Carl – Experiences of intensive care with COVID-19
Carl was admitted to hospital and ICU in the early days of the first Covid wave in the UK. He had no contact with this family for 2 weeks due to visitor restrictions. During his stay he experienced terrifying dreams, was isolated and craved normality. 10 months later, his recovery was ongoing. Interviewed for the study in February 2021.
Carl returned from his ski vacation in France in March 2020 with Covid-19, a new viral infection that at that point was still largely mysterious to scientists and clinicians alike. Carl was 50 at the time and had never been hospitalised before and had (in his own words) believed that it would not get him;. Coming home from the ski trip, however, he had a flu-like fever and a cough like no other, and “then he knew”.
When things got worse, his wife dialled 111 but did not get a response for over an hour, after which she dialled 999. Carl was taken to hospital and admitted to a Covid ward. He described feeling a sense of relief at being admitted as dealing with his illness was now “not his anymore” – he had felt very uncertain as to what to do, and now he was in a place where people would look after him.
Breathing continued to be difficult for Carl when he was in hospital. After a day or so he was told that they were going to have to intubate him. He remembers asking whether he may not wake up, and he remembers being told that there was a high percentage of deaths from this condition. He signed a paper that stated he wished resuscitation to be tried if this proved necessary. Then it was peaceful – like when he slammed into a wall with his motorcycle; the moment before the crash there was lots of time to think about life. He remembers being “wheeled along”.
Carl spent two weeks in a coma on the ICU, a period he recalls very little about – with the exception of very vivid dreams. The dreams were so vivid, that they are now like a memory to Carl, as fresh as if they were yesterday. And they were horrendous;: about his business going under, his wife having left him, his parents and his youngest child dying, and of physical torture. There were dreams within dreams; he even slept in the dreams. The dreams were very confusing. Carl now understands these dreams as a consequence of the body being on medications and subjected to various procedures; meanwhile the brain is trying to make sense of what is going on – an insight he derived from a conversation with one of the nurses who took care of him whilst he was in ICU, and who later went through his chart with him, and explained what had happened. For instance, she linked the fact that he dreamt about waterboarding to the team having to give him huge amounts of drugs because the oxygen tube kept coming out, and they had to push it back down. This would have been when he was choking and struggling for air.
In contrast with patients in ICU pre-Covid, Carl felt the absence of any familiar voices while he was in ICU: hearing the voice of his wife would have made a huge difference to him. Carl was in ICU before the videoconferencing that was used with later patients had been set up yet.
What stood out in Carl’s account was his emphasis on how time felt very long: he felt he was in ICU, and in isolation, for years;. Even at the time of the interview, ten months after his discharge from hospital, the period in ICU feels that long to him. Consequently, when Carl spoke to his wife on the phone for the first time (when on the ward), he asked her where she was living now, whether they were still married, and whether his parents were still alive. On the phone, he could hear birds and his kids in the background. None of his nightmares were true: his parents were still alive, so were his kids, and his wife and he – still married – were living at the same address. He describes the moment when she assured him things were okay as one in which “suddenly everything was normal”.
Carl’s dreams changed once he had been transferred to the ward. They were more about the ward itself. However, they remained terrifying, albeit they were no longer akin to mental torture;.
On the ward, Carl describes longing for moments when somebody was close to him, even if it was just when somebody came to measure his blood pressure, which happened once an hour. He understands, and understood at the time, that nobody wanted to be close to him “because you have this deadly disease and the longer they are close to you the more likely they are to get it”, but he craved human contact. He would count the moments until the next blood pressure measurement was due. He describes a trip to the CT scanner as “a holiday”: it was eventful to see something else but the ward, to see other people.
Carl felt a strong desire for “normality”. He recalls complaining about the window through which he could not see anything but the sky. He imagined what it would be like outside, and when he did see outside, it was very different to what he had imagined.
He tried to use his phone but could not see the screen very well. From fiddling too much with it he must have reset it to factory settings. He asked his wife to drop off a new one, but it was too confusing to have a different type of phone, and his poor eyesight and fatigue made impossible to use it, even if he had been able to recall numbers, which he did not. When somebody rang, it took him too long to reach for it and pick up – so he missed calls and could not call back.
On the ward, Carl regained his sense of taste and smell. His breathing got better every day. Initially he could not stand. He exercised his legs every day. The first time he could drink was “glorious”. He said, “Little things like that are so precious to you.”
Patients around Carl on the ward were mostly older, and he describes them as getting worse. Seeing fellow patients get worse made him “determined to live”. He calls it “self-preservation”. But he also found himself crying for other people.
When he was sent to the CT scan he saw many other patients – a moment in which he wondered whether he may not be so well after all. But the nurses assured him that he was going to better.
Although Carl had felt safe going into the hospital initially, now he was eager to get out. He described wanting to go home so badly, that he spent what seemed like the whole day trying to remember the questions he was asked to assess his mental clarity: where are you, what is your last name, what year is it? But he could not. He wanted to go home so much that he tried to escape from the ward once. He was not very good at it, he admits, as he was so weak and did not get far. The staff installed an alarm bell on his bed. He refused drugs because he was so terrified of them, but “a doctor came and told him [he] had to take them and that was it”.
Upon discharge, he almost did not believe the real life world; in which people did things like shopping in the shops of the hospital. Arriving home was a big relief; it “boosted him up”. The dreams stopped instantly when Carl was at home. But the sense of isolation continued: first as Carl was in isolation from his immediate family after discharge, and then through the serial lockdowns. The first two weeks at home were really hard; not having the kids near him. But being at home was symbolically important: it felt like now he was on the mend. He drank a lot of tea, watched TV and called people at work, who were all lovely and supportive. There was also a lot of support from the people in the village where Carl lives. Carl has sought contact with two Facebook groups on Covid, which was great initially, until it got “clogged” with many people who did not actually go to ICU or even had Covid, and who wrote hateful things. Also, the virtual nature of the contact did not match his energy level. He would attend if there would be something like this face-face in the future.
Carl has seen his GP, a speech therapist, and a number of NHS staff – all virtually. He continues to have symptoms: nerve damage in his arm and hand, tightness in his muscles in his legs. The pressure sore on his foot took 6 months to heal. Carl remained fatigued and confused for 9 months after discharge. This has had a profound impact on his ability to work and do well at work, even though there was a lot of support. But a sense of gratitude prevails: “I have survived”. Carl is grateful to the NHS staff, and for having access to healthcare services in the way that he did. As time passes and his health gets better, he is slowly picking up the follow-up appointments for these symptoms.
Carl has sent chocolates to the ward to thank the nurses who cared for him, partly because he felt guilty for having been scared of them when he was so confused, even though he knows that they probably knew why he did what he did. What he would like most is to see the ward, to see how it was, to make sense of what was “real” and what was not, but at the time of the interview this was not possible due to ongoing visitor restrictions.
When asked what he would tell staff and patients, Carl stresses the point of creating opportunities for human contact wherever possible. That would have made the biggest difference to him. To patients he’d like to say, “Don’t leave seeking help too long.” He feels that had he gone in earlier he may not have needed invasive ventilation.