Long term delirium

[Care4]

Hi. I am hoping someone can help me with some advice. My husband was admitted to the hospital 5 weeks ago with pneumonia. He was intubated 3 times with propofol as a sedation. After coming off the tube 2 weeks ago , he has still not regained his mind. At times he seems like himself but quickly goes into bouts of hallucination and then anger and aggression. I was told icu delirium was the cause. He is on a no sedation order due to his sensitivity to them. He seems to be taking so long to recover and i am the only family member at the hospital everyday. What can i do to help him and how long can this last? Thank you for any advise.

[Kit10]

Care4

Here's some standard advice that may be useful:

Furst, look after yourself, you can't help him if you are exhausted, so make sure you are eating and sleeping properly.

Keep a diary of everything that's happening because when he does wake up he'll probably be very confused about what has really happened and what was hallucination, and it will help him sort it out if you can talk through with him what you know was real. I guess you haven't been doing this so see if you can write down things that have already happened. Include anything he says that may seem weird because it may make sense if you knew what he is dreaming. Talk a lot about it later.

Let us know how it''s going.

[Kit10 in reply to Kit10]

Sorry if the above sounded a bit abrupt, I was interrupted before I could finish or edit it properly.

Your husband is lucky to have you caring for him. It's bound to be a difficult time for you. You can talk here as much as you need to.

Delirium is very common in ICU patients, if you have a chance to read through previous posts on this site you'll find lots of personal accounts about it, including some by me. You and your husband are not alone. You'll also find lots about the fact that it often takes longer than you might expect to recover from an ICU stay, and to come back to reality after being on sedation. If he is aggressive and angry that's probably a reaction to whatever he's been dreaming about, so don't think he's angry at you, just be as calm and reassuring as you can. He will probably need to talk a lot about what he has been experiencing, the dreams you have in ICU can be very vivid and often frightening, and can seem more real than reality.

I was in ICU during the height of Covid lockdown, when no visitors were allowed at all. I did manage to get a radio by my bed which let me know what was going on in the outside world, It may help him get back in touch with reality if you can talk about the date, weather, seasons, news, family news etc. I know the news right now is all about the Queen, which may be difficult to talk about, and may not sound very real to him. It hardly seemed real to me when I first heard about it. But you know him best, you'll know what he'll be most interested in.

When he is a little better, you may be able to help him with some aspects of personal care that the nursing staff don't have time or permission to do - hair, teeth, nails and shaving aren't life-threatening issues so may get overlooked, and it may help him feel a bit better if you can bring him things like his favourite toothpaste, a good toothbrush, a good razor (If he uses an electric razor, there probably aren't shaver sockets by the beds but you can get an adaptor for an ordinary plug), nail clippers, etc. Nurses aren't allowed to tackle toenails, but you will be. Little practical things like that can make a big difference when you're very ill.

Do let us know how he is, and if you have any other concerns or questions do ask here, that's what this site is for. Wishing you both all the best. Kit

[Care4 in reply to Kit10]

Thank you so much. It helps to know there is support out there for these issues. Unfortunately, sometimes extended family only wants the good news, not the reality of the situation. Your advise was very helpful and much appreciated.

[Purdeypaws in reply to Kit10]

purdy paws i was in icu for 3 weeks on ventilator and came out of it with pics and am still in recovery,however my mother in law has been in hospital for 45 days with delirium,and has some awfull side effects,she is agressive and angry and then the next minute kind and calm,we are caring for her at home and it is one of the hardest things we have done ,it is easy to say stay calm and you will cope,it has to be one of the most frustrating conditions ever,it is fine to feel angry with the person concerned as you are sad for the person you have lost at the time,walk away re group your thoughts,deep breaths and come back smiling,you are only human,there are only 3 of us to do the caring,but if you lucky enough to have more people to help give you a break that good,things do get to a level of normal,but it will be a new level take care

[Kit10 in reply to Purdeypaws]

(I'm not saying this to have a go at any caring relatives, but for the sake of patients who cannot say it for themself. And for my own sake because I need to say it, rather than bottle it up any longer...)

Please remember .. yes it is a difficult time for you as a relative of a patient in ICU, but it is an even worse time for the patient

Just because they cannot respond, doesn't mean they are not experiencing anything.

You can walk away, you can go for a walk, have a coffee, go to the loo - they can't, and may not be able to for a long time. They may not even be able to take a deep breath and count to ten. They are trapped in a body that doesn't work, and with a brain that's playing tricks on them. They cannot walk away - from nightmares, from hallucinations, from pain, from discomfort, from fear, from the indignity and humiliation that go with "intimate personal care", from the frustration of being immobile and unable to communicate, from the horror of having tubes in bodily orifices, from the electronic bleeping noises, from the bewilderment and disorientation, from the total loss of control and autonomy and privacy and dignity ... and if the patient has any awareness that they are seriously ill, from the fear they may feel for their own future. I would not blame anyone in that situation for being angry and frustrated, even without any confusing hallucinatory dreams.

I have been there and have the scars. It was easily the most appalling time of my life.

I'm sorry but I can't tell you what a relative did that helped, because I had no visits and no helpful relatives. Maybe someone who did can say what helped.

[GabiNick in reply to Kit10]

Unfortunately i remeber those days very clearly. My husband had Covid in 2021 Jan and after 3 weeks of sedation induced coma. He was a very different person. All medical staff told me to correct anything hw says that is not true and talk about the past with him constantly. Because Ialso was the only one going to visit and be with him. It was very tiring. And there were days I felt I didnt even want to go. It affects you just as much as him. I made a picture page with all the family members and labeled it so he would know who they were. I also did alot od messenger visits with the kids and grandkids. Sometimes it went well and he regognized them other days he would ask them who they were which was just as hard on our kids. I would say for my husband it was 3 weeks untill things started to settle down. The good thing is the doctors did not allow him home till he could tell what was real and what was his imagination. It is a hard road to go on but it is worth it. Try to find 1 or 2 friends that you can talk to continuously. I used to call my daughter every night on the drive home to discuss. Although as a after thought now i would not do it again. I would pick a girlfriend because Ibeleive I put to much stress on her because of it. Because she had to deal with both parents going through turmoil. We also started a diary with everything that happened each day. I do have to say because of the anger there were many days i was grateful he was tued to the belt. And the nurses were very good at reasuring me it was normal and not to take it personally.

To finilize it a year and a half later after learning to talk, eat and walk again we still talk about it alot, not being able to beleive what we went through. The one thing i found that helped us was to get him off of sedatives. They used to give him those to sleep. Which he still didnt do.

It takes lots of prayer, love and patience. But you can do it.

Take care of yourself that is just as important as taking care of him.

[Care4 in reply to GabiNick]

Thank you so much. A while lot of what you said hit home. I do talk to my daughter. She is always there for me. And we had a no sedation order for his medical team. They also wanted to put him on sedation to slerp but it just made it worse. They are now trying melatonin which seems to help. I am very tired and you are right , sometimes I dread going, but it's those times when he is himself that make me have hope and kerp pushing forward. Thank you for your kind words

[GabiNick in reply to Care4]

try to find a friend to speak to more than your daughter. I omly found out a year after everything happened when my son in law told me he was so scared for my daughter because she was dwindling and pulling inward. Even though she is the strongest in the family she didn't let me see how she was hurting so badly and didnt have her mom for support because she was busy suporting me.

I never lnew i had put so much pressure on her and my son in law didnt want to tell me because they were worried about me. Unfortunately i was also on the brink of breaking. This delerium is somrthing bery hard to go through if you dont have enough support sustms around you.

My husband is well now. For him it was difficult being put from a strong man to someone who had to learn to do everything all over again. We laugh about it now sometimes. My only warning is that you will find your husband changes permanently. Love him with all your heart and be patient. It does get better. I find my husbamd and i appreciate life more.

[GabiNick in reply to GabiNick]

sorry for all the spelling mistakes. Its hard to type on these phones

[Sepsur]

it is not uncommon for people to have a prolonged period of delirium - everyone reacts slightly differently.

It probably will lift of its own accord but what you can do is help orientate is keep talking to him about day to day life. Photos of loved ones, playing music or radio stations that he would.

icusteps.org/assets/files/i...

cc-sn.org hold a drop-in on zoom for relatives every Tuesday 8pm BST

[Care4 in reply to Sepsur]

Thank you for your reply. I will definitely try some of your suggestions.

[Lottiedog20]

hope this helps.

My husband was 5 weeks in an induced coma, when he came around he seemed quite lucid but then would say the strangest things. To be honest I found the delirium one of the hardest things to cope with. The physical illness you can see improvement/do something about, but the delirium is so difficult. You also worry about it being permanent.

My husband was put on some anti psychotic drugs to help through his and he was gradually weaned off them and he was absolutely fine.

2 years on we laugh about the funny things he thought/said/did, but at the time it was pretty scary.

As others have said look after yourself, go with it, it will get better.

Ask his medical team about things to help him.

Good luck xx

[Care4 in reply to Lottiedog20]

Thank you so much for your reply. You are correct about it being so scary and difficult. I worry a lot about it being permanent because that is what a few of the nurses have said to me. They keep asking about his baseline at home and does he have Alzheimers od Dementia. I keep telling everyone he is a very normal person at home withno problems. Seems like they are giving up because it is taking so long. Even asking if i would consider a nursing home. I see the progress and my lucid husband shines through. I will kerp the faith. Thank you

[Hidden in reply to Care4]

hi. At one point the icu team thought I might have dimentia, when I was in ICU on a ventilator for 5 weeks. But once I came round and realised where I was I recovered ok. I was given an anxiety tablet for about 3 months, but once home I did not need it.

The delerium is a bad experience as often involves near death experiences. It is clear everyone recovers at a different speed so you just need to be patient and understanding.

[GabiNick in reply to Care4]

keep positive and i will keep you and your husband in my prayers

[Sepsur]

everyone reacts differently to sedatives, your loved one may have a low tolerance to any narcotic drugs & hence be more reactive, normally they do try to alter the sedative ( or remove it) if there are signs of delirium - mine lasted 11 days after a 57 day coma, I have friends who experienced it for much longer and other who had none at all.

[BilliyR]

this isn’t unusual.. it will take a while for the medication to come out of your husbands system, he will get upset/angry as to him they are very real, try and ask him to talk about what it is he’s seen as this will help him and reassure him, it is extremely upsetting however as the medication does wear off he will be able to understand that these things were not happening. Be there for him, that’s all you can do……

[FamilyHistorian]

not wanting to repeat what has already been said the most important thing is that you look after yourself.

I had pneumonia, sepsis and was put in a coma. Initially I was too I’ll to have a heart op. Once done the family were told, twice that I wouldn’t make it. They tried to bring me out of the coma a number of times but I wasn’t ready. I think it was about 6 weeks later that they completely stopped the sedation but it took more time for me to come back. There were times when they were trying to ween me off when apparrently with the aid of a voice box I was able to communicte. But I have no memory of that. During the time in my coma I lived in another world hallucinating . I can remember that very well but it doesn’t cause me any issues now. I lost a tremendous amount of weight, I had to relearn t o swallow, speak and walk and I am still regaining my strength.

Talking about it for both the patient and family is very important. I have changed; I have always had a wicked sense of humour now it’s evil, I have no emotional filters and my brain doesn’t control my mouth.

I should say I was also very aggressive and in icu they put gloves on me to protect myself and others. I had pictures of all the family with their names as I had to relearn them - it was very hard.

The Critical Care support network runs a relatives drop in on a Tuesday evening, on zoom, at 8pm. You may find support from them

[PeterJu]

hi

I am sorry to hear about your husband's delirium. I (and many others) suffered from it too. The doctors will be working hard to adjust medication and also to ensure any infection (which can trigger it) is dealt with.

Delirium can last many days, and after it I felt not really really sure of what was going on, and behaved fairly oddly. His aggression is a common response. I had it too, and whilst I am no medic, I think it is a manifestation of "fight or flight".

I think you just being there and being comforting will help and you should not under-estimate its power, regardless of probably how helpless you feel. I have attached a link to delirium which you may find helpful? I cannot take your worry away, but I can tell you it is very common, will pass and that the doctors will know how to help him get through it

icudelirium.org

covid19-england.criticalcar...

best regards, Pete

[CLM68]

I was in a medically induced coma for 3 weeks and I was incredibly confused when I eventually came round...I had lost 3 weeks of my life, was in a hospital ward I didn't recognise, couldn't remember my address, phone numbers, who I worked for... I wasn't aggressive but was very giggly and polite! I had to have dialysis every day, so the drugs cleared through my system after a while, and I felt more "normal".

My family helped me by talking to me as normal, keeping me updated with the wider world and helped me to get my memory back. I couldn't walk, hold cutlery or a beaker due to muscle waste.

My family too it in turns to be with me in ICU as it is just too much of a strain to deal with that every day, you need to share the load if possible. I had good friends that also helped out and visited me to give my family a break.

The road to recovery takes as long as it takes...I had ICU delirium as well as PTSD. I even had a junior nurse that sat with me recording all of delirious ramblings!

Just be patient, listen to what he says, ask questions of the DRs, involve the rest of the family and take time for yourself!

[Itsme03878]

I was in a medically induced coma for almost 3mos and was only completely woken bc they discovered I had delirium. Bc I still needed multiple surgeries they did them on alternate days. I can tell you first hand that it took me mos to slowly sort my thoughts and beliefs about my reality until I was back to “normal “. Bc of the length of time of the original coma and subsequent times of having to go under again it may have affected how long it took me to recover. However to this day almost a yr later I still suffer from memory issues

[BilliyR]

Hey, just reassurance, it’s so difficult having delerium because everything you see/feel is “real”and your trying to explain to others what you’ve seen…. Just listen and reassure him. Unfortunately with medication and trauma he has been through, it will take a while to come out of his system (I was told 12months!) although I can’t remember which medication I was on…. The more he speaks about this , the easier it will become, I know it’s hard for loved ones to see this…. When he’s able to manage it, get him to write things down! It will become easier xx

[Nicedymous]

Being told it is ICU delirium is not good enough. Here in Lancaster it is identified as Post IC Syndrome (PICS) and psychological support is offered. It is a long process. I wish you both well. There is a future for you.

[Clunk]

Can I ask how did you get the no sedation order placed?