A-Z

Experiences of Covid-19 and Intensive Care

First weeks at home

In the early days after leaving hospital, especially after long stays, people are often very tired and require a lot of support even with the smallest everyday tasks. This (see Intensive care: Physical recovery).

This page covers:

  • Early experiences of coming home from hospital
  • Initial days after coming home
  • Adjusting the home, moving house
  • A new role for family members

Early experiences of coming home from hospital

People who were admitted to the ICU (Intensive Care Unit) at the very beginning of the pandemic were discharged into a changed world. The country was in lockdown, shops and restaurants were closed, people who could worked from home and the streets were largely empty. Much was still unknown about COVID-19.

 

Carl remembered coming home to an entirely changed world. He had to self-isolate upon discharge.

Carl remembered coming home to an entirely changed world. He had to self-isolate upon discharge.

Age at interview: 50
Sex: Male
Age at diagnosis: 50
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It was a bit like when I was being wheeled out of the hospital on my way out and I went through the downstairs in [hospital] where all the shops are and everything and everybody’s busy living their day-to-day life, and it was just really bizarre to see people. It was just really, really weird because I hadn’t seen anybody. And it was almost like I didn’t believe that existed anymore.

And the lockdown, you see I hadn’t experienced the lockdown yet because the lockdown started when I was in hospital. So, everybody had already been in lockdown for a month, and I hadn’t seen the shops shut or anything. It was really weird. I was like oh my god, there’s just normal people walking around and doing things, because I hadn’t seen any of that. It sounds really strange, but it was really weird. And then you come back out and obviously everybody’s locked up and the world was very different. The whole thing just messes with your head a little bit. But oh the relief of getting to the door and walking through the door and outside. It’s just like oh thank God for that.

And you said before when you went into hospital you felt really safe, but by the time you almost came out you really wanted to be at home. Then what was it like to be at home?

It was lovely. The first two weeks were very, very hard because I had to obviously self-isolate so nobody, my kids and everybody, nobody came near me. And what’s the first thing you want to do is hug your kids, isn’t it, more than anything. That was really… It was just relief to be at home because you felt like now, I’m on the mend. But I just stayed on the sofa and just basically drunk tea, watched TV, rang up people from work and made sure everything was okay and things. I was getting around and hobbling about, but yeah, it just felt so nice to be at home.

It was lovely weather outside. Late April was like summer last year. And then a few weeks later we had VE day and things like that and the whole village came out and everybody was sitting in their front gardens and that was nice. I had a little wander down and a chat to people and things. but I was still really, really weak, just so, I couldn’t stand for very long, I had to sit down, and I felt like a really old man, I just couldn’t do very much.

Everyday life with a changed and weakened body

Critical illness coupled with lying in a bed for weeks has a profound impact on the body; substantial weight loss; muscle wastage; and physical weakness. These are common signs of what is called post intensive care syndrome (PICS). Breathlessness and fatigue were also commonly experienced in the first days and weeks at home, due to the impact of the coronavirus on the body. Brian said: “After less than 60 second standing I was wiped out. That was the battle that really affected me.” Many described how they needed to pace themselves, and lower their expectations of what they could do.

At peaks of the pandemic, when there was severe pressure on beds, people who were thought well enough to go home were discharged earlier than they would have been otherwise. They struggled with their breathing when they were physically active. Some people were at home for two weeks before their oxygen levels reached those that would have been required for discharge before Covid. Several received oxygen therapy at home.

Particularly those who had been mechanically ventilated and proned or who had suffered infections in addition to Covid had physical injuries that needed time to heal. Some people had sustained pressure sores and nerve damage. Some still had not recovered their sense of smell and taste when they came home.

The effects of being critically ill with Covid meant that those who were discharged home faced challenges to accomplish simple, everyday tasks such as standing up, climbing the stairs and showering. Some, like Wendy, benefited from previous illness experiences in dealing with breathlessness.

 

For the first week after leaving hospital Chris lived upstairs in his home because he was unable to climb the stairs.

For the first week after leaving hospital Chris lived upstairs in his home because he was unable to climb the stairs.

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And then you came home?

Yeah, then I came home… When you’re in hospital they got me to pass a walk test of walking 30 metres, on a flat surface, which is fine. But what they don’t tell you is if you come home and you're in a house where you have to go upstairs, stairs are ten times harder than walking 30 metres on a flat. And I was lucky I had my father here, he could support me as I took it very, very slowly walking up the stairs.

And I managed to walk up. And then for a week at home I had to live permanently upstairs, I couldn’t go downstairs to the kitchen, just because I couldn’t physically, my lungs wouldn’t take the stairs. But then after a week I managed to start getting more strength. I got told in intensive care I lost muscle mass in my legs, so my legs felt like jelly for a bit because I was laid not moving for 11 days.

So, building up strength in my legs again, I after a week managed to slowly go down the stairs. Going downstairs it was easier, and then I’d have to wait for my dad to come home from work just to be behind me just to follow me up the stairs, just in case something bad had happened. But I then managed to do it.

I did that for a couple of days, with someone there. And then after a few days I managed to, although I was still a bit breathless, within another week of being home I was able to walk up and down the stairs again.

 

Wendy’s previous experience with Interstitial Lung Disease (ILD) had taught her how to deal with breathlessness, which helped her after her discharge from hospital with Covid.

Wendy’s previous experience with Interstitial Lung Disease (ILD) had taught her how to deal with breathlessness, which helped her after her discharge from hospital with Covid.

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And I got a perching stool for the kitchen and a shower stool for the shower, because that was the other thing, I…if I had a shower I had to go back to bed for an hour – it absolutely wore me out. So, and that went on for quite a little while, having to sit down after a shower, yeah.

But that again was the same when I had my ILD so I knew that that would pass eventually, and I knew what to do. I knew to, if I was going to wash my hair, have the shower – and I didn’t have the stool at that stage; yes, I did – get out of the shower, sit down for ten minutes. Go back in and then wash your hair, because to try and do the whole thing in one action was just too much. So, yeah, but eventually, like now, I’ve still got the stool, still have to sit on the stool but I can do the whole lot now and I haven’t got any oxygen either. So, things are improving, and they do, and they will, you know, yeah.

That’s how you notice the progress, yeah, in those little things, isn’t it?

Yeah, because my consultant was very canny when I spoke to him on Monday and I said, oh, you know, this recovery it’s taking so long. He said, okay, just go back to February. I said, yeah. He said, so how were you then, he said, the same as you are now? He’s so clever. And I went, oh, no no. I said, no, because I’m not on… And my nurse was there, and she went, you’re not on the oxygen now either whereas you were then. I said, exactly. And I looked at them both and went, yeah okay, point made. Because it is, it is just a matter and, you know, when you look back… I mean, I couldn’t have sat here and spoke to you for this length of time because (a) I would’ve been too tired and (b) I just couldn’t have done it with that fluency. So, yeah, so they were very clever.

 

Just after coming home from rehab, Mark was unsteady on his feet. He used a trolley to balance himself and did the dishes in stages.

Just after coming home from rehab, Mark was unsteady on his feet. He used a trolley to balance himself and did the dishes in stages.

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So, I was hospitalised, including rehab, for about 66 days in total. I had a friend of mine keeping count. At one point, she was, oh, do you know you’ve been in hospital for 60 days? I said, no. Oh, I’ve been counting the days. Oh, okay. So, I counted the days. Yeah, after coming out on the 27th…22nd of March, it took me about, yeah, nine weeks before I started driving again, just going to the local shops, to the local Tesco’s, just to get things. Use my trolley. Naturally, things I’ll say to my mum, use the trolley to balance yourself, I’m having to tell myself that. Use the trolley to balance yourself as you walk round.

And my back also was beginning to get slightly stronger. I know I haven’t mentioned that but when I came home, I had to do the washing up in about four stages. And yes, I came home with a perching stool, I think the physio would say, well, you can sit there, [name], and position the stool next to the…next to the sink and do the washing up. But I, let’s say, will put the dishes in and run the water. And then there’ll be a pain my back. I’ll stand it for as long as I possibly can, then I’ll come away and I’ll sit down. Then I might get up again about 15 minutes later. Then I’ll go and, let’s say, wash the plates. Then the pain will start, then I’ll come back. Then I’ll come and then I’ll do the cups and then go away and come back. And then I’ll do…come back and do the pots or the frying pan or whatever it is. And then I’ll come back. Then I’ll go and rinse them very quickly, then come back. So, it might have taken four or five sessions to begin with just to do the washing up. But I done the washing up.

Several experienced hair loss in the weeks and months after coming home from hospital. This could be highly distressing. Jenny bought a scarf to cover her head when she went out.

 

Ann lost about a third of her hair within two months after discharge and itching skin, possibly related to her kidney function. She bought a scarf to cover her head.

Ann lost about a third of her hair within two months after discharge and itching skin, possibly related to her kidney function. She bought a scarf to cover her head.

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I just wanted to say as well – or I forgot to say – is that when I came out of hospital, within two months of coming out, which I found very strange, I lost about a third of my hair, which was, to me, more devastating. Because it’s such a visual thing, your face, isn’t it? So, part of me wouldn’t go out, and then when we did go out, I ordered these scarves that you wear when, you know, more, like, when cancer patients wear scarves if they’ve lost all their hair. But my hair was so thin, and it came out so dramatically, I thought it would never come back again; but thankfully it has. And now I’ve been told that’s all part of Covid as well. Which I found strange that it didn’t happen in the hospital, it wasn’t until I came home, a couple of months after.

Yeah, so there was that. And then I had a really bad, for a couple of days, of itching all over my body, I was constantly scratching myself. When I phoned the doctor, she sort of told me off a little bit, she said because that could be connected to my kidneys. And I said, well, obviously I didn’t know that; because you don’t, you just think all these things, you just think, oh, God, is there another…something else with Covid that’s affecting me at the moment? But thankfully I’ve only had little bouts of scratching since then. But it was to the point where the itching was so bad, I actually bled; and I have got some scars on my legs where the itching was so bad that I really scratched myself quite bad.

 

Royston lost a lot of his hair when he first came home. His main problem now is his hernia, which pre-dated his Covid infection.

Royston lost a lot of his hair when he first came home. His main problem now is his hernia, which pre-dated his Covid infection.

Age at interview: 77
Sex: Male
Age at diagnosis: 77
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But I’ve found, particularly when I wash the hair, that I’m actually losing some hair. The first time it shook me because…that’s only recently started to happen. The water wasn’t running away and the reason was there was so much hair had got in the plughole, you know, I call it a plughole even though it’s a shower, you know what I mean, the drainage point. So…but my wife, who, as I say, suffered and she was in ICU as well, it was serious and then I looked after her when she came home. But she had a period of hair loss as well. So, it seems to be a bit of a feature. But, you know, I suppose at my age, I’m lucky to have as much as I’ve got.

And I think that’s the length and breadth of the problems. I’ve been asked because obviously I’ve had sessions with critical care team and also the respiratory team, and they all ask me questions about, you know, how I am and what’s happening and all the rest of it, and try and tell me what’s normal, what to expect or not. But no, I think I’m very lucky and there’s nothing much…basically, my limiting factor is the hernia problem, that’s…apart from that, but I can still enjoy life.

Sleep disturbance is common after time on an ICU. Like many, Paul had difficulty sleeping at regular times for a long time: “My sleep pattern was all over the place. I’d go to bed at maybe half past ten, 11, get one hour of sleep and then wake up like it was morning time, and it was only maybe midnight or so. So, I’d get up and I’d watch the television till two or three in the morning, then go to bed then sleep till eight or nine. But my sleep was everywhere, and it took me ages to get into a proper routine for sleeping.”

Many felt that at the beginning of their recovery, improvements were notable, sometimes even on an everyday basis. Several were supported by family members and health care professionals from different disciplines (see also ‘Sources of support after coming out of hospital’).

 

A physiotherapist showed Geraldine how to use a walking stick when going down and up the stairs. Geraldine was motivated to master the stairs by the prospect of seeing her daughter, who was in hospital at the time.

A physiotherapist showed Geraldine how to use a walking stick when going down and up the stairs. Geraldine was motivated to master the stairs by the prospect of seeing her daughter, who was in hospital at the time.

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Some physiotherapist came, meanwhile, and then I told them that I had a fall. So, she said – very lovely nurse – she said to me not to worry, they’ll give me a walking stick to walk about. And then she said you can take this one home. It will be easier for you when you try to climb up, climb down. Ah, that’s it, physiotherapist. I told the physiotherapist I’m having this problem, I explained to her, because there was a fall now and I’m not able to do a lot of things.

And then she said she would contact this community service. They said they’d call me within seven days, I think, or maybe took a bit longer. One chap he called me, he said he’d give me a date when he can come and show me… Because I was saying I don’t’ know how to use the walking stick; this is my first time ever having a walking stick to go down the stairs, to do exercise. Because that will help me to do more exercise.

So, he showed me…he came to the house, he showed me how to do it and to hold the banister, take the walking stick this way, each step. And he showed me how to do that with the walking stick on the next step, hold onto the banister. And I did that. So, he said first seven steps, from my landing to the second floor, do that only those steps. Go up and go down. And then do that for several times. And then if you feel tired, you rest. You can’t do everything too fast. Just do it at your own pace, just do it and you’ll be alright and when you feel comfortable you go up to the next level.

So, I was…and then I followed all his advice, and he rang me up to find out how I’m doing. So, I told him that. So, I said I would like to go down - more forward, to the ground floor. And he said to me now, I’m becoming ambitious now. I’m getting a little bit more confident now, on the steps. But I can see…I remember thinking when my daughter had…after the brain tumour she was scared of the stairs. I was like that: scared of the stairs, going downwards. I told myself I might fall down.

But then my rational mind was telling me you’ve got a walking stick; you don’t have to worry about it. Because by this time I’m listening to my brain, what it tells me. So, I told myself that is…you know, it’s like it’s encouraging me to do…you know, slowly. Just take baby steps, telling me to take baby steps. I need that. So, the day came. It was, like, two and half weeks I’m doing my seven steps only, going up, going down. I was really huffing and puffing at that time, sweating a lot. And I’m thinking shall I give it up or not. But then I’m encouraging myself to do it a bit more so I can go and see my daughter, take a taxi and go and see her.

That’s all going on in my head when I came home, until I had the call. So, and then two and a half weeks I did that. I told myself next week, the following week, I’m going to go down the next 14 or 15 steps, and I did that. First, I didn’t want to do it. I thought no, I don’t want to do that. I was hesitant to go down. Then my mind says hold onto the banister, take one step at a time. So, I did that. The same method: putting the walking stick onto the step and then lean on and hold onto the banister. Slowly, one at a time, one at a time, I did that

And then by the time I came to the 15th step, 14th or 15th step, I gained a bit more confidence. I was thinking I did it. How did I manage to do that? And it looked like a mountain, when I’m looking up again. And then, I don’t know, I came down, now you need to go up, up again. So, I was doing each step like I did before. I’m telling myself I’m doing good. This is good for you, it’s good for your body, good for your arthritis, good for your back pain. Do it, do it, slowly, slowly. I went like that. So, I only did it twice and then I thought I’d better go and rest, so I climbed the next, last several, steps to my room and I opened my door, and I went in.

Yes, so as I said just now, I was gaining my confidence on the stairs from that day onwards. I was okay and then I remember telling this guy, the physiotherapist, on the phone, I was telling him, I said I gained my confidence on the steps, with the stick. I followed all your advice. And then I said thank you. I thanked him for, you know, helping me with that. And he said to me that if I ever need any further help in the future, to contact them. They will assist me and everything.

 

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.

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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.

 

Recovery for Johnny meant eating well and doing light exercises, supported by his wife, a zimmer frame and sometimes a physiotherapist. Eventually he could walk alone.

Recovery for Johnny meant eating well and doing light exercises, supported by his wife, a zimmer frame and sometimes a physiotherapist. Eventually he could walk alone.

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So, when the doctors finally said I can go home and continue my rehab at home I’m glad because I’m like a very thin person because my nutrition is very poor. I don’t like the hospital food. Only a small amount I can eat. So, when I get home, I eat as much as I can in my own food, with my own food, native food. So, I gain… When they discharged me, my wife said I’m like paper, I’m like a puppet, they had to carry me. Two people carrying me to my flat.

And then from there there is a zimmer frame, but I just cling to the wall because I don’t like using the zimmer frame. So, when I’m finally at home I can breathe well. Then day by day I am trying to gain my strength and I’m trying to inhale as much as I can and do some light exercise, and my wife is always with me because she also got the Covid but she’s asymptomatic, and she also ask her employer if she can take the off sick because she’s positive. So, she look after me for over a month, and attending to all my needs, and eventually I am gaining strength. I can now stand, and I can move around, but I don’t use the wheelchair…the zimmer frame.

And then a little bit into that, maybe around a month, I can go outside. My wife, she stood me in the gym. We had the aerial gym outside. And then walk around and then inhale fresh air from the park. Then the physio who is also coming to the communal area she assisted me in all those exercises. And then when she’s done, she just gave me some papers with drawings so I can do some exercise on my own, and I was able to do all of them anyway. But my main concern is how to walk independently without the frame. I eventually managed to do that, but I thought I’m very confident that I can walk already.

It could be difficult to adjust emotionally to being home. For some, the memories and experiences of the ICU and the ward were still very present. Zoe felt hopeless and not like herself and was grateful for the help her GP provided.

 

After coming home from hospital, Zoe did not feel like herself. She appreciates the help she got from her GP, who felt she had PTSD.

After coming home from hospital, Zoe did not feel like herself. She appreciates the help she got from her GP, who felt she had PTSD.

Age at interview: 46
Sex: Female
Age at diagnosis: 45
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My GP was so supportive. The medical tests and the post-Covid team were great, but I feel like, after discharge from hospital, I honestly think in so many ways, my GP sort of saved my life. ‘Cause I think I was in such a dark place when I came home. And the hospital were extremely supportive, but I think, probably because she’s known me the longest and knows me best, she was the one that picked up on the fact that I really was not the person I was when I went into. So, I think GPs probably don’t get enough credit during this Covid journey, because they’re not, you know, the people with the masks on, putting tubes down you and injecting you and stuff, they’re sitting in an office, dealing with patients. But I don’t think I would have got through those first few months without my GP. Because I just had this huge sense of kind of hopelessness, when I came home. Grateful to be alive, but I just felt, I think I just felt really hopeless and everything. You kind of, it’s sort of like a, everyone wants you to be like, you’ve survived it, you did it. I didn’t feel like that at all. I know I got home, and I know I was alive and obviously I know I survived, but I didn’t have this feeling, like, I’m a survivor. I just felt like, I’d got back from war, and I didn’t know how to adjust to civilian life.

I’ve got the most amazing GP who knew my whole story and what happened to me in hospital. She was on the phone to me probably every day, for the first two weeks when I came home, just checking in with me. I’ve had the same GP since I was 11, and she was the person that said, I really think you have PTSD, I really want you to have an assessment with a psychologist, ‘cause I really think there’s things that we can do to help you, ‘cause I think you’re really in a bad place, so I think…I have experience of mental health, and I thought I had a good understanding of it, but I’ve never experienced it myself as a person. So, I think for someone that’s kind of gone through life always thinking, even with my haemophilia diagnosis it’s kind of like, fine, I’m like it's good, I’ve got this, I’ve always felt like I can manage everything, whether it’s my four boys, whether it’s my work. I think it was quite hard to understand that this was just something that I couldn’t navigate myself and that I needed help.

Adjusting the home, moving house

Some had had adaptions to their house organised by occupational therapists who supported their everyday life and recovery. Some families improvised a bedroom on the lower floor to avoid the use of stairs.

 

The occupational therapy team had adjustments installed in Nahied’s home. A physiotherapist and nurse came twice a week initially, and later once a fortnight.

The occupational therapy team had adjustments installed in Nahied’s home. A physiotherapist and nurse came twice a week initially, and later once a fortnight.

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Do you want to say a bit more from when you came home from the hospital?

When I came home from hospital, I had a plan from the hospital, a carer’s plan. They used to come, first before me getting discharged, I had an item fixed, like a bedrail, like this I’ve got here, and a toilet frame, shower seat, another rail for me to get up the stairs. So, the hospital helped me quite a lot.

And then I had a care plan for six weeks, which was for nurses coming home four times a day. Getting up me, coming in the morning for my breakfast, getting me up, giving me a shower, giving me my medication and my breakfast. Then lunchtime, she used to come and then in late afternoon, then in the evenings. Giving me a shower in the evening as well, dressing me up.

So, I did rely on them coming home. But then slowly, I also had physio coming twice a week, then as time went by then that reduced to three nurses a day, then two nurses a day. But now I have one nurse coming every two weeks, which is good.

 

As Peter could hardly walk when he came home, Stephanie slept downstairs on a mattress next to a loaned hospital bed.

As Peter could hardly walk when he came home, Stephanie slept downstairs on a mattress next to a loaned hospital bed.

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Stephanie: So he came home on the 14 January, when came home he was extremely dependent on me so we had, we had a few adaptations to our house and we changed one of the rooms downstairs into a bedroom so they loaned us a hospital bed with hydraulics and I brought a single downstairs so I’d be down with him but literally, I mean as far as mobility was concerned he could literally just shuffle a few steps with a gutter frame but he, he was so totally dependent on me he had very little movement in his right arm or hand from the DVT but he showed determination the whole way through and he progressed fairly quickly had lots, he’s had lots of therapy for his for his arm and his hand and he’s got full movement of his arm now and his hand is more or less back to normal. Its just strength wise he’s not as strong as he was and it’s just the strength in his hand now that need to come back. So, I mean I, I was sort of prepared for a lot of psychological issues but to be honest you’ve not been too bad, have you?

Peter: No.

A few people were forced to make drastic changes to their living situation. The adaptations that Moazzam needed to his home were not possible financially. Before he became ill, he lived with his wife and children in a flat that could only be accessed via a staircase. After his hospital admission he could no longer climb these stairs, and the bathroom was too narrow as he now needed a mobility aid to stand and move. He hoped that the government would provide a one level flat. In the meantime, he saw no other option than to move in with his elderly mother.

 

Moazzam moved in with his elderly mother, when his infection from Covid and Intensive Care admission left him unable to climb the stairs to the flat where his family lives.

Moazzam moved in with his elderly mother, when his infection from Covid and Intensive Care admission left him unable to climb the stairs to the flat where his family lives.

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Uh, so, I was kinda on the road to recovery by the time I left there, 4 1/2 months later. So, it, I was, but I was literally on the bed for all of that time. Let's see. It's been a struggle since I've come home. My own house is a first floor flat. Where I normally live, but I can't go upstairs. I've got no strength in my legs right now for me to take steps up. So, I've had to come and stay here at my mom's, where the bathroom and my room that they've given me here to stay in is all on the same level. So, I have enough strength in me using the frame to walk to the bathroom and come back. The government has provided a carer who comes in twice a day. In the mornings, so around 11:00 o'clock he'll come. And he literally takes me to the bathroom. Helps me in the bathroom. And helps me do Wudu [Islamic procedure of cleansing one’s body before starting prayer] basically, and then we come back out. And then he comes again at about half six in the evening. And takes me again if I need to go to the toilet. During the day then my family helped. But I struggle while I'm in the, in the actual bathroom because I have to be there. I'm on my own there. Twice a week the carer will help me have a shower. Otherwise, I can't. I can't, literally, my arm doesn't stretch to my back for me to rub my back, even if I try and put it on my head. It’s the strain on my shoulders. It's so much that it starts hurting, so the flexibility is gone. Might be because I've been, I was out for so long. I don't know what the, once again, the medical or technical term is, but my mass, my meat sort of off my body, it has started to hang off my bones. It's the muscle mass, it has deteriorated.

 

When Shireen and Yacoob were in hospital their son gave up the shop, they had run for 30 years. As their housing was linked with the shop, this meant that had to find new housing, and get used to retired life.

When Shireen and Yacoob were in hospital their son gave up the shop, they had run for 30 years. As their housing was linked with the shop, this meant that had to find new housing, and get used to retired life.

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So [I] have been discharged. But before he [Yacoob] was discharged. My oldest son, who was, we were living in the flat above the shop, he doesn't want to stay anymore there. So, he just, by an emergency, he just rented out this flat, the one we are staying there. Because that one is that you have to take the stairs and all this, so he said it's not good for both of you, so he just rented out this flat. When he came down, it takes him about two months, two months, nearly three months.

He [Yacoob] discharged February 26th, March, April, May every day a little bit better. And then he couldn't, it's very hard for him breathing. After a few steps, he walk, he get very easily tired.

Then we have to wind it up, all our business. It's a big shock, it was a big shock for us because it was 30 years business and it was a good running shop, but for his health and for his age, we have taken a decision. And we winded up everything, in March, we just gave this the owners the shop, and we just move in here. It was a very big nightmare for us. But now after that, April, May, June, he, every day, he goes for a walk about two hours walk. Two hours walking slowly, slowly, slowly, slowly, and now he’s getting better.

But there’s a very good, all the staff, the hospitalised doctors, everybody was very, very helpful for us. They did it quite a lot. So, it was a big nightmare, big nightmare. Trauma. I was in the hospital, and he was in the hospital and the children doesn't know anything about [the shop]. So, it was a very big, it was, I don't know how to explain that it was a big nightmare.

But now he gets bored because he used to work from morning 'til evening now, he has nothing to do. So, he is getting bored. That's the thing. So, you don't know the life is going on, but this is a temporary flat. We have to look for the house, but still, we couldn't find it. I don't know what to do. It's a Covid, for this Covid just upside down, everything, life had totally changed because the business, everything we have to survive. Everything, we survived everything. But you can't help anything. One thing we got, because sometimes we thinking it was a real nightmare. He was not in a condition that he will come back. It was where he was a very bad condition, but God help it, God help it.

A new role for partners and family members

The support from partners and family members was central to recovery (see also ‘Sources of support after coming out of hospital’). Often patients who had been critically ill were very dependent on help with even the smallest everyday tasks, especially if they were discharged earlier than usual. Many felt a mixture of relief and uncertainty and faced new practical and emotional difficulties. Moazzam’s mother found that the new role gave her strength and a new sense of purpose.

 

Kate was relieved when her husband was home but felt that there was very little acknowledgement for what family members go through when their loved one comes home from hospital.

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Kate was relieved when her husband was home but felt that there was very little acknowledgement for what family members go through when their loved one comes home from hospital.

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Let’s just go over a little bit, from the point that he came back from hospital, like, do you remember what you felt then?

I was just relieved he was home. I was relieved he was home. I don’t think I slept properly for about a week, because obviously his breathing didn’t get back to normal for weeks, he couldn’t get up the stairs in one go. We’ve got two flights, not two flights of stairs, it sounds very grand, but do you know what I mean, two flights? And when he first got home, he couldn’t do that all-in-one go. And it’s almost like, he would set that as his goals, and I get that. So, within a couple of weeks he was doing that. He couldn’t get to the toilet, so we had to buy one of the little plastic things, so he could pee, which was just hilarious, but equally not. So, he would do that downstairs, ‘because we don’t have a downstairs toilet. So, it was just those little adaptions that we had to do. But I was just pleased he was home, and that I could do something. I could do something positive, and practical to help, because you feel so helpless, it is a loss of control, but you just want to do something to be able to help. And I fed him, that was, like any wife does, you know, that’s how you show love isn’t it, you feed them? And he’d lost a lot of weight, so we started with a kind of soup and stuff like that.

There’s been no support for me, and that’s been really hard, and I tried to get support…. 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. ...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.

 

Moazzam’s mother found new strength in her legs after her son came home from hospital.

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Moazzam’s mother found new strength in her legs after her son came home from hospital.

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I have been hearing great things about you.

Alhamdulillah, all good things are because of Allah, son, we aren’t worth much, son.

And making Dua and prayers is most of what we can do. And I was told its by your Duas that he was able to get back into good health?

Allah wanted to give him good health. I know, a mother’s Dua holds weight, is very valuable, but whoever is wanted by Allah, goes. There must be so many mothers like me whose heads have been on the floor crying and have must have finally gone quiet. How many young kids have gone, I just can’t believe it, son? It pains me so much hearing about them, seeing them, thinking about them.

Absolutely, absolutely. I also heard that after his coming home, you got on your feet, got moving around the house, and had a newfound strength in you?

Yes, son. His father passed away last year, in January. He was also bedridden for 3 and a half years. So, I would be busy with him, my daughter was with him too, there was a carer who came about three times as well. There was so much work to do around him that I wouldn’t be able to sit. I would just be around him all the time, so I was fine. Even with a stick I used to walk, but still I used to manage him. After his death, I sat down so much, I would get up and then sit in bed, and then in the bathroom. That became my daily routine. After his coming home, he keeps saying to me Mom, sit down, sit down. I say [name participant], because of your coming I’ve actually started moving, Allah has given me strength in my legs, so now I’m out and about. Don’t stop me, I used to be getting jammed.

 

Ann, who has fibromyalgia, was told by her doctors that they were afraid that she would not survive sedation, so she agreed to the continuation of non-invasive ventilation instead.

Ann, who has fibromyalgia, was told by her doctors that they were afraid that she would not survive sedation, so she agreed to the continuation of non-invasive ventilation instead.

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From what I’ve been told I was in a chair, but I thought I was on the bed, but I was in the chair, and I just flopped. And then I was rushed to ICU. I can’t remember much in the beginning other than the doctors had put me on a hundred per cent of oxygen, and I was sort of drifting in and out. And I recall the doctor coming to the bed and saying, you’re on a hundred per cent oxygen, there isn’t anywhere else we can go with this. He said they didn’t want to sedate me, you know, when you’re sort of put into an unconscious state, because of my other underlying health issues [blood clotting], and they said I wouldn’t survive it.

After discharge from hospital family members became temporary and, sometimes, long-term carers. This was not an easy transition. To balance out this shift in roles, some people spoke of their efforts to maintain and rebuild their romantic relationship to avoid it being only about the provision of care.

 

Steven pointed out how difficult it is for his wife to be both his carer and his partner.

Steven pointed out how difficult it is for his wife to be both his carer and his partner.

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I think my wife would hate to be called a carer. I think it would be damaging to my health if I told her that she was a carer; I might not survive the day. But she is the one who notices if I forget things, she is the one who notices if I am struggling in times of language, she is the one who notices if I am behaving in a different way. It is very hard for her because she’s close to me to deal with it in a clinical way. So, if you’re in a relationship with someone it’s incredibly hard to switch between okay, now I’m going to give him a hug and say, are you all right, and then 30 seconds later, right the issue here is x, y and z and this is what we need to do. It’s both hard for me but it’s incredibly hard for her. And she works incredibly well at it, but it is immensely hard.

 

Peter and Stephanie invested in togetherness after having spent so much time apart.

Peter and Stephanie invested in togetherness after having spent so much time apart.

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Stephanie: Obviously when he came home, I did take some time off, but he was very dependent, and we were offered help, but I preferred to look after him myself and I think you’d probably preferred that as well.

Peter: Yeah I mean nurses in the hospital were all a bit… but it’s nothing like with your partner, you’ve got that togetherness haven’t you and, you know, you haven’t got every Tom, Dick and Harry looking after you and it’s, I think it’s important that you get that bond back again with your partner rather than just, you know, saying to the nurse can I have a bed pan please and them looking after you.

Stephanie: So, it was, I mean I can’t pretend it was easy, but I was just glad to have him back and I just wanted to spend time with him because, you know, obviously we’d been apart for so long while he was in hospital.

Some family members struggled to provide care for their loved one as they were still suffering with the effects of their own Covid infection.

 

Pete took care of his wife when she was unwell. Then he also fell ill, and both were admitted to hospital. She was discharged before him. When he came out, she was still too weak to care for him on her own, so she asked their son for help.

Pete took care of his wife when she was unwell. Then he also fell ill, and both were admitted to hospital. She was discharged before him. When he came out, she was still too weak to care for him on her own, so she asked their son for help.

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I think what strikes me in your story is you were both so unwell at the same time. So, when the ambulance came, they must have seen her…

Yes, they took me away and at the same time said to my wife I’m afraid your oxygen levels aren’t right, you’re not well, we’d better get an ambulance for you as well. So, we both got taken away at the same time. But she was definitely, that weekend, more poorly than myself. I was still moving about and doing things and then all of a sudden it seemed to hit me. Obviously, probably, because we were still in the same bedroom together and I, possibly earlier, should have gone into the other room. But at the time I was looking after my wife, so you just carry on.

Yeah, it is one of these things, right? It’s just very impossible to take care of somebody without being physically close to them, so… Yeah.

Yeah, I should have got all the gear on, shouldn’t I, and put the mask on and…? But you don’t start doing that, do you? We’ve been together a long time. We’ve been married 40 years, you know, and so we know one another. Which is important as well, isn’t it? And you can see when one another is not well or there is something wrong. So, you try to help the other person out and that’s how relationships work, isn’t it? So that’s what you do. And then next news, you know, we were both poorly, so there was no choice in the matter, you know.

Yes. And how do you think it affected your ability to take care of each other after you came back from hospital?

Well, it was interesting that my wife decided to get my eldest son involved to help me. She wasn’t fit enough to manage on her own and, like I say, she did say that she slept it off and she felt okay in herself. And she wasn’t as debilitated as me. She wasn’t breathless or… and the ironic thing is that as a child my wife had bronchitis, which was quite… you know, the chest and everything. That didn’t affect her in that way. So Covid’s a strange phenomenon.

Many people we spoke to expressed gratitude for ICU doctors and other health care professionals being just “a phone call away.”

Read more about the time after hospital under ‘Doing the work of Recovery’ and ‘Coming to terms with what happened and long-term effects’.

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