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.

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-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.

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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.

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.

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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.

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.

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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.

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.

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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.

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.

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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.

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.

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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.

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.

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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.

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-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.

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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.

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.

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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.

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.

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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’.

Discharge from hospital

On this page people speak about being discharged from hospital after being in intensive care: How people felt about going home The timing of leaving...