Sadia

Shortly after Sadia and her husband contracted Covid, Sadia’s husband was hospitalised, and her father was admitted to ICU. Her father spent nearly 4 weeks in hospital. After his discharge, he was readmitted to hospital for another 3 weeks after being discharged for 2 days. He is now recovering at home.

Time of interview May 2021

Sadia’s father contracted Covid in December 2020. Initially, he was at home with his wife, not feeling too poorly. When he passed the 9-day mark, which Sadia had learned through her husband’s Covid infection could be a turning point, Sadia worried about him less. However, on day 14 (a Sunday), her father began to feel more poorly: he was feeling weak and confused, and his oxygen saturation levels, which they measured with an oximeter, had gone down significantly.

Sadia’s household formed a bubble with her parents at the time. She lives close to her parents. Two weeks earlier, Sadia, her husband and two of their four children had themselves had Covid.

Her husband had been admitted to hospital, where he had received oxygen support, after which he came back home. Through this experience Sadia had become somewhat of an expert. So, when Sadia’s mother called her to say that her father was deteriorating, Sadia could tell her from experience what would be useful to pack to go to hospital, such as a phone, a charger and headphones. Sadia drove her father to A&E, as she felt this would be faster than waiting for an ambulance.

Admission

A&E was very busy at that time (December 2020) – the UK was in the middle of its second wave of Covid infection. At this point, Sadia was not too concerned about her father as he seemed relatively stable. Her father was admitted to the ward. Sadia’s father had taken his phone into hospital, and so Sadia and he could stay in touch via phone and Facetime. She would ask him questions like what ward he was on, and then she would research the number for that ward and contact them. Then Sadia’s father deteriorated, and he was admitted to ICU overnight and placed on CPAP (Continuous Positive Airway Pressure) to support his breathing.

Treatment decisions

Sadia had a strong sense that her father’s treatment was rushed. She wondered how it was that some people were placed on a ventilator for months, whilst she was told that her father was given a mere 48 hours to recover, or else a ceiling of care; would be reached, meaning he would be taken off the CPAP mask. To Sadia, the conversation about the ceiling of care came out of the blue, as her father was 78 and had always been healthy and had no underlying health conditions. But doctors explained that he was at an age at which ventilation was rarely well-tolerated, and hence not advisable. Sadia felt that attitudes were very negative, possibly based on statistics that showed survival rates of older BAME patients to be poor. Sadia felt that this negative attitude in itself has an effect, arguing that mental attitudes matter to how somebody can recover. She feels that doctors poor expectations impacted negatively on her father. For instance, his oxygen levels dropped after hearing this. He wondered about whether he would have to give up his bed in the near future. Sadia feels strongly that there would have been less BAME deaths if attitudes on survival chances had been less pessimistic.

Contact with doctors

Sadia tells me that the frequency of contact was good: she called in every morning, mid-day and evening, and spoke to doctors and nurses, and got regular updates on changes in her father’s condition. However, she found what doctors told her to be inconsistent: information at one point did not match up with information in the next call. For instance, at one point there was the conversation about the ceiling of care, and then soon after there was a doctor who called to say that her father was well enough to go to the ward. In relation to the content of the communication, Sadia feels that she was not involved in decisions; instead, she was told what decisions had been made. Sadia had contacted PALS to make a complaint about this but following her father’s discharge was too tired to fill out the many forms that the process entailed. She wonders if there is a possibility for family members to see the patient’s saturation levels and other values, or an overview of when they last received a visit, so that they have up to date information on how their relative is doing.

Communication with her father on ICU was good when he was feeling well enough to use his phone. The family tried to encourage him to update them every morning on how he was doing. Some of the conversations were about the business her father runs, and which Sadia was now trying to run alongside the care for her father in hospital, her mother at home, and her own family.

To Sadia’s knowledge her father did not receive physiotherapy in ICU. Because she knew from friends and family what were good exercises to do to bring up saturation levels, she FaceTimed her father and talked him through these exercises. He could see the monitor and saw what worked and did not work, and so they learned together on what he could do, and how to do it.

Sadia looked up information on recent cases on CPAP to see how they fared, to try to get a better understanding of her father’s chances, and for peace of mind. Her brother looked into medications. Sadia also became part of the Covid ICU UK survivors; Facebook page. Luckily, their father responded well to the CPAP ventilation and started to recover. After a total of 5 or 6 days on ICU, he was weaned off the CPAP and transferred to the ward, where he stayed for another 2 weeks. Here it was easier to get a hold of staff on the phone. The nurses were really kind and helpful.

When her father was in ICU, as well as on the ward, Sadia was able to go up to the reception area of the ward to drop off vitamin C, honey sweets, food, and gift bags for the nurses. Her children (5,7, 11 and 12 years old) made little packages for the nursing staff. Sadia went to hospital often, and on most occasions, she found it comforting that she could do so. She spoke to some relatives in similar situation on the way back to the car. One time, she witnessed how a man was being dressed up in PPE, who was about to enter the ICU to say his goodbyes. This is an image that Sadia will never forget.

Discharge and readmission

When Sadia’s father was discharged from hospital, Sadia felt he had been discharged too early. He was not yet able to walk again. He was readmitted after 2 days. He had not received a scan since his admission to ICU two weeks before. Upon readmission, he received another scan (X-ray/CT Scan), and upon comparing the two scans, the team now spoke about ventilation. Sadia wanted to know whether what the scan showed could be residual from the earlier deterioration or whether it was new; – a question that could not be answered considering that no scan results were done at any point between the two scans at hand. Sadia also found it surprising that now the team would be speaking about ventilation, when first they spoke about a ceiling of care.

Her father was in hospital for another two weeks, during which he steadily improved. When her father was discharged for the second time, he was discharged with an oxygen saturation management app, which entailed virtual follow-up. This time he also had a nurse and a physiotherapist visiting him at home, but they had little information from the hospital to work with.

Support for family

In terms of support for herself, Sadia has spoken to her GP about her symptoms which she feels may have been related to fatigue or to long Covid. She never had any professional emotional support but does not feel like she needs this either. She felt supported throughout by her children, even though they are young, from her dad’s siblings and cousins, from friends and schoolteachers. Sadia is Muslim and felt supported through her faith: Many people prayed for her father, which was a tremendous support in this difficult time. Sadia also found comfort in the knowledge that if her father were to pass away, that this would happen for a reason: it would be God’s will. She is very grateful that this was not his time yet. She feels like she has been given a second chance to take care of him.

At the time of interview, Sadia’s father’s health has not yet reached his pre-admission level of fitness: before going into hospital, he was more independent, he does not yet drive and he is still receiving physiotherapy, for which he has just been referred to a neurologist.

Message to others

Sadia’s message to other patients is not to give up hope and keep fighting for their relative. She feels that positivity is key.

After Sadia’s father had come home from hospital, he was unable to move without his blood oxygen saturation levels dropping. He was readmitted to hospital for further support.

And then, so you mentioned when he was discharged, he was only home for a couple of days, before he went back in?

Yeah.

Yeah, can you say a bit more about that, so how that…?

Yeah, so he was told he was going to be put on the virtual monitoring system, but they didn’t set him up on that, so he didn’t have that. And, interestingly enough on that, and another thing that they did was, obviously his oxygen saturation upon sitting was okay, it was once he started moving that the problem was there. And I said to him, dad, have they been getting you to move without ox…I basically said to them, I said, I do not want him coming home until his oxygen saturation is okay without oxygen for 24 hours. In that, I assumed they’d got him moving, but unfortunately, they hadn’t done anything to kind of, you know, like slowly getting him to walk a little bit, and then check his saturations and then, you know, slowly build up his stamina, they hadn’t done anything of that.

And he remembered on that Sat…it was a Saturday that he was discharged, and he said that the doctor didn’t even come and see him before. So, the doctor hadn’t seen him on the Saturday, they’d just discharged him. And I basically feel it was too, well clearly it was too early. He came home and the physiotherapist, the nurse came to see him on the first day, then the physio came the second day, and it was when the physio, to be fair his oxygen saturation wasn’t good, but he kept on saying, I’m fine, I’m fine, I’m fine.

And a very similar situation happened to my husband, because he was sent home and then we had to take him back in. And my husband was the same, I think, that whole thought of them having to go back in, they were just like, no. But then the physio and the nurse came, and they checked dad, and he was quite bad, and they said to him, you have to go back in.

So, yeah, that’s what happened. But to be fair, he should never have been discharged in the first place, and I don’t know why a doctor didn’t see him. And when I queried that, the hospital said, he has been signed off, someone has seen him, but my dad knows that physically no one had seen him that day. He remembers that clearly.

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Sadia, whose husband and father were in hospital with Covid, found sharing her experiences in a Covid survivors’ group on Facebook helpful.

I also joined a Facebook group, where they were dealing with Covid. I think that might be, so the Covid Survivors’ Group, so then that, I would, on there, I’d be like, okay, this is the situation, has anyone else been in this situation, what happened to you? And that was really great peace of mind, because people were like, yes, this is what happened, and this is what happened, and this is where I was, but this is where I am now. So, that was really nice, to be able to find out. And then I remember a girl, I think she was asking about her dad, and, you know, I would respond, because you know the pain that they’re going through, and so anyone that was in that situation you would want to try and help and reassure them that this is similar to what happened to my dad, but he’s okay in the end. Obviously, not everyone does make it through, but I think it does give you that peace of mind.

Yes, so that was quite helpful then, to hear from others?

Yes, definitely. I think being able to communicate with other people that were going through the same thing, or that had been through the same thing, and to get that kind of hope was great.

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Her brother stepped aside to allow Sadia and their mother to go to hospital for an end-of-life visit. Thankfully, it did not come to this.

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. I think there are instances where you have to just go up to the hospital, which I can imagine would be very hard to get things to where they needed to be, so in that sense, it was kind of comforting. And, you know, we’ve got all the facilities of Facetime and things, but it was still, it was hard. And I still, one of the visions, I will never forget, was when my dad was improving, and I dropped a meal for him, sorry…there was one guy who was there, initially I thought he was someone that worked there, ‘cause he had PPE, but then I realised on the phone, he was basically being put in full PPE to go and say his goodbyes. You could see the tears and that was, I think that’s a vision…sorry….I’ll never forget, ‘cause I just thought, that could so easily have been me. And I just felt you could see the heartbreak, and then I heard him say to the nurse, I don’t think my mum wants to come, but I’m trying to tell her to. So, I was just, honestly, at least they had the chance, which was, I think ‘cause the second time around they did allow people to do that, and I think, you know, people were able to have the time that they needed.

But I remember when the hospital had spoken to us, they said two people, and even then it was like, okay. My brother was like, you and mum can go. And I think that in itself, having to make the decision, two people to go, but thankfully we didn’t have to make the decision, but when you think of all those people that were having to do that, and all those people that went with having no one, the first-time round, you just kind of think it’s so awful, it really is.

And then you put it into perspective, and you’re going into shops and you’re doing everything that you need to do, and you’re carrying on in your normal life, and there’s people that aren’t able to say goodbye to their loved ones. I think they got that really wrong.

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Sadia dropped off vitamin C and coffee for her father on the ward, which mimicked normal life.

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.

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Sadia and her children made things for the staff that they then dropped off, allowing them to become acquainted.

I think, in terms of, obviously, it was easier to get hold of people on the ward, than it was in ICU, but then obviously understandably, the ICU, they are really, really busy. And I think on the ward it was nice as well, because they’re kind of regular people as well, which was nice. And it’s funny, because afterwards, so we were a bit late in the day, ‘cause he ended up being in two wards for nearly two weeks each, my kids had made little gift bags for all the nurses, with creams and chocolates, and it was nice when we went to drop it in, because the kids came with me, again, we had to go to the door, but one of the nurses, ‘cause the kids made a card with a picture of my dad, ‘cause obviously they might not remember the name, and they were like: “oh, do you remember him?”.

And then one of the nurses was like, oh, I think I remember you, because you used to phone every evening. And it was really nice that they appreciate it. Every time I was on the phone to them, I would always be like, thank you so much, I’m so sorry for annoying you, but I just need to know, because I just need to have that peace of mind, before I go to bed, that he’s okay at the moment.

And, you know, they were absolutely amazing in that sense. And my dad was saying that he just couldn’t fault the nurses, they were just on it all the time, you know? They’re just angels to be fair. They really, really are. They’re just pure angels.

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Sadia collected information about her father’s condition, and then helped him do breathing exercises on the phone.

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?

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Sadia found the messages from clinicians “very inconsistent” and “harsh”.

I’d spoken to one of the junior doctors, and she’d said to me, and again, the information that was coming out wasn’t very clear, they just were like, oh, he’s suddenly deteriorated. One couldn’t understand why or where that had come from. And pretty much, you know, his…they didn’t even have this discussion, they said, his ceiling of care is going to be intensive care, the CPAP machine in intensive care. And the next 24 hours are critical. If he doesn’t improve, then that will be the ceiling of care. And it was kind of like, where has this come from?

And it was a real shock to the system, it was like, well, you know, what about ventilation, what about this, what about that? Obviously, as the conversations went forward, they explained that ventilation wouldn’t be the right option for him, because he is 78 years old, and basically the prognosis for anyone that has gone on ventilation, hasn’t been good at that age, and he basically wouldn’t survive that.

But again, I think the way it was communicated was so harsh, in that, you know, discussing ceiling of care, I just think there needs to be a bit of discussion around it, rather than just saying, straight out, this is what the ceiling of care’s going to be, he’s got 24 hours, if he doesn’t improve, we’re taking him off. And I think that’s the other impression that was given, that if there’s no improvement within those 24 hours, then effectively he won’t even continue with the CPAP machine, so they’ve got to see an improvement in those 24 hours, and if not, they’re not going to carry on.

Anyway, he was put on high levels of oxygen and then 24 hours later, the doctor comes in and says, oh, you’re improving really well, we’re going to put you on a ward. And it was just like this kind of up and down, and the inconsistency in the message, was just like, driving us insane.

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Sadia called the ward to learn more about her father’s oxygen levels.

So, yeah, so then he was put on the CPAP machine, well again, actually, no, it took a bit of time, and then it was kind of like, okay, they’d made out that it was so critical, these next 24 hours, then you’re kind of expecting updates regularly, and they’d kind of said, as soon as we get him on the machine, we’ll let you know how he responds to it.  And it was like, we didn’t hear anything, and then it must have been a good five hours later, in that time I’d tried to call, and it was kind of, you know, it was kind of like, we’ll call you once we know what’s going on.  Which again, I understand, they’re very busy, but I think when you’re in a situation as a family member, when you’ve heard news like that, when you’ve been made out to think that these next few hours are critical, you’re kind of like, well, someone give me something as to what’s going on?

The nurses were amazing, I was kind of one of those people, one of those really annoying kinds of patient’s daughters that was regularly before, in the evening, I’d call at night-time, before I went to bed, I’d call to get an update on his saturations and how he was getting on. And then also, first thing in the morning, to find out how his night had been, and then kind of in the middle of the day. So, I’d be wanting to keep an eye on his saturations, and I think a lot of the time, doctors and nurses, are like, well what do you need to know this for? But because I had a basic understanding of what was going on, I’d gone through it with my husband, and obviously done loads of research, for me it gave me that comfort knowing, okay, I know where he’s kind of at. And then when it wasn’t going so great, I kind of knew.

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Sadia’s husband had been in hospital with Covid, so when her father was admitted, she knew what to do.

And so can you talk to me a bit more about that time, when your father was about to be admitted to hospital? So, what kind of symptoms was he dealing with, and how did you handle that?

So, basically yeah, so on the Sunday morning, again, like I said, on the Saturday I saw him and he seemed fine, and I remember saying, oh what are your saturations? And he said, oh yeah, they’re good, they’re like 96, 97, 98. And I was like, oh great. So, then I got the call on Sunday morning, and basically my mum had said, oh dad’s not feeling very well, he’s feeling really weak and his saturations have gone down. So, I knew straightaway, I was like, okay, just get him ready. And at this time I was so experienced, because I’d had to take my husband so many times, because he was always sent back, and then I had to go back in again.

So I was like, okay dad, pack your charger, your phone, you need water, get some food, like some snacks, you know, and a toothbrush and toothpaste just in case, then at least you don’t have to worry about, you know? And then I was like, slippers, you know like, at that point, ‘cause I’d experienced it, so we knew what he had to take. So, I got my mum to get all that ready for him, and took him. So went there, and obviously by that time I’d had Covid, and I was over it, and I’d kind of bubbled up with my mum and dad at that point. And then he was starting to act really confused as well, so he was just a bit like, he wasn’t with it. So, like I said, I took him straight to hospital. So, at that point, I thought, there’s no point in calling him an ambulance, because I can probably get him there quicker than the ambulance would take to come.

So, yeah, I took him, so the process at [name hospital] was you go to the triage, so explained to him that he had tested positive for Covid, on whatever date, and then they checked his oxygen saturation, they checked his temperature, and they had to take him at that point. So, at that point, I said, you know, said our goodbyes, and then he went in. But I was able to give all the details that I needed to about how he was doing and what he had. And, to be fair, communicating with the hospital was quite good as well, in terms of you could call through, and they would give you an update as to what was going on. But I do remember, and I think my husband’s experience, and my dad’s experience was very similar in that A&E was just really, really uncomfortable and at that stage it was at the peak, so it was very, very busy.

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Sadia understood why a ‘ceiling of care’ had been put in place for her father when it was explained to her by a second doctor.

Yes, he was on the 14 day mark, so I got the call on Sunday morning, that his oxygen saturation was quite low, I think it was like 83, or 85, and he wasn’t feeling great. So, I took him to the hospital, and then he was taken into A&E, and then he was admitted. So, at that point he was quite stable, so that was Sunday morning, and he was on low level oxygen. I think one to two litres and in a ward and everything, and was quite fine, and on the Wednesday, I think, we’d spoken to one of the doctors, and they said, you know, give it a couple more days and he should be home. But on the, I think, so overnight on that Wednesday, he must have suddenly deteriorated, because I got a call on that Thursday morning, to say that he was quite unwell. I think his oxygen saturations had gone very low, and I think, again, his lungs, I think they’d done an x-ray and it wasn’t looking good.

I think at this point, you see this is the stage where it starts to get a bit muddy, because at this point, I think they’d spoken to my dad, and pretty much said, we don’t think you’re going to, this isn’t looking good at all for you.

I’d spoken to one of the junior doctors, and she’d said to me, and again, the information that was coming out wasn’t very clear, they just were like, oh, he’s suddenly deteriorated. One couldn’t understand why or where that had come from. And pretty much, you know, his…they didn’t even have this discussion, they said, his ceiling of care is going to be intensive care, the CPAP machine in intensive care. And the next 24 hours are critical. If he doesn’t improve, then that will be the ceiling of care. And it was kind of like, where has this come from?

And it was a real shock to the system, it was like, well, you know, what about ventilation, what about this, what about that? Obviously, as the conversations went forward, they explained that ventilation wouldn’t be the right option for him, because he is 78 years old. And basically the prognosis for anyone that has gone on ventilation, hasn’t been good at that age, and he basically wouldn’t survive that.

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Sadia’s parents, husband and children all had Covid. Her husband was hospitalised. Later, her father was admitted to the ICU.

So, it can’t have been easy to manage that? I can’t even imagine.

Do you know what? It was just one of those things. And bless it was my son that got Covid, the eldest got it first, and then, like I said, then I had it, and then my husband had it, and my husband ended up in hospital, and then it was home schooling as well. And like I said, at that point, and I still remember seeing my dad, on that 14th day, on that Saturday, I’d dropped in some medication for something, I can’t remember what it was, and in your mind you’re just think, oh, hopefully we’ve gone past it. ‘Cause my mum was quite unwell with it, she managed at home, but she was still quite unwell, and at one point we had to take her into A&E, and they prescribed her some antibiotics. So, you just kind of think you’d come out of it, and then when dad went in it was really hard, and especially on my kids are really close to him, so it was a real shock. And again, you kind of just thought, oh, it’s going to be similar to my husband, he’s going to get in, have a bit of oxygen, he’ll be fine. But then I think as things progressed, it was really hard.

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