Wife delirium post icu: Hi, I’m wondering if... - ICUsteps

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Wife delirium post icu

Booby1970 profile image
Booby1970

Hi,

I’m wondering if anyone can help. My wife was admitted to Leicester glenfield 6 weeks ago with covid pneumonia. It was touch and go a few times but she pulled through. She’s now been off sedation for 2 weeks and has been moved to Leicester general because of renal problems. She had a transplant from me 2 years ago and they’re not sure if it’s made the journey too. However she’s been suffering from delirium since she’s been off the sedation , it’s not getting any better if anything it’s getting worse I was called to the hospital at 9.30 last night to help her to calm down a bit as she was so frantic. I’m exhausted with it all too and I’m at the end of my tether as I don’t know how to deal with this and I’m concerned that she still like this 2 weeks on . Any suggestions gratefully received . Many thanks Nick

37 Replies

Hi Nick

Many patients who have been in icu suffer from delirium/ hallucinations and these may continue for sometime. Whilst your wife has been off the drugs for a while it can take time for their effect to wear off. Not only that she may suffer flashbacks.

Hallucinations are very much like a separate reality some of us have had similar ones and some are completely different but they were very real to me. I came out of hospital in March’20 and I still can remember them in some detail and touch wood I’m not getting flash backs now. That isn’t to say that I’m no longer effected by the trauma.

You can see more about me in my profile.

You may find visiting (Zoom) the icustepschester relatives support group on a Tuesday evening a help. They support people all round the country.

If you have any specific questions please don’t hesitate to ask as I am sure some one on this forum will be able to help.

Thank you I’d love to be part of the group I’d find it really beneficial do you have any instructions on how to join in please

I am sending you (via chat) the details of the secretary and she will let you have the log in details etc

Critical illness affects many parts of our body including the brain, two out of every three ventilated patients will suffer from delirium

Our age is a factor, cognitive impairment, acute infection, respiratory disease, acidosis, anemia, and hypotension along with mineral & vitamin deficiency especially sodium, calcium and levels of blood urea nitrogen - UTI’s are a really common cause. Sometimes fluids, chemicals, and toxins in the blood will make a person sleepy, disoriented, hostile, combative, or even unarousable (comatose) . Nutrition, fluids, electrolytes, dialysis, and other therapies may be needed in order to regulate the blood .

While the person is not talking or is in a deep sleep, it is really beneficial to keep speaking to him or her . You can help by talking in soothing tones, telling stories, and supplying the patient with normal information to keep the brain active, yet calm . The voice of someone the patient knows is helpful in most cases to orientate the person. The brain has gone into overdrive, trying to make sense of everything.

In my case, it lasted about 11 days.

Booby1970 profile image
Booby1970 in reply to Sepsur

She’s been off all sedation for approximately 2 weeks now . Her urea is quite high (32) and they are planning on dialysis today . I’m hoping they will use the fistula that she already has in her arm then we can get rid of the lines in her neck as I’m terrified that she will try and pull them out in her delirious state of mind she’s already pulled the poop tube out of her bum. I think she’s got quite high urea so that could be a contributing factor

If it’s one thing I’ve learned from this group, post ICU delirium is very common. We are in the same boat as you, as far as the delirium. My dad has been off of the vent for a little over 3 weeks now and is still talking crazy stuff and seeing things. I know each patient is different and there are different factors thar contribute to how quick the may come around. Also, different complications can make it worse. For instance, my dad was in ICU, just the environment can cause delirium, he was on a vent, on heavy sedation, just recently his potassium and sodium were low, recently found out he had elevated CO2 levels, he recently acquired a UTI and pneumonia ( which is getting better), so he’s had infection, and he’s in his 60s. You are definitely not alone in this and I was actually going to get on here to express that he’s still having delirium and talk to some others on here about that. But anyway, it’s very common!

It’s not easy to watch the person you love behave in the manner they do though

Sepsur profile image
Sepsur in reply to Booby1970

It will pass

I hope so tonight she’s pulled her nose feed out I’m scared she will try and pull the lines out of her neck that they’ve used for dialysis

Sepsur profile image
Sepsur in reply to Booby1970

They may fit her with a nasal bridle

jld85 profile image
jld85 in reply to Booby1970

My dad actually pulled his IV out tonight.

Sepsur profile image
Sepsur in reply to jld85

Ouch

When I came out of the ITU I was full on loopy for some weeks.. I thought the staff were trying to kill me, so they could harvest my organs. I saw doctors discussing this and heard how they had buyers lined up on the Chinese eBay!(This was in ITU, then ward)

I'm not too comfortable talking about this a decade later. I spent months driving around the huge hospital car parks looking for this one sadistic doctor who, even now, I can see and describe perfectly. Now thank god this doctor didn't exist, also I'm grateful nobody who worked at that hospital looked like this doctor in my head because - and here's the horrifying thing - I am in NO DOUBT that I would have killed the bastard.

The rational me knows he doesn't exist. Part of my mind knows he does because I remember him perfectly.

I had weapons in my car. Bloody scary, even now.

I was in intensive care for 4 weeks, coma (double pneumonia, status asthmaticus from Legionnaires Disease) and I'll carry those hallucinations with me forever. There are far more, I remember them perfectly and I hate them in my head but I found ways to reconcile the whole experience - there was no icusteps back then and by Christ did I need some help. My GP helped zero. Asshole took it personally when I tried to explain.

'Doctors cure they don't kill' was his bit of wisdom - Fkin moron, made it worse frankly. I'll see that shitter in hell.

Sorry I'm rocking on a bit.

She WILL get better, the hard part, surviving ICU, is past.

Take nothing she says or does personally, it's all real to her. Once any infections are dealt with and the kidney kicks back in she'll improve.

Don't try to correct her delusions and hallucinations, just go with them and reasure - reasure - reasure!

She'll come back, she might just need time.

My best wishes

Glen

Sorry forgot.Ask them to prescribe Haloperidol (HALDOL) it's an anti psychotic.

Will help if her kidney can deal with the drug.

They’re leaving it for tonight I think . She can eat and drink but she refused her food due to the delirium tonight

Sorry to read about your wife. I was in ICU with Sepsis and then covid. With covid I was on a ventilator. I had ICU delerium, but once off the ventilator and becoming more aware of where I was the delerium stopped and did not occur again. However one drug I was given at night was Mortazipine (apoligies for spelling) which was an anti depressent to I think calm me down. I took this until I left hospital care and after discussion with my gp I stopped taking it. I also have an abnormal kidney function as a result of the Sepsis, which caused kidney failure, but through treatment they recovered to a level, but not fully.

Hi Nick,

My mum is 69 and, like your wife, was in ICU following Covid. Mum was on respirator for a week and it took her a while to come round. The doctors misdiagnosed delirium at first and were close to sending her to a psychiatric hospital blaming it on severe depression that shed been taking anti depressants for for over 4 years prior to her hospital stay. It wasnt until 3 weeks after her being awake that a psychiatrist diagnosed delirium. She was in a really bad state, not able to use the toilet, having memory gaps (for the first 3 weeks she didnt even know where she was, couldn't remember her address etc.), being aggressive. Overall, it took 3 weeks in hospital post ICU and a month at home for her to recover. She is now better than ever and, apart from a slight memory loss of her ICU and part of her hospital stay, she is enjoying her life the same as before.

I know it is exhausting and mentally draining for you but recovering from delirium takes time. What are the doctors saying? With my mum they never said anything for definite- just that it is different for every patient. I hope your wife get better soon. Stay strong and don't give up- it might take some time.

Joanna

Booby1970 profile image
Booby1970 in reply to Catty87

Thank you

Unfortunately, what you describe is quite common. Sedation and the whole ICU experience is so confusing, the combination of medication and lack of sleep is horrendous. Although sedated, its medically induced so he will not have got the regenerative sleep that we all need. Although she looks awake, he may not be totally aware, and may not even remember this after he's recovered enough. I spent time in ITU with meningococcal bacterial meningitis, sepsis and pneumonia. The hallucinations can be very weird and upsetting, I was in a temporary psychotic state for around three weeks.

If a critical care diary isn't being kept by the staff, I would recommend doing this yourself, you'll feel more involved and it will help making sense of it all, if you need to afterwards. Full recovery once home is unfortunately a long haul. I got a lot out of writing about my "journey" afterwards, it really helped. That eventually turned into a book that I published just before Christmas its called Eight Seconds of MenB, not now but if you feel inclined please read it, it will give you an heads up on the sort of thing that may happen, but believe me keep positive at all cost. When you and your wife are ready go to the ICU Steps meeting once they start up again you will find one locally I'm sure. Always be positive and the very best of luck to you both.

Sepsur profile image
Sepsur in reply to 8SofMB

There are some of the meetings running virtually and have been all year. It is a shame few knew about it

Thanks I’ll look it up

Sepsur profile image
Sepsur in reply to Booby1970

Have a look at icustepschester.org - we run several sessions each week from drop-ins to gentle yoga & chair based exercise sessions. Helping you and your loved one to reclaim normality. 😊

Booby1970 profile image
Booby1970 in reply to Sepsur

Yes I’ve got an invite to join the chat on Tuesday night

Sepsur profile image
Sepsur in reply to Booby1970

Email the secretary of the group so we know we have you in the system 😊 secretary.icustepschester@gmail.com

Booby1970 profile image
Booby1970 in reply to Sepsur

Yes I have done

Hi Nick,

I went through the same thing with my mother a year ago. I had no idea "hospital delirium/icu delirium" even existed until then. She was put on a ventilator for a week in order to heal. And let me tell you it was one of the worse experiences I've ever had. And it was during Covid so visitation was strictly limited, if at all.

Mom's delirium lasted for almost a month and a half. She had gone in for routine surgery, wound up with a bowel obstruction the evening after she had surgery. She then had surgery again that evening for the obstruction (they did not close the wound with hopes the tissue would heal, eliminating the need for a colostomy bag) So the next day, had surgery AGAIN (this was the 3rd surgery in 2 days) She is 77, and apparently at this age the anesthesia can wreak havoc, And it did.

Here we are a year later, and FINALLY she is back to normal. It was a long road. And she has no memory of anything after the first surgery until 2 weeks later when she was transferred to rehab.

It's important to remember that sometimes these doctors have no idea of her normal "mental status" So they may be unaware of how different her mental state is right now, since they did not know her prior.

Take lots of pictures for her to see. Make absolute CERTAIN she has eyeglasses, dentures etc. And anything from home that she may treasure (a stuffed animal etc)

A big part of the problem with mom was that she didn''t have her dentures in. And I didn't realize she did not know how to talk without them. Besides when she brushed her teeth everyday, she NEVER took them out.

When I finally was able to get them into her mouth, it was almost like someone flipped a switch! She was able to start talking again etc.

I wish you the best of luck. I know this is a traumatic time for you and I pray that everything works out for her as it did for my mom.

I hoped this helped a little

Thanks she’s still a little confused today but more tired . The doctor has just spoken to us and he was quite hopeful the kidney I donated 2 years ago may have survived

Sorry to hear about your wile's experience. I suffered from sepsis eighteen months ago from a ruptured appendix and it took quite the toll o my life. After being on life support for over a week with little expectance that I would ever come back was so very hard on my husband. With several chronic conditions like grand mal epilepsy, ostio and rheumatoid arthritis, and a cancer survivor it was a miracle for sure. I am still experiencing bad dreams and hallucinations. There were volunteers at the hospital who were there when my husband needed sleep. They were very helpful and keeping me in conversation and gradually helping reality of who and where I was. I was in the hospital for about a month. It will take some time and perhaps if there is family and friends who could visit short amounts of time make help your wife's journey back and give you some rest as well. I pray that that her transplant remains in tact. Be strong and have patience as it will might take abit longer for recovery.

The doctor today said that he’s very hopeful that it’s made the journey but we won’t know for at least a couple of weeks

As others have said Delirium is really common post ICU. Sleep is important and sometimes difficult in a busy environment. Little things that are familiar to her may help provide reassurance and some patients find it comforting to have something to hold on to such as a soft toy or small blanket which might give her something to focus on rather than pull on the IV lines. A favorite dab of perfume, a favorite biscuit or sweet might help her start to associate with home. The staff are very used to dealing with delirium post ICU so remember this is part of her illness and will pass as she recovers. Best wishes to you both .

Thank you a little better again today

Hi, it's so distressing to see your loved one so confused , when my husband was in recovery it took nearly 3 weeks for him to come round. We were devastated , eventually he calmed down and the delirium lifted . The nurses kept telling me we will get him back, slowly we did . Hang on a bit further x

Thanks st aalittle onfused but not as bad

Hi Nick, The delirium for me lasted about a month but it was always decreasing in severity, interaction with a loved one is very important to help reduce what is essentially a paranoia, which in my case was a feeling that I was being held captive against my will.

I would constantly have one leg out of the bed ready to run, I would bite on my feeding tube and try and pull it out whenever there were no nurses watching me.

My partner would come and visit me and reassure me but then I thought she was not quite legitimate either!

Eventually the Delirium calmed down some and I felt quite normal in myself although I did find it strange that there would be tiny drones flying around and the ward occasionally carrying shards of broken glass.

My partner would sometimes visit me wearing the doctors coat?

For me the level of paranoia and hallucinations seemed to change and decrease every 3 days roughly not necessarily everyday so don't expect too much at first.

Bless you both, hope this helps a bit.

Thanks

How's the good lady today Nick? Still improving?Best wishes - Glen

Delirium has gone we’ve had other issues now but at least it’s not delirium

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