Adjusting to a changed life

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 their experiences of being full time carers because the ill person's health had deteriorated so much after critical illness that he or she could no longer manage alone. 

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 every day 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. One woman said her husband's memory had become so poor she worried that he might let in strangers or pay for things over the phone that had already been paid for or cancelled. Some had found it difficult coping with their new situation and worried about managing in the future if things didn't improve. They said they coped because they loved the ill person and this strong bond, as well as the good days they had, helped them through.

Although her husband has made lots of progress, he still can't be left on his own for very long and, sometimes, other relatives help out.

Because his wife is very weak, visually impaired and still has serious bowel problems, he looks after her and has become quite housebound.

Some people said they had little or no other support when the ill person came back from hospital and this 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, even though they would have liked a break. 

One woman said her husband had had a leg amputation and, when he was strong enough, would have an artificial limb fitted so he could walk unaided. She'd given up work to care for him and, although she sometimes found it difficult, she also felt extremely grateful that he'd survived his illness and that caring for him was 'a labour of love'.

She gave up work to look after her husband full time and encourages him when he feels depressed about the things he can no longer do.

One woman said that, since her best friend's critical illness, she'd become her registered carer and, although they were still close, their friendship had changed. It now focussed much less on going out and having fun together and much more on supporting and encouraging her.

Her best friend has needed a lot of support and their relationship has changed because she now has to help her with her shopping, hospital appointments and depression.

Some people said that, sometimes, they'd felt burdened or resentful about having to care for the ill person, especially when it had involved making lots of sacrifices in their own life. A few people said they received support with caring, which they'd found helpful. 

She and her husband support each other when caring for their son feels difficult.

Many people said they'd had to adjust to a very different way of living because the ill person's health had deteriorated so much since the illness or accident and this had often been difficult or stressful. Some said that, now they were the full time carer of their relative, they were anxious because, if anything ever happened to them, there would be no one to care for the ill person. 

She'd had cancer before and worried about who would look after her husband if she ever became ill again.

Some people said that, at first, they'd been concerned that they'd become the ill person's carer rather than partner but, later, the role of husband and wife had been resumed. A few said that their roles and relationships had changed and were now more difficult, several saying that they'd taken on more responsibilities, not only in terms of supporting the ill person and doing more within the home but also in terms of looking after the finances because the ill person's memory had been so badly affected. 

Although she's never been interested in financial matters, she is now having to take care of everything because her husband wouldn't be able to remember any of the details.

At first he was worried that he'd become his wife's carer rather than her husband but that didn't become an issue.

One woman said that, because her husband's memory had become so poor, she often felt sadness for the time they could have had together if he hadn't got ill. 

Her husband is now very forgetful and she has to explain things to him and sometimes feels sad because their relationship has changed.

Last reviewed November 2010.