Diaries in Intensive Care (patient information)

What is a diary?
A diary is a booklet written for patients about their time in Intensive Care.  Some Intensive Care Units use patient diaries and some don’t. They’ve been used for a number of years in other countries, but are only just beginning to be used in the UK. More research is needed to find out if and how they help.

Why might (some) patients find a diary helpful?
You might not be able to remember what happened to you in Intensive Care, or have strange dreams or memories that don’t make sense.  As a result, it can be difficult to understand what happened to you, how ill you were, and why it can take so long to recover. Diaries can help to “fill in the blanks” and can help you and your family members come to terms with what’s happened.

“It’s telling you what was happening day to day, when you weren’t there or couldn’t understand…” (a patient)

“It helped me put the jigsaw together…it’s not a complete picture but it’s an aid to putting the picture together…” (a patient)

Who writes in the diary?
If you were looked after on an Intensive Care Unit that uses patient diaries, the nurses will have started to write in the diary shortly after you were brought in to Intensive Care.  Family members (including children and grandchildren) or close friends who visit are also encouraged to write in it.  Some patients find it helpful to read and refer to during their recovery, and you might find that you want to write in their diary yourself.

What if the Intensive Care Unit doesn’t use diaries?
Sometimes family members decide to write their own diaries. Try not to be disappointed if they haven’t, as they might not have thought of it. They might also have been too upset to keep a diary for you. If your family did write a diary for you, it’s ok not to want to read it…or not to read it just yet. Some patients aren’t ready to read it until quite some time afterwards.

What’s in the diary?
If you were looked after on an Intensive Care Unit that uses diaries, the nurses will have written in it almost every day (although they might sometimes be too busy or simply forget). They will generally have written about your progress during their shift; perhaps about reducing the amount of support you needed from the breathing machine or ventilator (“weaning”), how you were when you “woke up” from the drugs we gave to keep you sleepy and comfortable, or about things like getting you out of bed and into a chair. They might also write about who telephoned or visited you and include some words of encouragement for your continued recovery.

Family and friends can write about what’s been going on at home and how they felt about your being so unwell.  They can also use the diary to keep you up to date with things you were interested in or did before you became ill e.g. football or gardening.  If you have young children or grandchildren, they might write about what they’ve been doing at school.  Drawings, paintings and letters from children who’ve been unable to visit can also be included in your diary.

With your family’s permission, some (but not all) intensive care units may take photographs of you during your time there. As these can be upsetting to see, they are generally included in your diary at a later date.  You will be asked if you would like to see them (you don’t have to), or if you would prefer for them to be destroyed.

Do I have to read the diary?
No, you don’t. Some people prefer not to, and it’s completely up to you whether you read it or not. Take as long as you need to decide whether you want to read it at all, or if you want to wait until you feel ready.
 

How will I feel if or when I read my diary?
Reading your diary can be very emotional. Here are some of the things that other patients said.

“…for me, the diary was good…it took me a while to read it…maybe for some folk it would be no help at all, some it’d be a good help…it just all depends…”

“I had smiles and tears…sad tears, happy tears em…shock…as well”

“You don’t realise until you read the diary just how bad it was for them as well…as a family”

“…well, I’ve picked it up a few times and read through it and it’s gave me a wee boost…”

“…some of the nurses had wrote that ‘you’ve got tubes’ and things, and ‘your breathing…’ and ‘we had to give you something for your heart’ you know so…that’s scary stuff…” 
 

“…what’s been written in there is personal to me and yes, it lets me see that people care. They take the time to write something in that so yes, they care”