Diaries in Intensive Care (family 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?
Patients often can’t remember how they ended up in Intensive Care, or what happened while they were there. It is also very common to have strange dreams or memories that don’t make sense.  As a result, it can be difficult for them to understand what happened to them, how ill they were, and why it can take so long to recover. Diaries can help to “fill in the blanks” 

“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)

They can help also help you, as a family member, understand and come to terms with what’s happening.

“I think if they (the nurses) didn’t use the diary, I wouldn’t have understood everything…because they’ve kind of simplified it in the diary. I’m not stupid, but they’ve simplified it in the diary (laughs)” (a family member)

“It’s helped me realise, you know, what was going on and why they had to do the things they were doing to him and…you know, because I’m thinking ‘God they’ve got him up on his feet early!’…” (a family member)

“We’ve been reading what the nurses have been writing…it’s been good that way, because sometimes when they’ve been telling you things on the phone, you forget…so it’s good to kind of look at that again maybe two days later and then get it sorted in your own head.” (a family member)

Who writes in the diary?
If your family member was looked after on an Intensive Care Unit that uses patient diaries, the nurses will have started to write in the diary shortly after he or she was brought in to Intensive Care.  You and other family members (including children and grandchildren) or close friends are also welcome to keep your own diary.  Some patients find it helpful to read and refer to during their recovery and may choose to write in it themselves.

What if the Intensive Care Unit doesn’t use diaries?
You might decide to write your own diary. It’s completely up to you, and it’s ok if you would prefer not to. If you do decide to write a diary for your family member, give them time to decide whether or not they want to read it at all, after they get home, or whether they want to wait until they feel ready.

What’s in the diary?
If your family member was 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 to do so). They will generally have written about your family member’s progress during their shift; perhaps about reducing the amount of support they needed from the breathing machine or ventilator (“weaning”), how they were when they “woke up” from the drugs we gave to keep them sleepy and comfortable (sedation), or about things like getting him or her out of bed and into a chair. They might also write about who telephoned and include some words of encouragement for their continued recovery.

You can write about what’s been going on at home and how you feel about your family member being so unwell.  You can also use the diary to keep them up to date with things they were interested in or did when they were at home 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 the diary.

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

Why might you want to keep a diary?

Relatives sometimes tell us that they themselves sometimes find it helpful to write in the diary, as it can help get them work through difficult emotions.

“It feels like a weight’s been lifted, because you feel like you’re speaking to somebody (when you’re writing in the diary)” (a family member)

“I think for me, it’s therapy…to get your emotions out…” 

Others have told us that they felt that their family member would value a diary during their recovery.

“It’s a memory, you’re making her memories in that diary, because those eight days that she’s not here, she won’t have any memories for them…” (a family member)

Do I have to write in the diary?
No, you don’t. Some people prefer not to, and it’s completely up to you whether you want to or not.

“There was certainly no pressure…if you don’t want to write in it, you don’t need to” (a family member)