Elizabeth

Brief Outline:

Alexander was admitted to hospital with Covid in April 2020. When he continued to deteriorate, he was mechanically ventilated. Having suffered renal failure and an intercranial bleed, Alexander passed away after 22 days in hospital. Elizabeth and their children were present in hospital when he died. Interviewed for the study in October 2021.

Background:

Elizabeth works as a nurse. Alexander worked as a network technician. Elizabeth and Alexander were together for 38 years. They have two adult children, one of whom lives close by.

More about me...

First symptoms

Elizabeth’s husband Alexander developed symptoms of Covid in early April 2020. Elizabeth works as a nurse and stayed home from work to self-isolate. Alexander’s symptoms went up and down in the days that followed, and then got worse after 10 days. When he nearly passed out, Elizabeth felt it was time to get help. She called for an ambulance. The paramedics measured his oxygen levels at 83%. Elizabeth could not accompany him when they took him to hospital. At this point she simply thought that he would require some oxygen and would then come home.

Admission to hospital

Alexander was admitted to hospital. Elizabeth isolated at home for 14 days after his admission. Elizabeth tells me that Alexander was a talker but found it difficult to talk about emotional things that would upset people. With his shortness of breath calling was not an option. Elizabeth has looked after people who were breathless before, so she understood, and she texted with him instead. The nurses had at some point mentioned the possibility of FaceTime, but this never came about.

Admission to Intensive care

When Alexander continued to deteriorate, he was admitted to intensive care. He was ventilated four days after his admission. Elizabeth later learned that he had been asked whether he wanted to speak to her, but he had declined, which she understands.

Elizabeth and Alexander have a son and a daughter (28 and 31 years old). Their daughter lives locally, their son lives some hours’ drive away. When Alexander was ventilated Elizabeth asked both to come and stay with her. They did and spent the time together, trying to have some sort of regular day-to-day together, whilst waiting for news. Elizabeth recounts how they “quickly got into a routine” of calling, walks and food (although neither of them had an appetite) and watching TV. Although it was helpful to have her children there, Elizabeth also felt like she needed to be able to cope, to protect them. Because they were in lockdown and the affiliated restrictions on household mixing Elizabeth was unable to see any of her friends in person.

Communication with clinical staff

Elizabeth was the designated contact person for the hospital. This meant that she was updated every afternoon by a ‘care support team’. One day they called later than usual, which Elizabeth describes as very stressful. In addition, from the calls from the ward, Elizabeth quickly developed the ‘habit/ritual’ to call the ward in the mornings and at night to ask if anything had changed, to help ease the anxiety associated with not being able to be in hospital with Alexander. When she called, there was a password she would use so that the hospital knew that they could disclose information about Alexander’s condition to her.

Unexpected calls were worse, as it meant that there was bad news. Three times Elizabeth was called by a consultant: one time about Alexander being intubated, another time about the staff putting a DNACPR (Do Not Attempt CPR) in place, and a last time to ask whether she could come in. In terms of communication, the staff were helpful in that they answered all Elizabeth’s questions. Even so, there were many questions she did not ask at the time.

Passing information on to others

Elizabeth updated other family members, including Alexander’s mother, with the information she received. She found this challenging, as she felt she was responsible for ‘giving them hope but not too much’.

The end-of-life visit

Elizabeth describes how she may have allowed herself to have a bit of hope. At one point she asked a nurse whether she could lose him, and the nurse said yes. Alexander suffered renal failure and an intercranial bleed. The hospital called to ask whether Elizabeth and her children would come in for a visit, and so they did. Although the nurse did not explicitly mention that Alexander was dying, Elizabeth knew from the fact that they were asked to come in.

She and her son choose to be present when Alexander was extubated. The whole experience felt rather surreal. So much that her son left the ward and asked, ‘What happened in there?’. Elizabeth would have liked a few minutes with Alexander before he was extubated, in addition to the time she had with him after his extubating.

It was possible to speak to the nurses afterwards, which Elizabeth felt was helpful. Taking Alexander’s belongings home was difficult, particularly because there was a book in it that Alexander had begun reading, but never finished.

Elizabeth and her children arranged Alexander’s funeral over Zoom. Because the funeral was so small, Elizabeth feels that he has never had the funeral he deserved.

Looking back

The interview took place 17 months after Alexander’s death. Elizabeth has since gone tentatively back to work. Looking back, what was hardest was that Elizabeth could not be in hospital with Alexander.

She has visited the intensive care ward where Alexander was in May 2020 and has spoken to staff in the ward (not those who took care of Alexander). This has helped her process some of what happened. She has taken part in a support group (online and, later, face-to-face), which was helpful to gain the sense that what she is going through is common. She has also taken part in a local support group, but she found this unhelpful as other members of the group were mostly older, which she felt made their experiences too different from her own. Elizabeth has since accessed counselling through work.

In contrast to what many people assume and what the media report about people who have been bereaved through Covid, Elizabeth tells me she has never felt angry about what has happened. She does feel upset when media report about Covid deaths in terms of numbers. She emphasises that Alexander was not a number. He was 57 years old; they had worked all their lives and were looking forward to retirement together. She feels cheated now that he is no longer with her.

Messages for others

Going back to the intensive care department helped Elizabeth, as it brought ‘closure’ (although she is not particularly fond of the term). She feels that her bereavement is only starting now that society has opened back up, and that ‘normality’ is now expected to be possible again –as this will not be the case for Elizabeth, she will all the more feel the loss.

Elizabeth and her husband were both working in essential jobs. She felt that they had both not understood the severity of Covid yet because they were not particularly worried.

Do you remember when you first heard about Covid and were you worried about yourself or your husband?

He was a utility worker, so we were both key workers. Ironically, he was more worried about me. I mean, I was, as I say, a nurse in the community environment. I was only doing one or two days. I wouldn’t say that I was particularly at that time, because I had done infectious diseases in the past ironically, and I don’t think either of us probably totally understood. Because it was very early. Because he became poorly in the April so it was very much, it would have been completely different if it had been in the next wave, then I would have had more of an understanding. I wouldn’t say that I was frightened of it particularly. I just didn’t understand it.

Yes, it was very early on, wasn’t it?

Yes. And I do sometimes think back, gosh if it had been the second wave would I have done… I would have a thermometer. I didn’t even have a thermometer. That was probably a typical nurse thing. But I could tell he had a temperature. But yeah, I think that was it, yeah. But no, I wouldn’t say we were.

And even when he picked it up, well as I say obviously, we didn’t know for definite because they weren’t testing and where I worked, they weren’t really testing. And with being a bank nurse I wasn’t a member of staff who was there constantly, so we didn’t really have access. Obviously, I said, oh it’ll be fine, don’t worry, when he had this little cough thing. And I think it’s because he didn’t deteriorate, because it was a classic, it was ten days before he really deteriorated, really ill. He didn’t have much of an appetite which was very unlike him, it was incredibly unlike him, but other than that no.

Elizabeth worried that she brought Covid home to her husband.

I actually, because I’m an NHS health worker they offered to have the antibody check I did have the antibody check. Family said, I was in bits, mum, don’t blame yourself. I did share that I had antibodies, so I had been, I had it. I had no obvious signs and symptoms that I had it.

I think maybe on the, you look back and you’re thinking maybe the Monday, Tuesday before he became ill on the Wednesday did I…because I just felt a bit off. But then I get really bad hay fever at that time of the year. But there was nothing to stop me from functioning. I just felt a bit tired, and I do wonder was it then or did I pick it up when he obviously was at home. I don’t know. And I try not to go down that way because I’m not stupid; I know there’s a chance that I could have brought it home, I know there is. But then he was out and about and meeting other people so, and I maybe said, don’t blame you, you don’t know where it’s come from. So, I do have to try and put that to a side and think we don’t know and everything, so.

No, we don’t know.

We don’t know, and you could tie, could tie yourself in knots and think, did I, did I give it to him. Because at that time they weren’t really, if they sent anybody off to the acute, they weren’t really testing them. But then I hadn’t been, I know it’s not long, at work for about a week. So, you just…I don’t know.

But it also meant that you didn’t feel ill around that time.

I didn’t feel ill, no. No, I had no specific symptoms.

Elizabeth called 999 when her husband told her he thought it was time to do so.

And what was the point when you felt that you needed help? You mentioned that he was getting increasingly breathless.

I think on that Friday night he’d gone up to bed before me, and I’d gone into bed, we were in separate rooms at that. Obviously, I didn’t isolate him, didn’t put him in a bedroom and left him there, but we were in separate rooms, and I heard him coughing. And I went and he was a bit breathless. But I opened the window and then he said, I’m fine. And as I say he was talking to me in full, you go back to bed, and so I went back to bed. And then I heard him get up and I went down, and he said, I’m okay, you just go back to bed. And I thought I don’t think I’m so happy. I went back and he was asleep, so I thought well, if he’s sleeping then he’s okay.

Then you lose a bit of track of time. Then he came upstairs, and he sat with me and said, I think it’s time. And with that he was sat, and his eyes were starting to roll, and he was starting to, to go on me a bit. I thought ooh, do I dial, because initially I thought is it 111 or 999, I thought no, it’s 999. He did come around quite spontaneously, he did, and he managed to walk downstairs and was talking. He was downstairs, you lose track, about an hour, it wasn’t that long. But as I say, he was able to walk out to the ambulance. Yes, his oxygen levels were low, they were 83 per cent, so he was obviously one of the happy hypoxia, as they say, so yeah.

Elizabeth was self-isolating alone when she heard that her husband had been ventilated.

I know the night he was ventilated, actually it was really strange, it was about 10 o’clock the doctor phoned and said nothing to worry about, we’ve just put your husband on a ventilator. I think she meant, he’s still here. It didn’t upset me at that time; I just thought afterwards thought... but I think she was just trying to tell me he was all right.

But I know when I got that news that night initially, I thought well, he’s tired, he’s exhausted, he’s going to need a rest. Because at that time I was on my own. There was nobody in because I still had to isolate until the next day. And I thought, I’m going to need to speak to someone. The person I phoned was my son because I knew he had his wife with him. My daughter was on her own and my mother-in-law so I couldn’t phone, I didn’t feel I could phone them at half ten at night. I thought yes, I’ve got my mum but it’s not fair for my mum to know before my daughter and my brother-in-law know. So, I just spoke to my son in Wales, because I just had to speak to someone. And then I phoned them in the morning. In fact, my daughter hates a phone call at 8 o’clock in the morning, absolutely hates it now because that’s the time. Because I thought if anything happened in the night, I’d deal with it but let them have one more night of sleep and not be all sat by themselves wondering and worrying. But it was a long night that night. It was a long night.

Elizabeth’s husband was in ICU in early 2021. A nurse herself, she understood why contact was scarce, but it was nevertheless very difficult.

Can you tell me a bit about how you were in touch with your husband when you went into hospital, because you weren’t allowed to accompany him, is that right?

Yeah. We weren’t allowed any contact. By phone, by text. I sometimes think, should I have phoned him, but then I thought I’ve looked after people who are breathless, I have seen people in acute respiratory distress. But if he had been able to talk to me, he would have phoned me. But we texted. There were a couple of days where I didn’t hear anything from him at all. They did mention that we had the option of – oh gosh I can’t remember what it’s called – Facetime but it never came about. As I said at that time, we were able to have a few texts. But no, I never spoke to him, never saw him, until that night he died.

That makes it so difficult I think, no?

It’s really…I understood it. I did understand it. And coming from my background I always felt sorry for the nurses. I had been in that situation, maybe not as bad, but I’ve phoned people up at 4 o’clock in the morning who I don’t know and told them the worst type of news. So, I was always aware that nurses were absolutely dealing with these critically ill patients and not knowing the families.

Elizabeth found being the designated contact person for the hospital emotionally difficult and exhausting.

Can you say a bit more about being that designated person? What is that like? So, you also have the responsibility to inform other people?

Yes.

What was that like for you?

That was really hard, really. Because people, as a nurse they maybe, expected me to know more than I do, but nobody knew anything about this disease at that time; it was very, very limited. And they maybe, expected me to know more medically than I maybe did. And also, trying to be honest with them, I think it was trying to be honest to say yes, he is really, really poorly. …And I’d say yes, he’s all right, but please remember he’s still very, very, very poorly. And that was it. I was like yeah, I’m giving with one and I’m taking away with another. That was really hard being that designated spokesperson, really, really hard. Obviously, it’s a role I would want; I wouldn’t want to not have that information. But it is, it was yeah.

I hear you say that you’re responsible for managing their hope as well as yours?

Yes, yes. I didn’t want to give them false hope. I didn’t want them to be totally despondent. But I needed to, I was always honest. I needed to be honest. And I am a very honest person and I needed to be. But… I didn’t want to take their hope away. …It’s exhausting, absolutely exhausting doing that.

Elizabeth started her day by calling the ward to hear that her husband was ok.

It’s strange how you get into this ritual, because I knew in the afternoon when I spoke to the care team, I’d phone my mother-in-law and then I’d phone my mum who would phone my two sisters. You do get into that. But you’re so anxious, so anxious, even just picking that phone up on a morning and thinking oh god. Even though I knew they would have told me; I would have known if there was something. It’s just so draining. Just exhaustion. You go from a phone call, you have that little ha, yes, everything’s okay, for a minute; and then you go back and got to make the phone call in the afternoon. And then you get the phone call and then you think yeah. Then I would tend to go for a walk because I thought I’ve got…they’d just spoken to me, even though I knew things could change.

And on a night if I couldn’t quite get through onto the unit, and it was like I was consciously thinking my mum and my mother-in-law are waiting for my phone calls and I hadn’t been able to speak to them, you know what I mean, because it’s like that routine. And I can remember one afternoon the care team didn’t phone till a lot later, you knew roughly what time they were going to phone, and it was a lot later, and I can remember just being nearly on my… Even though I would have known, but it’s strange, but maybe because I was conscious of everybody else waiting for the news as well; it wasn’t just me, it was the whole, the whole family.

After he died the next day, it was just relief I wasn’t listening for those phone calls anymore. I did have to change my ring tone; I did have to change it. And I’m not a person who was tied to my phone, never before. Most of the messages I used to have were, what’s the point of having a mobile phone if it’s not turned on. But I became that person who couldn’t leave it; went into the shower and had my mobile phone in the shower, and that wasn’t me. But I just, you were just tied to that phone just waiting.

Yes. It’s the waiting for the possibility of being called, right?

Yes. And you don’t want to be called because if a doctor phones you then you knew that was bad news. I did have a couple of phone calls, so when they phoned when you weren’t expecting it that was worse because you knew, even though you knew that was going to be news, that was going to be some news that you didn’t really want to hear.

Elizabeth had been expecting the call to come see her husband in hospital, but it still came as a shock.

How did you find communication with the doctors? What did that look like?

It, I found it okay. Obviously, they were telling me not good news, so that is the different, a different scenario. Yes, they did answer any questions and everything I wanted. Sometimes you don’t, you don’t always think what you want to ask. You tend to be a bit, I don’t know, it’s really hard. But yes, they were…they did give me information when they spoke to me, yes. Other than the night when I said, let me know, and she goes, no I can’t tell you. Obviously, she was telling me the worst news and I could understand why she didn’t want to tell me, but I knew. I was invited to the unit so I knew that I was going in to say goodbye to my husband, because we wouldn’t have been invited in otherwise.

They didn’t tell you over the phone that they thought that it was end of life?

They did tell me what the, what the scan had shown. But I knew, the nurse had said a couple of things, which I’d sort of picked… I wondered was she telling me this because she knew I was a nurse and that I would pick up like that his pupils weren’t react…weren’t reacting; so, I knew there was something wrong with his brain. But I can understand why she didn’t want to tell me over the phone. But you knew, you knew because, as I say, you wouldn’t have been invited in otherwise.

And did that come as a shock to you or was it something you were expecting to some degree?

I’d always there was always part of me that I had to protect myself. I knew, I think I remember speaking to the care team, if I’m lucky enough for him to come home. There was always part of me that had to protect myself.

But I believe that weekend, because things had started to change a little bit breathing wise, things had started, he’d had maybe one better day, and I think on the Sunday as well they were saying he’d maybe started to breathe a little bit more. As I say I’m not an intensive care nurse, but on the ventilator, he’d been showing signs, managing to take his own breaths a bit, and I think I let myself have too much hope that day. Even though in the morning they told me he’d been bleeding from his signs, so I was very unsettled in the morning. But then they said he’s breathing, and I allowed myself too much hope. And I do feel guilty that I allowed myself sort of yeah hope that he may come out.

It’s really hard to explain because you’ve always got to have to have hope, but you have to protect yourself and think it may not happen. And that Sunday was a bit of a shock. If it had been a phone call two or three days beforehand it probably wouldn’t have been such a shock, but that Sunday was a shock, yeah, yeah.

Elizabeth and her son chose to be present when Alexander was extubated. They stood behind a screen a form of infection control and could spend some time with him immediately afterwards.

And when you say there was a screen can you explain to me what that looked like?

When he was extubated, because it’s an aerosol generating process, and obviously you had to have the proper masks then. We just stood in a little area. It was only for a minute until they took the tube out and then we could go straightaway. We just couldn’t be there as the tube first came out.

So, you could touch him?

I could touch him, but we had gloves.

Of course.

A double glove thing. And he didn’t look – I’m used to seeing people who are dying – he didn’t look like my husband. He just did not look like…I do wonder where was I, that night, where was I, if you understand what I mean. Was it my professional head? Was it my…I don’t know. I think it was probably shock.

Elizabeth would have liked a few minutes with Alexander alone before he was extubated.

And I do feel like I didn’t say goodbye to him properly. I do feel that, and that was another thing that I struggled with that I didn’t say goodbye. Maybe because the two children were there.

I can imagine that’s an impossible situation to be in, right?

Yes it is.

Is this what you meant when you said you’re also a mother so you’re trying to protect them?

Yes, I am a protector with any of the family, I think I am. It’s probably my role maybe as a nurse, I don’t know; we protect. And did I feel like I could say what I really wanted with my daughter and my son were sat there? Probably not, probably not. I mean, when they left, I did have a few minutes on my own, but obviously he had died by then.

Maybe really is it because I see other families have time to say goodbye? That is maybe the reason: they’ve had time to say goodbye. Whether it’s any easier I don’t know, do not know, I don’t know.

Is there any way you wish you had maybe shaped it differently? Would you have liked some time by yourself with him?

Yes, I think because they asked us “did we went to be there” when he was extubated, and I said yes and my son said yes, and my daughter didn’t so she stopped behind. Obviously, we had to be behind a screen because it’s an aerosol generating. But I wish I had gone in first on my own and had maybe ten, five, ten minutes with him to say what I wanted to say. But then I would I have said what I wanted to say? I don’t know, I don’t know, don’t know. But yes, there is still that that I never said goodbye.

In the days after Alexander’s death, what had happened had not yet fully sunk in. Elizabeth could not unpack Alexander’s belongings that she had taken from hospital.

What did that look like when you went to the hospital and then he then passed away after being extubated? What happened after that?

What happened after that, as I say I stopped about five or ten minutes later and then I went out, and then I had to do the phone calls, I phone called them. I did speak to the nurses as well. I remember saying I think I’m going to need to know a bit more information, I think I’m going to need to know a bit, to know a bit more at that time.

I think I’ve always known I needed to know, but that time I just had to…it was just surreal going back home in the car. I don’t think it totally clicked. I phoned a couple of people. I remember getting up that next morning and maybe friends who were…just writing on the phone sending Alexander died last night, just going through them all and just, just saying that. I was just tired on Monday, exhausted on Monday. And then Tuesday I had a bit more normality. I just felt, felt a weight had been lifted off me, obviously because the full reality of widowhood hadn’t really hit me. But I wasn’t waiting for those phone calls anymore; I knew the outcome; I knew what the answer was.

It was going home afterwards and having to have a shower and putting your clothes in the washing machine. And obviously I couldn’t touch his belongings for 72 hours because at that time they had to leave, so what I brought back from the hospital. To be honest I didn’t unpack them for about five weeks anyway. I sorted his phone out because I just wanted to disable the thing. The reason was because he had a reading book in, and he never got to finish the reading book. That was the one thing that put me off from going through his belongings. It’s strange, it’s never been the bigger things with me; it’s the little things.