Intensive care: Experiences of family & friends

Family and close friends can experience many powerful emotions at different stages of the patient's illness and recovery. Here men and women talk about how they felt emotionally when the patient was back home and recovering. 

Many people said that, when the ill person first came back home from hospital, although they'd been overjoyed they were well enough to be discharged, it had been difficult too because the ill person had been very weak, had become easily exhausted and had needed a lot of physical as well as emotional support (see 'Supporting and caring for the ill person at home'). 

At first, many people had to take time off work to help the ill person and they hadn't wanted to leave him or her on their own at home. Some said they were extremely anxious in case anything happened and it was a while before they could completely relax again. A few felt they'd become 'institutionalised' in ICU and accustomed to having medical staff on hand to help. Now that they were on their own, they worried in case their relative got ill again. Many said that, at first, both they and the ill person had been anxious they might get ill again and they were sometimes over-protective. One woman said that she became concerned that she might get the same illness as her sister had because it had a genetic link, but this feeling soon passed. 

Some people said they'd coped while the patient had been critically ill but the real impact of what they'd been through only hit them after the ill person had come back home. Many said it was only then that they realised just how physically and emotionally exhausted they actually were. 

At first some had found it difficult to sleep properly but got back into their normal routine in time. Both the stress of the ICU experience and then caring for the ill person afterwards took its toll on some people's own health. Several said they'd experienced stress, depression or stress-related illnesses. One man said that, when his wife came back home from hospital, he was shocked and disappointed to find that there was very little support for relatives and carers. His wife was extremely weak and he and his daughter looked after her until she became mobile again. This, as well as the trauma of her accident, had led to depression and he'd been prescribed anti-depressants by his doctor. His wife had fallen through the bedroom floor when he'd made a hole in it whilst replacing a radiator, and he'd blamed himself for her accident. 

Some people said that, as well as helping the ill person physically, they'd had to help them emotionally as well. Although the ill person had improved, they'd often had good and bad days and these had affected everyone in the family. The ill person also experienced moods swings and feelings of frustration, anxiety and depression while recovering, especially when recovery seemed to be taking a long time or there'd been a setback. 

Some people explained that the ill person had severe head or brain injuries and had needed to recover both physically and mentally. Because of their injuries, they'd often experienced mood swings or become angry, agitated or frustrated. For the relative or friend who'd been caring for them, this could be difficult and challenging. One woman said her husband's depression and mood swings had been very difficult to cope with at first, but did improve over time. To begin with, however, she'd often felt lonely but hadn't wanted to tell anyone. She said she would have liked reassurance, perhaps from someone in a support group, that his mood swings had been normal for someone who'd had severe head injuries. Another said that, at first, her son had often been confused and angry. This sometimes left her feeling vulnerable but talking to his occupational therapist had helped her off-load. 

After spending weeks or even months visiting ICU every day a few felt 'lost' when they had to adjust to normal life again and it had taken a while to get back into their usual routine. Many people felt that, in time, everyone who'd been affected by the illness or accident did resume their routines, though some felt the experience had made them look at life differently and they described the changes they'd made to the way they lived or worked (see 'Attitudes to life after the hospital experience'). 

Some people felt that there was very little support for either ICU patients or their relatives once the ill person had come back home. Several described feeling 'abandoned' after weeks or months of hospital visiting and one woman said she'd also felt angry because the lack of support showed how little recognition there was for the trauma and distress relatives go through. 

Some people said that, in time, despite the trauma of what they'd been through, they'd been able to look back and see some of the positive things they'd experienced along the way. These included humorous moments, the love and support they'd received and the dedication of ICU nurses. Many said their relationships with family or friends had become closer or stronger. Some couples said they'd become more relaxed and had gained a better perspective on life, no longer being anxious about trivial things. One woman said her husband appreciated her more now, others that they valued one another more and spent more time together. Two couples decided to get engaged after their time in ICU. One man said that, although he, his partner and her family had grown closer, his partner's brother still found it difficult to accept how ill his mother had been and how she'd changed. 

One woman said that, since her brother's illness, she'd realised just how much a sudden, unexpected illness or accident can disrupt normal life and the lives of relatives. After her brother's illness, she'd spent some time sorting out insurance and other financial matters so they were organised and easy to deal with should anything ever happen to her. 

Anxiety, depression and post-traumatic stress disorder
A few people said they'd been so deeply shocked and affected by the whole experience that they'd had Post-Traumatic Stress Disorder (PTSD). It is common for people who have experienced an event like sudden critical illness, either as a patient or relative, to feel shocked and, later, anxious or depressed. PTSD is when people repeatedly re-live the experience in the form of memories, nightmares, flashbacks or frightening thoughts, especially when they are exposed to situations that remind them of the event. Anniversaries of the event can also trigger symptoms. People with PTSD also experience emotional numbness and sleep disturbances, depression, anxiety, irritability or outbursts of anger, and intense guilt. Most people with PTSD try to avoid any reminders or thoughts of the event. PTSD is diagnosed when symptoms last more than one month. A few people said they'd experienced PTSD. After seeing their doctor, they'd been referred for counselling. 

Two women said they'd never forget the sound of a ventilator, another that she'd become wary of missing calls on her mobile phone in case it was an emergency. Others said, for a while, they were wary of making long-term plans. One man said that, when his partner's mother had an accident at home and fell through the bedroom floor, their lives had revolved around hospital visiting. Now, although the living room ceiling had been repaired, there was a visible patch where it had been restored and this was a constant reminder of the accident. 

Last reviewed August 2018.

Last updated November 2010.