The dawning light of seriousness

Most participants were concerned at the initial onset of symptoms. However, this anxiety increased significantly when participants became aware of the severity of their family member’s diagnosis, often given over the phone due to COVID-19 pandemic imposed visiting limitations. Anxiety was frequently exacerbated by incomplete understandings of the medical condition:

I had a consultant phone, and she was saying, … She’s reading through a big, long list of things. … She’s going down this list. And then she says, ‘Oh, and she’s had a stroke.’ That’s the one word that my mind picked up on because that’s what I knew about. … She went, ‘Yes, but don’t worry about that. That’s the minor thing what’s wrong with her.’ That’s when you think, God … The stroke is the minor thing! … what’s the rest of it!? (5: survivor)

Many relatives of survivors were fearful they would die. As one participant noted, ‘I suddenly woke up, like bang at four o’clock in the morning, and I thought… she could actually be dead now. She could be dead now.’ (7: survivor). For those who did die, there was little or no time for preparation. Four of the five participants were rung at home shortly after admission, told that exploratory surgery have proven unsuccessful, and that their partner had very limited time to live:

I remember crying a hell of a lot. But because it was just so quick… I was more shocked. I remember physically feeling sick to my stomach, and then it just sort of clicked… scared sick or something or something like that because I was literally physically sick. I just remember feeling really raw and empty, and just shocked. (4: bereaved)

And I was with him then. His parents rang my mobile while I was with him… and they heard me tell him that they loved him… And then they hung up. (3: bereaved).

Children’s worries about their parent’s health manifested in several ways. One parent (5: survivor) had to sleep with their child to help keep them calm. One child resorted to prayer (‘You know how children pray by the bedside… and she was going. Daddy, please don’t die, please don’t die’ 6: survivor), while others acted out their stress at school (‘A teacher contacted me and said, ‘Your son’s been in a bit of a mess in the class because he’s worried about his mom’. 2: survivor).

For some family members, trauma continued in the form of flashbacks or memories of critical events for many months: ‘I think now it’s hitting me. Because I’m getting flashbacks and things like that. … And my mind’s trying to deal with it. … And just sort a lying there, just shaking and not knowing who I am or where I am; and I’m not recognizing my room and not knowing my name.’ (1: survivor).

Breaking the bad news

In the face of their own concerns, participants had to determine when and how to inform others of their partner’s condition. Telling children was particularly challenging. Participants had to impart that their parent was sufficiently ill to require hospitalisation, but try to maintain optimism and confidence (despite their own reservations) that they would return home:

I was thinking, what do I say? Do I tell them? I thought it was probably best not to at this stage because they will not sleep… it’ll just make them in a bit of a mess… I was like, ‘Oh, well, she’s staying in overnight, and everything will be all right, let’s get to bed.’ The other thing I thought about it was, what if I’m telling the kids, ‘Everything’s all right, everything’s all right.’, then in the morning, I’m going to get this message saying, your wife had a stroke or died in the night, and then I’m going to tell them this and actually she wasn’t all right, and I was lying to them. (2: survivor)

Waiting for news

Following admission to hospital, anxieties were often exacerbated by COVID-19-related visiting restrictions which resulted in very limited contact with clinicians. Relatives knew their condition was serious, but most struggled to track how their relative was progressing:

… The biggest thing was not being with him. That was the hardest thing, and just waiting for… Because the hospital, they never rang me. The nurses, the doctors never rang me to say, ‘This is what’s happened.’ (5: bereaved)

When achieved, communication could also be challenging and distressing for both participants and health professionals:

… because they took all of the hope away from me. One particular doctor told me over the phone that all of the interventions they were doing, pretty much, were a waste of time and never called me back to talk me through that because I had to put the phone down. (8: survivor)

Communication with patients often involved the use of social media, which could be reassuring, but could also be stressful:

I just laid here just waiting for the phone to go. Just waiting for a message saying, ‘I’m fine’, you know. He was losing all track of time and he’d send me messages at like 4:00 o’clock in the morning… It was just horrendous. All the things that go through your head. Just staring at the four walls and. Yeah, just waiting. (3: survivor)

The lack of direct contact with clinicians and patients led to anxieties about the veracity of patient reports about their health:

I think there was always a worry that my mum was not going to be entirely 100% honest with it, not out of anything other than just like trying not to worry me. I found it hard… (7: survivor)

Finally, participants worried about the psychological impact of hospitalisation on the patient as well as experiencing their own stress:

Whenever she’s been ill or anything like that, I’ve always been with her. Not to be with her is quite upsetting because I’m then thinking of how scared and upset she’s going to be… I came home and literally stood in the garden and cried. That’s being military, 23 years in the army, quite hands-on, quite a person to get things done and fix things and make things right. It’s horrible not being in control. (9: survivor)

Coming home is not the end

For survivors, initial relief following discharge was frequently replaced by the significant challenges of living with, and caring for, a very sick individual, who may have changed significantly from the person before admission to hospital.

And the mood swings. You know, I think it’s 'cos it’s coming down off all the steroids and everything else. The mood swings that he had was… awful … just horrendous. He wasn’t aggressive, but he just didn’t realise how snappy he was getting…You just, you didn’t know whether to speak, not speak. Do you go in? Do you not? You know, it was horrible. I remember my girl crying herself to sleep in my arms because it wasn’t her dad that came home. (3: survivor)

Participants were concerned about the risk of future problems, and how to avoid them. They expressed concerns about their partner’s health as well as awareness that medical aid was not immediately available:

Yeah. I suppose when she came home, I was treating her with kid gloves. I felt like she was a bit, she was super-delicate, and I kept thinking don’t bang your head, don’t do anything when you knock your head or… And that probably got on her nerves a bit… (2: survivor)

For some, recovery from VITT meant a slow acceptance of improving health, confidence that they will not experience further health crises, and shifts towards a more normal life. For those nine individuals with continuing symptoms, the stresses and strains continued.

I lie there at night listening to his breathing ‘cos … he struggles a lot in the night. And some nights I nudge him to make sure he’s going to take the next breath, cause he’s really struggling to breathe, so I know if in the night his breathing is real bad I know in the morning, what kind of day it’s gonna be. (3: survivor)

As well as the daily demands of caring, participants noted the toll of repeated hospital appointments (one participant noted their partner’s 250th appointment had recently passed) either for monitoring, rehabilitation or continuing investigations. Others family members reported the sheer stress of caring:

… in the early days, it was a massively dark time in the fact that she was so angry and upset. She didn’t want to be here anymore. Trying to keep her going, trying to keep her functioning, trying to get the right pills in her, trying to work out what’s going on and trying to work out what appointment’s coming next. … But we still have other days where it’s dark and she gets angry and upset and she doesn’t want to be here anymore. So, dealing with that is hard work… (9: survivor)

I went through a really tired stage where I had this like chronic fatigue and I just, and it would just hit me wherever I was, and I’d actually have to go and lie down no matter what time of day it was. So that’s exhaustion and fatigue. (1: survivor)

Most families reported little or no systematic support following discharge (although some individual clinicians were highly supportive) even when the patient had experienced significant life-changing conditions:

…but there seems to be no sort of holistic approach to supporting families when a loved one has been through a life-changing condition in the hospital or in a coma. There’s no pathway for that to support us. They just look at the patient… (8: survivor)

The whole family has to adjust

The impact of the illness frequently affected the whole family. For some, as noted above, this involved daily commitments to care on a 24 hours a day basis. For others, the commitment may have been less, but life plans were nevertheless changed.

My husband’s job is in London, and we were thinking of moving up towards London. And after this happened, I decided let’s buy a house here in X so I’m just three minutes away from my mum. And then my brother bought his and he’s two minutes away from me. So, we’re all literally in a line. So, we’re all around to be here for her. (11: survivor)

At times, more subtle issues affected the whole family. Two participants, for example, reported the need to adjust the family day to day noise, and for their partner to have periods of quiet:

… we can’t behave the way we used to. Like before, we’d carry on as a normal day to day family messing around, noise, you know, you’d have all that … And now it’s like you’re kind of walking on egg shells all the time because you don’t know… (6: survivor)

Another reported the adjustments necessary due to their partner’s long-term fatigue:

Now, we have to forward plan how busy they will be and his fatigue and all these things you haven’t thought about before. Like swimming. We went swimming once and he was just walking in the water but only ten minutes. He had to get out with me, with the two children, and then he had to sleep. (8: survivor)

Loss of a loved one

For those who were bereaved, the devastation was evident:

It just seems so cruel. It’s the cruelty of it. And it’s the fact that it’s irreversible. There’s nothing. It’s a helplessness. That is the worst—there’s nothing you can do to change this situation. (5: bereaved)

I was on a lot of medication immediately following. I started having panic attacks, which I’d never had before. I was on antidepressants, sleeping tablets and diazepam. I’d never taken anything before. I’d always been really down to earth, grounded… I couldn’t remember anything. I don’t know if it’s a combination of the drugs or the trauma or what, but I just couldn’t remember a thing. I was sleeping a maximum of two hours a night, which was not helping anything. I didn’t dream much, thank God, but when I did, it wasn’t nice. … Yeah, just lots of very irrational ways. I couldn’t read… That was really torturous. I can’t do anything. I can't think. I can’t watch TV. I can’t take anything in. I can’t hold a conversation. (2: bereaved)

Family members of survivors mourned the loss of the person they used to know (‘It’s almost a grief that you deal with’ 9: survivor). For those with continuing health problems, outcomes such as fatigue, difficulties in mobilisation and low mood reduced not only the quality of life of the individual affected but also the quality of relationships with those around them.

He’s not the husband that I had and he’s not the dad that he’s always been and wants to be, and he’s not the granddad that he’s always thought he would be. … I mean, it’s been what, two years… But since he’s been out of hospital, there’s just been a slow decline… And it’s horrible to watch him just slipping away bit by bit… (3: survivor)

Even now, the fatigue… She does an hour’s work, and she’s knackered. You don’t see her before and after picture. I see the woman before that was sort of 8 stone, 9 stone, two kids, went out to work. Because I was out of work, she chose what she wanted to do so she’d do it. (5: survivor)

‘Good days’ are rare, but welcomed (‘…you know, she knows like when he’s on a good day, you know. She goes in and starts chatting away like she does. She always goes to him for the chats.’ (5: survivor)), while roles within the relationship change and may even be reversed.

Loss of a future

Another of the multiple losses these individuals experienced was the loss of an expected future:

There’s been some very dark, dark days and nights as such, where I really needed him to be the X that I know—and he can’t so yeah, I just carry on… You just get up, you get dressed, and you see where the day goes and do what you can. And then you start all over again the next day. … I’ve never been wanting these massive holidays and do this do that, the nights out, you know. We’ve never really done all that, but just be able to just go out maybe for our anniversary … that would have been nice. (3: survivor)

One participant whose partner died summed up the experience of many, including those whose partner survived with continuing symptoms:

We’re thinking about slowing down. Enjoying your life now. You’re getting older. In fact, X, he said, ‘After lockdown ends, we’ll go on holiday. We’ll do something. Children are grown up now. It’s our time.’ So, it’s all those things that are left with you, all those unfulfilled dreams, all those plans we had for the future. (5: bereaved)

Another stated:

I’m still trying to do the things that give pleasure. But I realised the thing that gave me the most pleasure in my life was my marriage to my husband. And it feels like my world is never going to be the same because I don’t have anyone in it who loves me like he did; nor do I have anyone to love in the way I loved him. (3: bereaved)

More pragmatic losses of future financial security were also evident, with many relying on redundancy, universal credit or Personal Independence Payment (PIP) to support them in constrained financial circumstances. One family sold a business, at a considerably lower than optimal price. Others survived on redundancy money that was gradually reducing over time, with consequent increasing limitations of the quality of life and availability of valued experiences.

From trauma, growth

By contrast, a number of participants, particularly among the survivors, reported personal growth both as individuals and as a family, as a consequence of their experiences:

I never knew that I could be so patient and compassionate… (6: survivor)

And I think having a near death experience possibly might have made me more positive about things, appreciating life a bit more… (3: survivor)

It slowed us down and made us sit and think, there’s more to life than this. There’s kids, there’s family. I mean, the family… Some good comes out of some of it. (5: survivor)