Royston

Age at interview: 77
Age at diagnosis: 77
Brief Outline:

After his wife had been in ICU with Covid in January 2020, he was himself admitted to hospital with severe Covid in December 2020. Royston was in ICU on CPAP for 7 days and two weeks on a respiratory ward. Two of his grandsons were admitted to hospital at the same time. Interviewed for the study in March 2021.

Background:

Royston is married and has 5 children and 4 stepchildren. He is a semi-retired butcher. White British (Cornish Celt).

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Early pandemic: his wife was severely ill with Covid

Royston has run a butcher’s shop for decades. When the Covid-19 pandemic began, he put measures in place to ensure the safety of his staff and customers. Because of these measures in the shop as well as at home, Royston was never concerned about Covid “getting to him”.

Royston’s wife, who is a nurse from the Philippines, and works for the NHS, fell ill with Covid early in the pandemic. After her shift she did not feel well and isolated in her dressing room. The couple managed with distancing in the house as best they could: he brought food to a little table in front of the room door; she only left the room to go to a separate adjoining bathroom. They communicated in-house via FaceTime. At first, she seemed to be getting better, but then she got worse. She was seen by a doctor, who admitted her to ICU immediately. It was only then that it was confirmed that it was Covid. Royston and his wife stayed in touch via FaceTime during the days that she was in hospital. It was a scary time for both of them. Eventually, she was discharged home, where she isolated for at least a week in the dressing room, as she had done before being admitted to hospital. Royston brought her food and drink. A year after her discharge, Royston’s wife continued to be fatigued – for instance, whilst she was a keen badminton player, that was now too strenuous.

Onset of own COVID infection and when things got worse

Royston’s Covid infection was unrelated to his wife’s infection, as it occurred months later: on the 24th of December 2020, Royston experienced a cough which lasted for a few days and his hands were very cold. He took to bed. But two days later, his wife – having measured his oxygen levels, temperature and blood pressure, and having been in contact with paramedics about his condition – insisted he go to hospital. Royston remembers walking to the ambulance personnel and being in a Covid waiting ward. After that everything is a blank. He then remembers being in intensive care, about a day later. Invasive ventilation was discussed with Royston as well as his wife. Royston does not remember details; the gist was that the team did not want to risk it.

Remembering ICU

There are some gaps in his memory of ICU, but Royston remembers many other moments with great clarity. He remembers being on CPAP (Continuous Positive Airway Pressure), and a doctor came to ask whether he could take off the belt that he wears for his hernia, as it was not helping his breathing. Another doctor convinced him to keep the CPAP mask on when Royston wanted to take it off. After this, he tried to “sensibly breathe” with the machine, trying to get as much benefit out of it as possible. He remembers his elder grandson being two beds away from him; (he later learned that at that time another grandson was also admitted to hospital, but he remained on the respiratory ward). Royston was in touch with his grandsons in hospital via his mobile phone and could wave at his grandson who was in the same ICU as him. Royston feels it helped him to have his grandson there – rather than being worried about himself, Royston was worried about his grandson. He appreciated that he was seriously ill but was not frightened of dying.

Communication between hospital and home

Royston was also in touch with his wife via his mobile phone. Every morning and evening, and when something changed in his condition. His wife was updated by the staff about Royston’s condition. At one point the consultant told her that her husband may not make it. This was an extremely harrowing time for her. Meanwhile, she was the main point of contact for other relatives and friends.

Royston was in ICU for a period of 7 days, during which he was “very conscious of what went on” around him: he found it was hard to tolerate that people around him took the CPAP mask off, although clinical staff directed them to keep it on. Some patients died. An aunt of his wife in the US, paid for a church hall back in the Philippines, paid for Royston and his wife to be included in the prayers, which Royston believed to have contributed to his survival and recovery.

After the seven days, Royston was moved to a respiratory ward. There was not much contact with other patients in the ward. With only curtains between them at most, conversations with visiting family members (when they were exceptionally allowed in, most likely because the patient was unlikely to survive) could be heard word for word, as well as conversations between nursing staff and patients.

Sources of support

What helped in particular, was having an open window close, for some fresh air. Furthermore, there was a routine: tea at 6:30 in the morning; cereal for breakfast (keeping up this routine was helpful after he came home); even the hospital food was very good. The nursing staff brought his younger grandson along to see him, and for 24 hours his grandson was in the bed opposite him. Slowly Royston began to improve.

Royston was visited by a physiotherapist, who arranged a recliner chair for him, and asked him if he would like to take a walk. As Royston had been exercising his legs in ICU, they found he walked rather well. Eventually, Royston was moved to a single room with a window, where he stayed until he was discharged. In mid-January, roughly three weeks after admission, Royston came home. He was due to have an appointment with the respiratory consultant and another X-ray in the month after the interview.

Initially, after his discharge, he and his wife slept in separate rooms as he was restless at night and got up frequently. He rapidly started little bits of work. Since caring for his first wife, who had frontotemporal dementia in the last 10 years of her life, he had taken on the work for his business that allowed him to work at home, and he resumed this first.

After coming home, Royston had a water retention problem and a bowel problem. He was unsure how these related to Covid. He had to take Movicol again, as he had in hospital, increasing this every day for 5 days. When this did not help, the GP then prescribed, and his wife administered and inserted a solution which resolved the bowel problem. It took 2 hospital visits and a month before the catheter was removed. Also, his arthritis in his knees and ankles seemed to have gotten worse; he had lower back pain and he now required assistance with washing his lower legs in the shower.

Both he and his wife have found that after their respective admissions they have lost hair. Sometimes – mostly during the day – he experienced flashbacks to ICU, although he did not feel bothered by them. They were not frightening. His appetite had not yet returned to how it had been prior to his admission.

Support after discharge

In terms of support after discharge, Royston has had sessions with the critical care and respiratory team. They talked him through what he could expect. Royston also spoke about his experience of ICU with his wife and grandson, as both had been through it themselves. He is grateful to the hospital staff, and he admires their patience. He and his wife have sent a tray of sausage rolls, and a cheque to thank them for what they have done for them.

Royston’s wife stayed in a separate part of the house when she felt unwell.

Royston’s wife stayed in a separate part of the house when she felt unwell.

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What happened is…and she’s, like, doing 13-hour shifts and she came in from work one night and wasn’t feeling right. And she’d always…she’d actually started a practice as soon as the pandemic thing, you know, as soon as the Covid thing first raised its head. She would come in, we wouldn’t greet each other, she would go straight upstairs, strip, shower, before then coming and giving me a kiss and saying hello. So, you know, we were being sensible like that because of the fact she was coming from hospital.

Anyway, on that particular night, she came in and things were obviously not right. And she did go up and that, shower, and she said she wasn’t well and we should…she should isolate. The word Covid didn’t come up at this stage. She wasn’t well and she should isolate. So she obviously didn’t come to our bedroom, she went to one of the other bedrooms which she uses as a dressing room. And fortunately, just down the passage from that bedroom there’s a bathroom, et cetera, toilet. And then I’ve got a separate toilet up on the first floor as well.

She lived in her room and only left it to go to the bathroom for a number of days. And what happened is, I had an antibacterial aerial spray which I used everywhere up on the corridor upstairs. I would wear a mask and gloves. I put a little coffee table outside of her door and I used to leave a tray of food or whatever she wanted. And the communications were via good old Facetime. And after a few days, she seemed to be getting better. But then things went downhill after that and, you know, I said, you know, you’ve definitely got something serious and you need to go to hospital. And so, I made the call, and she went into hospital.

Royston lost a lot of his hair when he first came home. His main problem now is his hernia, which pre-dated his Covid infection.

Royston lost a lot of his hair when he first came home. His main problem now is his hernia, which pre-dated his Covid infection.

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But I’ve found, particularly when I wash the hair, that I’m actually losing some hair. The first time it shook me because…that’s only recently started to happen. The water wasn’t running away and the reason was there was so much hair had got in the plughole, you know, I call it a plughole even though it’s a shower, you know what I mean, the drainage point. So…but my wife, who, as I say, suffered and she was in ICU as well, it was serious and then I looked after her when she came home. But she had a period of hair loss as well. So, it seems to be a bit of a feature. But, you know, I suppose at my age, I’m lucky to have as much as I’ve got.

And I think that’s the length and breadth of the problems. I’ve been asked because obviously I’ve had sessions with critical care team and also the respiratory team, and they all ask me questions about, you know, how I am and what’s happening and all the rest of it, and try and tell me what’s normal, what to expect or not. But no, I think I’m very lucky and there’s nothing much…basically, my limiting factor is the hernia problem, that’s…apart from that, but I can still enjoy life.

Royston and two of his grandsons had all been in hospital; after coming home, they talked about their experiences and supported each other in going back to work.

Royston and two of his grandsons had all been in hospital; after coming home, they talked about their experiences and supported each other in going back to work.

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So, you’ve had two grandsons in hospital, as well as your wife. So, do all of you speak about your experiences in hospital?

Yes. Yeah, my wife and I refer from time to time, you know, things come up. The elder of the two grandsons and I, we’re now getting back to business, if I can put it that way. But initially, let’s face it, it was back in January we came out, so February, March, a couple of months, we communicated at least once a day, checking on each other, how do you feel today, et cetera, et cetera. And when one of us had a letter or a call or something, the other one knew about it. So, we kept like that. Hence, I told him that I was going to be talking to you and he then told me that he had had an email from you because you’d had problems making telephone contact with him.

So yeah, no, we talked everything, you know. Things happened to both of us, you know, like a bruise appears on his leg, is it because he was manhandled, who knows. But I’m just saying that it’s just one thing…the other thing that sort of came to mind. But we talk to each other about how we feel, and we can understand what we’re talking about because we’ve both been through it identically. It's probably silly to say, but the younger grandson who went straight to the respiratory ward, he doesn’t quite have the same understanding because he hasn’t been through what two of us went through. And in a way, it’s almost a pity, it would be better if we could all talk three equally. But we involve him as much as we can and try and educate him.

But yes, we do talk. And we’re now trying to, as I say, more of the conversation is now work, because they’re trying to do a bit. But we have found that, you know, you have to take it very steady because you can go and do a few hours on something and then, my goodness, do you pay for it, you know, because your body’s just not up to it yet. You think you feel alright but you’re not really.