People are admitted to an intensive care unit (ICU) for varying lengths of time because their illness or injuries may be life-threatening and they need intense support while they are treated, constant monitoring and 24-hour nursing care that cannot be performed on general wards [see ICNARC website]. Because critical illness is often a sudden, unexpected emergency, it can change the lives of both the patient and those they are close to in a matter of minutes. The everyday lives of relatives and close friends may come to an abrupt halt or be turned upside down as they live in the uncertainty of not knowing whether the patient will survive. Relatives and close friends usually know very little about why a person has become so ill so quickly and the ICU, an unfamiliar, alien environment, often becomes the centre of their lives as they wait desperately for any signs of change or progress.
Having a relative, partner or close friend critically ill in ICU is a crisis situation that everyone deals with differently. Here people talk about the emotional effects when someone they were related to or close to was ill in intensive care.
People experienced many different, powerful emotions at different stages of the patient's illness: when they'd found out the illness or injury had been life threatening, when they'd lived in the uncertainty of not knowing whether the patient would survive, when the patient had continually improved and deteriorated, when the patient had shown signs of progress, and if they'd had to deal with death and bereavement. Shock, sadness, hope, relief, acceptance and joy had been common emotions, depending on the patient's condition and what they'd known about it at the time.
When the patient was admitted to ICU
Most people had been extremely shocked when they'd been told that the patient's illness had been life-threatening, particularly when the symptoms which preceded it had appeared quite trivial. For those whose relative or close friend had had an accident, being told about it had been particularly shocking because the news had come completely out of the blue. There'd been no build up and no time to prepare mentally, emotionally or practically (see 'Emergency admissions').
With no warning whatsoever, peoples' lives had been thrown into chaos. Not knowing whether the ill person would survive or whether they'd be permanently disabled, brain damaged or paralysed had been traumatic. At this time, most peoples' lives had revolved around the ICU, sitting at the patient's bedside, waiting for news. Many people had had to make practical arrangements to enable them to visit ICU every day, including arranging child-care, care of elderly parents, pets and home. Family roles and responsibilities often had to be changed, and normal daily chores and routines had fallen by the wayside as their whole existence focussed completely on the patient's survival. One woman said that, as well as dealing with the intensive care situation, her mother had also had to care for her father, who was too ill to be left on his own. Most people had only wanted to be with immediate family or very close friends at this difficult time.
The early stages: a roller coaster of anxiety and relief
In the early stages of the patient's illness, people had waited desperately for any information from doctors or signs of change in the patient. Often, doctors hadn't known the outcome, so relatives and close friends had had no choice but to live day-to-day, focussing only on the moment in hand.
When the patient had continually improved and deteriorated people had had no idea what the future had held. The constant highs and lows felt like 'a roller coaster' of emotions - relief and hope when the patient had shown signs of improvement or even stability, but fear, sadness and anxiety when they'd gone back to a near-death crisis (see 'Uncertainty'). Those who had thought about the future had worried about living without someone they loved or coping with someone who'd been left disabled, brain damaged or paralysed.
Many people explained that, because the illness or accident had happened so quickly and so unexpectedly, it had felt unreal or surreal at the time and sometimes even for months afterwards.
Some said they'd felt extremely tearful in this early stage, others had almost switched off from their feelings altogether. Yet others described how they'd gone 'into autopilot' and just focussed on whatever had to be done to cope at the time.
Many people had felt helpless sitting at the patient's bedside, waiting for information. Some had felt they'd been 'in limbo' or 'in a twilight zone', living a changed everyday life that had focussed solely on the patient's survival while life around them had continued as normal.
Some people explained that, somehow, they'd had a surge of adrenalin and managed to do everything that had come their way, including spending endless hours at the hospital and coping with the overwhelming crisis. Some had spent all day at the hospital, looked after children, pets, home, and had managed the shopping. Others explained that they'd felt numb, and some said they hadn't wanted to talk to anyone, including family. One man said he'd hidden his emotions, as he'd always done, and had focussed instead on supporting his mother and sister.
One man said that, when a close friend's mother had been critically ill, his friend hadn't been able to talk about her illness or see her in such a vulnerable state. He hardly visited ICU until he'd heard she'd started improving. A few people felt that men and women had dealt with the situation differently, and that women had shown more emotions and found it easier to accept what had been happening.
When the ill person had had an accident, relatives and close friends had tried to make sense of how and why it had happened. One man described how he and his partner's family had gone over her mother's accident again and again, trying to work out exactly how she'd fallen through the bedroom floor. One woman said she'd tried to make sense of her brother's motorbike accident time and again but had to accept it had just been 'a freak accident you can't guard against.'
Some people said that, although they'd felt emotionally exhausted at the time, they'd still been unable to sleep after getting back from hospital. Sometimes they'd been too afraid to sleep in case they'd needed to go back to ICU. One man had been so exhausted after visiting ICU that he'd slept well but had hardly eaten and had lost lots of weight. Others, too, had found they'd lost weight because they'd skipped meals or only eaten snacks. Many hadn't felt hungry or been able to focus on themselves. Eating patterns, sleeping patterns, how they'd looked or felt had become unimportant as they'd focussed only on the patient. One person, whose partner's mother was in ICU over Christmas, was surprised to realise how difficult it had been to be interested in an event that would normally have been so important.
During this traumatic time, some people had also had to deal with other stressful situations. One family had been in the middle of moving home when the critical illness happened. Another had had to deal with other illness in the family.
One woman, whose sister-in-law had had a car accident, said she'd never been close to her but had became her next-of-kin because her husband had been away. She'd had to visit her sister-in-law's home, tell her friends and family as well as sort out many practical matters.
Wanting a sense of balance
During the early stages of the patient's illness, some people had needed to maintain a sense of balance between hospital visiting and normality. One woman, who had two young daughters, said she'd tried to keep life outside the hospital as normal as possible for them (see 'Impact on children'). Another said her son's accident had made her realise just how precious every day was and she'd felt it important to continue with aspects of normal life.
Some people introduced a sense of balance into their lives once the patient had shown signs of improvement. A few said they'd returned to work part-time, often on the advice of ICU nurses, and it had helped put their mind on other things for a few hours. Several stressed the importance of taking breaks during the day and had found that having to come home, feed pets or take dogs for a walk had helped them get fresh air and respite.
Most people never gave up hoping the ill person would recover. Many had confidence in the staff, support from family and friends and had prayed for the ill person's recovery. Despite the chaos they'd been thrown into, some felt the atmosphere in ICU had been calming and respectful.
Some said they'd tried to be as positive as possible throughout the person's illness, including during their ICU stay. One person said he'd sat by his partner's bedside, day after day, hoping his positive thoughts and energy would help her improve. Another said she'd remained as positive as she could by reminding herself and others how determined the ill person had always been, never giving up on anything.
Accepting what had happened
One man, who'd come from a large family, explained how they'd all supported one other when his elderly father was critically ill. He'd found it easier to cope and accept his father's illness when he saw other ICU patients much worse than his father and much younger. Another man, an ICU consultant, said that being familiar with the intensive care environment and treatments had helped him accept and deal with his father's illness, and focus on making sure that everything that could have been done for him was being done.
Signs of improvement
It was a huge relief when the patient had shown signs of improvement and when, little by little, they'd needed less support and equipment. Patients remain in intensive care for varying lengths of time, depending on the nature of the illness. Some need surgery, others are treated only with drugs. If the event that takes them into ICU is unexpected, they may not be aware of their condition until late into their stay. Some may recall pain, others don't, but it is common for patients not to remember what happened - when they regain consciousness (come round) in ICU they may not know where they are or how ill they've been. This is due to the illness as well as medications [see Healthtalkonline - Intensive care: Patients' experiences].
Relatives and close friends had been overjoyed when the patient had survived and regained consciousness. Some had been worried at first because the patient had been hallucinating and they'd been concerned about their mental health. Intensive care patients receive many medicines and some of these can cause nightmares and auditory or visual hallucinations (see 'At the bedside: signs of improvement and progress').
Different feelings at different stages
Most people stressed that their thoughts and feelings had changed at different stages of the patient's illness and how they'd experienced many intense emotions all within a relatively short time span.
Some people said they'd coped while the person had been critically ill but the real impact of what they'd been through only hit them after the patient had come back home (see 'Supporting and caring for the ill person at home'). Some said they were hardly aware of the intensity of their emotions at the time because they were too bound up in the pressures of keeping going: spending many hours a day at the bedside, keeping in touch with other concerned friends and relations, supporting other family members and, in some cases, continuing to work. The full emotional impact of the crisis didn't always become apparent until after it began to resolve.
Although most people admitted to ICU have an unexpected life-threatening condition, some are admitted after planned (or elective) surgery because they need special support and care after a major operation. Planned surgery ICU patients differ from emergency patients in that they know they will spend some time in intensive care after their surgery. Even so, every patient's experience is unique and it is normal for relatives and close friends to worry about them having major surgery.
Dealing with death and bereavement
Sadly, not every patient survives critical illness. For those whose relatives or close friends die in intensive care, it is a traumatic experience which everyone deals with in different ways (see 'When someone dies' and 'Coping with bereavement')
Last reviewed February 2013.