Kate

Brief Outline:

Kate and her husband both contracted Covid in April 2020, but whilst she recovered he had to be admitted to hospital. He spent 12 days in hospital and recovered at home; he went back to work after 2 ½ months. The episode has had a big impact on her. Interviewed for the study in April 2021.

Background:

Kate is a midwife and researcher. She is married; her husband works in transport. He has asthma. They have two children, aged 7 and 13. White British.

More about me...

Onset/Initial symptoms: In April 2020 both Kate and her husband started feeling unwell. She developed a high temperature, loss of taste and smell, and a cough. As it was not a persistent cough, to the main symptom to look out for in the public health information at the time, they did not think it was Covid. She wrote it off as hay fever. Her husband’s symptoms were “nondescript”. They stopped on the Thursday; hers on Saturday. Looking back, she is quite surprised that it manifested so very differently in both of them. By Saturday he had started to be unwell again. On Sunday he woke Kate up saying he could not breathe.

Initial contact with health services

Kate contacted 111, who asked about her husband’s symptoms and said to call an ambulance. Kate remembered they came in masks and aprons only. Initially, they did not believe the oxygen saturation meter, which indicated Kate’s husband’s saturation levels to be mid-80s, as he did not look so poorly.

Hospital admission

The paramedics took Kate’s husband to hospital. Initially neither he himself nor Kate believed that he would be staying in hospital for a long time. She could not go with him due to the visitor restrictions and her own isolation, but also could not have gone for somebody had to stay with the children. In A&E, Kate’s husband was swabbed for Covid twice (the first swab got lost, meaning it took a long time to confirm that he did indeed have Covid.) He was moved to holding ward and then to a respiratory ward.

Communication

At first, Kate and her husband communicated via their mobile phones. Drawing on her clinical training, she helped her husband interpret what he saw staff do. Kate is unsure whether things were not explained to him, or whether he did not understand as his oxygen levels were low. Meanwhile, there had not been any contact between her and the clinical staff and was anxious because she did not know what his clinical picture was. Contact between Kate and the ward staff was extremely limited: on the ward, staff would say they’d ring and then would not; and they did not let Kate know when her husband deteriorated. When Kate called in and reached a nurse, they were surprised that she had not been called, because her husband had been taken to ICU. Kate’s trust in the service calling if something happened was lost. She felt this incident may have led her to call more frequently.

Kate described the ICU communication as much better organised: Kate would receive regular updates from clinical staff who would say at which time they would ring – mostly doctors but also, and significantly, from nurses – who, when she asked for honest accounts of how her husband was doing, gave her information almost as if it was a handover. Particularly important to Kate was the call from a nurse who, although Kate had spoken to the consultant already, called to tell her how the day had gone from a nursing perspective. He told her, for instance, how he had washed him. Kate was eager to speak to this particular nurse to let him know how much this call meant to her.

Kate spent time reading up on the medical research on Covid, which at this point was coming out of China alone. She describes this as her coping strategy which helped on the one hand but made it worse on the other (“a double-edged sword”).

Kate’s experience as a relative in the NHS has influenced her own clinical teaching – she now, even more than before, encourages students to take family members and their concerns seriously.

ICU: The ICU where Kate’s husband was admitted, was working on increased capacity. Her husband was on high flow oxygen and had been given some morphine which allowed him to rest and improved his breathing. Staff had considered intubation/ventilation, but Kate asked them not to if they did not absolutely have to. To everybody’s relief he did eventually manage on CPAP (Continuous Positive Airway Pressure). That evening, he was stable, and started to get better. Later Kate learned that her husband had also not wanted to be intubated, possibly because of seeing five people around him die, all of whom were intubated.

What Kate found particularly distressing is that a film crew was allowed on the ward, whilst she was not. She understands that there was a value in showcasing what was happening in the ward, and the work the staff was doing, but she felt resentful about it as she herself could not be with her husband when his life was fragile and precarious.

Support

During her husband’s time in ICU, Kate was isolating at home following her own Covid infection. Kate felt very supported by a friend who would listen to her on the phone. When Kate cried a lot, her friend suggested that this was ‘anticipatory grief’, which helped Kate make sense of her emotions. Support also came from relative strangers: When the postman found out that Kate’s husband had been admitted, he brought round some shopping for the family. The neighbours gave her their phone number in case she needed something.

Transfer to ward

One day when Kate called the ICU, they said he was no longer there; he had been transferred to the high dependency ward (HDU). From then onwards she was able to talk to her husband directly again. The ward never called Kate, but she called them. One time her husband called Kate ask her to please ring the ward to make them aware that he needed the loo; she did, and he was given a call bell.

Discharge/recovery

On the 11th day staff were not quite happy to discharge him yet. The next day, Kate’s husband convinced them that Kate would be well enough equipped and trained to take care of him. He was discharged home.

Kate felt that whilst people may think that after discharge everything is well, that was not the case at all: a long road still lay ahead. Kate’s husband was breathless, struggled to get up the stairs, and continued to have nightmares. She cooked for him and cared for him. Kate felt there was very little follow-up care for him as well as for herself. The GP had not contacted him at the time of the interview. His GP nurse, who contacted him for his asthma review, had no idea he had been in ICU. His mental health care was never discussed, aside from a few questions around discharge and follow-up. Kate described feeling “just dismissed by them and that was that.” Kate then helped her husband to self-refer to support services, but felt strongly that she should not have been the one to do it, as it involved having to disclose details he may not have otherwise have chosen to share with her. He eventually received a diagnosis of post-traumatic stress disorder (PTSD), for which he received for which he received cognitive behavioural therapy (CBT).

At the time of the interview, she felt that her husband was “back to normal” again. He had gone back to work after 2 ½ months instead of after the 3 he was signed off for. He has a more positive outlook on life now. For Kate, however, things have not returned to the way they were. She particularly remembers being at home when her husband was in hospital – and nobody could be with her in the house because they were self-isolating.

All in all, she felt that there had not been any support for her. Kate talked about her health anxieties; she struggles in crowded places; she gets angry when people do not wear masks; she worries that she has Long Covid. The “anniversary” of his admission had been a distressing time for her. She had reached out to her GP for support, but eventually self-referred to talking therapy.

Reflecting back/Messages to others

The experience has been traumatic for Kate. She found herself trying to rationalise what had happened. The most important thing to Kate is the knowledge that she can pick up the phone to call somebody (e.g., the friend who has been very important in listening to her, but also staff) – and the recognition that it has been traumatic, and the anxieties that result from it. Her message to others is to stay away from social media and to keep talking with others, because that will help you to figure out what you need going forward.

Kate, who works as a midwife in the NHS, felt powerless when the UK government did not lock down.

So, I remember hearing that there was a virus in China, and I remember seeing, they all had their NBC suits on didn’t they and they were washing the streets and stuff like that?  And then I remember there being a case identified in a GP’s surgery on the south coast, and thinking, well, that’s a bit strange.  But, I didn’t really think anything of it, because I remember there being, so I was working clinically when Ebola happened, and I remember that they were preparing for Ebola to come to the UK, which was bizarre, and we had these big, outside A&E, like containers, so we’d had these containers put in with PPE and stuff like that, in case Ebola came over, which was just, you kind of think to yourself, it’s never going to happen.  And I think I was about the same with this.  Yeah, that was it really, I think that’s when I first heard about it, and I didn’t really take any notice of it, because it was being played down actually, in the media. Yeah, and it was a case of, oh, we don’t need to worry about it here, yeah. But I don’t really remember anything significant then, until lockdown. In fact, I do remember, now somebody locked down first, I can’t remember, it was a country, it was Italy that locked down before us, wasn’t it? And I remember them locking down, and a friend of mine who I was working with, her kids had gone to Italy on a school trip and had just got back as Italy had locked down. And I remember that conversation with her about, well what are they doing with the kids, are they quarantining them, or whatever? And then I remember getting really cross with Boris Johnson, [me] saying, we need to lock down, actually, we need to lock down, because the students that I was teaching are healthcare students, so they’re exposed to everything et cetera, et cetera, and I remember about a week before, going, why are we not locking down? Why are we not doing this? So yeah, I remember that.

So that, I found really difficult. And you feel really kind of disempowered or, you know, that’s the wrong thing, impotent actually, because you have no control over this. And I just, the NHS means a lot to me, you know? I was trained by the NHS, I’ve worked within the NHS, and I could just see it, I knew what was going to happen, because there’d been years and years of under-funding and cuts, and, you know, I’d worked in the services where we were so under-resourced, but the expectations were that high, quite rightly, that it would only take something like this to come and tip it over.

Kate and her husband did not recognise their symptoms as signs of a Covid infection.

I was working at home... because we had been locked down, He was [working but] not exposed to the public. Both him and I started feeling unwell, kind of coughing, whatever, and at that point there was no testing, and actually it was fairly early on in the process, in the lockdown, so there wasn’t any testing. Actually, it was at the point where they were talking about the loss of taste and smell but hadn’t adopted that into the set of symptoms. So, the only symptoms that we were told to look out for at that point, were sort of a high temperature, pyrexia, and this persistent cough.

So, both of us were kind of, we had this cough, but it wasn’t persistent, it was almost like a hay fevery cough, so neither of us kind of recognised that it was what we thought it was, because actually it wasn’t classically presenting.

I started to feel [unwell], he then had no symptoms, his coughing stopped, I started to feel kind of unwell, and I took to my bed. Still no sort of temperature or anything like that, not a classical clinical presentation. So, we kind of assumed that that’s what it might be, and it was over the Easter Weekend, so he wasn’t working anyway. So, I took to my bed, and he was fine. By the Saturday, I was alright, I was back up and running, which is kind of typical for me, if I’m unwell anyway, I get sick, and then I’m fine after a couple of days. But, by the Saturday, he then started feeling unwell, again no temperature.

So, on the Saturday I was fine, I mowed the lawn on Saturday, and he went to bed. And he was quite kind of unwell, but a bit non-descript really, there wasn’t a cough, there wasn’t a temperature, he just felt a bit achy, a bit rubbish.

And your symptoms, they were rather diffused, you say, so they weren’t the ones that you were [seeing in the public health messages] …?

They were diffuse. No, so the only classic symptom I had was, I didn’t even, I had a cough, but it wasn’t a persistent cough. And I only had it for about 24 hours, and it was like I get when I get hay fever, it was exactly the same, so that’s what I wrote it off as. I worked all the way through when I had that cough on the Saturday, working at home. I wasn’t pyrexial with a fever, I didn’t have the aches and pains, I didn’t have any of that. And the only symptom that was concrete, but then at that point hadn’t been developed, was when I lost my sense of taste and smell, and I found that really distressing, that I couldn’t taste and smell. That was weird. I took bites out of onions, just so that, because I was like, I don’t believe that I can’t taste. And I couldn’t taste it. Yeah, that was really distressing. Funny isn’t it, how you remember that? [name husband] didn’t lose his taste or smell at all. Funny.

Kate’s husband decided against mechanical ventilation, after which his condition improved whilst he was on CPAP.

So, they were the worst few days, because then he started picking up. He kept on the CPAP, he stayed on the CPAP, he resisted, what I didn’t know at that point, is that he’d declined to be intubated. They went to consent him for it, not that they would have needed that if he’d have crashed or anything, but they said to him about intubating, and he said, I don’t want intubating, I don’t want to be anaesthetised and intubated.  But I think it’s probably ‘cause he’s a stubborn so and so anyway.

So, I think the other thing is, when he came home, I’m jumping a bit, sorry, but when he came home, he was saying how he had watched five people around him die, and they’d all been intubated at that point, and he didn’t want that. Yeah, I firmly believe he’s so bloody minded, quite honestly. Anyway, so that was fine. He then, and this is what I didn’t get, as fast as he had deteriorated to the point where they were considering intubating him, he then started picking up, he then started recovering, even knowing that his lungs were in a terrible condition. So, over the next kind of, I suppose, three days, his oxygen levels, they started turning his oxygen levels down, ‘cause he just wasn’t needing them.

Kate felt ‘anticipatory grief’ when she learned that her husband may need to be intubated.

Now, well, you want to know what was kind of going on at home, as well, at that point? Okay. So, I was in contact with, obviously, my colleagues and my friends, and my best friend was great, she was really supportive, but she kind of didn’t know what to do. And I was sobbing down the phone, it’s just not…not me really. But I had some really close friends at work.

But she is very, yeah she’s very, I can’t even describe what she’s like, she was just an absolute rock, because she was saying to me all through this episode, because I would just be crying and crying and crying, and she said, what you’re doing is you’re grieving for him. It’s anticipatory grief, and that was really difficult, especially when he came home, because you do, you just, oh God, look at me, I’m going to have to get some tissues, sorry…tissue in my eyes. You hear about that sort of thing, but until you’re in the midst of it, you don’t really get what that anticipatory grief is about, it’s like you’re kind of girding yourself to be able to cope with it, especially when you’ve got two children at home, ‘cause they didn’t really get what was going on. And I wanted to make sure that they didn’t kind of, I don’t know, you just want to take all that pain away, ‘cause if he got better, I didn’t want that to kind of affect them, but equally I needed to be honest with them, and let them know that daddy was quite poorly.

Anyway, so an awful night, I spent quite a lot of time on the phone with that particular person, because she was just brilliant. And so at the time where I was working, I worked within a healthcare kind of team, so there were lots of people, there were paramedics, there were ODPs, midwives obviously, nurses, and we all talk. And quite a lot of them had been redeployed, and there was one particular who’d been redeployed as an ODP but she was working in ITU, and she was helping to prone patients and everything. And of course, on the WhatsApp groups, you’re hearing stories about people with their lungs that are like concrete, because they’ been intubated for so long, et cetera, et cetera. I’m going to just have some tea, sorry. Tea cures everything.

Okay, so that was quite difficult, because I needed to hear it, I needed to see those stories, but equally they were really tricky, because then what I was doing, is thinking, okay, well this is what’s going to happen next. So, I was almost predicting.

Kate found it incredibly difficult when a film crew was allowed into ICU when she was not.

So, you couldn’t go with your husband in the ambulance, obviously?

No.

I wouldn’t have been able to go anywhere anyway, ‘cause the kids were at home, and there would have been no one to, and we were in lockdown. What got hard was that I couldn’t see him, and I couldn’t talk to him, and I couldn’t be with him when he was sick. That, I found really hard. And my best friend, you know, she’s just brilliant, she came and picked up all his stuff, twice she came and got stuff, ‘cause I couldn’t leave the house, ‘cause we had Covid in the house, obviously. But it was really, really hard not being with him, really hard.

It was also one of the hospitals, they had a local celebrity in doing a programme during this particular episode, filming ITU, whilst he was there, and filming around the Covid wards. And the resentment I felt, because they would let a film crew in to, it felt voyeuristic, to film what was going on, but I couldn’t be with my husband, and that was not okay.

They were really welcoming of it, because they wanted to showcase the work that was going on in the local hospital. But what they weren’t getting is that I couldn’t be with my husband who could have died.

And I know it was necessary that, you know, they needed to showcase the work that was going on. But I couldn’t be with my husband. I couldn’t even get a message to him, because the communication was so poor, and because it was so early on in the pandemic, they didn’t have the iPads, they didn’t have those means of being able to contact and have those conversations. Yeah. I was really angry about that. I still resent that actually, it’s not good.

I remember being on the phone to my colleague whose husband had died years ago, saying, how dare they? How dare they do that and bring equipment in and have this celebrity in showing, look at what we’re doing, look at what we’re doing, and I can’t even go in and hold his hand?

Kate lost trust in the ward when they did not update her on her husband’s deterioration.

Maybe we can start with the difference that you described between the ward and the ICU?

Yeah. Communication was the biggest issue for me, and I have to say, before I go kind of into that, it was one of the things that I was considering going to PALS about. Not as a complaint, but just to have that conversation about, this is what it’s like to be on the other side. Because I had lots of those conversations with friends that still work clinically, because I don’t think they get that. Unless you’ve done it, you really don’t get it.

So, ITU were brilliant, I have to say. And if they couldn’t speak to me, they would give me very clear parameters in terms of what to expect. So, I will call you at, and the reason I’m calling you at that, is because I’ve got a drug round or I need to go and do this, or whatever, which was great. And then they went above and beyond, because I would then get phone calls from that nurse, I need to find that nurse, I have to have that conversation with that nurse, because he needs to understand the effect he had, and the difference he made, just by making that phone call and having that conversation as a human. So, I’ll find him at some point.

The wards are an absolute different kettle of fish. I was just…and again there was this conflict for me, because I know what it’s like being on a busy ward, and having to deal with patients, families, and it certainly would have changed if I was still clinical, it certainly would have changed the way that I approach families. So, I just wanted to speak to, the nurses were fine, but I needed to speak to a doctor, so that I could have that conversation. And I think it would have been better if they’d have said, had done the same thing, this is when I can speak to you, or this is the reason why…but they didn’t. It was the, okay, we’ll ring you then, and they didn’t. And the biggest issue was that they didn’t contact me when he deteriorated.

I sat in my house with my children, thinking everything was fine, and it wasn’t. So, I lost all trust in them, because I thought, if he dies, they’re not going to call me. And that was really hard. And I think what that did, is that then stepped up the number of times I was calling. I thought, right, I’m going to ring regularly now, because I need to know what’s going on.

Receiving a call from a nurse about the care he had provided for her husband on the ward was really important to Kate.

So, this nurse rang me, and he’d finished his shift, and I knew he had quite a long way to go, ‘cause he’d told me where he was working, and he had finished his shift, he’d donned, doffed and donned, whatever, and he wanted to ring me and tell me how the day had gone, from a nursing perspective. And that is the one episode in all of this, that just stands out to me. Because he didn’t need to do that. He could have just gone home to his family, and, you know, just left that. I’d already spoken to the consultant, so he could have kind of ticked that box, and gone home, but he didn’t. He rang me. And he was telling me things, like how he’d washed him. And that was really important, because it was, although I needed the clinical stuff, I needed that too.

Kate felt that the liaison team could not provide what the ICU doctors could.

They had a mechanism in place where you didn’t ring the ward at one point, ‘cause I think what was happening is everybody was ringing all the time, saying, how’s my, you know, whoever?

So, you would ring this particular number, and it was the PALS number, or it was a…it was somebody who wasn’t clinical, but they were manning the phones, and you would give the patient’s name and number, and they would read off the screen what was happening, which I think was great, but what they would be doing is reading to you nursing notes. What that doesn’t tell the person that’s ringing is, are they eating, you know? How do they look? Have the asked for me, you know? What can I do? Do they need toothpaste? That sort of…the kind of, the softer skills, or the softer information that you need to know. And I suppose going back and thinking about what I was talking about, the photographs, I needed to see that, ‘cause I needed to see him, it’s the same thing with that communication. You can’t see the patient through nursing notes. And there’s very little information that they could have given. So, if they’d have said, okay, this is this, this is this, and I’d have asked a question, they couldn’t have answered that, because it was, the people that were answering the phones were not necessarily the people that can give that. And I think there were nurses manning it, but they weren’t directly involved in that care.

So, I think, again, it’s one of those conflicts that I had, that I was really disappointed with the communication, two thirds of it, ‘cause I’m not going to fault ITU, I thought they were ace. But the conflict arises because I understand the pressures that they were under at that point, they were dealing with something they’d never dealt with before, et cetera, et cetera, and I acknowledge that. But it’s almost like the humanity was lost in the mix. And people were scrambling around to put lines of communication in place, but I don’t know, had anybody at any point said to families, what do you need? It’s almost like there’s this inherent assumption that the clinicians or management can sit around a board table, and go, what are families going to need? And that’s what’s lost. And I’ve found this, you know, through my own work, I know that, that you can have a view as somebody working in that environment as to what you think the patient needs, or you think what the family needs, but unless you ask the family, you’ll miss the mark. And that’s what it felt like. They put all these things in place, like, they had this thing where you could take a picture of a drawing that your children had done, and email it to them, and they’d print it, laminate it and take it to the person. And, whilst on the face of it that looks really lovely, [non-speech event] it just is impersonal and actually what you want to do, is have a conversation with your person or the softer stuff. It was almost paying lip service to it, it was like, what can we do to placate the families? That’s what it felt like. And I don’t think that was the intention at all, but it felt like no one had asked the families, so communication was really poor, really poor. Yeah.

And again, I do feel really conflicted about it, because I don’t think it was intentional, they were doing their best at the time, but they failed. Yeah, they failed.

I know it’s one to one nursing, I know it is in ITU, but that was difficult. And they’re intensivists, I know by what they’re doing, but they had the time to speak to me. And at one point, the consultant, the arrogant consultant, who I really like, I say that, but I really liked him, I couldn’t get my words out, I’d be crying down the phone, and he just sat and listened to me. He didn’t say, can we call you back, or whatever. He got how upset I was, down the phone, and he gave me the space to do that, even knowing he had a full intensive care ward and that he had patients that were dying, he gave me the space to do that, yeah. So, I know that they were really up against it at that point.

It would be helpful for family members to have someone to talk to about their experiences, Kate suggested.

In terms of support, it would be really useful to know that families can go somewhere, talk to someone about their experiences, without that being contingent on the person who was unwell, ‘cause that’s the other thing as well, I know that there are local support groups that [name husband] is going to access, and that families can access them to, but that’s contingent on him being there. And actually, I don’t want him to know how I feel. Because I don’t want to re-traumatise him, I don’t know how my reaction to it, part of the reason he’s okay, is ‘cause he doesn’t know how visceral that reaction was when he was in hospital, and that’s important because I don’t, yeah. So, something independent of the patient, a recognition, oh, I don’t want a lot, do I? But recognition from local providers that families go through this. And I know that people went through a lot worse. There’s somebody at work whose husband was in Intensive Care for three months. Three months, and was tubed for like, probably about two thirds of that. And I can’t even begin to imagine what she was going through. My husband was in Intensive Care, for probably about four or five days, that’s nothing in comparison, but that doesn’t diminish how traumatising that was. Yeah. It’s almost like there’s a scale of it. People think, well, he was only there for so and so, you can’t feel that bad. Actually it was dreadful.

Kate long searched for what would help her when she experienced anxiety and panic attacks long after her husband had gone back to feeling that things were normal again.

So, in the meantime since then, he went back to work early ...yeah, he’s just back to normal, he’s just back to normal. It’s almost like it didn’t happen, which is lovely for him, but I have to keep, so we’ve just gone past the anniversary of it. And he kind of just flew by, he thinks he’s immortal, ‘cause he survived the Covid. That’s not how it’s worked with me, unfortunately. I still struggle being in crowded places, I get angry if people don’t wear masks, like incandescently angry, like I can’t… when it first happened, if I went to the supermarket, I remember there was a couple of times where I sat in my car, and I couldn’t get out of my car. I just couldn’t be in crowded places because of it. Now, [husband]’s very laid back about it, he’s like, well, you know, it’s their choice, if they want…but, you know, and if people don’t social distance, it makes me so angry. So angry. So, the fact that, so my birthday was last week actually, so it was the anniversary of me calling the ambulance. And that day was really hard. Because he just kind of breezed, I survived Covid. I’ve found that really hard.

And it’s almost like, I didn’t want to acknowledge it, and I had to kind of get through it. And then of course, two days later, knowing that that’s when he went into Intensive Care, he just, it didn’t register with him. But yeah, last week was really difficult. ...I just couldn’t, I couldn’t do it, because I was so kind of in the, this is what we were doing a year ago. Yeah, I can’t rationalise that. But there’s been no support for me, and that’s been really hard, and I tried to get support.

I rang my GP and said, I’m not coping. I was coping, but it was like somebody was giving me adrenalin in an IV, I just was hyper-vigilant constantly, and I, you know? So, I spoke to my GP and explained what was going on over the phone, and she said, okay, we’re going to pop you onto some low dose propranolol, which will just take the edge of it, which was great. It was great, I mean, it was the first time I’d felt normal in weeks which actually told me that the whole Covid thing was making anxious anyway, but I hadn’t actually identified it.

So, she gave me two weeks of propranolol, [name husband] had then come home at that point, so I rang the GP and said, can I have some more? Because actually, you know, going forward, it’s, I don’t want to take them all the time, but I’m having these kinds of episodes. ...I think she just wanted me off the phone as quick as possible, so she prescribed me so propranolol, to help with that. ...So, yeah, so I finished that, didn’t feel like I needed anything else, but I knew after he’d come home, that I wasn’t really, I was still anxious and I was having these episodes where I was sat, for no reason, I could feel my heart going. So, again, I tried to get in touch with the GP.

What I needed was for someone to listen to me and hear that I’d had a really traumatic time and [name husband] was getting the help but I wasn’t, and I was really struggling to deal with what had happened, and kind of manage that. And I said to them, the way that I was dealing with that, if the propranolol really works, and they outright refused to give it to me, which is fine, you know, that’s up to them, because they said in the long-term, and they were trying to get me on it. So, they said, try some Talking Therapies. But they wouldn’t refer me, I’d have to self-refer, which if I’d have known, I just would have done that in the first place.

But, yeah, it just felt like there’s no acknowledgement that as a family member going through that, which is not as bad as him, it’s not, that we’re not going through it. Once he’s home that it, it’s all sunshine and daisies. And it really isn’t. It really isn’t. So, yeah, that’s kind of where we’re at today. I’m not unwell, I don’t feel anxiety as much now. Last week was difficult because it was the anniversary of him going in, but I kind of just dealt with it, I suppose. Yeah, and I think that’s probably about it, I’ve probably talked for about an hour actually, I’m so sorry, that’s quite a long story. And it’s not as bad as other people, ‘cause their partners’ died, or they were intubated for months, and it wasn’t that bad, but it was bad enough. I wouldn’t wish it on anyone.

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.

Let’s just go over a little bit, from the point that he came back from hospital, like, do you remember what you felt then?

I was just relieved he was home. I was relieved he was home. I don’t think I slept properly for about a week, because obviously his breathing didn’t get back to normal for weeks, he couldn’t get up the stairs in one go. We’ve got two flights, not two flights of stairs, it sounds very grand, but do you know what I mean, two flights? And when he first got home, he couldn’t do that all-in-one go. And it’s almost like, he would set that as his goals, and I get that. So, within a couple of weeks he was doing that. He couldn’t get to the toilet, so we had to buy one of the little plastic things, so he could pee, which was just hilarious, but equally not. So, he would do that downstairs, ‘because we don’t have a downstairs toilet. So, it was just those little adaptions that we had to do. But I was just pleased he was home, and that I could do something. I could do something positive, and practical to help, because you feel so helpless, it is a loss of control, but you just want to do something to be able to help. And I fed him, that was, like any wife does, you know, that’s how you show love isn’t it, you feed them? And he’d lost a lot of weight, so we started with a kind of soup and stuff like that.

There’s been no support for me, and that’s been really hard, and I tried to get support…. it just felt like there’s no acknowledgement that as a family member going through that, which is not as bad as him, it’s not, that we’re not going through it. Once he’s home that it, it’s all sunshine and daisies. And it really isn’t. It really isn’t. So, yeah, that’s kind of where we’re at today. I’m not unwell, I don’t feel anxiety as much now. ...Last week was difficult because it was the anniversary of him going in, but I kind of just dealt with it, I suppose. ...And it’s not as bad as other people, ‘cause their partners’ died, or they were intubated for months, and it wasn’t that bad, but it was bad enough. I wouldn’t wish it on anyone.

Kate felt a lot of anxiety around reinfection but also does not want Covid to be what defines her and her family.

So, you said your family’s mostly back to normal, your husband’s mostly back to normal, but [for] you, things changed, yeah?

Yeah. I mean, it’s as normal as it can be, I suppose, in the current situation. It’s not much different to how it was before. I mean, I think from my perspective, I’m a little more cautious around people, but that’s just that fear of catching it again, which is ridiculous, ‘cause I’ve had my vaccine. He hasn’t. He’s due to get his at the weekend, which is quite nice. But, do you know, it’s funny, so [daughter]'s in secondary school, and she has to lateral flow test twice a week. I find that quite anxiety inducing. Just waiting for that test to tell me that she’s negative. Which is really strange, really strange? But I can feel myself getting anxious in case she’s positive. Again, I can’t rationalise that, there’s no logic behind it or anything like that, but I don’t like doing it, so I suppose that’s it.

But nothing’s changed, and I think that’s the thing as well. It’s almost like you go through this massive event, and then all of a sudden, it’s all back to normal again. And that’s quite disconcerting in itself. I worry about being around people, that’s my main thing. I’m less tearful talking about what happened than I used to be. I am angry, I do hold a lot of kind of anger and resentment around the communication issues at the hospital, that was a big deal. But I’ve had to just turn it round so it’s a positive thing, and I’ll use that in my teaching, and my sort of clinical practice.

Yeah, it’s difficult to know what to say really, because it’s like we’re back to normal, it’s like it didn’t happen. And that’s strange. I actually get a bit bored of him talking about it, is that awful to say? Oh, my God, I mean, he’s going to dine out on it for ages. We talk about this all the time, and it’s again going back to what we were saying, about him saying that whoever at work didn’t have proper Covid, because they weren’t on CPAP or whatever. And I know again, that’s that sense of humour, but actually I just think, let’s not re-traumatise ourselves, let’s not go over it again and again and again. Because I don’t want it to be our defining thing. That’s important, that it doesn’t define who we are, as the family, as a couple, as individuals, ‘cause it shouldn’t, you know? There’s other amazing stuff that happens, and that will happen in our life, and I don’t want that to be it.

Kate advised family members to stay away from the news and find somebody to talk to.

Keep away from social media and the news, because you don’t get a balanced view or information. And I suppose, keep talking. Just find someone you can talk to, and if that somebody is on Intensive Care, a group outside of it, somebody who’s had a similar experience, whatever, just find that anchor point, because that will help you then to know what… ‘cause you don’t know what you need at that point. It’s only a year later that I can sit back and go, yeah, that’s what I needed, or that’s what I need going forward. You won’t know that, so just find an anchor point and stick with that. I mean, that might be the Ward Clerk, I don’t know, it can be anyone. But just find that anchor point, ‘cause they’re important.