Icu delirium : Dad been awake 2 weeks today... - ICUsteps

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Icu delirium

Mccarthy0702
Mccarthy0702

Dad been awake 2 weeks today , doctor said his icu delirium seems to be getting a bit worse these last few days , he’s doing fine apart from that and is stable doing well weaning . He is six weeks on ventilator.

Today his blood pressure is up slightly and his heart rate is a little fast could this be related to the icu delirium?

50 Replies
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I definitely felt very anxious whilst suffering delirium, I’m sure my blood pressure would have rocketed. In some instances, medical staff ( because of shortages in sedatives due to the high demand) are resorting to more old fashioned sedatives that give a greater chance of delirium - it does wear off on time - for me - a few days.

Mccarthy0702
Mccarthy0702
in reply to Sepsur

Thank you for your reply. He almost seemed ok Monday Tuesday but Wednesday and Thursday more agitated. The nurses are sitting holding his hand reassuring him , so upset we can’t be there with him am sure that would help 😢

Sepsur
Sepsur
in reply to Mccarthy0702

It maybe cold comfort but I wasn’t pleased to see any of my family because I believed they were trying to kill me or they were already dead. Delirium feels very real. 😊

Sepsur
Sepsur
in reply to Mccarthy0702

There is a helpful pdf on this page about delirium

icustepschester.org/informa...

Marcita
Marcita
in reply to Sepsur

How long did it last your delirium?

Mom was agitated today and tried to remove her lines. Also she didn't want to speak to the doctor.

Sepsur
Sepsur
in reply to Marcita

To be honest it’s very difficult for me to gauge because my ‘dreamscape’ meandered over decades from when I was a young boy to a very old man - so it felt as if it had gone on for years - I travelled the world and all.

I believe I started rembering these dreams once I had reached a certain level of consciousness maybe a week before I properly woke. Very quickly after that I could decipher what was real & what was fantasy - so I am guessing 10days of delirium.(?) but that is a guess

I am so sorry to butt in, but you’re the only other I’ve encountered that time travelled while in a coma. I myself experienced this. I still have a hard time remembering my real age because I was five years (or more, time was fluid there) on the other side.

I am still encountering situations that I’m certain have happened but they were from when I was dreaming.

My lovely, I was in my "other" world for 80 years, my parents were dead and decomposing in tanks I was lying in, I didn't know who I was, i couldn't remember my husbands name, and a nurse who was the secret envoy of the angel of death kept trying to kill me. That and other crazy dreams/nightmares. I spent 3 months thinking I was still dead and at times, I still question whether this is still the "other" world. You are not alone x

My husband has been off sedation for about 3 weeks now, he has good and bad days , he has ICU delirium, he has pulled out his NG tube and a cannula . They put mittens on him after putting the feeding tube back, he pulled those off and the tube again. Stick with it, each day he seems a bit better .

Mccarthy0702
Mccarthy0702
in reply to Ferham

Think that what my dad was trying today , he’s not strong enough yet but he is tugging at his feeding tube .

Upsetting seeing him like that he did get emotional as well , hoping it doesn’t last too long they been through enough physically and now this icu delirium 😢

Ferham
Ferham
in reply to Mccarthy0702

Yes, he did but it manifested into anger , it has been horrendous to witness it. He has a huge recovery ahead of him .

Marcita
Marcita
in reply to Ferham

Mom also tried to remove her tubes today and lines... she also refused to speak with the doctor 😔

They said she was agitated today.

Really is such a confusing time for them . Hoping for a better day and I honestly think the FaceTimes do help . He doesn’t always respond to me and my mum but as soon as he sees his grandchildren he has a smile , nurse said he was stroking iPad yesterday at his granddaughter.

Children really are the best medicine xxx

Wow! My dad is exactly the same. He’s been in ICU for 9 weeks now and only this week has he really been awake and communicating. He’s struggling to understand why we can’t visit him in the hospital (as he went in before the UK lockdown) and insists on being picked up and taken home. But every time he sees his grandchildren, he can’t stop smiling and wanting to see them! Now he just calls on FaceTime to speak to them! It’s really helping his morale x

BBDEBS
BBDEBS
in reply to Ferham

My sweet, I was an A hole to my mum and husband when they saw me awake first time. What they didn't realise what I was experiencing was a living nightmare whilst awake, terrified for my life, unable to speak but thought I was shouting at them. Please don't take it to heart, it will pass x

Loloc
Loloc
in reply to Ferham

My husband went through this 4 yrs ago after a massive MI. On a vent for 6 weeks , pulled all his tubes out repeatedly and had the “mittens” on and in restraints. Best of luck to you🙏🙏🙏.

It could well be his delerium can last upto 6-8 weeks it will subside in the end but it can take its toll on your mental health you can’t imagine it unless youve been through it yourself hope this helped

I really suffered with ICU delirium and have been diagnosed with PTSD as a result of the awful things I thought I saw and dreamt about. For days I was sitting there terrified and at one point I refused to sleep for 3 days straight as I was convinced they were trying to kill me. It didn’t properly lift until I got home and even then, I had one particular delusion that did persist. Unfortunately, it’s another one of those things that no one tells you about an ICU admission. I found that people telling me I was talking rubbish made me worse. There were a couple of nurses who were really good with me who re-orientated asking me basic facts about myself when I started going off on one. Your Dad will get better but it’s very disturbing for the patient and their families xx

Aww he’s not slept for nearly three nights just a few hrs here and there . He’s has a while longer in icu as he’s been there 6 weeks so his recover will be slow.

I really hope it wears off soon as we can’t be there to reassure him either 😢

Hope so too x

It will wear off & the staff are honestly the best people to help. Just keep re-orientating with the facts of what’s happened, happening. Tell him he has been very unwell, that he is in hospital, everyone at home loves and misses him and that he is safe.

I used to behave and talk perfectly normally and then just drop in the random delusions. It all lifted when I came home though but it was and still is so real. It’s like all the things really happened. I have actual emotions and remember bodily sensations from these dreams xx

Just been updated he’s hasn’t been as bad today. They have moved his bed tonight as he’s not slept in three nights to a quieter part of ICU , hope that helps him get some rest.

Thank you for your reply it eases my mind it won’t last forever xx

Ferham
Ferham
in reply to Mccarthy0702

It's so hard for us when you can't be with them to reassure them it will all be okay, rest is so essential to their recovery . It wont last forever .

In glad to hear he is doing better. He sounds exactly the same as me not being able to sleep for 3 days. The drugs they use cause all sorts of stuff to happen with your brain. Hoping that he starts to get better physically and that he’s able to get home ASAP. I actually discharged myself after a day on the respiratory ward, knew I’d recover quicker at home xx

BBDEBS
BBDEBS
in reply to VickyC1982

I also could not sleep for 3 nights straight once awake. My mum tried everything to help me sleep but I just couldn't. My family got me a clock as they thought I was worried what the time was, in reality I just watched it go around and around and around whilst struggling to try and piece my head together. I'd had the most horrific nightmares in my coma, truly terrifying and I still suffer now 4 years later. But I didn't want to sleep in case my new world would go away and I would lose everyone again.

Mccarthy0702
Mccarthy0702
in reply to BBDEBS

Aww untill I found this site I’d never even heard of icu delirium. It’s sounds terrifying and am hoping my dads stories when he is able to tell us are somewhat less terrible than what you have suffered .

Have you now made a full recovery? Xx

BBDEBS
BBDEBS
in reply to Mccarthy0702

Physically 95%. Emotionally 75%, I go from emotional wreck to cold hearted. But to any of my friends I am 100% visibly back to normal, but a bit of a b**ch at times which I never used to be. Partly that is the inability to read people as well, another part is self protection - I push people away. All this going on right now is really tough. I was 38 when my husband was told i was going to die that night, and now I'm coming up 43 and still feel like my life is happening on the other side of a pane of glass with me looking through.

Sorry to be so morose, but yeah, physically I can do everything I could do before but had to re learn it all like driving, writing, washing, getting dressed, feeding myself. I also stopped smoking which was a big help

Ferham
Ferham
in reply to BBDEBS

How long was the physical recovery please , my husband can't walk, write, dress etc, He was on a ventilator for 33 days and has lost all his muscle .

BBDEBS
BBDEBS
in reply to Ferham

I was in ITU for half Feb, back at work part time from July, full time from September, but was due to need rather than desire as I had run out of sick pay. I still suffered with fatigue and couldn't walk far, but it comes back over time. Now I am just good to myself at weekends, and if I have a night out for work or personal, I have a pre sleep nana nap x

Ferham
Ferham
in reply to BBDEBS

Wonderful to see this, my husband is having a flat day as can't open bottles of water I have taken him for him . I keep telling him it's really early days :(

Mccarthy0702
Mccarthy0702
in reply to Ferham

My dad doesn’t wanna talk to us on FaceTime today the nurse said she asked a few times . I felt this was coming as he’s frustrated and can’t really talk back so I suppose he’s just really fed up.

Nurse said he doesn’t want the radio or telly on he just sounds like he’s so fed up 😢

Ferham
Ferham
in reply to Mccarthy0702

They have been through so much already, it's so cruel . Hopefully tomorrow is a better day .

BBDEBS
BBDEBS
in reply to Mccarthy0702

It is mentally exhausting and draining to have a conversation with anyone initially. I just looked at my TV screen for hours unable to raise my arms to turn it on. It will pass, he will be in shock still and not know what is real x

BBDEBS
BBDEBS
in reply to Ferham

Such early days! It is a marathon not a sprint x

BBDEBS
BBDEBS
in reply to Mccarthy0702

It does get better, I promise. Not everyone has the same delirium or psychosis, and ICU steps has helped me so greatly on my journey xxx

I heard dogs barking and was hanging out with people who were not in my room for at least 12 days of being awake in icu. My incident was a little over 2 years ago. I would imagine lack of medical staff and visitors due to covid19 is not helping. It certainly adds a weird element to an already overwhelmingly odd situation. Prayers and love for all keep looking forward and don’t count anyone out until they’ve taken their last breath!

VickyC1982
VickyC1982
in reply to Twacked

I was talking to this old woman who was next me! She never existed and I was talking to a wall! X

Hi my husband has had nearly 3 weeks of ICU delirium , his heart rate , BP and respiratory rate was high. One of the nurses said it's possibly flight or fight ,it did calm down eventually. It has been terrifying for us to witness the anger, frustration and fear . Fortunately the trance like state only lasted for about 5/7 days. He has no recollection thankfully of it .

It will pass eventually, but unlikely he will ever forget the nightmares. Please join a local icu steps group when the world calms down or reach out on here x

Hey, how is your dad doing now? Hoping he is making small positive steps xxx

He’s doing well his delirium has calmed down , although still agitated I think that more as he can’t talk yet and he’s frustrated. He’s been asking for a drink last three days which is a shame cos he’s not ready for that yet , must be so thirsty after 7 weeks !

He doing well with the physio but still has a way to go with the weaning , slow process cos he’s been ventilator dependent so long .

How’s your dad doing now ? X

DrARDS
DrARDS
in reply to Mccarthy0702

Yeh we are in a similar position too McCarthy0702. 7 weeks down, lots of complications, up and down, but now starting to see some light and in the weaning phase.

God bless them! They must be desperate for a drink, especially given how hot it’s been. The trachy is also really annoying me Dad.

Have you had any luck getting a visit or is it just FaceTime? I suspect my Dad thinks we’ve abandoned him and they’ve reported thats made him quite agitated. I’m desperate to visit and hold his hand, but respect they have rules with Covid and this is unlikely to be possible...

Mccarthy0702
Mccarthy0702
in reply to DrARDS

Had a visit today after 8 weeks , had the best hug I ever had . So amazing to see my dad hoping this is a turning point for my dad he’s been so down and fed up this last week not evening wanting to FaceTime .

Hospital he is at had a spare isolation room in ICU and are trying to give every family a one off visit .

It’s really lifted my spirts and to see how well the nurses are treating him , just like one of their own. I cried a lot of happy tears and I truly for the first time feel like he will be home with us sometime soon x

DrARDS
DrARDS
in reply to Mccarthy0702

Oh my God! That’s amazing! We really need that too. I will have to ask if this is possible for my Dad too.

Think both our dads are at very similar stages! Yesterday was brilliant because they added a speaking valve in his line so it was the first time he had a voice and could speak to us. It was wonderful! They only use it for a couple of hours a day and did a swallow test, but it’s still nil by mouth and they will reassess next week! Dad is also desperate for a glass of water and said he’s still very weak in that he can’t get up by himself, but seems to be motivated with the physio which is good. Also has a bit of delirium, but not too much. When your dad is able to speak a little will be the best feeling in the world! They are still weaning dad as he’s also been ventilator dependent for so long, but he’s getting there! He’s now 6.5 weeks in icu and has been awake for the past two.

It’s such a long road, but we are now feeling more confident and better with all of his progress and being able to communicate with him properly (just for 5/10 mins) is a huge boost for us all ❤️ I really hope your dad also gets the speaking valve soon 🙏 xxx keep me updated 💓

I really hope it’s soon they got the valve as he’s just so fed up these last two days not wanting to FaceTime , understand tho as he can’t reply to us only nod his head .

They are very similar it must be so frustrating for them , in his hand my dad thinks he’s capable of going the toilet and getting up which of course he’s not.

Working hard with his weaning and physio and hope this stage comes to a end soon xx

Hey, how is your dad doing? Xx

He’s doing ok , he was so close to coming off the ventilator and picked another chest infection up which knocked him back a bit. Yesterday he seems to be getting back on track .

Just finding it so draining now all the ups and downs.

He’s doing really well with the physio now .

Well done to your dad getting off the ventilator. Xx

No doesn’t seem like visiting is a option. Am hoping once he moves out of ICU and starts the recovery phrase that the physio could possibly bring him out in a wheelchair or something along them lines , I saw that happen on someone Facebook page but not in the hospital my dad is in .

I feel like my dad thinks we have abandoned him also and he’s trying to mouth something on FaceTime, hopeful he’s ready for this tracheotomy valve next week and can talk a little then .

Wishing your dad and your family all the best in these hard times.

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