A-Z

Experiences of Covid-19 and Intensive Care

Coming to terms with what happened and long-term effects

People talk about the long-term effects of an admission to Intensive Care with severe Covid (for more information about long-Covid specifically, see Experiences of long Covid):

  • Injuries and impairments after hospitalisation with Covid
  • Emotional echoes of hospitalisation with Covid
  • Emotional impacts on family members
  • Changed relationships
  • Coming to terms with what happened
  • A return to some sort of normality

Injuries and impairments after hospitalisation with Covid

Many people we spoke to felt lucky to have survived when many others had not; that they had been given “another chance” or “a second life”. At the same time, it could be physically and emotionally challenging to live with ongoing symptoms and diminished bodily function, and to come to terms with what had happened.

For weeks or even months after discharge, people suffered injuries and symptoms as varied as nerve damage, lung scarring and breathlessness, damaged vocal chords, hair loss, fatigue, forgetfulness and brain fog. These symptoms could be frightening and distressing, especially when it was unclear how long they would last (see also Experiences of long Covid -Symptoms of long Covid).

 

Carl continued to have multiple symptoms in the year following his discharge from hospital.

Carl continued to have multiple symptoms in the year following his discharge from hospital.

Age at interview: 50
Sex: Male
Age at diagnosis: 50
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It took quite a long, long time and it’s been little steps all the time. Bit by bit things have got better and better. I still, as I say, when I think back to July, August, summertime when I thought I probably felt well, when I think back now, I can see how I was still quite confused doing things and I was probably making mistakes with things. I was still probably suffering with that fatigue really badly and it’s just messing with my head. But actually, in that time I thought I was really good; but now when I think back, and I might even think back in six months’ time oh in January I was still not quite right, I don’t know. And I’ve had to make quite big decisions in business and things, and it’s not been easy, because I look back and I think, oh I didn’t quite get that right and stuff, because my head wasn’t thinking straight.

But I feel pretty good now, apart from my legs and my nerve damage in my feet and arm and hand, but I feel all right. I go and walk five miles a day every day just to try and, sometimes just to straighten my head, but also, I want to get fit. But I find it’s quite difficult to exercise; I get out of breath really, really quickly. I’ve probably never been a big person for doing the gym and things like that, but my body still feels quite weak, even though I do lots and lots of exercise when I get up in the morning because I can hardly move, my legs are so stiff. I do loads and loads of exercises to get myself going. And, as I say, I walk five miles a day. I’m just trying to get myself in better shape.

I think it’s just, even though I don’t feel the fatigue so much now, I still feel concentration is difficult. Even with driving I used to race motorbikes and things, so I could drive very fast, drive really efficiently, quickly; I’m very aware that I’m not as sharp as I used to be. It’s not a bad thing but I just drive really carefully. I just don’t feel as sharp in those things, and I don’t feel as sharp in life as I used to be. But maybe that will get better and better, who knows.

 

Victor is likely to be left with scars on his vocal chords and with nerve damage to his foot.

Victor is likely to be left with scars on his vocal chords and with nerve damage to his foot.

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Victor: Again, I’ve got a lasting memory of all these different medical teams coming round and asking me how I am and everything they said was concentrating on being positive. But there was one comment, one of the doctors said to me…and the doctor said, look if this is what you’re left with, like the voice and the foot, he said, take it because you’ve been very, very ill.

Although the positive side is that I’ve come out of the stage of being very, very ill, obviously that’s a positive but that was the only slightly negative, if I am going to be left…the statement said there was a chance I would be left with these scars. So, if I have to take it, I’ll take it, but I don’t want to, so yes…

Paula: Vic doesn’t hear it, but I do, I hear the improvement, even though it might be a minute every day there is.

Victor: I actually think it don’t sound too bad today, but I’ve actually been back to work for about three weeks, and I don’t think my speech therapist was too pleased because I think, even though she’s known me for five minutes, she knows I actually enjoy talking, which she would rather I didn’t have to talk as much as I do. But I like talking to people, I’m interested in people, without being nosey and talking to people is a major part of my job and my day.

So, when I said I’m back at work, she said to me, oh so you’re talking then, I went you’re talking to me now, of course I’m talking but I think in an ideal world, I have to be sensible with that as well and my voice does deteriorate during the day, sometimes I have to break up sentences to complete the sentence. So, that’s one of the scars but the other scar is the physio said, she’s seen this quite often, the people that have had Covid, as bad as me, have what they call drop foot.

So, it’s literally where the foot drops randomly and what I’ve got as well, on my feet is not a pain but it’s a sensation, a tingling feeling on the top of my feet and I don’t know, but when I was bedridden, I think this is common practice, but I was put in these surgical socks…

Paula: Stockings.

Victor: I think it’s helps you not have…

Paula: Strokes.

Victor: …strokes but it was like my feet were clamped and my toes were clamped and that would have been for the entire duration, six, seven, eight weeks.

 

Ten months after coming out of hospital, Pete continued to experience fatigue and brain fog.

Ten months after coming out of hospital, Pete continued to experience fatigue and brain fog.

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Independently you’ve got to, slowly but surely, get yourself back into things and start doing things. I get out, I go and have a drink or maybe do a bit of shopping now and things like that. But it’s probably taken the first…December, January, into probably February before I started even thinking about just going out, so forth. And then I’d sit down and have to rest again. And I’m still probably 80 per cent of the time at home. I don’t want to be but some days I don’t feel as though I could go out and do anything. Even the last two days I’ve been pretty well exhausted, sleeping. I can sleep quite easily, and my wife will say… I’m on a lot of medication.

I’ll just… Yeah, I’ve just put a few things down such as… My kidney function was not working well while I was in hospital. And I suffer with diabetes, so those two things will have an effect on my body. So that was another reason why they wouldn’t send me home. Eventually they gave me something to be able to cope with that situation. The tiredness, like I said, is still there. Brain fog and doing things, you know, and forgetting…set off to do something and forget where you’re going and then have to come back and relay your thoughts to… Yeah, I’ve got to go and do that. That’s a thing that occurs all the time, unfortunately.

Can you say a bit more about the brain fog?

Yeah. I may go in the kitchen even and go to get something and I’ll go in the wrong cupboard or forget why I was going into that cupboard. Right silly things sometimes. And then when you’re going to start to make a conversation and then it completely goes, and you have to sit for quite a while before you could think about it and start explaining yourself again. And it doesn’t make sense, you know, because you think I was fine before all this, you know, where’s it all gone to.

And unfortunately, like, my mother has dementia. And so, it’s been tough while I’ve been like this. I do still go round but my wife has taken over the lead of that and looking after her, due to the fact that, obviously, I can’t get out like I used to. And I suppose the memory thing, the brain fog, it comes and goes, shall we say. It's not there all the time. And I think you’ve got to just reset yourself and be a bit stronger and then you find that you can go ahead and do something.

 

Ann lost about a third of her hair within two months after discharge and itching skin, possibly related to her kidney function. She bought a scarf to cover her head.

Ann lost about a third of her hair within two months after discharge and itching skin, possibly related to her kidney function. She bought a scarf to cover her head.

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I just wanted to say as well – or I forgot to say – is that when I came out of hospital, within two months of coming out, which I found very strange, I lost about a third of my hair, which was, to me, more devastating. Because it’s such a visual thing, your face, isn’t it? So, part of me wouldn’t go out, and then when we did go out, I ordered these scarves that you wear when, you know, more, like, when cancer patients wear scarves if they’ve lost all their hair. But my hair was so thin, and it came out so dramatically, I thought it would never come back again; but thankfully it has. And now I’ve been told that’s all part of Covid as well. Which I found strange that it didn’t happen in the hospital, it wasn’t until I came home, a couple of months after.

Yeah, so there was that. And then I had a really bad, for a couple of days, of itching all over my body, I was constantly scratching myself. When I phoned the doctor, she sort of told me off a little bit, she said because that could be connected to my kidneys. And I said, well, obviously I didn’t know that; because you don’t, you just think all these things, you just think, oh, God, is there another…something else with Covid that’s affecting me at the moment? But thankfully I’ve only had little bouts of scratching since then. But it was to the point where the itching was so bad, I actually bled; and I have got some scars on my legs where the itching was so bad that I really scratched myself quite bad.

Some people, like Caroline, Jo and Ann had become temporarily or permanently disabled during their hospital stay. This meant that they could not do things in the way they had before their admission and depended on others for help. Nahied said: “Covid is not a thing that comes and goes. It always is with you, somehow, in your mind, it’s always there. The effect of the Covid, it takes time to go.” She now uses a wheelchair to help her move whilst recovering from the nerve damage to her foot. “Before I had Covid, I was active, I used to go to Tesco’s, I used to go out, I used to go to my mum’s house, I used to be like more active. But now, all that is stopped. I have to rely on someone before going out, ‘cause now I’m in a wheelchair, I can’t walk long distance. If I have to go to town, I have to ask one of my family members to come with [me].”

People we interviewed continued to experience symptoms long after their discharge. Several still felt fatigued 18 months after their discharge from hospital and were exploring whether this may be classified as long Covid (see also Experiences of long Covid).

For some, their ability to work was impacted. It was hard when even longstanding employers did not inquire about their health.

Emotional echoes of hospitalisation with Covid

For many people we talked to Covid was an additional issue that came on top of and exacerbated pre-existing health problems. Some people experienced other major life events whilst they were ill with Covid or caring for somebody who was; illness or death of one or even more loved ones; divorce; the birth of a grandchild. Inevitably, this impacted people’s recovery, relationships and ability to work. Many who had lost people close to them found it hard to grieve whilst needing or providing care after discharge, especially when public health regulations were still in place.

Some patients and family members were extremely anxious about the possibility of getting re-infected, particularly before the first vaccines became available.

Gerard said he feared having to go back to ICU (Intensive Care Unit) if he were to catch Covid again. In the summer of 2021, he was glad to receive his vaccination to diminish that risk: “Say I caught Covid again, hopefully not, but say I caught it again I would be quite fearful going back [to hospital] because I don’t know if I could cope the second time, if that makes sense. I certainly don’t feel going back in again… That’s why I’ll be glad tomorrow when I get the initial [jab]…because even to stop you going to that level…”.

It was not unusual for people to wonder about what Covid had changed for them and struggled with the grip it seemed to continue to have on them. Many felt that Covid was still hanging over them and struggled to move on. Kate did not want it to define her family. When Geraldine panicked on the way to the dentist, she wondered why this was the case, and tried to convince herself to continue to go places despite her fear of reinfection.

 

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

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

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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.

 

Geraldine reflected on how Covid had “changed everything” for her. Since her admission she struggles to go out spontaneously.

Geraldine reflected on how Covid had “changed everything” for her. Since her admission she struggles to go out spontaneously.

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So, I was panicking. I don’t know for some reason I was panicking to go to this place, even though I used to be in [place]. I used to work with children in [place]. But I was thinking to myself why am I panicking? There’s nothing to panic… You can go there, you’ve got a freedom pass, you can…you know you don’t have to…it’s easy to get on the bus, it’ll take you to the destination. And I was hesitating. It’s like two days prior to that I want to go there, between Wednesday and Thursday, I think, the weather wasn’t too bad then. A little bit of rain but I could have taken an umbrella. But then I didn’t want to go. For some reason I didn’t want to go.

So, then I thought to myself, why don’t I go on Saturday. This is what I’m doing now. I don’t do it at least spontaneously. So, it's like hesitating to go out and then…this never happened before Covid. Mind you, I just normally get dressed, when my daughter was alive, I just get her dressed up and then we’d just go out. But after Covid things are different. Everything is different. Food is different. Food, when it comes to food, I eat it because I…I have to force myself to eat the food, which I want to stop having hypos.

So, I need to do everything like testing blood and whether sugar is up or down. And then, you know, just carry on with normal things. So, everything is different. What I feel, you know, what I feel, what I think, how I behave is different. How I, you know…doing things…everything is, sort of, not like how it was before. Nothing is [inaudible] nowadays. No, I have to think before I do anything. Even watching TV, only the TV.

Why do you think that is? Why is it all so different?

I have no idea. It’s like I’m a different person. It’s like I’ve changed in somewhat. I don’t know how. How could I change? This is me and I used to just talk to myself. I just opened the mouth and asked myself what am I doing? Why am I thinking like that? You were not like this before. You know, it’s like I’m telling…it can’t be Covid, can it? Because things are… But I find I’m a bit different. A little bit different, maybe not in a big, big way. I’m not a person who will go and talk with people or knocking on my neighbour’s doors or anything. I’m in my little flat, I’m, you know, thinking to myself you can do things. So, the time has come now for me to take charge of my life. I cannot be living in my past or past gone before. And, you know, this is your future, you come out of this Covid, you are recovered, you are recovering.

I came a very long way, now I think about it. Survived the Covid and I kept myself to myself, only went out when I had an appointment like a blood test and things like that. And then to get a bit of shopping on the net or outside, just for the exercise, went out, bring home a bag of food and then just stayed indoors.

Of course, and then I found out they are telling on the BBC, variant, Delta variant. And I thought to myself, my God, I have to be extremely careful because I know you can get Covid again. It’s not safe. It really is not safe to go out. But then I thought to myself no, don’t think like that. You wear your stupid mask and go out. You are protected, you’ve got your vacc… And then of course I had my two vaccines by then.

Several found seeing images and hearing sounds of the ICU on TV could be unpleasant reminders of their time in hospital. Emma said: “I can’t even watch [anything on Covid] on the telly …if anything comes on showing people on a ventilator, I either change the channel or pick up my phone or walk away and do something else.” Chris told us: “Some things that…if I see stuff on the telly, that can upset me still. If I…I watched a programme, I don’t know why I watched a programme on Covid onwards, and seeing what the people are going through, knowing that I’ve been through that, that still sort of upsets me a bit.”

Several people told their story through various channels to help others, and to make others aware of the risks of Covid.

 

Laszlo told his story many times to increase awareness of the risks of Covid.

Laszlo told his story many times to increase awareness of the risks of Covid.

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I said to myself, when I was, as everyone else, I was asking myself question, why is this happening to me? Why me? I’m young, relatively young, healthy, I have no pre-existing medical conditions. Why I ended up in such a dramatic state. And couple of years ago I read a book in which the author says the, a very important thing which I’m remembering very vividly, namely that when something bad is happening with good people the question that you should ask is not why it is happening to me but the question you should ask is now that this happened, what am I going to do about it? And I said to myself, I’m not going to anchor myself into this horrific experience but I’m going to see in this whole thing. And I said, if my story can be an inspiration to other people, if my story can be a warning to other people, then I’m going to use it as often as possible.

So, I said to myself, I’m going I’m going to go on social media. I’m going to respond to all enquiries from television, radio, newspapers, whoever would like to hear my story.

I’m going to speak on conferences. I’m going to speak or anywhere that they will invite me simply because I felt that so many people, first of all, need a lot of hope because especially in the second and third wave we have seen with the high number and, unfortunately, within my family and circle of friends I had a lot of people not surviving this pandemic. And sharing the kind of hope, sharing the kind of willingness to carry on was so good with a lot of people and on the other hand, telling people my story in a way to express the kind of warning that if this could have if this could happen to me, it could happen to you so take all the precautions. So, when we had only the face mask and the social distancing and washing our hands, I’d been telling people that by wearing a mask don’t look at yourself as a as a victim. Look at yourself as a hero because what is common in heroes, most of them are wearing a mask and they save lives, and this is exactly what you would do when you put on the mask. Maybe without knowing, you save a life or two or may hundreds of lives, or you can make a big, big change in a lot of people’s life by avoiding a possible transmission.

I’ve done the same thing when the vaccines become available. I was backing up this campaign and one of my social media posts was, for example, showing a picture of me back in April 2020 with an oxygen mask on my face and I put the inscription, this was six days after I was tested positive with Covid-19 and another picture from January 2021 completely healthy and smiling and I said, this is six days after I got my vaccine. So, I was I was trying to promote this message that this is the way out of this pandemic by adhering to these measures, by taking the vaccine and this is not just for our own benefit, but we have the kind of social responsibility for others. And it was it was so good to hear a lot of positive feedback from people, from people that I know or even don’t know telling me that, “I’ve took the vaccine because of you.” “I took things more seriously because I’ve heard your story.” And when I when I started receiving this kind of feedbacks, I thought to myself that, and this might sound very weird, that I’m kind of like thankful that I went through this experience. I feel lucky and blessed that I’m alive and still I have a story to tell, and I can make a difference in a lot of people’s life. And looking to this whole experience like this, it’s it just it just puts a smile on my face. I’m not sad. I’m not depressed. I don’t have flashbacks.

I’m not suffering of PTSD. It just makes me happy that through this horrible experience I was able to make a change not only in my own life but hopefully, in hundreds of other people’s lives as well.

Emotional impacts on family members

In the weeks and months after discharge, it gradually became clear to those who had been in hospital what their family members had gone through. Family members tried to come to terms with the emotional and physical changes that would perhaps become permanent.

 

Paul felt anguish at the thought of what his family went through, and that his son could have lost his father.

Paul felt anguish at the thought of what his family went through, and that his son could have lost his father.

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So, looking back what would you say is the hardest thing for you?

Oh, well, I think about death a lot, and I’ve been doing that about two or three weeks running up to yesterday being the first anniversary. I think about what would have happened. I shouldn’t put myself through this, but what would have happened, what my wife and my son… Because I spend a lot of time with my son, going to football with him, I go camping with him. He’s now 13. We haven’t went for the last two years. But I think he was about one or nearly two when he first slept under canvas in a tent, and we’ve been going every year since. He loves the outdoors, and I thought who’s going to take him to the football, who’s going to take him to see Hibs, who’s going to take him camping, who’s going to buy him his first pint? Dads are meant to do that, and I might not have been there. I think about that and I torture myself that. I shouldn’t. Maybe that’s still a bit of negativity in me. But I do a lot of thinking, what could have happened. But it’s great to still be here. We’re looking forward to hopefully we’ll get a summer holiday later this year. We normally go to Greece, Kefalonia, that’s a small island in Greece. We’ve went about 19 times now. So we’re looking forward to going back there.

Throughout telling me your story you’ve used the word traumatic a number of times. Would you say it’s been really quite traumatic for you then?

Aye, it’s been traumatic for me. I sometimes think it’s bene more traumatic for my wife having to live through it. I’ve got an excuse, I was in a coma, I don’t remember anything. But she had to. Every time the phone rang at home there’s a split second saying am I going to lift this phone and Paul’s dead, and she’s going to have to explain to my son. So, I sometimes think yes, the person who’s got Covid is in a traumatic situation in ICU, but the family can suffer just as much, maybe physically and mentally.

 

Peter’s hospitalisation took an emotional toll on Stephanie. She needed time to come to terms with ‘losing the old Peter’ and their life together as it was.

Peter’s hospitalisation took an emotional toll on Stephanie. She needed time to come to terms with ‘losing the old Peter’ and their life together as it was.

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I think even after he came home it was, felt like Peter psychologically, I mean I’d read about all the psychological effects, after effects that Covid can have on patients so I was sort of like expecting him to be, you know, quite down and depressed and frustrated I think and angry but he hasn’t been he’s been absolutely fabulous, you know, he’s just taken everything in his stride. But me, who is normally a really tough cookie and so emotionally and mentally stable, I was just a mess and I was almost, I almost had sort of what I would probably compare to a post-traumatic stress disorder, after I would cry at anything, you know, as soon as I saw anything on television that was anything to do with Covid I’d start crying and sometimes I’d just look at Peter and cry and that is not me, you know, I’m normally so tough but it absolutely destroyed me really but I’m, I’m getting better now but I’m still quite emotional about the whole thing. Because, you know, in a way I mean I know although there’s no guarantee I’m hoping that I will get the old Peter back at some stage in terms of, you know, I mean he’s back with me mentally and physically, you know, as well and but they didn’t guarantee us that I’ve accepted that I’m just, you know, we’re both just hope that in time he will be as strong as he used to be able to do the things he used to be able to do. But it’s also been a sort of a bit of a breathing process for me losing the old Peter and everything that our life was together because obviously the things, our life now is more [inaudible] than it used to be, you know, in many ways, I mean just things like, you know, people were saying to us oh are you gonna go for a honeymoon and we weren’t particularly avid holiday makers anyway but never the less, you know, I don’t think Peter at this stage could manage to go on holiday because, you know, he just gets tired easily and, you know, breathless and I think it would be too much, so it’s just little things like that, you know.

For some family members, it was not until the intensity of providing everyday care eased that the emotional consequences of how Covid had changed their lives could be felt.

 

Mike became depressed when his wife regained her independence, for it was then that he felt the loss of his job and care responsibilities.

Mike became depressed when his wife regained her independence, for it was then that he felt the loss of his job and care responsibilities.

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And after about, I suppose, four months, she needed less of my support and, you know, I had a goal in my mind to give her, her independence as quickly as possible and, you know, I wanted her to do whatever she wanted to do for herself, but then it left a void for me. Because suddenly after all these months of intense worrying about whether she was going to live or die and then months of intense care of looking after her, and then suddenly she was able to do things for herself. And that left a void in my mind, and I became very depressed, you know. It was like all the air going out of a balloon, I guess, you could say. And of course, I’d given up work, I decided to retire early. You know, it wasn’t the right time, but I decided to because financially we lost so much the previous year, it was very difficult. We lost everything and I couldn’t get any support because I was a limited company. So, there was no furlough or anything. But anyway. But I was very depressed for about six to eight weeks.

I didn’t speak to the doctor or anything, but I found it very difficult within myself now that I suddenly had some time to myself. I was lost. And then I became angry and frustrated with people because I felt that we got through this Covid and, you know, we survived it, but I felt that people around us were becoming lackadaisical with it all again and not focusing on the problem of the ill-; Because in my mind, I knew it would never go away because I knew... Because it’s a virus, it’s always going to mutate. I know that much, you know, and it would always be a threat for years to come until medication can deal with it, you know, like we do the flu now.

And I just get... I was getting angry with my children the grandchildren and they were just sort of... It’s like nothing had happened, you know. I always felt people were behaving as nothing had happened, you know, and I couldn’t cope with it. I couldn’t cope with it because I’d put so much in to, you know, trying to get Veronica back and other people were getting on with their lives and I couldn’t. I couldn’t do it.

You know, it was really, really hard. And I still feel like it today quite a lot. It’s intense inside me. I worry about it every day and I see people out on the streets and in shops and no one’s got a mask on, or no one puts any gel on their hands when they enter a premises or anything and I just feel so angry, you know. I don’t want to feel like that because I’m not an angry person. My strength is for being so placid and calm, you know, but this has changed me completely.

Changed relationships

The experience of being in intensive care with Covid, as well as the physical and mental effects it had on patients impacted relationships between partners, within families, and with friends and colleagues.

 

Pete found that he was unable to do what he used to do before his ICU admission. As he was at home more often, he did more around the house.

Pete found that he was unable to do what he used to do before his ICU admission. As he was at home more often, he did more around the house.

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Do you feel like Covid has affected the way you look at yourself or you think about yourself?

Sadly, yes. It’s made a different level to my situation. One, I think you try to live as you did before but it’s in a totally different way. You have to do things totally differently and respect your body a bit more. But also find out that you can’t do what you used to be able to do. So, it changes that reflection on life. Find things to do, i.e. I’m reading a book about Ranulph Fiennes, an explorer. I don’t know if you’ve heard about him. No? Well, he crossed the Antarctic on more than one occasion, on several occasions, in different formats. People like that can give you a bit of inspiration, you know.

You realise that you have to get up and carry on, is the important thing. My wife’s good for that. I can always honestly say that you know… We’re very much still in love and she’s been excellent all the way through. But we help one another as well and I tend to do a lot more in house than I did before, because I’m more confined to the house situation, rather than being out and about. So that is an important one. You do have to change your attitude towards it.

People we spoke to were grateful for what their family had done for them; some felt that the experience had strengthened them as a family; others felt reassured in their love for one another and closer than before.

 

Jenny’s admission to ICU with Covid has brought her and her husband closer together.

Jenny’s admission to ICU with Covid has brought her and her husband closer together.

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Has Covid affected your perceptions of yourself?

When I was in hospital, my husband and I both said that things were going to change. And they did for a while. Things like helping the kids out with money, which we wouldn’t normally have done, which we have done. [Husband] said, we don’t need the money…well, we do obviously but he said, you know, they need it. So, we helped each one of them out a bit.

And I think…well, I know it brought me and my husband a lot closer. I mean, we’ve been together 47 years and we spoke about things that we’ve never talked about before. I can’t even remember now what it was, but I know…yeah, it has changed us, definitely. Yeah, that’s because of that near-death experience and my husband thought he was going to lose me. I mean, we’ve been married 44 years, so it’s a long time.

That is a long time, yeah.

Yeah. And yeah, it’s definitely brought us closer together. And things that should have been said a long time ago that weren’t said that we’ve talked about. Yeah, so it has changed us. For the better, I don’t know. Hopefully. Yeah, I’m sure it has. Yeah.

 

Chris felt understood by his family members who have had similar experiences; they are now closer as a family.

Chris felt understood by his family members who have had similar experiences; they are now closer as a family.

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We definitely as a family appreciate family more now, because that’s the thing, you never know when you could lose them. The fact that my mum and dad would ring every day to check up, then they’d have to tell my sister, even…even at work we had…we had to put a sign up saying that we were ill in hospital. My dad had to go over one day and put a sign up. We received so many emails from well-wishers, that some customers that even phoned my dad’s mobile that they had, just to say we hope you’ll get better. Yeah, just as a family we all appreciate each other more. The fact my brother was in hospital as well, we can talk about certain bits about the hospital together. He wasn’t in intensive care, so I’ve got my granddad I can…we talk to each other about that, and bits that he remembers, bits he doesn’t remember, but I can tell him I remember all of it except for two days when I was sedated. He was telling me he doesn’t remember being taken into intensive care, but he remembers being there.

So, in a way it’s good that I can talk to him about that, and my brother about what goes on, on the wards, because he understands that. And then to talk to my mum and dad and understand what they went through, not knowing what was happening. And the same with my sister again, just getting small updates, not knowing how bad…well, how bad it was, yeah, it’s just, yeah, it’s just the whole effect it had on the whole family, not just me; what they must have been going through knowing that both their sons, and my mum knowing her dad was in hospital with it, just makes us all appreciate each other a bit more.

Some said their relationship had changed, and was now more difficult due to feelings of guilt, depression, fear and anger or different views about Covid. One man found that the experience had increased feelings of separation and isolation that they had felt before the ICU episode.

 

Zoe felt guilty about what her admission has meant for her family, that she felt had been changed by Covid forever.

Zoe felt guilty about what her admission has meant for her family, that she felt had been changed by Covid forever.

Age at interview: 46
Sex: Female
Age at diagnosis: 45
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You mentioned before that you feel guilty that this affects the whole family, is that something…?

Yeah, I think it’s definitely something that’s stayed with me. I feel like, without meaning, I kind of dragged them on a horrible journey, and I know that I didn’t do anything to cause it, but I still feel like they were massively affected by it. But, I mean, I think a year on, everybody has a better understanding and they’ve been very understanding with me. But I definitely think that it’s touched our family in a way that’s sort of changed it forever. But not any more so than, you know, if my husband was suddenly diagnosed with something, or something else happened, but I think Covid was a different kind of journey, because it was dramatic, because it was in the press so much, because it was so unknown, I guess it’s different than something like maybe a cancer journey or another type of journey where maybe the family would have had support and understood more. Even the people that were looking after me didn’t understand. So, I think it was just a very unknown journey, but I definitely feel guilty, but sometimes I feel like it’s kind of a wasted emotion, because I can’t change anything about what happened.

 

The different beliefs Tom and his wife held about Covid put additional strain on their marriage.

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The different beliefs Tom and his wife held about Covid put additional strain on their marriage.

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And then after that it’s been difficult, I have to confess, it’s been really, really hard. Probably our marriage wasn’t in the best of states before it, and it’s hanging on by a thread. And I think the lockdown hasn’t helped. For me I’ve just been hanging it out as long as I could because your outlook on life, my outlook on life is a lot different to what it was a year ago. I appreciate a lot more things. I used to work flat out, non-stop, and I’m not doing so much of that now. And you realise, though you can provide for your family you’re missing out on lots of other things and not taking notice of things. Whether our marriage will survive or not I don’t know. It probably looks like it won’t, but that side of it has been quite tough when you feel very weak and you’re trying to hold everything together at the same time, [work] and everything, it’s basically, you have to dig deep.

It’s quite weird when you’ve got somebody who’s so close to somebody who nearly died, she’s not really a believer in Covid. She doesn’t want the vaccine; she doesn’t believe it’s any more than flu. That bit of it is quite disturbing in a way. But what do you do? It’s this year that I feel like I’ve got the strength to do whatever I have to do; whereas last year I didn’t really, I just wanted to see 2020 gone and then deal with everything.

But I think a lot of her thing is she really struggles to be locked up. You can see somebody in their state. I’m kind of you’ve got to do what you’ve got to do, and it’s only a few more months and then things might be back to normal, or somewhere a bit more normality. And I’m busy trying to keep a business going and keep things going and it is a different way of life.

But for her it’s really, really, I can see it in her, it’s really, really difficult. Yeah, it’s really, really difficult and that’s quite sad.

I think there are going to be loads and loads of people that at the end of all this are probably going to be quite affected by it, not by Covid but literally by what’s happened. But in me I just make the best of whatever is in front of me really, so I don’t really worry about it, but other people it is very, very taxing on them. We’ll just have to see how it goes really, but I’m prepared for whatever now, so what will be will be.

 

The feeling that he needs to protect his wife has changed Mike’s demeanour and their relationship.

The feeling that he needs to protect his wife has changed Mike’s demeanour and their relationship.

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I’m trying to protect her. We’ll see. Now we’ve got the dilemma of Christmas now. Last year was a disaster obviously. Well, it was for everybody. Nobody could see anybody. We’re back here again with Omicron threatening. We’ve agreed that some children can come on Boxing Day, but they all must be tested before they come. I don’t know what else you can do, really, but I will still be under threat. I should feel vulnerable, you know, and I don’t like being vulnerable. It’s not me. So, I just feel... I think in many ways I worry that because I’m so protective of her and the way I put things across to people comes a little bit stronger than people are used to. You know, they used to, I’ll accept anything, you know, what is, what is, but now I’m a little bit more forceful and I don’t like it. I don’t like being like it. I think everybody should be free to make their own opinions and do what they want, you know, but I’m having to make rules and I don’t like it.

I don’t know if I’ll ever get over it. I honestly don’t. Anyway, we are where we are today. Whether I... I don’t know. I don’t think I’ll ever get over it because in my mind, there’s the thought that I might have to go through all that again, and I don’t want to, and I don’t think I will allow myself. That’s how I feel.

And would you say it’s affected your relationship to your wife?

Yes. Things are not the same. We still love each other intensely. There’s no denying that, but there’s a big barrier there and it’s Covid. I have to say it is. We’re both scared. We’re both scared. There’s no doubt about it. You know, you can’t... You can say man up and grow a pair or whatever you want to say, but I’m afraid most people who say that haven’t been visited by those feelings yet or that experience. They haven’t had it, you know.

And what does it mean practically when you’re both scared?

Well, you don’t feel free, you know, to express or do things that you would normally do or go places you would... Everything’s got a padlock on it, and you’ve got to unpick it before you go.

Some people sought support to help them deal with the relationship tensions that arose following their return from hospital.

 

Steven and his wife sought out the help of a psychologist after his stroke.

Steven and his wife sought out the help of a psychologist after his stroke.

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I think the emotional effect on the family was intense. And in a way that is ignored; they were not offered any support. And again, [name charity] was the only person who offered them any support. [name charity] set up just a very simple online chat group of relatives, partners and relatives of people who had suffered these strokes, and I know a lot of people felt it was very helpful. I haven’t asked detailed questions because I think that’s inappropriate, but I know a lot of people found it tremendously helpful. But they received, other than that, no help, yet they were the ones, they were quite often the principal carers, they were having to deal with the shock of having a close family member very ill, then being told in some cases their husband may well die, then being told actually he’s all right but he’s not really all right.

And also, I think it was the fact that nobody sat down with them – I’m not saying they should have done – but nobody sat down and said, this is what’s wrong with your husband or this is what’s wrong with your wife. And so they’ve had to find out for themselves what’s wrong. And there’s no real help to say, look, this is normal or… [Inaudible] So, that has created, certainly with me and my wife, tensions. Again because I don’t look different, so I might be saying something and my wife will be saying, but hold on a minute, you never used to deal with things like that. And I’m thinking, I’m not doing anything different. It takes an awful lot of effort to work out whether I’m doing things differently because of the strokes, I’m doing things differently because I’m at home and not at work, I’m doing things differently because I’m not hearing things in the same way. And in fact in our case we have hired a psychologist to work with us privately to try and get through some of these issues because they’re very difficult.

Coming to terms with what happened

Many spoke with their partner and (to a lesser extent) their children about what had happened to them.

 

Peter initially did not want to know what happened. When he did, Stephanie told him over time.

Peter initially did not want to know what happened. When he did, Stephanie told him over time.

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Stephanie: But I remember also as well when you’re sort of asking Peter how, how he felt afterwards I can remember saying to him after he’d regained consciousness I’m not really gonna tell you anything about what’s happened to you yet but when you come home I’ll tell you everything in minute detail and at the time he said I don’t really think I want to know but since then I’ve told him, I said I’d tell him in little bits and since then you know everything now don’t you?

Peter: More or less, yeah

Stephanie: He knows almost everything now but at the time when, when he first came home from hospital, I think he, he just didn’t, he didn’t want to know what had happened

Peter: I think that was a time when I was just glad to be alive I didn’t want to be taken back with all the nitty gritty details I just wanted to start moving on, you know, that had gone, stuff it, that had gone I don’t want to know about that I just want to know what’s coming tomorrow and the day after, but then since, since I was getting better you know, I, told me little bits, bits and bobs, now I think I know everything.

Stephanie: I think you needed to understand what …

Peter: Yeah it’s like, like a learning curve, like a new born baby it’s like, you know, you’re just growing again and learning [cutting out] I mean in your life I see [cutting out]

And did you want to know at any point, or did it just happen?

Peter: Sorry?

Did you want to know at any point?

Peter: Oh yeah I definitely wanted to know more and more and more [cutting out] to know what Steph ’s… really definitely [cutting out] you know, because I can think, well I was in hospital [cutting out] and she was on her own for five months, you know, but then to know what I went through I can appreciate what she went through and it’s important I think to talk about these things and find out where everybody was at that particular time, you know, it’s like it was just a simple fact that you needed, or I needed to know where Steph was when I was going through and… me going through that although I can’t remember much apart from these bloody dreams [laughter] yes.

 

Victor spoke to Paula about what had happened, but it was little moments that brought it all home to him.

Victor spoke to Paula about what had happened, but it was little moments that brought it all home to him.

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Victor: The biggest aspect of being made aware of what I went through was, as I said earlier, since I’ve been home Paula has drip-fed me information of what I actually went through. Some of it shocked me. And I said...

Paula: Yeah, we did it over a period of time. Didn’t do it all in one hit.

Victor: It wasn’t as soon as I got home. It may have been two, three, maybe four weeks later, you know.

So what did that look like? You sat down...

Victor: Well, it’s just like moments of...I mean, since...

Paula: Well sometimes it would be while we were watching football. And something would come up and then we’d talk him through it. He’d sit and go oh, I can’t believe that, can’t believe that. And you’ve had a few little emotional moments, haven’t you?

Victor: That’s...yeah, we...

Paula: Saturday, was it? Last Saturday...

Victor: Last Sunday.

Paula: Last Sunday, sorry, was the first time Vic and Rob [son] had been back to football.

Victor: Oh this...this is what happens, right. Have you ever been in the Olympic stadium? Right, it’s quite a nice stadium. At either end are these massive video screens. And our football team, West Ham, we play there, right? And what the club does, at the last home game of every season they put a montage and they play sombre music. They put a montage up of all the supporters that have passed away during the past year. Quite often big pictures, not little mosaics, big pictures. And it’s very, very nicely done but it’s incredibly sad. It’s incredibly sad and when they started playing this, I thought I could have been on that. And I looked at Rob, he’s in tears and then we both broke down, a couple of times that day.

But we had a fantastic day. That day was great because Rob felt he was never, ever going to go to football with his dad, ever again. And we had pre-match socialising to do with friends, with lunch, and then we had post-match, with other friends. And the whole day was fantastic. But at various stages of the day, I broke down, on more than one occasion. Just silly little things.

Paula: But I think that’s when it’s, sort of, it’s really hit home to him.

Several people received a ‘patient discharge summary’ or ‘diary’ when they were on the general ward, after discharge, or sometimes months later. This document outlined the reason for admission, the treatments and developments during the hospital stay. These diaries are designed to help patients recall and make sense of what happened, and to help distinguish what was real from things people experienced in their hallucinations.

Several people told us that they found these diaries very helpful in that they filled in gaps in their memory. Unfortunately, as standard ways of working on ICU had to be altered, such diaries were not kept for all patients. Those who did not receive them had to rely on the memories of those who had been in touch with the clinical teams. For some patient’s notes could do some similar work.

Chris said: “After I left intensive care and I was put down on the ward. The team from intensive care brought down some discharge notes. On that it stated what they did to me every day, what treatments I had, even what symptoms I had. What they gave me and when, what I was currently taking... It probably helped [me] understand what happened to me”.

 

Reading the clinical notes made Paul realise how ill he had been, and to fill in gaps in what he remembered.

Reading the clinical notes made Paul realise how ill he had been, and to fill in gaps in what he remembered.

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When you left the hospital or when you were discharged from the ward did, they give you any summaries of your clinical notes?

Yeah. It wasn’t for a couple of months after that someone got in touch with me, seen how I was doing, and she asked me if it would be useful did I want to know what actually happened to me in hospital. It was like a small diary of what happened. I said, oh, I’d love to, because I need to fill in the gaps. I need to find out what happened on one particular day. Because my wife never kept one, and she sometimes can’t remember on what day this happened or what day that happened. So the critical care nurse sent out something to me and I read it and I thought wow. I knew I was seriously ill, but it put it into a bit more perspective. I could see on what day, and they gave me a note of what medicines I had and what machines I was on and how I responded to the machines and who was taking care of me and stuff like that, which I thought was a good idea because it helped me fill in some gaps.

The gaps are difficult, I understand.

Yes. Aye. There’s a lot of blank spaces. And it goes some way to helping understand what happened.

 

In the absence of a patient diary, Michael relies on his sister’s memories to account for the 11 days he does not recall.

In the absence of a patient diary, Michael relies on his sister’s memories to account for the 11 days he does not recall.

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So, your sister was in contact with the ICU staff at the time?

She was. Yes. Now unfortunately I know they do diaries in the ICU, they weren’t able to send me my diary, so I haven’t got any more kind of…from my understanding it is quite detailed and [inaudible] focused and things. I haven’t had that.

Do you know why they weren’t able to give it to you?

At the time I spoke on the phone they said something about hygiene, something, I think it was paper based and they were reluctant to send out something paper based in case of the – they would have contamination.

So, is it likely you might get it at a later stage?

I don’t know. I suppose under normal circumstances I would have got it, but because everything is so up in the air now, I’m not really holding out much hope. It would be good if I could get it.

What would it do for you to read it?

I think it would…as I said, I’ve got those maybe 11 days or so which I’m partly aware of but I’m not aware of. So really, it’s a case of me at the moment just having to rely on my sister’s memories. So, it’s almost like that period of my life is still very much unaccounted for.

 

Caroline did not receive a patient diary, but going through the hospital notes made her realise what medical decisions had been made. It made her realise just how ill she had been.

Caroline did not receive a patient diary, but going through the hospital notes made her realise what medical decisions had been made. It made her realise just how ill she had been.

Age at interview: 58
Sex: Female
Age at diagnosis: 57
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Oh, and I’ve also got my hospital notes now and I’ve gone right through all of those. And that’s been really helpful. I was a bit…I was hoping to go through them at the hospital with somebody, but of course Covid, wasn’t possible. And unfortunately, they didn’t keep a diary, a patient diary. They usually do, but because of Covid, they were so stretched they didn’t keep one. And that I really do regret because I think that would have helped me hugely.

What would be in those diaries?

It’s patient…a nurse really writing about what the patient has done and how the patient has been that day. So Michael Rosen’s got one and he’s putting out a book based on it. And the nurses basically write the times you did the first thing. So they might write, yeah, you breathed on your own for an hour today, or you were very upset about this today. And it’s like a diary that you might keep. It’s a bit like the blog I keep really of big moments and it would have been nice to have that.

Going through the notes was difficult in many ways because they’re so jumbled. So you get all the nurses’ notes together and all the doctors’ notes together, it’s all on computer file, and all the…what other notes, all the notes from the ward from the nurses and then all the hospital tests together. So you have to sort of merge all of those. And then a lot of them are scanned in reverse order because clearly, obviously they put the latest one on top. And then they’re split between the computer files as well, so file one will end halfway through one set of notes and then the next bit might be in file two.

So I made a sort of timeline of it and that really helped me and really brought home to me how ill I was, you know. Seeing that I was put on a DNAR on my second day and it would have been the first day but they hadn’t had chance to discuss it with my husband. And seeing the doctors writing, I think this poor woman is likely to lose all four limbs, if she survives. And it is looking very unlikely or the future looks very bleak, this patient will probably not survive, you know, in complete organ failure. That’s…yeah, that’s quite a shock. But it was good because it did give me a timeline. It also showed me that I was having conversations with people and meeting people that I have no recollection of whatsoever. And that was quite difficult.

The DNAR, is that something that you still have now or…?

No, it’s a…

That’s been undone?

Do not attempt resuscitation and it was removed…they said initially it would be on me for the entire of my stay in hospital, which shows that they didn’t expect me to survive. But when I moved up to the ward, that was when it was rescinded.

I was shocked by some of the numbers though, things like my white blood count. I had to go and look up all the ranges and seeing how high my white blood count was and how low my platelets were, that was…you know, when I saw what the normal range was, it was, oh, wow, I really was ill, wasn’t I. And I knew I was, but it really brought it home.

A return to some sort of normality?

Some people had a changed outlook on life. Peter said he was now much more mild-mannered than he had been before his admission, as he realised: “what’s important in life and it’s not about how fast you can muck it out or how fast you can groom a horse or, you know, what’s important is love and relationships and people helping and supporting each other and, you know, yeah okay if it takes you an hour longer to muck out the stables then does it really matter.”

Moments when things resembled some sort of normality again could go on to become cherished memories.

 

Victor cherishes the memory of when he and Paula went to a friend’s house when the visiting restrictions lifted.

Victor cherishes the memory of when he and Paula went to a friend’s house when the visiting restrictions lifted.

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Victor: I’m back in the game. We’ve got this lovely photograph, on the phone. I tried to get it printed up, but it... This was one of the best days of my life. It was when I was well enough to go out and it was...some of the Covid restrictions had been lifted...

Paula: Yeah.

Victor: ...which enabled us to accept the invitation from friends to go round and have a cup of tea and a cream cake, right? But what was nice was putting nice clothes back on again, rather than just sit around like this or with a scruffy tracksuit on. But that’s...I tried to get that printed up but it didn’t come out very well. It looks good on the phone. That’s as we were about to leave. We were only going round our friends’ for two hours. We ended up round there five or six. And that’s...that day, there, just being smart again. And compared to a couple of weeks previous to that I look a million dollars, compared to what I looked like. That’s a nice memory, a really nice memory. Yeah.

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