First weeks at home

In the early days after leaving hospital, especially after long stays, people are often very tired and require a lot of support even with the smallest everyday tasks. This (see Intensive care: Physical recovery).

This page covers:

  • Early experiences of coming home from hospital
  • Initial days after coming home
  • Adjusting the home, moving house
  • A new role for family members

Early experiences of coming home from hospital

People who were admitted to the ICU (Intensive Care Unit) at the very beginning of the pandemic were discharged into a changed world. The country was in lockdown, shops and restaurants were closed, people who could worked from home and the streets were largely empty. Much was still unknown about Covid-19.

Carl remembered coming home to an entirely changed world. He had to self-isolate upon discharge.

Everyday life with a changed and weakened body

Critical illness coupled with lying in a bed for weeks has a profound impact on the body; substantial weight loss; muscle wastage; and physical weakness. These are common signs of what is called post intensive care syndrome (PICS). Breathlessness and fatigue were also commonly experienced in the first days and weeks at home, due to the impact of the coronavirus on the body. Brian said: “After less than 60 second standing I was wiped out. That was the battle that really affected me.” Many described how they needed to pace themselves, and lower their expectations of what they could do.

At peaks of the pandemic, when there was severe pressure on beds, people who were thought well enough to go home were discharged earlier than they would have been otherwise. They struggled with their breathing when they were physically active. Some people were at home for two weeks before their oxygen levels reached those that would have been required for discharge before Covid. Several received oxygen therapy at home.

Particularly those who had been mechanically ventilated and proned or who had suffered infections in addition to Covid had physical injuries that needed time to heal. Some people had sustained pressure sores and nerve damage. Some still had not recovered their sense of smell and taste when they came home.

The effects of being critically ill with Covid meant that those who were discharged home faced challenges to accomplish simple, everyday tasks such as standing up, climbing the stairs and showering. Some, like Wendy, benefited from previous illness experiences in dealing with breathlessness.

For the first week after leaving hospital Chris lived upstairs in his home because he was unable to climb the stairs.

Several experienced hair loss in the weeks and months after coming home from hospital. This could be highly distressing. Jenny bought a scarf to cover her head when she went out.

Ann lost about a third of her hair within two months after discharge and itching skin, possibly related to her kidney function. She bought a scarf to cover her head.

Sleep disturbance is common after time on an ICU. Like many, Paul had difficulty sleeping at regular times for a long time: “My sleep pattern was all over the place. I’d go to bed at maybe half past ten, 11, get one hour of sleep and then wake up like it was morning time, and it was only maybe midnight or so. So, I’d get up and I’d watch the television till two or three in the morning, then go to bed then sleep till eight or nine. But my sleep was everywhere, and it took me ages to get into a proper routine for sleeping.”

Many felt that at the beginning of their recovery, improvements were notable, sometimes even on an everyday basis. Several were supported by family members and health care professionals from different disciplines (see also ‘Sources of support after coming out of hospital’).

A physiotherapist showed Geraldine how to use a walking stick when going down and up the stairs. Geraldine was motivated to master the stairs by the prospect of seeing her daughter, who was in hospital at the time.

It could be difficult to adjust emotionally to being home. For some, the memories and experiences of the ICU and the ward were still very present. Zoe felt hopeless and not like herself and was grateful for the help her GP provided.

After coming home from hospital, Zoe did not feel like herself. She appreciates the help she got from her GP, who felt she had PTSD.

Adjusting the home, moving house

Some had had adaptions to their house organised by occupational therapists who supported their everyday life and recovery. Some families improvised a bedroom on the lower floor to avoid the use of stairs.

The occupational therapy team had adjustments installed in Nahied’s home. A physiotherapist and nurse came twice a week initially, and later once a fortnight.

A few people were forced to make drastic changes to their living situation. The adaptations that Moazzam needed to his home were not possible financially. Before he became ill, he lived with his wife and children in a flat that could only be accessed via a staircase. After his hospital admission he could no longer climb these stairs, and the bathroom was too narrow as he now needed a mobility aid to stand and move. He hoped that the government would provide a one level flat. In the meantime, he saw no other option than to move in with his elderly mother.

Moazzam moved in with his elderly mother, when his infection from Covid and Intensive Care admission left him unable to climb the stairs to the flat where his family lives.

A new role for partners and family members

The support from partners and family members was central to recovery (see also ‘Sources of support after coming out of hospital’). Often patients who had been critically ill were very dependent on help with even the smallest everyday tasks, especially if they were discharged earlier than usual. Many felt a mixture of relief and uncertainty and faced new practical and emotional difficulties. Moazzam’s mother found that the new role gave her strength and a new sense of purpose.

Kate was relieved when her husband was home but felt that there was very little acknowledgement for what family members go through when their loved one comes home from hospital.

After discharge from hospital family members became temporary and, sometimes, long-term carers. This was not an easy transition. To balance out this shift in roles, some people spoke of their efforts to maintain and rebuild their romantic relationship to avoid it being only about the provision of care.

Steven pointed out how difficult it is for his wife to be both his carer and his partner.

Some family members struggled to provide care for their loved one as they were still suffering with the effects of their own Covid infection.

Pete took care of his wife when she was unwell. Then he also fell ill, and both were admitted to hospital. She was discharged before him. When he came out, she was still too weak to care for him on her own, so she asked their son for help.

Many people we spoke to expressed gratitude for ICU doctors and other health care professionals being just “a phone call away.”

Read more about the time after hospital under ‘Doing the work of Recovery’ and ‘Coming to terms with what happened and long-term effects’.

Discharge from hospital

On this page people speak about being discharged from hospital after being in intensive care: How people felt about going home The timing of leaving...