Intensive care: Experiences of family & friends

Intensive care patients often remember little of their ICU stay because they are usually sedated in the earlier stages of their illness while they receive mechanical ventilation. When they regain consciousness, it is common for patients not to remember what happened - they may not know where they are or how ill they've been. What they do remember can be delusional memories which can, sometimes, cause psychological difficulties, a form of post-traumatic stress disorder, as they struggle to make sense of the time they've 'lost'. Some ICUs keep diaries for patients, which contain information about the illness, dates and details of treatments and progress. Often visitors are also encouraged to write messages for the patient in this dairy or in a separate book which the ill person would be able to read when they recover.

ICU diaries were introduced to help patients' recovery by giving them a better understanding of the time they spent in intensive care. These diaries can help the ill person make sense of what happened, fill in gaps of the time they lost in ICU and help them see how much they've improved since their critical illness. Some ICU diaries also contain photos of the patient attached to equipment, such as a ventilator, and seeing these photos can help patients realise how ill they'd been. Patients are often frustrated by their slow progress after ICU because they can't really appreciate just how unwell they were. Diaries can also help the relatives and close friends of patients because they can give them a focus, an opportunity to express their feelings, and help them feel they are doing something for the patient. Nurses can only keep ICU diaries, though, if the hospital in which they work has the resources to allow them the time to write them.

Here relatives, partners and close friends talk about keeping a diary when the patient had been critically ill in ICU.

Some people said nurses in the ICU in which their relative or friend had been a patient had kept a diary for the ill person. Many patients had appreciated reading it when it had been given to the patient, often at a follow-up appointment after he or she had been discharged from hospital. Some nurses hadn't kept a diary for the patient but had encouraged relatives and friends to do so because it would help them remember everything, which can be difficult under such extreme stress, and to fill in gaps for the patient when he or she had regained consciousness. Many relatives said writing down dates and brief notes about the illness or treatments had helped them keep a record of this important information, which they'd never have remembered at a later stage. One woman said she'd always kept a diary during stressful times and, when her husband had been in ICU, it had helped her understand what was happening and her own feelings. 

One woman said she'd been advised to keep a diary by one of her colleagues, who'd ended up in intensive care the previous year after a serious car accident. He recommended she keep a diary for her mother because it would help fill in gaps for her later, but she actually found writing notes also helped her to deal with her own feelings. Letting her mother read the diary also gave her mother an insight into what it had been like for the family at her bedside.

Many people said they couldn't ever forget the emotions they'd felt when the patient had been critically ill, so hadn't recorded these but only factual, medical information. Some said they'd written brief notes, rather than a diary, but even these had been helpful. Several said that, even though they'd never kept a diary before, when the patient became critically ill they'd kept one 'instinctively' and, with hindsight, were glad they'd done so. 

• Many relatives and close friends said the diary they'd kept had been useful for many different reasons:
• It had helped them answer questions and fill in gaps when the patient had wanted to make sense of what had happened
• It had helped them and the patient see just how much improvement there had been since the illness or accident and this had been encouraging
• It had been useful when visiting doctors after the patient had been discharged from hospital, helping them to answer questions about the date of admission, the illness and treatments
• It had been very useful later if there'd been insurance claims to deal with or concerns and complaints about the health care 

Some people said they'd kept a diary and had found it very helpful but the ill person hadn't wanted to read it. One woman said she'd written notes about her sister-in-law's time in ICU in the hope she'd be able to give them to her later. Sadly, her sister-in-law died after three weeks in intensive care. 

One woman explained that nurses in the ICU where brother had been a patient had kept diaries for the patients, and visitors had been encouraged to write messages in them. With hindsight, she wished she'd written more about her brother's illness because, now that he was recovering, he couldn't believe how ill he'd been and often tried to do too much too soon. She also wished she'd been able to take photos. 

Others, too, felt photos would have helped the patient during recovery. Some people said they'd asked ICU staff if they could take photos of the patient in case the ill person wanted to see them or had questions later, but hadn't been allowed. One woman said her son finds it hard to believe how ill he'd been, now that he's recovering, and his operation scar is the only proof he'd ever been critically ill. She wishes she'd taken photos as these would have helped him see how much he had improved.

One woman said she'd kept a diary of her partner's time in ICU and had taken photos at the time of his accident on the advice of police. With hindsight, she was pleased she'd done so because both diary and photos had helped him accept what had happened and the four months he'd spent in ICU. 

One woman said she'd kept a diary for her husband and had taken photos of things he'd missed while he'd been in hospital.

One man said that, although he hadn't kept a diary, he'd occasionally written letters to his partner when she'd been sedated. She still has the letters and reads them occasionally. 

A few people said they hadn't kept a diary while the patient had been critically ill in ICU but had kept all the emails and text messages sent and received during that time. Because these had served a similar role to a diary, they'd kept them and used them later. 

With hindsight, some people wished they'd kept a diary or written notes while the ill person had been in ICU. One man said he'd paid to have a copy of his wife's medical records and wished he'd kept or been given a diary of her time in ICU as it would have helped answer many of her questions when she was recovering. He felt he'd been unable to answer her questions because he'd been under so much stress that much of her time in ICU now felt 'a blur'.

Some people said they'd chosen not to keep a diary. One woman said she'd been so affected by her son's accident she couldn't concentrate whenever she tried to read. Her husband had kept a diary of their son's illness and treatments but she didn't feel able to and, even after he'd been discharged from hospital, had found it difficult to read or watch certain television programmes (see 'Emotional impact on family and friends'). 

Some people said that no one had suggested they keep a diary and they hadn't thought about keeping one either. One woman said she hadn't kept a diary and felt that people rarely forgot such traumatic events. Another said she hadn't kept a diary, though it had been suggested, but had been able to remember everything, including dates.

Last reviewed August 2018.