icu diary

[Badger015]

Hi Everyone, so glad I found this site, I spent 3 weeks in icu in Oxford, UK,May 21, I’ve been reading lots of you got given diaries is this something all icu unit do. My husband was aloud to see me for one hour a day, but doesn’t like talking about my time in there. I’m just interested what happen to me durning this time, I feel it may/ may not do me so good.

[FamilyHistorian]

HiFirst of all whilst we went through our own trauma as patients which only us understand our relatives also went through their own trauma and it takes time for them to recover as well. Now 2 ½ years she is a lot more open about it but not fully.

Not all ICU’s have diaries and in fact so,e don’t use them in the way that they were intended.

My family were able to visit so I have copies of 2 chat groups one for the family and one just my daughters - they are different. I also have photographs which are very valuable to me.

My icu didn’t do diaries so I applied for my hospital notes - through freedom of info. There will be a link on your hospital website. There was reams and reams of paper but some hospitals will provide them on CD.

I didn’t read them straight away. I wasn’t ready. But they provide an insight to the care I had but also how I’ll I was (I was in a coma for nearly 2 months)

[katieellen]

Hi, hope you are well now. I didn’t receive a diary either as my stay was 12 years ago, I feel it would have helped as well, luckily my family were open to talking. In Manchester the outreach team host coffee mornings for patients to chat about their experiences, it might be worth find out if they have any support post stay ☺️ x

[Gooddaysunshine]

My ICU unit did not have diaries either. But I have pieced together - by talking to my hospital specialists - the outline of what happened to me. I have done that over the past 16 months since coming home. I could not read my discharge letter for weeks as it was so frightening.

I have since applied for, and received, my full hospital medical notes. There is a box full of them, plus CDS of all my scans/x-rays,However I am not ready for that next step yet of reading them, although I did want to get them sent to me.

I think it is was about trying to get some sort of control over my situation after the ICU roller-coaster.

[S-A-E]

Hi Badger015, Sorry to repeat myself, but after my unfortunate encounter with an electric car when I was out cycling, I spent the first 2.5 weeks in an induced coma and then the rest of the two months in hospital recovering.

To get where I am today had taken me past the anniversary of my accident, and in that time I have recently been seeing a psychologist as I’ve been having issues with not knowing what happened medically to me, and equally important, the fact that I lay in the road not far from my home struggling to hang on to my life.

What I have found very useful is talking procedures through with my wife - she phoned the hospital 2-3 times every day for updates - and as advised by my psychologist, she wrote me a daily diary of my time in hospital because she wasn’t allowed to see me at all due to Covid restrictions.

What she wrote, right from day 1 of my time in hospital, makes for some tough reading, but is also highly amusing especially when I was coming out of and recovering from my coma. But the overall point here is that it has helped me greatly. So my advice, for what it is worth, is get your husband to talk about it and to write it down in diary form. Extract any missing info from the medical staff…..It really helps. I often pick it up and refer to it when I have doubts about how far I have progressed. It serves as a reminder of how bad I was

I’ve also written a victim statement as advised by the police. That helps too.

Keep strong , and continue recovering.

[8SofMB]

At the beginning of 2016, I spent four and a half weeks in Northampton General Hospital, 9 days in ICU and 3 days in HDU, and have been busy during the intervening six years, almost recovering from meningococcal bacterial meningitis, sepsis and pneumonia.

At the time NGH weren’t doing ICU diaries. It was only at my follow up meetings with the ICU nurse over the first year, that I spoke about how confusing the whole period was with the dreadful hallucinations and confusing memories. I think the dilemma for the hospital is what do you do with the diary if unfortunately, the patient doesn’t survive.

She got hold of my medical notes and retrospectively prepared a diary for me which I found absolutely fascinating. It just fed into my real need to know what happened. I started to make notes and record memories using the diary as the framework to build a picture and work out what happened, also work out what I’d made up. It was really beneficial to me and definitely helped. This eventually turned into a book that I published its called Eight Seconds of MenB: Meningitis - Sepsis. A Journey of the Someone Else

In my experience its good to be inquisitive and know what happened, I sort thought once I’d discovered the things I’d made up these were easier to recover from so I could concentrate on recovering from things that did actually happen.

Hope this helps, good luck.

Pete

[Hidden]

Hi. I only found my diary a month or so ago amongst a bag of papers my next of kin had put to one side. I was in ICU for a total of 14 weeks in 2020. The diary was quite moving containg messages from the nurses looking after me each day. However before I found this I had obtained my hospital notes which are very detailed in their explanation of what happened each day. Mostly they are hand written, but I also received all the xrays and scans I had. The whole lot filled two lever arch files, but at least I now know what happened particularly the early time from when I arrived at A&E in an ambulance to when I woke up in ICU. Also they helped understand my second stint in ICU when I returned with covid and was ventilated, sedated etc for a 5 week period.Contact your hospital PALS and they will point you in the right direction to get your notes. I am in Bucks and after my request to the dept it took no longer than 3 weeks to receive.

If there is a diary as well you may find the messages quite moving .

[stevet11753]

I have a diary from my stay in ICU which was filled in sometimes by family members but mostly by the nurses. It's useful for reading about what was happening to me from an outside perspective. What was happening from my own perspective is something else, what with the dreams, delusions and hallucinations. I'm glad I have the diary and I think you would find it helpful if you can obtain one.

[Sepsur]

I did have a diary but most ICU units didn’t do diaries during the pandemic due to fear of contamination between staff - I didn’t find mine particularly helpful, many other people have found them brilliant for filling in the blanks or confirming what went on.

I found the emotive passages from my family, harrowing and exacerbated my sense of guilty, I found the nurses responses largely boring. I had 2 months of coma to churn through, felt overwhelmed by day 4 much to the disgust of my wife 😊

[CLM68]

My parents wanted to take photos of me when I was in ICU in a coma as I take in info better if I can see it but they weren't allowed to. They took notes for me, which I have, but I didn't have a diary given to me. It did have a direct impact on my recovery as I had no concept of what they were talking about! I asked my ICU Consultant and this rule had been put in place because some ********** were taking photos of their "loved ones" and diaries in ICU and posting them on to social media - how depraved do you need to be to feel the need to do that, how shallow and pathetic must their lives have been to need to use family members like that!! If the patient had said OK that would have been different but they hadn't. The ICU let me visit and went through my notes with me, showed the kit they had used as I had new small scars and I needed to understand why.

[Raven21]

My first ICU (I was transferred post sedation) kept a diary but I'm no where near ready to read it yet. I've only been home 6 weeks today after a 38 day sedation and 69 day stay in hospital.I'm hoping in time I can read it and it will help...

[Badger015]

Thank you everyone for you replies, I know my husband took a photo of me whether he was meant to or not I don’t know. I haven’t ask to see that photo as I not sure if I’m ready

[Ta-thanx]

I was in ICU in 2010, and only recently found out about the ICU diary that are available from some. I got in touch with the patient liaison at the hospital, and she put my details forward to the ICU. Sadly they only started doing the diary thing in 2015 so wasn't available for me, I was gutted to hear this because it would have helped a lot in the confusion that still goes around my head.I have had a call about coffee mornings they do, but they are also on hold due to Covid, but they said they'll let me know as soon as they start again, which is ok by me.

She also told me they do a zoom type meeting, but I'm not sure if that is for me.