Hi everyone. A friend recommended I post on this site as there are a lot of great people to have constructive discussions with!
My father suffered a cardiac arrest 5 weeks ago today. He received CPR 3 minutes after collapsing and was shocked within 8 minutes. He was put into an induced coma for 2 days where after sedation he initially showed only response to pain which then gradually progressed to moving limbs spontaneously. On Day 7 he had a tracheostomy and started to obey simple commands. On Day 10 he started to speak very softly, recognising family and asking nurses for tea.
Today (Day 38) he is able to go for 15 minute assisted walks with the physios and able to breathe on his own. The problem is his ICU delirium. At good times, he is able to phone me and have conversations without concentration lapses. At bad times, he gets agitated and very confused particularly at night and tries to get of bed and pull out tubes. At times, the doctors tried switching his meds which actually made things worse. He also had to be heavily sedated and couldn't even tell night from day when he picked up a chest infection (which he fortunately cleared) a week ago.
The doctors still don't know whats causing his delirium with 3 brain CT scans and 2 EEGs showing nothing. Now they want to do an MRI which they now tell us (because of his long term delirium) to prepare for the worst!
I was wondering how long long has people seen ICU delirium last? Should we expect the worst despite 3 CT scans showing nothing? I have read some informative posts about medications, pain, infections etc causing delirium rather than brain damage. Just looking for some reassurance is all.
With COVID we also haven't been able to physically visit which could help with Dad's delirium. Can anyone share any tips/tricks to keep him reminded that we are there for him! We have done video calls daily but he gets a little frustrated that we are not there.
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In the ICU, benzodiazepines appear to have a significant role in the delirium developing. There are some paralysing agents that appear to have a higher rate than others. The difference between Prolonged ventilation and ICU length of stay compared to nonbenzodiazepines use is quite significant. The sedatives are known to suppress some rapid eye movement (REM) sleep, so although you are unconscious - you’re not experiencing proper sleep. So sleep deprivation plays a role too. Combine being extremely ill, the organs may not be functioning at full par - the kidneys & liver might not be clearing body of toxins, sedatives & medication - all create a heady cocktail. Age might play a part too.
Orientating people and early diagnosis & treatment will hopefully decrease delirium.
My father in law had it on & off for a few months whereas I had it for 11 days approx. I spent 57 days unconscious & he spent 3 days.
I have noticed that shorter acting medicines (dexdor) seems to work better on my Dad. The doctors reasoned thay switching to longer acting meds (quetiapine) seem to be linked with him having more agitations and being less compliant with physios during the day. It could be due to his reduced clearance!
Hi , As Sepsur says, it does lift, it just feels like it won't, It eventually lifted for my husband, after approx 3 weeks . When he was in the recovery ward, due to how severe his delirium was, we were able to visit. We took him in a memory board, with a selection of photo's of family and friends . Initially he didn't know who we were , he also got very angry and sometimes aggressive that we weren't there 24/7 . When we revisited , he would say really hurtful things and no recollection of our last visit or zoom call. Thankfully it lifted eventually .
Thank you for the response Ferham and I hope your husband has made a good recovery. My Dad is adamant he is fine and ready to be discharged. It is quite difficult to deflect conversation topics due to how convinced he seems which is a little frustrating. I will be sure to bring along photos and memory board. Thank you for the ideas!
Hi Sepsur! Good news, I finally get to see my Dad today after 5 weeks. I will certainly be bringing a tablet with easy access radio stations and football highlights videos. Thank you for the suggestion!
I’m 72. Back in November ‘19 and again in December I was admitted to our local hospital before being transferred to Birmingham. I had pneumonia/ sepsis and a rapidly failing artificial aortic valve. I also had a heart attack.so before Christmas my valve was replaced. I was sedated / ventilated for 6-8 weeks. My family had “the he’s not going to make it call” twice. I also had trachy. I was unwilling to come round, although there were times that I might have spoken but I have no clue about that. I had hallucinations/ delirium, what ever the difference is????
I lost extensive weight and had to learn to swallow, talk, eat and walk etc. I still have flash backs and can remember all the nightmares/dreams. A part from not knowing what happened during my time in icu I have no memory before icu for about 3 months. I came out of hospital mid March and I am still recovering.
The effects of icu are very individual and in some respects, although you won’t think so, you were probably luck not to be have been able to visit. My wife & family visited every day and it was traumatic for them and most of the time I didn’t know they were there.
I do think you need to support your dad in any decision making. All I wanted to do was find away to get out of hospital and I, despite what I might have sounded like, was in no fit state to make that decision.
Once home the recovery will really start but at least you will be doing it together. Make sure you get an OT visit and that all the bits and pieces are delivered and in place. No matter what he says he will need them
I am glad to see you are well enough to post this reassuring message!
There are a lot of parallels with your recovery experience to my Dad's. He is indeed very insistent that he is fit and healthy and is adamant he is ready to be discharged. He sometimes goes a bit too far by getting out of bed, prompting nurses/docs to sedate him. It can be so difficult to reassure him and convince him he needs a few more days/weeks in ICU.
We used to read to my younger brother And asked for the radio to be played when we weren’t there. Are there any programmes your Dad likes. For us we had his favourite music station on and when his football team were playing live. I saw my younger brother go through this and it was hard and upsetting to see as he said strange things and behaved out of character. If there are things you can do like voice calls so he can hear your voice I am sure it will help reassure him. There are resources on here on ICU delirium which helps explain what is happening. I am sure things will improve for your Dad .
I finally am getting the chance to see my Dad after 5 weeks. I will definitely bring a tablet with easy access radio stations and some videos of family etc.
Hi! Sorry to hear about your Dad. I was in ICU in April, where I was mechanically ventilated for 9 days. I too suffered delirium.
In my mind, it was mostly when I was in the recovery ward after ICU. However, I suspect I had it all the time and was just more aware of it when I was more conscious of my surroundings. They had to play around with my meds too, in order to discover the degree to which they were contributing to my delirium.
You are right in what you read about what causes delirium. Contributing factors include the drugs that are used to save life, infection, isolation, the hospital environment itself (no-one normally has beds which inflate, beepers or loud trolleys in their bedroom at home!), poor feeding can also contribute.
About 70-75% of people who are ventilated experience delirium, so your Dad's experience, whilst worrying, is not unique.The Doctors know how to resolve it, but in my case therwas no quick fix. It took a few days to sort.
Try not to think the worst re delirium. I attach a good American website on delirium, icudelirium.org/
Best wishes to you, your Dad and your family. Regards, Pete
Thank you so much for your response Pete! Glad you have made a recovery.
It is certainly reassuring to hear about your experience and what the doctors tried to do. When my Dad is having a good day, he really does complain of hunger, so I might just chase this up!
I can only imagine how daunting the patient experience can be in the ICU and certainly believe it could be contributing to delirium.
Pleasure. Feel free to DM me here if you wish. I have other info on delirium and general recovery , if needed. Also might be worth you looking at ICU steps channel on youtube. They did a webinar on delirium which is on there
I thought I was dead for 3 months. I am now having trauma counselling for what I experienced, in Feb 2016. I'm so sorry, it is not a linear path and it is a marathon not a sprint x
Just thought I would share my story to see if it helps.
My husband was on ITU for 25 days was in an induced coma, had a tracheostomy and was ventilated for 25 days.
Whenever they tried to reduce sedation my husband would become so agitated, like your dad trying to pull his tubes out etc.
The hospital really struggled to get him to “wake up”. He had several brain scans and no cause was found. We were not allowed to visit him because of Covid and he was 300 miles away in a hospital.
On day 21 he was repatriated nearer to home and I was allowed to visit the ITU.
The delirium I found really distressing and I wondered if it would ever end. At one point the delirium was so bad the consultant informed me I might not get all of my husband back! I was distraught.
The turning point came for us when my husband was moved from ITU on to a normal ward. All the tubes being removed, going from being tube fed to eating normally, and being able to get up and slowly learn to walk again.
Within a few days the delirium settled, and my husband now can laugh about the things he was saying.
He still remains in hospital, but hopefully will be home soon.
The things I think that worked for my husband where seeing me and hearing my voice, listening to the radio and moving from ITU.
He hated doing FaceTime when he was confused as it confused him even more.
Gosh Lottiedog20, this is exactly what I am going through with my Dad. I really really hope your husband is home soon.
The delirium is so upsetting! My Dad has a good weekend but just last night, he was a little confused again which brought about a little frustrating from the family. Thankfully his pulling tube habits have subsided over the last few days at least!
I think they are going to accelerate my Dads physio and hopefully get his trachy and other lines removed. Your husbands recovering delirium story is so reassuring with what my Dad is going through, so thank you very much for sharing this with me!
Thank you for your suggestions! My dad gets frustrated with Facetime as well!
Hi just to let you know my husband has been home for 2 days now and his delirium has completely settled. He is so much better. He realises he had delirium and quite often will ask “ is that real or the delirium”?.
He sleeping so much better since being at home but requires the radio on at night to avoid nightmares. He talks about his delirium and we reassure him it’s normal. He cannot remember any of his stay in ITU only his stay on the ward.
All good news but don’t get too complacent. I have been home since mid March and still get flash backs. They can be triggered by anything and nothing. I too have the problem of determining what is real / true memory. It’s not always that easy especially when there is a period of lost real memory before ICU.
I am paying for CBT because it is not available locally and am developing strategies to settle my life. See my CBT log
Hi thank you for your reply, we are not being complacent we realise we have a long road ahead of us.
I just wanted to share some positivity to help others. As for me reading others positive news really uplifted me and kept me going through the difficult times.
We realise it’s very early days but fingers crossed so far so good.
I would say whatever the meds used could be the issue. I had 5000 coma dreams. Very real and exhausting. I wrote them down. Takes time to forget them so sleeping with a light on may help.
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