Dana
Dana and her older daughter recovered from Covid at home within a week in March 2020, but Dana’s husband had to be admitted to Intensive Care. He was in hospital for 70 days (including 56 days on a ventilator), a traumatic time for the whole family, marked by a lack of information and anxiety. He is now back home. Interviewed for the study in February 2021.
Dana and her husband have three children, aged 11,15 and 17. Jewish White British. Dana works as a Speech and Language Therapist.
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Onset
On 20 March 2020, the last day of school before the first lockdown was announced in the UK, Dana received a call from her oldest daughter, who told her that she was feeling unwell. Dana picked her up from school. Her daughter did not have a temperature initially but did after some hours. That evening, Dana’s husband started feeling unwell too. He also had a temperature. The next day, Dana also had a temperature. Their two youngest children did not have any symptoms.
As this was early on in the pandemic, there was little information available about what to do and what was to be expected. The family stayed at home. The eldest tried to take care of the family members who were ill. After four days, Dana and her eldest daughter started to feel better, but her husband continued to have a high temperature, and felt poorly.
First contact with health services and admission to hospital
When Dana contacted the GP, they said that things would either get better or get worse, usually around day 9. On the eight-day, Dana persuaded her husband to have a shower to cool him down, and it is then that she discovered a rash. She called 111, and an ambulance was called for. It took five hours to arrive. In between, Dana received a call to ask if their call needed to be escalated, but Dana recalls that they did not think it had to be; her husband’s breathing seemed to be okay, although he felt terrible. The ambulance arrived around 4:30 am in the morning. Dana’s husband got into the ambulance, where his oxygen was measured, after which he was taken to hospital straight away.
Restricted access to hospital
Dana was not allowed to accompany him, which caused her to feel panicked. She called various friends who are medics, to ask if they knew anybody at the hospital to see if they could look out for him when he arrived. Via a friend Dana heard that he had indeed arrived and that a friend’s colleague had seen him, had given him antibiotics and oxygen, and that he was being monitored – and that somebody would call her soon. This proved to be the only news Dana had from the hospital for several days. Her husband communicated via text when he could whilst he was in A&E. He was later admitted to a ward. The lack of communication with the hospital has been a traumatic experience: as her husband deteriorated, Dana knew less and less.
Admission to the Intensive care unit
On Monday, Dana’s husband called home to say that he was going taken to Intensive care and was going to be ventilated. Dana was assured that somebody would let her know when he left the ward. The last time Dana and her husband spoke was when he asked if she could arrange for somebody could take over his work temporarily. Then he stopped responding to texts. Dana waited for a call whilst at home with their children but heard nothing. She decided to call the hospital that evening at 7pm. Dana’s husband was no longer on the ward, the staff had changed over, and they did not know who or where he was. They gave her the number to the intensive care unit (ICU). When she finally got through to them, the staff initially could not find his name on the list. Dana had to go through the process again when calling another ICU, but they did not find his name either. In that moment another befriended doctor reached out to Dana to see how if she was ok, and she explained what was going on in hospitals at that time. Dana recalled having to ‘hold it all together that night’ because she could not find out where her husband was. But when she woke up, her doctor friend had located him, in a temporary intensive care ward of the hospital.
At this point Dana had not heard from the hospital in four days. That evening in late March 2020 she received a call from a consultant, who told her that her husband had not tolerated non-invasive ventilation and that therefore they had proceeded to ventilate him mechanically. Whilst the doctor had hoped that Dana’s husband would just have to be there for a few days, he would be on a ventilator for 56 days.
ICU Stay and communication
For Dana, the time of Dana’s husband’s stay in ICU was marked by waiting for and trying to assemble some information about how her husband was doing. Dana’s husband’s kidney function declined, and he was moved onto dialysis. The communication continued to be fragmented. Dana, a speech and language therapist by profession, found the conversations to be short, impersonal, very difficult, and at times harsh – which she understood to be an effect of what clinicians and other hospital staff had to go through themselves, but she found them immensely difficult for herself. Dana structured her days around the calls from hospital. Dana describes the time in ICU as a rollercoaster ride: there was always new issues that came up in relation to what she was told in the previous call.
There was no continuity in doctors and nurses who Dana spoke to at all. Dana counted how many people she spoke to in the course of her husband’s hospital stay: 24 doctors and 64 nurses. She called 2 or 3 times a day to get information on how her husband was doing. Dana was reading about treatments and would ask about them.
Dana communicated news with his family on three different continents. Her own family lives locally, which means that they could support her by coming to the driveway and bringing food to the door. She often called friends to check medical terminology with them, which she says she needed even though she herself has a bit of a medical background.
The doctor called after one week to tell her that her husband had a 50/50 chance of making it and that he would not be resuscitated, which was very hard to hear, possibly one of the hardest conversations Dana has had to have. Due to infection control measures, there was no family meeting in which these medical decisions could be explained and discussed.
Dana and the children made weekly care packages to counteract the anonymity of the care for her husband/their father in their absence. Dana explicitly describes two motives for sending them: 1) supporting the staff through this difficult time and 2) making things personal by adding photos of the family and a note to the staff members.
Transfer between hospitals
When Dana’s husband became more stable, there was a plan to move him to another hospital as this bed was needed for patients who were more poorly. Whilst this made sense clinically, for Dana it meant that the carefully established links and rapport with the staff in the current hospital would be lost. The move turned out to be positive: as the hospital her husband was moved to was smaller, it was easier to reach staff, and there was a direct number that Dana could call. Dana spoke to the consultant there once a week. Looking back on this, whilst she understood that this was an unusual and stressful time for staff, Dana felt that there was too much reliance on consultants and too little communication with family members. She emphasised that communication is a lifeline in a time when one cannot be present in hospital. Dana experienced not being able to communicate and not getting information as traumatic.
Improvement
The consultants were worried that they were running out of treatment options. They asked Dana to consent to a plasma exchange, after which her husband’s condition improved. Yet, it would almost be another month until he could come off the ventilator (end of May 2020). The ward was distressing for Dana’s husband as it was busy and there were many unfamiliar people. Dana’s husband came home on the 5th of June – the hospital team would have liked him to stay longer to rehabilitate, but her husband was desperate to come home, and they agreed that it would help his recovery.
Recovery
Recovery was a long, difficult process, which was ongoing at the time of the interview (February 2021). Dana’s husband received support from a physiotherapist, including private physiotherapy on zoom, and Dana provided everyday care. However, she herself has received very little professional support. She felt that only in the autumn of 2020 did she have time to reflect on what things had been like for her. Dana and her husband spoke to each other about what had happened, and they have had some counselling sessions together in the hospital.
The notes that Dana wrote up during conversations with clinicians, in typed up form, were very difficult to read back, but also offered a great help for her husband to ‘fill the gaps’ in his memory.
Support
Dana and her husband are Jewish, and their faith and the sense of community has been a tremendous support. At one point more than 100 people were praying for her husband in daily zoom services whilst he was in hospital. Both Dana and her husband have been involved in supporting others in similar situations, but it was very hard for them when these families lost their loved one.
Dana acknowledges how difficult a time it was for clinical staff. She advocated for devising a way to inform family members, either through a point of contact that relatives can call, or an investment in time to call families to build the trust that staff will call when it is necessary.
Dana received a call from a doctor who told her that her husband had been mechanically ventilated.
Dana received a call from a doctor who told her that her husband had been mechanically ventilated.
And I was told that somebody would get hold of me at some point. By then it was the fourth day where I still hadn’t heard…nobody from the hospital had called me in those four days. That evening, at around six o’clock, I did get a call from the consultant who had ventilated my husband and he explained that they had tried to do the non-invasive ventilation but that my husband hadn’t tolerated it. And that they had ventilated him at around two in the morning and that they were hoping that everything would settle down and it would just be a few days and that hopefully he would show improvement. And that I guess began the process of spending every day waiting for that call. That was on…he was ventilated on the 30th of March 29/30th of March and, yeah, he remained on a ventilator and in intensive care for 56 days following that.
When Dana could neither reach her husband, nor the hospital, she tried to get information through friends working in hospital.
When Dana could neither reach her husband, nor the hospital, she tried to get information through friends working in hospital.
He walked out of the door in his pyjamas to the hospital…to the ambulance at 04:30 in the morning. I then, feeling obviously a bit panicked ’cause obviously I wasn’t allowed to go with him, called, messaged several of my close friends who are medics, asking if they knew anybody at the hospital that I knew he would be going to, to look out for him. And I was very lucky that one of my friends replied at about six in the morning to say that her colleague had received my husband and had put him on oxygen. And had given him antibiotics and that he was being monitored and that somebody would call me at some time.
I was really grateful that I had that connection because I didn’t hear from anybody at the hospital for several days. My husband, obviously there was a bit of a silence as they were examining him and we had to wait until quite late in that day at about…in the early hours of the afternoon before I got some word from my husband. He texted me back to say that he was in what he called the ‘dystopia of A&E’ and that he was going to be moved to a ward.
And that was really difficult because my only contact was him and he wasn’t replying very often, there was a lot of waiting, a lot of silence. A lot of unknown uncertainty and that was quite difficult and that’s, I think, going to be a large part of the theme of what had…a traumatic experience for me was the lack of communication. Later that evening he was feeling a bit better, he was able to communicate a little bit on the phone but… That was Saturday. Saturday, Sunday the communication’s got shorter and shorter, he wasn’t able to speak easily. I think it was the next day, on Sunday, he called me and said, please just talk to me, I need to be distracted, because he was having oxygen, it was getting harder for him to…he was feeling worse.
Then on Monday the silences were getting longer and longer and on Monday probably at around midday, my husband called me again and said that he couldn’t talk but there was a nurse standing next to him who told me that he had been examined by intensive care. That they were going to move him to intensive care and that he would probably be put on a ventilator and that somebody would call me when he was being taken to intensive care. And I asked her several times, will someone let me know when he leaves the ward and will someone let me know when he’s ventilated and she said yes. Several hours passed, I obviously have three kids so I was at home alone with the three kids. We were trying to distract ourselves and as the hours went by, it got harder and harder to wait to hear news, obviously my husband was no longer replying.
Calling the hospital was the only way for Dana to look after her husband.
Calling the hospital was the only way for Dana to look after her husband.
And yet I waited all day for them, that was, like, the only thing you could do. I would call the hospital…it became a ritual for me that I would get up before six and I would call before the changeover ’cause I knew that they would…staff would change over at about eight and if you called close to eight, you couldn’t speak to anybody because they were too busy, they didn’t answer the phone.
I would get up at six and I would try and get through. It would often take several times of phoning. I didn’t have a direct number, I was never given a direct number until much later and I had to go through the whole process of listening to the recorded message and the music, et cetera.
And I would generally get through to a nurse and was often really rushed, often busy, didn’t really have time to talk to me, sometimes irritable. I understood that they were pressurised and stressed and particularly at that time I understood that because of the pressure, there was three to one in intensive care where there’s normally one-to-one.
And it was often difficult to hear because they were in full PPE. I only understood this later, I often found it very difficult to hear what they were saying, always asked everybody their name and I made notes all the time, I wrote down everybody’s names.
I spoke to 24 doctors and 64 nurses, and I spoke to each of their names in the time that my husband was there, and it was often difficult to hear their names or to hear what they were saying clearly and I understood alter it was because of the PPE, it was difficult for them to talk with all the stuff on.
And I guess having a little bit of medical background because of being a speech and language therapist, I understood that they were busy doing what they needed to do, they didn’t have time to spend with families in a way that you would have if you’re present at the hospital where, when there’s time, people can talk to you. But you calling doesn’t necessarily mean it’s a time that suits anybody.
Anyway, I made those calls, I didn’t want to be a pain, but I called once or twice or sometimes three times just because I needed to hear that…it was the only way we could look after him, in a sense.
When Dana wanted to drop off earphones for her husband she was not allowed to do so due to a perceived risk of contamination.
When Dana wanted to drop off earphones for her husband she was not allowed to do so due to a perceived risk of contamination.
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.
Dana and her kids made care packages to motivate staff and provide them with information about her husband.
Dana and her kids made care packages to motivate staff and provide them with information about her husband.
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.
One of her friends helped Dana organise a daily zoom meeting for prayer for her husband whilst he was on the ventilator. These provided hope and a structure for her day.
One of her friends helped Dana organise a daily zoom meeting for prayer for her husband whilst he was on the ventilator. These provided hope and a structure for her day.
One of the other things I wanted to share, which was very, very supportive to us was that during the second week, one of our…so we’re Jewish and our friends helped us organise that on zoom we met every day at 5 o'clock and said psalms of healing which are traditional prayers that you say when somebody is unwell and members of our community, volunteered to do this every day at 5 o'clock and also because we’re a family that’s dispersed all over the place, it meant that we could be together with my husband’s family and friends.
So, every day at 5 o'clock, from the middle of the second week, for 50 days, it was about 50 days, we had about 100 people who came every day onto zoom, it was only 20 minutes or half an hour but every day, my mother-in-law would be there and see her grandchildren and see her children and it was a way of being together while being so far apart. It was a way…there was no information shared on that, it wasn’t about updating people or giving anybody any medical information, it was just about being together and the friends who did the psalms sing beautifully [recording cuts out] …people waiting together in a sense, for him to wake up and for us to know.
For me it was a huge support because it was something I had to do every day, I didn’t always put my camera on, but I was always there and the kids came…my kids always came for a little bit, they didn’t stay for the whole thing, but they always came for a little bit because I think it gave us all a little bit of structure, of something that connected us to other people who we knew loved him and were worried about him.
Yes, that’s beautiful, so you did that throughout the time he was in ICU?
Yes, we did it every day from the second week until he came off the ventilator, we did it, the last one we did…I knew that once he was awake, I felt like it wasn’t necessary anymore.
Dana’s husband found it difficult to have a different body to the one he had before his coma; with the help of a private physiotherapist he worked hard to regain his physical strength.
Dana’s husband found it difficult to have a different body to the one he had before his coma; with the help of a private physiotherapist he worked hard to regain his physical strength.
Yes, and gradually over time he’s got better, slowly, slowly, he was only offered one session of physiotherapy, but we ended up getting private physiotherapy, so he’s been doing physiotherapy on zoom weekly and that’s been a real source of strength for him is that he’s enjoyed having that person every week who’s seen him develop and who has given him advice and who has listened. So, she’s been amazing, and he’s worked really hard in rebuilding his strength because he was very strong before and it was really hard for him to have the strange body that was totally different from the body he went to sleep with. He's worked really hard at his physical strength; I think the nausea and the feeling unwell has been really challenging for him and it comes and goes as part of the fatigue, and he still has elements of that and that is…I think everything has been about time. So, gradually, gradually, gradually everything has got better, and we are aware of how extraordinary his recovery has been considering how ill he really…he was at that time, and they said that to us when he was discharged from the Covid clinic in December, and they said that he really has made an extraordinary recovery.
But he’s still not 100 per cent himself and he’s still struggling with elements of Covid symptoms and fatigue, nausea, headaches, body ache, all those symptoms that nobody really knows the answer to and that’s frustrating for him and still part of it. So, he’s not back to normal yet but he’s a lot closer than he was when he came home.
After her husband returned home, Dana went through a worrying time because she did not really know what to expect and she was not used to him being this vulnerable.
After her husband returned home, Dana went through a worrying time because she did not really know what to expect and she was not used to him being this vulnerable.
So yes, we were going to talk about the recovery for a bit, so since he came home?
So, he came home, obviously very, very weak and he was able to walk but with support, he couldn’t…our house is a double storey, so he needed to help to go up and down the stairs, but he was absolutely determined he didn’t want to sleep downstairs, he wanted to go back to his bed. So, we managed, we just…he would come down once during the day and go up once during the day.
So, also because during that time we were still in lockdown…some version of lockdown, so my kids were home, so we could all help, so it wasn’t like he was going to be on his own at any time because we were all at home. So, he…it was, you know, it was a difficult time but also such a great relief to have him home that I didn’t…I knew that it would be challenging but I didn’t mind because I just was happy to have him home.
So…and he’s a very determined person, so he was determined to make it work. He was obviously very, very tired and needed a lot of rest and was also still feeling really nauseous. So, he wasn’t eating properly yet and that was a real worry about discharging him, they were worried about him being discharged without being able to…initially they wanted him to stay in rehabilitation for a longer period of time, but we felt, and he felt like his best rehabilitation was to be around his family and to have the food he wanted to eat and also, he was discharged from intensive care to a ward, and it was a very busy ward.
So, he couldn’t rest and it was also quite distressing for him in that there were people who were really quite ill on either side of him and actually that’s an interesting thing is that obviously my trauma is those 56 days, his trauma is from waking up and largely his trauma is when he moved from intensive care into the ward because he has no recollection of the 56 days and he also didn’t know how ill he was or that he was on…hanging between life and death, almost every day of those 56 days.
That was obviously our experience of it, but his experience was of the trauma of waking up to unfamiliar people, the delirium was very traumatic for him and then for him, the trauma was being moved into that ward of no peace and quiet and it was just a distressing time. So, coming home made him very happy, to be comfortable and so we had clear instructions about the medication and between us, the two of us together, him and I, took care of him and the kids were also obviously very happy to have him home and so very supportive and thoughtful and tried to be quiet but also be helpful.
Gradually, over time, his strength came back and his ability to eat got better, with having food that he liked and having it when he needed it rather than…and the consultant, the neurology consultant who was the consultant who discharged him, who looked after him towards the end, once he left intensive care was very responsive and communicated with us by email and by text. I think also it helped it ended up being a personal connection there along the way that we knew somebody who knew him, so, that helped in terms of it being a more personal connection.
But I think it was still a very worrying time because we didn’t really know what to expect and it’s something…every little thing would worry us. What I want to say about all of that is my husband is a very optimistic person, he’s the person who doesn’t worry about things, I’m a bit of a worrier and so it was very hard for him to be suddenly ill and vulnerable because he had not been that type of person before. Vulnerability was unusual for him and so that was also a shift, a change of navigating those times when we were really sure, but we were just really, really relieved.