Breathing issues and delirium

[Becky_S]

My Mom has been in the ICU and on a ventilator for three weeks now. She was admitted after she suffered from internal bleeding after a hysterectomy. Her delirium has not gotten any better. She doesn't follow commands and whenever she is not sedated she kicks and thrashes around. The doctors have not found any certain reason why this is happening. They need to get her off of the vent because prolonged use has it's own issues, but she is also not breathing well enough to have a trach. They also cannot figure out the reason why she is not breathing well. They have not found any pneumonia, a fungal infection, cancer in the lungs, or any other virus that may repress breathing. The doctors are now keeping her constantly sedated because they think her breathing will improve if she doesn't keep waking up. They have also told us now that they don't think the delirium has anything to do with her breathing issues. Not sure why they said that though. This is also very hard because I don't live anywhere close to her. So, all my knowledge of what is going on there is talking to my brother who speaks with the doctors and nurses and her boyfriend who is there daily. What do you do when someone is delirious like this? Has anyone has any experience like this or was in a situation like this? Any help would be so greatly appreciated. Thank you.

[Becky_S]

I do. And I just know that these drugs are causing it. But I'm not her doctor so I can't say if they are necessary or not. She's getting propofol, diludum, seraquil, was on precedex and fentanyl but not currently. Are you a doctor or ICU nurse?

[dsacoda]

My mom was recently in the ICU and was hospitalized for over 40 days. She also had delirium from the first couple of days. She had delirium also last year when she had a stent placement and was hospitalized. One thing I learned throughout all of this is that delirium is common among elderly patients and I also learned that all of the doctors and nurses that I came across really did not pay much attention to it. For my mom, I feel it was ultimately the thing that kept her from getting better, and so I will share with you what I learned. First, if she is on Attivan, get her off! Attivan is known to cause delirium in many patients even if they were fine on it prior to getting to the hospital. Second, my mom was on Morphine initially and she was worse in terms of her state of mind when she was on it. I found when I requested she be weened off of the morphine, she was much more clearer headed and calm and she could actually do the things that she needed to do when she got better. Some options might be to request trying a different type of medication and I did read online that there are anti-psychotics that can help with the delusion as well, although I personally never tried that. I would encourage you to continue to be an advocate for your mom. I was also long distance, and flew down twice to be with her, but it wasn't enough. Don't feel bad about pushing for questions directly from the nursing supervisor and try to be firm yet polite. I was too nervous to upset them, but now that my mom has passed, I feel it may have helped had I either been there or had been more on top of exact specifics with her medications and getting her physical therapy. Also, delirium can be helped by having familiar surroundings... a pillow she likes from home, having family there with her as much as possible, have the blinds open during the day and closed at night, and have any hearing aids in! I hope this helps and I wish you strength as you go through this with your mom.

[Becky_S in reply to dsacoda]

Thank you for your reply. They were talking about Ativan at one point, but decided against it. I'm glad they did now reading what you said. She has never been on morphine but is on fentanyl off and on which is WAY stronger than morphine. They have tried a lot of different medications, even Katamine, to try and ease her agitation. I believe she was/is on a couple of anti-psychotics but seemed to have built up a tolerance to them. My brother and I are trying as best as we can to take care of her from our long distances. My brother in particular is pushes the nurses and doctors with questions. He's a scientist and super smart, so I feel like he knows good questions to ask and if something doesn't sound good enough he pushes them. We are trying to get her to a point where she is even aware of her surroundings. Right now, she isn't. Thank you so much for your reply and my sympathies go out to you. If you don't mind me asking, how old was your mom when she passed and what did she ultimately pass away from? Thank you again for your time and kindness.

[dsacoda in reply to Becky_S]

My mother was 78 and the official cause of death was "Natural Causes," which just makes the family upset because she very evidently had something wrong with her, but they never really knew what and they refused to do an autopsy. Other than hearing and sight problems, she was a healthy woman. I finally pulled some connections to get her transferred to a teaching hospital and they were great there-- did all kinds of tests for muscle disease, cancer, auto immune, etc. and found nothing. So, ultimately, they deemed that she had muscle degeneration from inactivity since her stent last year. She was supposed to be released home and physical therapy was supposed to help her regain her strength. She was supposed to get better. That made sense to me. But, I do think that because the first hospital just put her on morphine and made her lay in bed for two weeks, followed by laying in bed for three weeks at the teaching hospital, followed by two weeks at a terrible neglectful nursing facility that was supposed to get her up but never did, by the time we got her home she simply had been laying too long, was delirious on and off, and when she wouldn't wake up, my sister thought that it was just par for the course based on how she had been in the nursing home. She was told by the home nurse that she probably had just been through a lot of trauma and to let her rest. When I got there, she had been sleeping for 24 hours and we called 911. Her blood was extremely thin (like water) and her blood pressure extremely low. They rushed her to the ER, intubated her, which caused her heart to stop. There were a lot of questions in regards to her health and health care in the end, but I am very sensitive to the situation of an elderly person laying in a bed too long, with delusions, unable to do the work that they need to be doing, and so your story hit me. However, I think you have a little less control, because I think that you have a slightly harder time in getting her off of meds than I did. My mom did not have much pain (and therefore unnecessary meds). She was calmer when she was off of the meds in general. How old is your mom? I am very interested in helping others in regards to delirium, which seems to be quite common, but often an oversight of nurses and doctors. It is important for the doctors to hear from you that the way they are acting is different from normal. This is what I read later. That they don't know when they see an elderly person if that is their normal behavior, and so they let it go. Please insist that she is delirious and what I also learned is that you may request a neuro psychologist to do an eval and suggestions for treatment. No one ever offered that to me, so do look into it. I will try to find the article and send it to you. I feel your pain.

[dsacoda]

I found this helpful... but I have another one that I will try to find as well...

ncbi.nlm.nih.gov/pmc/articl...

[dsacoda in reply to dsacoda]

medshadow.org/features/hosp...

[dsacoda]

Please feel free to write again if you need to talk. My best to you and prayers for your Mom.