How can I help my Mum cope with her ICU experience now she is back on the ward?

[Lozale]

Mum had 9 days on ICU with a post-op infection, the first night and day in ICU before she was sedated and intubated she was extremely volatile and convinced we were all trying to hurt her, and she said and did some awful things. Thanks to this website I understand that it wasn't her. She was sedated and intubated for five days, and has taken a few days to be reasonably clear of confusion.For a couple of days after sedation she was convinced she was dead, and that the nurses were trying to hurt her. She now says she has some nasty memories. While she is still recovering (expected to be in hospital for another 8 weeks), if she brings it up shall I encourage her to talk about her memories, or wait until she is further into her recovery? How honest should I be about what happened - I don't want her to be upset by some of the things she did and said? At least thanks to this website I can tell her that she is not alone in her experience.

[ICUsteps-Peter Partner ICUsteps]

Hi Lozale,

Sorry to hear how hard it's been for you and your Mum but I'm glad the site has helped a little.

Dealing with the after effects can be different depending on the individual, as well as the specific circumstances of the illness and treatment. These are just general things and I would recommend speaking to the ICU staff, particularly follow-up or outreach about your Mum's case but some patients want to just ignore or forget about these things where as others need to understand and talk about what they've been through in order to come to terms with the experience. The other thing to bear in mind is that even though she may have appeared to be lucid, your Mum's memory may have been affected and it's possible she may not recall some of the things which were so upsetting at the time.

Thinking back to my own time post-ICU I think it helped to have questions answered honestly, sensitively and with reassurance. Not necessarily to be told everything all at once - but being told in such a way that I knew if I wanted to ask more I could.

The other thing to bear in mind is that people recover at different rates and some want answers sooner than others. The fact you're thinking and preparing for this will be really helpful when your Mum's ready. If you have a copy of our patient and relative information booklet, having that to hand can be a help and if the hospital she's in doesn't use it, you can download a print-friendly version from our website: icusteps.org/guide

Particularly with the psychological aspects, it can be difficult for us to believe what we're being told and may be suspicious (I know I certainly was) so being able to read that these things are normal can be reassuring as when people tell you, you might wonder if they're just saying that to keep you under control.

You may have come across this already, but it's also quite common for patients to feel extremely guilty for what they've put their family through, even when it's completely not their fault.

I hope your Mum's recovery goes smoothly and you're able to overcome any issues that may arise.

Peter

[Lozale in reply to ICUsteps-Peter]

Thanks Peter, that's very helpful. I'll print off the booklet. I think the main thing I take from that is to take the lead from Mum, and try to reassure her that if she wants to talk about any aspect of her time in hospital that's fine, but let her set the pace. There is an outreach practitioner whom I've not yet met but Mum trusts him I think so hopefully he will be a good source of support. Thanks for your good wishes.

[coady]

when i was back on the ward after ICU i found the experience horrible, even the food i couldnt eat it, so i got out of their quick, after a few days at home with my feet up i was ok, hope your mum gets well soon

[OrmesbyPaul]

I agree with what Peter says but would add that it may be helpful to write everything down because it is easy for you to forget or get the order of events wrong. My wife did this for me as she was told by three different doctors that I would not survive and she trusted that I would so recorded everything. I have found this a great help and it has allowed me to ask her the things I want to know rather than her trying to tell me things (Not knowing if she was doing right or wrong). I hope this is some help and hope your mums recovery goes well.

[Offcut]

I was frightened when I went in to the general ward and to be honest cheated to get out. I found a way to get my o2 to the level they wanted, before I could leave. Even though I could not walk a few yards without a frame

[AndJan]

Hi there ,just be honest with your mum,she needs to know how it was for her. My husband wanted to know every thing that happened,it can be painful ,I did leave one or two things out,but,mostly tell the truth,hard time for you ,best wishes

[Lauramiriam]

Dear Lozale,

I am sorry that I am only now replying to your question.

I am the psychoptherapist attached to ITU at Croydon Hospital and see all patients who have been ventilated there.

I think it is very imprtant to deal with ITU patients' dreams especially when they have been frightening as they can indeed leave patients with very nasty memories.

First I would tell your mother that it is vey normal - half of ITU patients recollect them. This is not meant to belittle her experience but to put it in context.

Also you could mention that believing that nurses and doctors are trying to hurt/kill you is one of the most common themes - the most common being trying to escape. I believe it to be very useful and empowring to ask patients what they were trying to DO. Almost always they were trying to do something (escape, hit out, answer life-saving riddles etc.). Patients in ITU are fighting for their lives and the fight for survival is almost invariably reflected in the dreams.

With best wishes for you and your mother.