If you had a patient diary, what role did it play... - ICUsteps
If you had a patient diary, what role did it play in your rehabilitation? Please select all options that apply and comment on your own diary experience.
The ICU team suggested that my family keep a diary and I'm very grateful they did. My Mum and my Sister both kept diaries covering everything from my heart rate, to how my problems progressed, to which nurse was looking after me, to who had sent flowers, to how they felt about what was going on, to what was happening on The X Factor! I was aware of the existence of the diaries very soon after I was back in the land of the living but it took me about a month before I plucked up the courage to start reading. It then took me a very long time to go through them as I found them so incredibly emotional. They were brilliant though, at explaining so much of what had happened and what I had missed. I think they're enormously beneficial and I was very lucky to have two brilliant diarists.
I so wish I had a diary, and your account confirms how helpful it is. I did eventually get an appointment with a liaison nurse who went through my notes to fill in the medical gaps, but it's other stuff I wanted, the personal stuff. Afterwards I wanted to ask lots of questions whereas my family wanted to move on from that horrible experience, and often said 'I don't remember' or 'I was in such a state I don't know what happened'. A diary would have been great and I wondered whether it gave your family a focus at a time when I think families often feel helpless?
I wish I had a diary, the only way I could try to find out what happened to me was through the visit back to Icu with the liaison nurse and through the clinical negligence notes, I don't think my family were up to making a diary, it would have been too upsetting for them, I have asked questions but it upsets them to go back there ... It would have been so helpful to understand what had happened to me in one go instead if spending lots of time trying to piece it together myself and have never actually got there! I know I am a changed person in lots of ways but difficult to put my finger on why and how, knowing through a diary might have helped
My wife & daughter kept my diary, my daughter writing in it when my wife was to upset to write, the 53 days I have missing from my memory are all in there, the nightmare roller coaster ride that never seemed to end for them, but they detailed everything, the nurses that looked after me, the doctors that fought so hard to save me, the phone calls to get to the hospital as quick as possible when things looked bad, all the treatment and drugs I received, who visited me and all their thoughts. I finally read my diary about 4 months after leaving hospital, it made me realize how lucky I am to still be here and the guilt I felt putting my family through such a traumatic time, I can now understand how bad it was for all of us thanks to my diary.
The ICU\HDU teams started a diary which got kost but luckily my wife also kept one and I have found it to be a great help in understanding what happened, what I can't remember myself and how she felt.
