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Doing the work of recovery
Recovery from ICU (Intensive Care Unit) is a long process that can take months or even years (see also ‘Physical recovery from Intensive Care'). Some...
People talk about the long-term effects of an admission to Intensive Care with severe Covid (for more information about long-Covid specifically, see Experiences of long Covid):
Many people we spoke to felt lucky to have survived when many others had not; that they had been given “another chance” or “a second life”. At the same time, it could be physically and emotionally challenging to live with ongoing symptoms and diminished bodily function, and to come to terms with what had happened.
For weeks or even months after discharge, people suffered injuries and symptoms as varied as nerve damage, lung scarring and breathlessness, damaged vocal chords, hair loss, fatigue, forgetfulness and brain fog. These symptoms could be frightening and distressing, especially when it was unclear how long they would last (see also Experiences of long Covid -Symptoms of long Covid).
Some people, like Caroline, Jo and Ann had become temporarily or permanently disabled during their hospital stay. This meant that they could not do things in the way they had before their admission and depended on others for help. Nahied said: “Covid is not a thing that comes and goes. It always is with you, somehow, in your mind, it’s always there. The effect of the Covid, it takes time to go.” She now uses a wheelchair to help her move whilst recovering from the nerve damage to her foot. “Before I had Covid, I was active, I used to go to Tesco’s, I used to go out, I used to go to my mum’s house, I used to be like more active. But now, all that is stopped. I have to rely on someone before going out, ‘cause now I’m in a wheelchair, I can’t walk long distance. If I have to go to town, I have to ask one of my family members to come with [me].”
People we interviewed continued to experience symptoms long after their discharge. Several still felt fatigued 18 months after their discharge from hospital and were exploring whether this may be classified as long Covid (see also Experiences of long Covid).
For some, their ability to work was impacted. It was hard when even longstanding employers did not inquire about their health.
For many people we talked to Covid was an additional issue that came on top of and exacerbated pre-existing health problems. Some people experienced other major life events whilst they were ill with Covid or caring for somebody who was; illness or death of one or even more loved ones; divorce; the birth of a grandchild. Inevitably, this impacted people’s recovery, relationships and ability to work. Many who had lost people close to them found it hard to grieve whilst needing or providing care after discharge, especially when public health regulations were still in place.
Some patients and family members were extremely anxious about the possibility of getting re-infected, particularly before the first vaccines became available.
Gerard said he feared having to go back to ICU (Intensive Care Unit) if he were to catch Covid again. In the summer of 2021, he was glad to receive his vaccination to diminish that risk: “Say I caught Covid again, hopefully not, but say I caught it again I would be quite fearful going back [to hospital] because I don’t know if I could cope the second time, if that makes sense. I certainly don’t feel going back in again… That’s why I’ll be glad tomorrow when I get the initial [jab]…because even to stop you going to that level…”.
It was not unusual for people to wonder about what Covid had changed for them and struggled with the grip it seemed to continue to have on them. Many felt that Covid was still hanging over them and struggled to move on. Kate did not want it to define her family. When Geraldine panicked on the way to the dentist, she wondered why this was the case, and tried to convince herself to continue to go places despite her fear of reinfection.
Several found seeing images and hearing sounds of the ICU on TV could be unpleasant reminders of their time in hospital. Emma said: “I can’t even watch [anything on Covid] on the telly …if anything comes on showing people on a ventilator, I either change the channel or pick up my phone or walk away and do something else.” Chris told us: “Some things that…if I see stuff on the telly, that can upset me still. If I…I watched a programme, I don’t know why I watched a programme on Covid onwards, and seeing what the people are going through, knowing that I’ve been through that, that still sort of upsets me a bit.”
Several people told their story through various channels to help others, and to make others aware of the risks of Covid.
In the weeks and months after discharge, it gradually became clear to those who had been in hospital what their family members had gone through. Family members tried to come to terms with the emotional and physical changes that would perhaps become permanent.
For some family members, it was not until the intensity of providing everyday care eased that the emotional consequences of how Covid had changed their lives could be felt.
The experience of being in intensive care with Covid, as well as the physical and mental effects it had on patients impacted relationships between partners, within families, and with friends and colleagues.
People we spoke to were grateful for what their family had done for them; some felt that the experience had strengthened them as a family; others felt reassured in their love for one another and closer than before.
Some said their relationship had changed, and was now more difficult due to feelings of guilt, depression, fear and anger or different views about Covid. One man found that the experience had increased feelings of separation and isolation that they had felt before the ICU episode.
Some people sought support to help them deal with the relationship tensions that arose following their return from hospital.
Many spoke with their partner and (to a lesser extent) their children about what had happened to them.
Several people received a ‘patient discharge summary’ or ‘diary’ when they were on the general ward, after discharge, or sometimes months later. This document outlined the reason for admission, the treatments and developments during the hospital stay. These diaries are designed to help patients recall and make sense of what happened, and to help distinguish what was real from things people experienced in their hallucinations.
Several people told us that they found these diaries very helpful in that they filled in gaps in their memory. Unfortunately, as standard ways of working on ICU had to be altered, such diaries were not kept for all patients. Those who did not receive them had to rely on the memories of those who had been in touch with the clinical teams. For some patient’s notes could do some similar work.
Chris said: “After I left intensive care and I was put down on the ward. The team from intensive care brought down some discharge notes. On that it stated what they did to me every day, what treatments I had, even what symptoms I had. What they gave me and when, what I was currently taking… It probably helped [me] understand what happened to me”.
Some people had a changed outlook on life. Peter said he was now much more mild-mannered than he had been before his admission, as he realised: “what’s important in life and it’s not about how fast you can muck it out or how fast you can groom a horse or, you know, what’s important is love and relationships and people helping and supporting each other and, you know, yeah okay if it takes you an hour longer to muck out the stables then does it really matter.”
Moments when things resembled some sort of normality again could go on to become cherished memories.
Recovery from ICU (Intensive Care Unit) is a long process that can take months or even years (see also ‘Physical recovery from Intensive Care'). Some...
People talked about what helped them and passed on messages to others based on their experience. This page covers: Messages about Covid Messages for partners/family...