Intensive care: experiences of family & friends

Adjusting to a changed life

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 they 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 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. 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.

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

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

Some people said that they'd sometimes 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. 

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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. Now they were the full time carer of their relative some said they were anxious because, if anything ever happened to them, there would be no one to care for the ill person. 

Some people who were caring for their spouse were concerned that their relationship would change but 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 said 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. 

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

Last reviewed May 2015.

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