Intensive care: experiences of family & friends

Supporting and caring for the ill person at home

Having a relative, partner or close friend in an intensive care unit (ICU) has a huge impact not only on patients, who may be unconscious or sedated at the time, but also on their relatives, whose lives may suddenly be turned upside down as they wait by the patient's bedside, not knowing whether they will live or die. Generally patients who stay in ICU the longest are those who are admitted as emergencies. Planned surgery patients tend to have a relatively short ICU and general ward stay, sometimes with a brief spell in a High Dependency Unit. Everyone who has been in intensive care recovers at his or her own pace. Many patients leave hospital very physically weak and complete recovery can sometimes take up to two years, particularly if they were admitted to ICU because of an emergency illness, surgical complication or accident.

Here people talk about supporting and caring for a relative, partner or close friend at home when they'd been discharged from hospital after being in ICU. Patients came back home at different stages of recovery. Some still found it difficult to walk. Others were able to walk with the help of a stick, Zimmer frame or wheelchair. Many were still very weak. The experiences of relatives and close friends ranged from those who provided a lot of support to the ill person at the beginning but soon resumed their normal lives, to those who became full time carers because the ill person's health had deteriorated so much after critical illness that they couldn't manage on their own. 

It had been a huge relief and joy when the patient had survived and recovered enough to be discharged from ICU to a ward and then back home. For many people the most difficult time - not knowing whether the patient would live or die or be brain damaged, disabled or paralysed if they did - was now over. But for the patient, in many ways the most difficult time had only just begun - having no memory or only delusional memories of what might have happened yet being very weak, immobile and almost completely dependent on others [see our section Intensive care: Patients' experiences].

Making steady progress and a good recovery

Many people said that, when the ill person first came back home, they'd been extremely weak but had made steady progress and had gradually been able to walk up and down the stairs or go in and out of the bath easily. Some said the ill person had been quite mobile and able to look after themselves but became tired easily. 

One woman said her sister had lived on her own before her illness and had moved back to her own home. Although she'd been very weak, she'd been determined to become independent again and, doing her shopping on the internet and taking taxis to and from the hospital, she had succeeded. Some said the ill person had made small improvements every day and had gradually been able to do more and more for themselves, needing increasingly less support. A few explained that the ill person was still recovering, others that this was the case because he or she had only recently been discharged from hospital. One woman said her daughter was still very weak and she visited her and her son-in-law, who lived some distance away, at the weekends to help and support them. She praised the support they'd received from friends, who'd helped with cooking and shopping.

Some people recalled having visits from occupational therapists, who assessed the ill person's needs and took steps so that rails or bath aids could be provided to help with mobility. Others praised the support they'd received from district nurses, who visited the ill person at home and changed dressings when he or she had surgery. Some said the ill person had made good progress because of the support given by physiotherapists. Several said both they and the ill person had benefited from attending ICU follow-up clinics. The aims of ICU follow-up include providing support and guidance for those patients who have had an extended stay in intensive care, often over two weeks. Medical, nursing and psychological support may be offered for up to a year after hospital discharge where appropriate. In the UK, there is no uniform ICU follow-up service and each hospital decides whether to have a follow-up clinic and how to run it, depending on time and resources. Many ICUs don't have follow-up clinics at all and, at present, these clinics are a relatively new, though growing, service.

Many were surprised at the length of time it had taken the ill person to recover and get back to normal, including going back to work. Some had taken a year, others two years. Some still hadn't returned to work. Others had a 'phased return', working a few hours a week to begin with, with the aim of becoming full-time again. How long someone takes to recover after critical illness depends on many things, including their age, previous health, how ill they were in ICU and how long they stayed there. Most said the ill person had been completely unprepared for the time it took to regain strength and mobility when they left ICU.

Having little or no memory of their intensive care experience can also affect expectations of recovery time because people may not realise how ill they had been or why they feel so weak and debilitated when they leave hospital. Some remembered little about their hospital stay and even the first few weeks back home were hazy. 

As well as supporting the patient with their physical needs, many said they'd also had to support them emotionally and help fill in gaps from the time they'd 'lost'. The ill person had often asked lots of questions about the time they'd been sedated or unconscious becuase they had no memory of it. 

Some people said that the ill person had improved and regained their physical strength and independence in time. One woman said that, as her husband became stronger physically, they felt comfortable enough to have sex again. Following a critical illness, it is safe to have sex again when the ill person feels strong enough, and this varies according to individual circumstances. There are no specific restrictions or time scales but, if there has been an underlying problem, such as heart problems, it is worth checking with the GP or nurse specialist first.

Some people said that the ill person's health was now better than it had been before the illness or accident. 

Supporting someone who has had head or brain injuries
If the ill person had had severe head or brain injuries some described how they'd had to recover both physically and mentally. One woman said her husband, who had serious head injuries after an accident, had discharged himself from the general ward because he'd become so depressed. He was extremely weak when he got back home and she'd had to help him get in and out of bed, shower and walk. 

With recovery from brain or head injuries, family had also had to deal with the ill person's mood swings and, sometimes, anger and frustration as well (see 'Emotional impact on family and friends'). 

Some people who'd had head or brain injuries had very poor memories and concentration and may have been confused. Several needed a lot of care and support before coming home and had been transferred from a hospital ward to a rehabilitation unit. Back home again, a few had made what relatives had called a 'miraculous' recovery. 

One woman said that, after having a serious accident, her husband had made a good physical and mental recovery over three years. However, he'd lost some sensation in the lower part of his body and this has affected their sex life. 

Making good progress but not a complete recovery
Some people said that, when the ill person had first come back home, they needed a lot of support because they'd still been unable to walk very well, lift things, cook, clean or get into the bath or shower alone. Many, at first, became tired very easily and small, normal, daily activities had been extremely difficult. Some people had to move the bed downstairs so the ill person wouldn't have to climb the stairs because this one activity would leave them exhausted for the rest of the day. A few people said that, as the ill person became stronger, they would go up and down the stairs on their bottoms until they were strong enough to walk. One man explained that, when his wife first came home, she could do very little for herself and their daughter gave up college to care for her full-time. For many, progress had been slow and steady, and there'd been many good as well as bad days. It had taken the ill person several months before they'd become strong enough to walk up and down the stairs and up to two years before they'd become completely independent again.

Many recalled how, gradually, the ill person became stronger and more mobile but often, even one or two years after critical illness, still got tired more easily than before the illness. Some had become independent again but hadn't got back to their previous level of health. One man said his wife had had a lot of back problems since her accident. Another said his wife now had diabetes and had to completely change her diet. She was regaining strength and independence since having surgery to remove a kidney but she still wasn't back to normal. They'd started having sex again but now had to be much more careful because the scar left by her surgery was still healing and sometimes caused her pain. 

Some people said that their loved one still had good and bad days even though they'd made good progress for up to two or even three years after being in ICU. In some cases, the ill person was quite elderly and it was felt that their health probably wouldn't improve much more than it had. But they had still made a good recovery because he or she was independent again.

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One woman said she'd become the registered carer of her best friend. At first she'd needed lot of physical and practical support but, over the years, the support had become more psychological and emotional.

After coming back home, some people had needed to go back into hospital for surgery because they'd encountered problems. One woman explained that her husband had needed an operation on his spine and, although he had to be in hospital for four weeks for this, he had recovered quite quickly compared to his recovery after ICU. One man said his wife, who'd had bowel cancer, had needed chemotherapy shortly after coming back from hospital and often felt exhausted afterwards. One woman said her husband had to be re-admitted to hospital because he'd had several problems with his medication. Although he still gets more tired than before, he is now back at work. 

Some felt that there'd been a lack of support once the ill person was back home and that he or she would have made a better, easier and quicker recovery had there been more support, such as physiotherapy and regular monitoring by doctors. Others felt the patient should have spent more time in hospital, where they would have received the care and help they'd needed from medically trained people. Several felt they'd 'muddled through' but were unsure if the care and support they'd been giving the ill person had been right (see 'Support and information'). 

Caring for someone full-time

Some people said they'd had to make many changes to the way they lived their lives because the ill person's health had deteriorated so much since the illness or accident that they now needed a lot of care. Several said they'd had to give up work for a few years so they could care full-time for their partners. One man said he'd accepted a redundancy offer at work so that he and his daughter, who'd given up college, could look after his wife. 

A few people had to give up work permanently to become full-time carers. Some had been retired. Many described the changes they'd had to make to their everyday lives and the challenges they'd faced. A few said they'd become quite housebound or rarely had a break themselves because they needed to be near or with the ill person all the time in case he or she injured themselves or caused an accident in the home. It was not uncommon for one such carer to feel that there was no way that they could give themselves a break because no-one else could do their job for them.

Two people said their partners had had to have a leg amputation when they were ill in ICU. Both had given up work to care for their partners full-time. 

A few people said they received support with caring, which they'd found helpful. 

One woman said she had to care a lot more for her son after he'd been in ICU. She'd learnt how to do some physiotherapy and had the support of a carer on weekdays.

Some people said they'd had little or no other support when the ill person came back from hospital and this has meant they rarely got a break from caring. A few felt that the ill person's needs were extremely specific and that no one else would be able to care for them the way they did. Several felt guilty about leaving them with someone else but that they would benefit from a break.

Planned admissions

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 they may be quite weak after surgery and need support. One woman said her husband had had a kidney transplant and, within a few a months, was well enough to return to work. 

Last reviewed August 2018.

Last updated May 2015.


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