Experiences of Covid-19 and Intensive Care

I think it was on the 4th of May [2020] they moved me from ICU into a normal ward, recovery ward where there were three other guys in that ward with me and again, everyone was very, very sort of Covid aware. So, you’d see a nurse come to see you, visit you at your bed and once they’d finished with you, they would then strip off all their PPE gear, all their aprons, chuck it all away and put a whole new set on to go and do the next guy so you could just see the difficulty they’ve got in doing their job. It just seems like they’re wrapped up in new processes to enable them to do their job but, yes, you’ve got nothing much else to do obviously when you’re sat there but observe the nurses and try and talk to them and all that sort of stuff.

Then by the time I got to come out of ICU, and they put me into a separate room I was still being treated by people by the nurses wearing so much extra PPE that it was, I honestly, because I didn't know how severe my Covid was. They were still, where they were coming in like hazmat suits.

Yeah exactly, and like it probably makes the situation seem a lot scarier.

It did, it honestly did because I, all I wanted to do was basically go home. But they, I wasn't even allowed to move, to breathe, and in my head, I would just think that I can just get off the bed and just start walking and go. Go inside, go to the reception and sign myself out, discharge myself and go home. But every time I tried to move, I couldn't. And when it when it got slightly better, when they were coming in with not as much PPE Hazmat suit type thing, it got slightly lighter.

The funny thing is, when I came home, which was really…there were a couple of things that happened was, when I was in intensive care and my stay downstairs, because they keep, these nurses keep coming up throughout the night taking blood and measuring stuff. And, obviously, at times I would drop off to sleep and then, you know, you’ve obviously got somebody, you can feel somebody’s presence. So, a couple of times I’ve woken up and you’ve just got somebody with a mask or a face shield right next to you, and I just jumped out of my skin every time, which was quite funny because I caught them unawares, as well. I’m jumping, they’re jumping and they’d have to say, sorry, have you just woken up, and there’s somebody leaning right next to you.

And so, when I came home, for about a week I had some dreams, when I was waking up in my own bed at home. And I’m thinking… so, you’re in that drowsy, trying to figure out, where am I, and I remember thinking, blimey, I’ve got somebody really close to me, right next to me. I’m thinking, that’s a bit close, but it was my wife. And then, you realise, blimey, I’m at home. So, just in 20 days it just all got a little bit twisted where, you know, trying to work out the reality of where I actually was.

I remember the door in the ICU, the poor nurses coming in there and having to put all their extra clothing on, and if they’d forgotten something they’d have to go out, take all their stuff off, wash their hands, go out, pick it up, come back, ten seconds later put all the stuff back on. I think this is the thing with Covid is the fact that you don’t have hardly any human contact, and I think that’s something that’s quite hard when you’re a patient. Because nobody really wants to be near you, and you’ve got no family can see you. It’s amazing probably how much difference that makes I think. It’s just really, really lonely. If you’re like me who’s somebody who’s very sociable and stuff it was really, really difficult. At the same time you're so confused that you don’t really say to anybody, this is what I would like, or anything like that. I’d never really spent any time in hospital before, so I didn’t really know what was right and what was wrong or anything; I just took each day as it came really.

But you’re absolutely craving…the trip down to the CT scan was like a holiday, like seeing the outside world and other people and it was amazing. It sounds really silly, but it was just incredible to chat to the porter on the way down, even though I was talking absolutely ludicrous things to him, he probably thought I was a complete fruitcake because I was hallucinating about loads of different things. I think I said to him I was designing parts of the hospital and things like that. Your brain goes just mad.

Then a lady on the other side, she said to me, you alright, and we just started chatting. Not chatting chatting, but she was like, you alright, my love, they won’t be long, they’ll be coming in. And I still couldn’t speak properly, but was like, thank you. She just smiled at me, and she was just really nice, whereas when you’re on ITU, I was literally looking at a door, and like I said to you, I had people around me, but I couldn’t see anyone, I didn’t know who was around me. On this ward, I had four other people around me, one of them absolutely crackers, and the others just a couple, older, and then the lady in front of me, but yeah, just…it was human contact. I hadn’t had any of that apart from nurses that you can just see their eyes, which is horrible, really horrible, because you can’t even see the expressions. You couldn’t…you wouldn’t know who anyone was, you couldn’t…you can’t see a face and all I wanted was somebody to touch me in a…not in a sexual way, please…that’s made that sound really wrong, I don’t mean it…I just wanted someone to…I’d have killed for a cuddle, anyone, I just… I would have killed for a cuddle.

But just someone to put their hand on you and just sort of go, are you alright, darling, like that nurse did. I think it might even have been that night, actually, she just came in, and I cried, and she just held my hand. Oh, it was amazing, because you can’t…you know, they’re too busy putting on all their PPE and just having their visors on with your masks on and your gloves on and your…and even though she had her gloves on, it just felt human. It felt really nice, and that’s something with Covid that you don’t…because normally people touch you, everyone’s so scared of touching, and you’re labelled Covid, so people literally stay away from you a lot more. And you don’t realise how much you need human contact, yeah, yeah.

Can I ask one more professional question? So how did you see that patients were more delirious when family is absent? Does that make a difference to the degree to which patients are delirious?

I think the length of delirium and, for sure, and was more intense. And lasted longer. It's hard because it Covid is so complex and. Put that and also covered patients were with us for so much longer. I'm in trajectory was four to six weeks, whereas in an average length of stay is less than you know four to 10 days you know and so clearly they were going to get delirious just by default. But the severity and the duration. There's much, much more intense. So, when families could come in, you could see a change in the patient.

I was very much a champion of enabling families to visit because, they in themselves are therapy for patients. And when you're intubated, ventilated, sedated your, your mind is trying to make sense of what is going on and you don't know who you are, where you are. Even if your existing, and you know hearing people, familiar voices of those that you love kind of bring you back to reality and you know many times people have said as part of my role as following patients up after intensive care, many will say that they were drawn to a bright light. But a family member's voice drew them back and it made me think how many patients didn't ever hear a voice to draw them back. How many and so I was very. Wherever possible, we would try to get visitors to come before intubation and obviously end of life. But when patients were delirious like we needed families there to kind of bring them back to some degree of you know connection and but that that was a challenge throughout Covid.

Like how his lifelong friend and his sister were just relying on, not just, but were relying on phone calls. And we did do virtual visiting and…but it wasn’t the same as that human contact. For Rhod that physical contact was really important. And you didn’t even need to say anything; just your presence being next to someone that you love is enough. So, yeah that, that, that weighs heavy on my heart that so many families were not allowed to come in to see their loved ones.

And do you remember your first day in ICU?

No, I don’t consciously remember anything about ICU. Except for a few scattered memories and some that I’ve only been able to piece into the timeline of them happening while I was in intensive care since I read my medical notes. So I had a memory of disembodied white heads bending over me, which I now know was the nurses and it was when I was coming out of sedation hold. And they oriented me, so they’d say, Caroline, Caroline, open your eyes, it’s Wednesday and you’re in…and all I remember of that was hospital. And then they would say, we’re just going to. And they’d do something and it would really hurt and they’d say, oh, I’m sorry, and then it would all go black again. And I can remember the third or fourth time that happening, waking up and thinking, oh, no, not again.

Do you know what it was, the interventions that they did at those points in time?

Yeah, it was when they were doing sedation hold, I know that they were trying to get me to open my eyes. I mean, I was still intubated, I had a tracheotomy at that point. And I remember that they were trying…I was told that they were trying to let me know where I was and see if I would respond to commands. Because at that point, they didn’t know how badly injured I was, how bad my brain was affected.

Like I said, they looked after me and the one thing that they, and when I say they, I’m talking about the respiratory nurses that I’m in contact with and contact me, they would love me to go back or other patients to go back into ITU to see, well, that’s the bed that you were in, you know, so you can get closure on it and I think that’s important. I think that’s important for me, personally, to see where I was and also if I hear a news programme or if I’m watching the news and they’re in hospital and I hear that beeping in the background. There’s a certain kind of beep, I think it must be just the machine that does the…measures the heartbeat, the oxygen, everything. I get a bit of a, oh, urggh, I get a bit of a funny chill up my spine because in a lot of my dreams there was a song with that noise in it or something like that so it can take you straight back there when you hear that noise. So I’d just like to see that machine and look at it in the face and think, okay, that’s what it is. That’s what it was doing. Yes, you never know.

So, were they planning for you to see the ward at all?

Say it again sorry.

Would they show you the ward in normal times or did they talk about wanting to show you the ward?

Yes, they’ve talked about wanting to do that and I think they feel it’s an important part of your journey to have seen it, to know where you were, where you survived and all that sort of stuff. So obviously they can’t do that at the moment because we’re in the second wave and that might go on for a lot more months, but I think it’s certainly in the programme to bring people back. Because it must be good for them to see someone that they cared for who has made a recovery, wants to come back and see where they were but also for them to be thanked or say hello. It would be great to be able to give someone a hug, wouldn’t it, just say thank you and shake their hand maybe but, you know, who knows, we’ll have to wait and see.

It’s only natural they developed an emotional bond with her because of the intensive care that she was getting, and they were all willing her through. One of them came to tea and we had a good, lovely morning and had a giggle and a laugh and a smile. We’ve met others since as well, you know. Meetings at the hospital and everything. It’s good to see them. It’s good to thank them. Good to know that they’re all right and they haven’t contracted Covid or anything like... you know, it’s just so wonderful. And that side of it was... that’s good. That’s helped my recovery in many ways, is meeting the nurses just rather than a videocall. You learnt about them and they’re another human being with another story to tell. So, it does worry me slightly though when you see them and you realise what a bond they had developed because they have to do that on a professional basis day-in, day-out and experience the losses as well as the gains. Must be really, really hard to do.

And if anybody deserves counselling, they do. That’s for sure, you know. But it was nice to meet them. It was lovely.

When you get the funny hilarious, sometimes scary, hallucinations, which is common because you are coming out of a drug-induced coma. I’m quite lucky, in that the hallucinations I had weren’t too violent. There was a couple, but I know of other people who’ve been in my situation that when they started to come out of the coma, they attacked nurses because they feel that the nurses are going to try and kill them. Because it’s only because of what they’ve been doing while they’ve been in a coma, but semiconsciously they’ve picked up what’s happening, and when they see a nurse, they think that they’re going to assault them, so they fight back.

Luckily, I didn’t have that reaction. Mine were fairly funny hallucinations – I met Donald Trump, told him what I thought of him, because I’m not a Trump supporter. I met up with Elton John and his partner in New York on New Year’s Eve, when it was snowing on the steps of Fifth Avenue Hotel, but I had a goldfish bowl on my head. I found out consequently that that was to do with the oxygen mask that they put on me while I was in intensive care, but I actually thought…in a lot of my dreams I was walking around with a goldfish bowl on my head. So, I’m quite lucky that I didn’t have any of these really, really bad dreams. You see, and then I couldn’t put a face to anybody in intensive care. When I started to come out of my coma, the…everybody I saw I felt they were somebody I knew from work, so it looked like people from work, not nurses or doctors. I would not still have a clue what any of them looked like, and that’s one of the reasons I want to go back just to, say, putting a face to a smell or a voice and say, thank you.

I think just looking back on the whole thing if I could go back and ask for anything I think coming out of the ICU, because you’re so confused and so absolutely all over the place. As far as I’m concerned, I’d just been in another world for many years, and I know if somebody could have put like a Facetime or something with family, somebody from the outside as soon as possible to me it probably would have made a huge difference. I’m not complaining or anything, but I just know that would have made a massive difference to me. I know that first phone call was huge, it made a massive difference. I think that isolation from everybody else is something that I know I was so confused all the time, just didn’t really know anything. I just think that would have made a massive, massive difference. I could have easily asked for help, asked can you get my phone working, or can you dial this number – I wouldn’t remember any numbers – but could you do this for me, but you’re just so messed up that you don’t think to ask anybody.

Then when you did speak to your wife for the first time, so you mentioned you didn’t have a voice yet, so it was… So, what did that whole situation look like? So, they brought an iPad, you said.

Yes, they brought an iPad. I couldn’t use my… so incomprehensible for me, I couldn’t use my phone because it was too cumbersome. It’s not a massive phone. It’s the new iPhone 11 so it’s quite chunky but I just wasn’t able to physically operate it; a) I couldn’t’t speak, b) I couldn’t’t hold it up and I couldn’t’t do the numbers. I wasn’t very… I guess I wasn’t very with it, I suppose. So, yes, that first time the nurse would hold it up like that and just there, it’s my wife and she would be talking to me because she knew I couldn’t’t talk. They’d obviously given her a bit of a pre-chat to say, look, you know, he can’t talk but he’s just been doing this, that and the other and he’s awake, he’s kind of with it so talk to him and encourage him, which is what she did. So, she was just sort of saying, you’re doing fantastically well and your daughter’s here with you… me and here's the dog and it’s lovely and sunny. We’re fine. We’re waiting for you, and all that sort of stuff.

So, all conversations, I think, were aimed at giving me hope to just get better and, yes, they were a real morale booster for me, and I think that’s a brilliant idea if, in the entire ward, in a situation where you cannot have your family or friends. I think if I’d been involved in a motorcycle accident or something or, you know, I’m sure that in a normal situation you’d be able to be beside your partner, holding their hand, without being covered in PPE… you know, all that gear and it would help. There's a connection there, isn’t there? So, this is very new for the nurses and the doctors and for the patients and for the husbands and wives and families at home that are not able to come and see you or drop stuff off for you. So that’s where I got that sense that I felt that the nurses might be struggling with that because they can’t… they must feel that they’re not doing their job to the full extent of their ability.

Yes, so that was one of the reasons that we wanted to raise some cash to buy more iPads because I know that the priority for cash must be to go to more equipment for essential things so that’s part of the fundraising that we’re doing is to try and buy iPads but also to make sure that we push up the agenda that mental health aspect.

So, it took me ages to get into the phone, and then it wouldn’t work because there was no service. There was a reason why it wouldn’t work, so they brought out this iPad, and they brought out the iPad and put it in front of me. He got a sick bowl, turned it over, slotted a hole in it and put the iPad in it, and I remember thinking, you’ve done this a few times before, because why would you have done that with a sick bowl if you hadn’t have done it? And he slotted it in the sick bowl, and he then got into the iPad and went for the app or the phone or whatever it was, and I couldn’t remember my husband’s mobile number. I had no memory of his mobile number at all, and I’ve always known his number. It’s only his number and my mum’s number that I actually know, everyone else’s, I wouldn’t have a clue. The kids, anyone, it’s just because they’ve had theirs the longest. But I tried putting this number in so many times and coming up with different numbers. Eventually we did it and he…the nurse actually then put the number in and dialled it, and it went through and my husband just…because I think we’d tried it on the phone, so he knew that somebody was trying him.

And then he answered it and it was just him, and it was good. And then the kids came and it was really good, but it was really sad at the same time, because I couldn’t talk properly, I couldn’t see properly, and I could see by their faces that I wasn’t how they remembered me. I could see everything was…yeah, I could see that they were looking at me and it was like, we are so pleased that you are here, but I could see the kids… you know your kids or you know your parents or you know your husbands, wives, whatever, and you know that in their eyes, you can see that they’re looking at you, and they’re like, what’s wrong? And I could see the kids like, what’s wrong with Mum? She doesn’t sound like me, and I had this suction tube that I had to keep suctioning out my mouth, and they hadn’t seen me for so long, and the last time I saw them, I walked out the house and said, just popping down to the hospital, be back shortly, didn’t even give them a kiss, didn’t give them anything.

And they were looking at me, and my eyes, obviously only one could open, my tongue, my mouth was pure white and thick, really, really thick, so how I was talking, they could see my tongue, and my voice wasn’t normal. I thought I was quite normal, but I was slurry, and my face was all still just…obviously trying to…I’d been stuck like that, hadn’t I, and it’s trying to get everything back. So nothing was normal, whatever that is, but normal, and I could see them looking, as if to say, she’s not good, is she? She might be there, but what’s happened to Mum? And [husband] was…my husband was so happy, and I could see he was so happy, but I could see in his eyes, I could see him looking as if to say, oh god, you know, she’s awake, but what’s the reality of this?

And then I phoned my parents straight after, and I’ve never seen my dad cry, but I did then, and I think they promised me everything in the world that I could ever have or…you know, anything, and just the talking to them, just…it felt amazing. I felt like a little girl again, like I wanted my mum and dad. I broke down more with my parents than I did with my husband and my kids, because I didn’t want them to see me break down. If it was [husband] on his own, but I didn’t want my kids to see my break down, and yeah, I broke down more with my parents, and then [husband] phoned me back, and everyone was just trying to phone me, and then, I just…that was it. I wasn’t on the phone to them for long at all, I couldn’t, I really couldn’t, I was knackered, I was so tired, that really took it out of me in every way, emotional, everything. Yeah. It was the best feeling in the world, yeah.

Gosh. Did you talk to them afterwards about what that was like for them?

I don’t know, I think I must have, like because I spoke to them after that point, I spoke to them so much. I spoke to them…they’d say, chat to me whenever you want, and I’d FaceTime, I’d try and text. It’s really quite funny, actually, because I had…on my phone I had over 500 text messages of people, friends, everything. I had I don’t know how many WhatsApp, Facebook, all of that lot, I had so many different things, and I’ve got such a lovely circle of friends, and I sent…I done a message a couple of days later, because I was being bombarded constantly. And as the time went on, I could pick my phone up and I was getting better at doing different things, you know. And the more I used it, the more…and because there’s no-one else, so you are on your own there, so your phone becomes quite a big…they’re a big thing to us anyway, aren’t they, but it becomes a really big thing, because I could chat to the kids, I could chat to [husband], my parents, my sister, my auntie, my friends.

And was there any difference in this, in the Intensive Care, and in the general ward?

Yeah, I get few differences, ‘cause in ICU, the nurse was always there sitting next to me, 24/7. The first thing I wake up, I see my nurse there, the last thing before going to sleep, the nurse is there. But that is not in the ward, that was different.

In the ward, you had to call the nurse.

I had to call them, and I felt a bit lonely in the ward. ‘Cause the nurse was always talking to me, and I was listening. And she was talking about her day, and tomorrow’s her day off, and talking to me about her plans about her family. One nurse’s son was getting married, she was talking about that, I remember now. But I don’t get that in the general ward, I missed that.

You felt a bit lonely you say?

Yeah. It was a side room, but lonely, ‘cause no one was always there. When I called the buzzer, a nurse would come straightaway.

And did you have any contact with other patients in your time in hospital?

No.  No other patients, no. Because of Covid, you weren’t allowed. Yeah.  ‘Cause of Covid I wasn’t allowed, and there was one nurse, she made me porridge. I never ever ate porridge. She goes to me, I’m going to put something here, and you’re going to eat it. So, she made it for me, she put some honey and I ate it. It was nice.