I thought had happened to me were horrific and so frightening and still are. I wasn't told that is was common to have these thoughts until the day before my discharge home! Even when family & friends visited I was still in the world in my dreams, constantly feeling confused and scared. The nurses were great in the job they do in a medical way ( proof is I'm still here) but I think they lack understanding of the delirium and the way it effects people. I would have benefitted from being reassured that I was safe and being told what was happening around me. I was convinced the staff were imposters trying to kill me. Having a trache I cudnt communicate which was so frustrating. I think the best you can do is give constant reassurance and to let the patient know what is going on medically and mentally around them. Also to give the family information about the delirium so they know what to expect and can also reassure the patient.

    Hope this is helpful to you, continue doing a fantastic job

    All the best

  • LeBabes, I think your observations are spot on. Exactly how I feel about my own experience. Thank you for the comment. Best wishes, David.

  • It will be 6 years ago for me next Sunday (18th) unfortunately most of the first 2 months of my 3 months in ICU are missing, as I was so critically ill and given a less than 10% chance of survival but the ICU staff were fantasic in keeping my wife and family informed and told my wife to keep a diary in the hope that one day I would still be around to read it, so was also lucky to have my ICU nurse niece working in the unit (although she was moved into HDU while I was in ITU) who would visit when ever she could & when she finished her shift would sit in her car in the car park in tears with the knowledge of how bad thing were. From the time I can remember I couldn't fault a thing I had become known to everyone and they were like extended family members, the only thing I think that really needs improving is the discharge to a ward as so much seems to get lost in translation with little knowledge of what I had been through.

    I owe so much to the nurse at my second follow up who asked me to speak to a patient (who sadly later died) which led me to being involved in setting up a local support group and leading to me becoming a trustee of the ICUsteps charity, enabling me to speak at conferences about my experiences helping healthcare professionals understand the difficulties faced by ICU patients, it's a great way of giving something back and saying thank you to the amazing doctors & nurses that are so dedicated in saving our lives.

    Bill

  • There's an ICUsteps Charity? Conferences? I would love to speak at one of those. How do I get involved?

  • There are several ways to get involved with ICUsteps from getting involved in a local support group or helping set one up with the help of a healthcare professional, that's how I first became involved that lead to me speaking to hospital staff on training days and then I was fortunate enough to be invited to apply to become a trustee of ICUsteps. Details of becoming involved in research projects, a list of local support groups and a guide on setting up a support group can be found at icusteps.org

    There has only been one ICUsteps conference which was in 2013 as since then we have been busy working on building a network of local groups to give them the full support of the main charity.

    If I can be of anymore assistance message me and I'll get back to you.

    Bill

  • Thanks Bill, I'm in the Telford Shrewsbury area, any contacts in this neck of the woods you know?

    David.

  • Hi Fifoh I was in ICU 3years ago when I woke from my coma I was too scared to go back to sleep my ICU nurse at night didn't speak to me at all she had to put a oxygen space helmet on me to help with my breathing she didn't explain what it was for I was so frightened plus very thirsty! She gave me occasional sips through a little window but got bored then slapped some Vaseline on my lips which was disgusting and told me to go to sleep I was so sore and couldn't get comfortable! The ICU bed had a rippling effect but hurt my back the whole night was a nightmare! The ICU nurses during the day were brilliant. So please advice night nurses some patients are really frightened at night because of what they remembered when they were in their coma and not to dismiss them like I was . Because of that I now have PTSD 😢

  • Hi in 2015 I had a very bad asthma attack which resulted in my 3rd visit to ICU since 2012. The difference this time was I was awake on previous visits I had been in an induced Coma. I had a fantastic Male nurse look after me on the night shift. The nurses on the day shift some were fantastic but I had 2 who in their own words could not understand why I was still there when they had discharged a female who they had liked to a general ward. They sat me on a chair and left me for about 4hrs in the end I asked another nurse to help me back into bed as they just ignored me. Having been through this it changed the way I thought of The ICU nurses theirs some good & some not so good.

  • IMHO there's a huge divide between the knowledge and training of ICU nurses and those on the general ward. Patients are moved from ICU to general ward far too quickly, probably for financial reasons, and general ward staff have little or no knowledge of what recently comatose patients are experiencing mentally. Because the hallucinatory effects of induced coma diminish in waves, across the course of 24 hours reality and delusion can be like switching TV channels so quickly little of it makes sense and can be very scary.

    Recovering patients need constant and repeated reassurance that they are in safe hands, where they are, why they are their, that the nurses and doctors are helping them and not trying to kill them, ( a common impression ex coma patients have.), that their loved ones have been to visit and are coming to visit again soon. It would help if the nurses noted somewhere the names of the patients regular visitors and can say, " Joe or Sue or Mum are coming to visit you later.", or, "Your friend Fred came by to see you earlier but you were sleeping, he said he'll come again when he can." That sort of thing.

    Caring for ex coma patients is not the same as caring for those with simpler conditions such as joint replacement or infection recovery, those people are in pain and distress but they know what's going on. Ex coma people don't.

    IMHO nurses working with ex coma patients should have to have passed some sort of empathy screening. If he/she is unable to connect psychologically and empathetically with a coma patient they shouldn't be working in that department.

    David.

  • And BTW, thank you and Bravo to Hidden, I'm sure s/he'll be welcomed back to the ICU with open open arms. Thanks again for this thread.

  • Hi ex icy nurse

    I found the hardest part was when I came round . I had a traccie so could not ask what had happened to me and no one thought to tell me . I was a bit scared . It took days to piece it all together from family . So reassurance after a coma is vital

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