Sources of support for family members

On this page partners and family members of people who have been critically ill with Covid talk about:

  • support they received during their loved one’s hospital admission
  • support they received after their loved one’s discharge from hospital

For patients’ experiences of sources of support see ‘Sources of support after coming home from hospital’.

Support for family members during their loved one’s hospital admission

The period during which a loved one had been critically ill in hospital was highly stressful and at times traumatising for family members. Not only because of the worry, but also because the experiences had been so isolating. People we interviewed found support through phone calls or walks, often with people who lived close by. Paula commented on the time when her husband Victor was in the ICU, whilst the UK was in lockdown: “People couldn’t come round, you couldn’t have people round, that was hard as well, whereas sometimes, in a previous life, you would have someone come round and sit with you. … My sisters would phone me, obviously my son was there… I would walk with my neighbour across the road. So, I could talk, we could talk.”

Some people had online prayer meetings to help them through the difficult times.

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.

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Many told us their children had been of immense support to them, although they did try to protect them from their emotions.

Rani’s children helped her through the time when the doctor had told her Nahied may not survive.

And what would you say was the most difficult?

Losing her, that time when the doctor called me. It was like eight o’clock in the morning, and he told me to come as soon as possible. It’s not looking good. That’s what he said over the phone. That’s the moment I knew what he was going to say. And before even reaching the hospital, I was just crying, at home, and yeah, my son came with me, and he was telling me not to cry, not to cry, but even he started crying, when he reached the hospital and spoke to the…I stopped crying, I put a brave face on, but my son started crying. So, that was the most scary time for me, when the doctor said that, there’s nothing else we can do, and we might have to switch the machines off.

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Support from others was vital in emotional and stressful times.

Paula tried to continue her everyday life as best she could after she had heard that Victor may not survive.

There’s two ways of going through this, where you go and hide under the covers and you don’t get up for days. But then I had a house to run, I had a son to feed, I had a dog to walk and feed. So, it was like I got myself back into my routine and obviously just waiting on calls. I did a lot of sewing. Did some sewing, that sort of thing, crocheting. So, I did keep my mind occupied a bit. But yeah, I suppose it’s hard but, you know, having friends around that I spoke to and keeping it open, being open with people, I think was a big thing. And sort of, my sisters were phoning every day. And I’ve got a brother and he did actually come down. Although he was not allowed, not supposed to, but he did on that Friday night. He came down here, so…

This was when Vic had just gone in.

No, this was the…what Rob calls Black Friday. That Friday he came down, because he was devastated as well, with the news. So, he came down. I said don’t come down. I said you’re not allowed. No, I’m coming. And he came and we just all sat in socially distanced chairs.

Strange times, huh?

Yeah. Because I didn’t…it’s like he wanted to get hold of me and hug me and I’m going you can’t, you can’t. You can’t do that. And it’s really hard, 'cause it’s your…it’s my brother, so… That was hard.

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Deborah and Stephanie were able to see their husbands in the hospital garden, which made a big difference. Deborah recounted: “We had the opportunity on two occasions, to meet Sean in the hospital garden, which was unbelievable, it’s a fabulous space there.  And so they would wheel him down, he had to have like two to three nurses, ‘cause he still had to have a little bit of oxygen, and by this time, they hadn’t taken the trachy out, but he didn’t need that support there.  And we sat in the garden for ten minutes, and it was lovely to see him.  But, you know, he was still very weak. I think we went into the hospital garden twice.”

Support for family members after their loved one’s discharge from hospital.

The time after their loved one was discharged home was also challenging for family members, but in different ways. Some family members we spoke to felt there was nowhere to turn to for help.

Some felt that there was no acknowledgement for what they had gone through during their loved one’s admission. Kate, whose husband had been in ICU, said: “It just felt like there’s no acknowledgement that as a family member going through that, which is not as bad as him, it’s not, that we’re not going through it. Once he’s home that it’s all sunshine and daisies. And it really isn’t. It really isn’t.” When asked about what would have helped her, Kate answered: “I think it would be useful just to talk about it … just being able to sit and talk about it, and say this is how it made me feel”. She emphasised that this support should be separate to support for her partner, because she “would not want to re-traumatise him”.

Some family members felt as if they did not have the right to find things hard, as others “had it worse”: for instance, Kate continuously compared her story to that of others, which made it hard to take her own suffering seriously.

It would be helpful for family members to have someone to talk to about their experiences, Kate suggested.

In terms of support, it would be really useful to know that families can go somewhere, talk to someone about their experiences, without that being contingent on the person who was unwell, ‘cause that’s the other thing as well, I know that there are local support groups that [name husband] is going to access, and that families can access them to, but that’s contingent on him being there. And actually, I don’t want him to know how I feel. Because I don’t want to re-traumatise him, I don’t know how my reaction to it, part of the reason he’s okay, is ‘cause he doesn’t know how visceral that reaction was when he was in hospital, and that’s important because I don’t, yeah. So, something independent of the patient, a recognition, oh, I don’t want a lot, do I? But recognition from local providers that families go through this. And I know that people went through a lot worse. There’s somebody at work whose husband was in Intensive Care for three months. Three months, and was tubed for like, probably about two thirds of that. And I can’t even begin to imagine what she was going through. My husband was in Intensive Care, for probably about four or five days, that’s nothing in comparison, but that doesn’t diminish how traumatising that was. Yeah. It’s almost like there’s a scale of it. People think, well, he was only there for so and so, you can’t feel that bad. Actually it was dreadful.

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In the absence of any formal support structures, others such as Sadia found online support groups helpful.

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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Some family members were offered support through their work. This was the case for Stephanie, but she found it difficult to take it up.

Occupational health of her work offered support to Stephanie, but she felt sufficiently supported by family and friends.

At work they offered me support from occupational health, but I didn’t take them up on it because the hospital I work at is an hour’s drive away and I was far too busy to, to actually do things like that. But I did get, I did get a lot of support from family and friends and from the staff in intensive care as well they were, you know, I would stay and, I built quite a rapport with them and I would stay and chat with them and sort of tell them how I felt on occasions but I think the way that I am as well I’m, I have to sort things out in my own head as well Peter will tell you he calls me motor mouth sometimes because if I’ve got a problem I just talk and talk and talk about it I’m not always bothered about somebody listening I just need to talk it through so that I can work things out in my own head. But it’s not that the support wasn’t necessarily there it’s just that I just felt that the, the support mechanisms that I had whether it was self-support or whether it was from sort of family and friends was enough, was enough for me. But I dare say that if I just needed or wanted more that it would have been available. But as I said I was offered support from Occupational Health at work but it, it would have been more stressful for me actually getting, travelling that distance and taking the time out because I was literally looking after seven horses during, in the midst of winter, took me at least half the day, so making arrangements to actually go somewhere else to get help would have actually caused me more stress. But yeah, I feel that if I hadn’t been such a tough stable person ordinarily, I think I may have, would have needed more help but I was fine, fine as I could be, nobody, unless somebody would have been able to wave a magic wand and make everything right, you know I don’t think any amount of sort of emotional, in terms of talking would have really made me any better.

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Even long after their loved one had come home from hospital, some family members continued to struggle with what had happened and its impacts on them. Kate struggled with anxiety a year after she had first called an ambulance for her husband. She found little relief from the medications she was prescribed by her GP and felt that what she needed most was somebody who listened to her.

Kate long searched for what would help her when she experienced anxiety and panic attacks long after her husband had gone back to feeling that things were normal again.

So, in the meantime since then, he went back to work early …yeah, he’s just back to normal, he’s just back to normal. It’s almost like it didn’t happen, which is lovely for him, but I have to keep, so we’ve just gone past the anniversary of it. And he kind of just flew by, he thinks he’s immortal, ‘cause he survived the Covid. That’s not how it’s worked with me, unfortunately. I still struggle being in crowded places, I get angry if people don’t wear masks, like incandescently angry, like I can’t… when it first happened, if I went to the supermarket, I remember there was a couple of times where I sat in my car, and I couldn’t get out of my car. I just couldn’t be in crowded places because of it. Now, [husband]’s very laid back about it, he’s like, well, you know, it’s their choice, if they want…but, you know, and if people don’t social distance, it makes me so angry. So angry. So, the fact that, so my birthday was last week actually, so it was the anniversary of me calling the ambulance. And that day was really hard. Because he just kind of breezed, I survived Covid. I’ve found that really hard.

And it’s almost like, I didn’t want to acknowledge it, and I had to kind of get through it. And then of course, two days later, knowing that that’s when he went into Intensive Care, he just, it didn’t register with him. But yeah, last week was really difficult. …I just couldn’t, I couldn’t do it, because I was so kind of in the, this is what we were doing a year ago. Yeah, I can’t rationalise that. But there’s been no support for me, and that’s been really hard, and I tried to get support.

I rang my GP and said, I’m not coping. I was coping, but it was like somebody was giving me adrenalin in an IV, I just was hyper-vigilant constantly, and I, you know? So, I spoke to my GP and explained what was going on over the phone, and she said, okay, we’re going to pop you onto some low dose propranolol, which will just take the edge of it, which was great. It was great, I mean, it was the first time I’d felt normal in weeks which actually told me that the whole Covid thing was making anxious anyway, but I hadn’t actually identified it.

So, she gave me two weeks of propranolol, [name husband] had then come home at that point, so I rang the GP and said, can I have some more? Because actually, you know, going forward, it’s, I don’t want to take them all the time, but I’m having these kinds of episodes. …I think she just wanted me off the phone as quick as possible, so she prescribed me so propranolol, to help with that. …So, yeah, so I finished that, didn’t feel like I needed anything else, but I knew after he’d come home, that I wasn’t really, I was still anxious and I was having these episodes where I was sat, for no reason, I could feel my heart going. So, again, I tried to get in touch with the GP.

What I needed was for someone to listen to me and hear that I’d had a really traumatic time and [name husband] was getting the help but I wasn’t, and I was really struggling to deal with what had happened, and kind of manage that. And I said to them, the way that I was dealing with that, if the propranolol really works, and they outright refused to give it to me, which is fine, you know, that’s up to them, because they said in the long-term, and they were trying to get me on it. So, they said, try some Talking Therapies. But they wouldn’t refer me, I’d have to self-refer, which if I’d have known, I just would have done that in the first place.

But, yeah, it just felt like there’s no acknowledgement that as a family member going through that, which is not as bad as him, it’s not, that we’re not going through it. Once he’s home that it, it’s all sunshine and daisies. And it really isn’t. It really isn’t. So, yeah, that’s kind of where we’re at today. I’m not unwell, I don’t feel anxiety as much now. Last week was difficult because it was the anniversary of him going in, but I kind of just dealt with it, I suppose. Yeah, and I think that’s probably about it, I’ve probably talked for about an hour actually, I’m so sorry, that’s quite a long story. And it’s not as bad as other people, ‘cause their partners’ died, or they were intubated for months, and it wasn’t that bad, but it was bad enough. I wouldn’t wish it on anyone.

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