Experiences of Covid-19 and Intensive Care

Did you keep any sort of notes?

Yes, I had quite a few notes, and I’m trying to think now, where I’ve put them, ‘cause I did keep them somewhere. But I literally had, so I had the date, and then his oxygen times and the oxygen saturations, and then, you know, notes of what the doctors were saying. Yeah, so constantly on it. And then kind of analysing the results, you know? And it was really funny, because as I got more and more into it, I knew more. So, like it wasn’t just the oxygen saturations, we needed to know the respiratory rate as well, because we needed to know how hard he was working to thing, so it was like, you know, then if the respiratory rate was a little bit higher, I’d be on the phone to dad, going dad, you need to do your breathing exercises, hold your breath. And, you know, talking him through that, and again, because of my cousin, and because of my husband being unwell, I knew some of the breathing exercises, so I was able to talk through that on the phone with him, because he wasn’t getting that physio, the kind of breathing physio. So, I was able to do that with him and kind of count him down. And those kind of things really helped with him as well.

And he had that determination. I still remember his face, like seeing him where he’d have the ‘cause he could see the stats, and he would do his deep breathing, and he’d say, oh yes, it’s going up now, oh yes, it’s coming down. It was like, yeah, dad, that’s really good. So, he started to become so much more aware himself, and he would know what he needed to do to kind of get the levels to where they needed to be. So, he was fighting, and again, I think, you know, how many people were there that didn’t know about these breathing exercises, and to know to have to do these things, to be able to help, you know?

We’d be dropping off, fortunately the hospital was close, so I was able to drop things to him, like high doses of vitamin C, you know, things like, just general, I mean, you don’t even know if it’s going to make any difference, but things like, you know, to suck on a ginger and honey sweet, or something. You know, all these little things that, you just try everything you possibly can, don’t you? And you just think, there’s so many people that wouldn’t have had that. Yeah.

The fact that you couldn’t visit?

Oh that was so hard. I mean, I used to be there, literally every day, it was so funny, after having my husband and my dad there, I was like, I think I could probably do this drive route with a blindfold on. It was really hard, but I know it sounds really silly, but just being able to walk up to the ward and hand over something, and then have a conversation to say, oh, have you got it, was just so comforting. And then it was really funny, because I still remember, dad started to really improve, and there was a Costa, and we walked by and I was like, oh dad, do you fancy a cappuccino? And he was like, oh, can you get it for me? I was like, yeah, I’ll give it to the nurse, and she’ll drop it straightaway. And little things, like just being able to do these little things like normal life for him, was like, it was so nice.

So, I think being able to do that was good, and I think that was one great thing about the hospital, they let us go up to the ward, and kind of hand it at the door.

And once he realised he was going to have to stay there, one of the things that I knew was going to help him and that he knew was going to help him was to have earphones so that he could listen to music or something to distract him with nobody to visit him or nobody to talk to.

I got in my car and drove to the hospital and tried to ask at the gates if they would take up just his earphones with his name on and a package, but I wasn’t allowed to go further. Again, I came home and contacted everybody I knew who worked in the vicinity of the hospital or in the hospital and obviously several people said no that they couldn’t take anything in because they were worried about contamination.

But one kind person did agree, she was actually a friend of my husband’s from school but not somebody we see often. But she was a midwife and she worked at the hospital and she agreed. She wasn’t working that day, but she took the earphones into the hospital and she left them at the door of the intensive care with a note and they got to my husband.

That was really helpful for him because he then had something to distract him a little bit, he could listen to music a bit and it made a huge difference, that act of kindness from a friend.

So, in January we were even more intensely surrounded by how devastating this virus is and how lucky we are and how much pain people are going through but also, I think a lot of people reached out to us around the communication issues and that it was still very challenging for families to receive information. One of the things we did that was helpful to us was we…every week, the kids and I made care packages for the hospital staff because I felt two things, one is I was concerned about the lack of personal connection, without families being there, we’re all human beings, you get to know a family, you’re connected to them, you’re connected to the patient.

With the anonymity, nobody knew anything about him and us and actually that was an interesting thing, I was never, ever asked for his medical history. Obviously along the way, things came up and then I would send information so that they knew that there was a background, but it was like wartime medicine, it was just take it as it comes rather than planning and thinking.

So, during the time…so the first two weeks, obviously we didn’t do anything but when he left the first hospital, I sent a thank you and a picture of him with us and just to say that we are…this is who he is and there was the person…again I had to find…there was no direct way to do these things because there wasn’t anybody to talk to. I didn’t have a liaison person, so through a friend of a friend, I found a South African who was a psychologist who worked at the hospital who agreed to take the package in for me and then who actually took a photograph of the nurses receiving it and shared with me what it meant to them. So that was helpful.

Then when he was moved to the second hospital, liaison was a little bit easier because it was a smaller hospital and there was somebody, I could email a message and one of my friends was a volunteer delivering food to hospitals and happened to be the one who delivers to that hospital. So, every week, he took it for me and there were two purposes to me doing that, one was I felt like I wanted to do something positive, I wanted the kids to see us doing something positive in this very challenging time, but the other was that I wanted to make it personal. I wanted them to know who we were and who he was.

So, I did make it personal, I made…we baked, and we bought tea and coffee and cakes and every time we did it, we wrapped it up and every time we did it, we put a photograph of my husband with all of us and we wrote a personal note and because I knew the names of everybody I had spoken to because I had written them down, I always made the card personal. So, I wrote to every individual in the card because I think that that matters, I think when you are in a time like this has been where numbers are so high, I think it matters that you count individuals, not just the numbers and so that was important to me.

Eventually, at some point towards…probably the fourth week, the senior consultant at the second hospital who I spoke to a few times said to me, it’s not necessary for you to send things and I explained to him that I knew that it wasn’t necessary, but it was helpful to us and that I hoped some act of our kindness to them was also helpful to them.

What did he say?

He understood, I think, and I think he wanted to make sure that we didn’t feel like it was necessary in order to treat him.

Paula: They asked me at [name teaching hospital] if I would send in pictures and audios, this was absolutely amazing because my sisters then sent pictures in, I sent in pictures because what they said to me, when they first spoke to me at [name teaching hospital] was, all we know about Victor is his name and how old he is. I thought, wow, so I sent in a little email, a little update of where he was from and what he was and what job he did and what have you and then sent in pictures.

Then friends, all our friends, sent in little audios, talking to him, which is what they asked for and they said, it was just totally amazing because that really helped with bringing him round, that he could hear voices and it wasn’t just me and Rob, it was our friends and they were all…one of our friends, [name friend], did…

Victor: He’s a bit of a DJ.

Paula: Yes, so he did some little…

Victor: Sets.

Paula: Little sets and sent them and Vic, this has been requested by such and such and then he would play a little song, so that went down really well, they said, it was amazing what we got.

Victor: We’ve got a very, very close-set inner circle of friends but we actually know, outside that, we know a lot of people and in turn, a lot of our close friends know a lot of people and some very close friends organised the messages from some world-famous people, world famous actor, world famous old footballer and when they came through, I sat there, I was totally blown away and inspirational, so inspirational.

I lay there thinking, if people can take the trouble to get in touch with these people for me, I can’t…obviously I can’t let my family down by deteriorating any more. People that, I didn’t realise, thought so much of me and that really, really gave me even more fight, I wasn’t going to leave Paula, I wasn’t going to leave Rob [son] ever, not while I had some fight in me. But I was totally blown away by the realisation I was actually quite liked. It was really, really inspiring, if felt as if I failed to survive, I would be letting a lot of people down, that’s what it felt like.

I remember there was always music playing, and my sister told me that that’s the type of music I like, so she had given them a few ideas. So throughout most of my time there they would be playing music. Not sure if that was to – what’s the word – to keep me motivated or what, but there was always music playing. And it was a little shock by the time I went to the Covid ward, because it was pure silence. Nothing.

So, did you appreciate the music?

I think it did take my mind off the nothingness of the whole environment. Okay, if you can imagine you’re in a bed 24/7 and there’s nothing else there. You take for granted, you know, or I’d look on my tablet or pick up my phone, or what, but when you don’t even have the strength to be able to do that, you’ve got to find other things to kind of keep your mind occupied.

And did you say the music, that was the music that your sister picked out for you?

Yes. It wasn’t necessarily what I would normally listen to, but at least it was… (stops mid-sentence).

Did you recognise it?

I did recognise it. Yeah. Kind of Motown and music from the ‘70s, ’80s. So, it was definitely recognisable.

And when you were on the ward was your wife still in hospital? Had she been discharged by that point?

She was discharged three days after I came up from ICU. So, we were pretty well…we were both on the respiratory ward but in two different parts.

But he doctors allowed her to come and see me on those couple of days we were in there together. And then she went home. And once she went home, she wasn't allowed to see me. So, our contact was through telephone and Facetime…yeah, Facetime for the next few days. Or for the next few weeks because I was in there for the best part of three more weeks before I got fit enough to be able to leave the hospital.

So, what a bizarre situation not being able to visit each other in hospital?

That's right, yeah. The only reason she did see me in hospital was because she was there with me effect. And that was the visit into ICU and the visit between the two wards which were side-by-side and linked together anyway. So yeah, so quite interesting. It was quite interesting, one of the consultants came and saw me one day and she said I've just seen your wife next door, she's just prettying herself to come around and see you because I've given them permission to allow her to pop round to see you. So quite interesting.

He was on a respiratory ward. He’d very quickly escalated to CPAP and was managing actually reasonably well with CPAP. He found it quite hard to manage to eat and drink without CPAP. He didn’t…wasn’t able to manage to have too many breaks, but he was okay. I guess one of the hard things for him was that he could see…he couldn’t see anyone. There were no visitors, there were no…he didn’t have any human contact, and the contact he did have was behind masks and shields and, you know, visors and PPE. And he really struggled with that kind of lack of social connection.

And I’d, my friend had texted me to say that he was on the respiratory ward so I asked if I could pop down to see him. And it was interesting because again at that time our PPE supply was quite variable, and so because we didn’t know the length of Covid, what, what was expected we were having to be really cautious about the use of PPE. And I was mindful of that going down to visit him, but equally I was equally, I was trying to balance the fact that he needed to see people.

Because he was texting; he would take pictures of himself and send it to our WhatsApp group and so we could see, but he just needed human connection. So, I went in, you know, I’m a senior nurse in the trust and I went in…

So, I kind of made negotiations with the ward if I could go down. And being a senior nurse in the trust I kind of thought I wouldn’t get too much opposition, but I did get quite a bit of opposition because they saw that it was not a good use of PPE for me to visit him. So, I recognised that I wouldn’t be able to visit him much. So, I kind of went to see him and he just spoke about the experience of CPAP mask and being in a bay with others and knowing that everyone had the same condition and feeling like there was a little bit of like camaraderie about that, like they were all in it together type of thing. He was managing and he was very aware of how much oxygen he was on and how much nutrition he was having, and so we just had some really nice sorts of conversations. And then I’d say, what do you want me to do. And he’d always say, can you bring the Times in. He was a big crossword fan. And he had a few deliveries from people to the hospital, so he knew that people were in contact.

And actually, the phone, you know, and WhatsApp was really crucial in keeping that contact in terms of his community, which was vast actually; he knew a lot of people, and that made a real difference.

So, I guess it challenged my thinking really in terms of rationing and about we were in this world where we really had to think very carefully obviously about exposure, but also about usage of PPE and balancing up the fact of social contact towards, you know, depletion of stock and stores for other patients. So, that was quite a challenge really.

Then he got MRSA, the hospital bug as well, so they put him on another course of antibiotics. And at this point he was suffering from delirium, and I didn’t even know what delirium was, so the head nurse there who I’d known, she rang and she said, if you would like to, we’d like it if you could come in today, and she said, and bring as many photographs as you possibly can, of my husband that aren’t old photographs, of maybe a year or so ago, or two years ago, so that, you know, it wouldn’t be that he had to search his memory for anything so that everything was present. So, we did, and we started to print them all of and then we went up to the hospital, and then they allowed all three of us to go in and see him, we had to PPE up again. And when we went in, it was the first time we had seen him for weeks. He was very delirious, he couldn’t speak, ‘cause the cuff was, either down, I can’t remember what happens. He was mouthing a lot, so you couldn’t really hear what he was saying. So, we were chatting to him, I think I went in first, and when he was talking to me, he was looking above my head, and he was obviously having hallucinations, some people that he thought were behind me, and so we left all the pictures there, and then my kids went in separately to see him. But then when you put, like your hand, ‘cause I wasn’t really allowed to kiss him or anything, we had to still be careful. But, when I put my hands on his shoulders and realised quite how much weight he’d lost, and his muscles, his legs were very floppy, even though when we were there, he threw the bedclothes off and was almost trying to get out of the bed, but he couldn’t, ‘cause he was so weak.

And by this time, he was off the ventilator. And then the nurses said, the next day, or a couple of days after, you know, would you like to Facetime him again? And we did. And by this time, the delirium was settling down a little bit, and we didn’t realise, but they’d put the cuff on the trachy down so that he could actually speak, so we were all on the Facetime, ready to chat about what we were going to do, and we always made sure that we spoke one at a time, so that he wasn’t confused by a lot of noise, and then he actually spoke to us, he said, hello, and we all nearly fell on the floor, you know, we were crying, we were like pinching each other under the table, and, oh, it was unbelievable, we were so happy. And he got very tired, so they didn’t leave the cuff up too long, ‘cause you could hear that he was quite chesty, and they had to kind of remove all the gunk.