Family experiences of Long Covid

I can start by saying they’re all carers now. And my oldest, she doesn't live in the city I live. But she does a lot of organising behind the scenes. And then my middle daughter, she’s the one what was at home. It, it just so happened that she was in between homes when that time came. So, she was here with us, so it devastated her. You know, my personality wasn’t the same. It wasn’t the same mum she could chill with, you know. She could, you know, she’d look for me for advice. And I just couldn't even communicate, I couldn't even respond for half of the things what she wanted to ask me. She had to step up into the motherly role.

My grandson, bless him, he, he learned how to cook [laughs]. He learned how to cook during that time [laughs]. He learned how to peel, you know, peel spuds and things like that [laughs] shepherd’s pie and things like that [laughs]. My husband, it was so hard on my husband. It was like he was, he was having to do, you know, get up, do the bits I used to do. Go to work. Come back and do the bits I used to do after work. So, he, he’d taken on everything what I used to do. Even the financial side of things that I, I just couldn't handle it. Organising everything and not just me. You know, the whole family. My son, he has, he’s still a carer as well [laughs] They’re all employed, full time employed and they’re having to fit taking me to doctors and hospital and making sure I’ve got something to eat. They’ve got a routine where they ring me in the morning and my husband’s got a routine where he has to make sure I’m up. And if he knows I can’t wake up, I’ve relapsed. I’m in a relapse. I can’t wake. I can’t move. Can’t do anything. And he’ll, he’ll make sure that my medication’s next to me.

He’ll make sure that he’ll have like fruit and things, things what can’t perish, you know, until I can come around and have something to eat but because I’m now diabetic, he’ll, if he’s left the house and I’ve not opened my eyes or responded, he’ll ring me before you know, before he starts working properly. And this is the routine for them all. They will ring me, make sure I’m up to date with everything. Have I eaten? Have I not eaten? Have I got lunch? Have I got a sandwich? If I can’t get out of bed because there’s days when I’m just bound, bed bound they all chip in to make sure that’s-, and if they can’t do it, they’ll make sure someone close to me can do it that lives round the corner or something. So, it involves not just my family, it involves other families as well. And it involves not just those in the city, but those outside the city. I’ve got people ringing me from the US. I’ve got my relatives ringing me and you know, people from Jamaica. Everyone’s on the case to make sure I’m okay throughout the day. Everyone.

I had a particular incident, you asked me this [laughs]. It’s a long while. I hadn’t seen a relative for gosh, say like from the winter 2019 up until what are we now October, up until September this year. And when she, when they saw me, they, they planned, “You need to get a builder in. You need to get downstairs bathroom. You need to get a wheelchair.” So, this is, this is just by seeing me for a few minutes. I didn’t, I might not realise how much I’ve changed. You’ve not seen me before. Anyone who’s not seen me before wouldn't realise how much I’ve changed. But to someone who knew where I was, for them to be saying, “You need to get a wheelchair. You need to do this; you need to do that.” My body has changed. And for me on the receiving end, it crumbles, you crumble. You absolutely crumble. Someone’s organising a stair lift for me this week, you know.

If it’s, it’s more than helpful because if it wasn’t for my family, I would need carers, you know? If it wasn’t for my family being able to shop for me, people cooking for me, I would actually be in trouble, so, you know, I’m smiling and everything but let’s not take it for granted. People around me are not in my position and we need to know more about the charities what are there to help us, things like that. We’re disabled. We don’t realise it until, I realised it by speaking to occupational therapists. You don’t realise it because we’ve never been through this before. You asked me earlier on, you know: "what did you think when you were told about Long Covid? " I didn’t know what to expect. I didn’t know Long Covid would mean you’re disabled in the end, whether it’s temporarily or, you know? So, it, I’m smiling and laughing but there’s a lot of people in trouble out there.

It was, it was quite frustrating because like because our mum couldn’t do anything, and we couldn’t really do anything, and I had to get used to our brother’s cooking, which was an experience.

What sort of things did he make?

A lot of stir-fry, like a lot, a lot of stir-fry, like multiple times a week…

Was it?

Yeah it was, it was really.

Yeah, but you didn’t enjoy it to begin with?

No.

Has he got better?

He has, but he’s still not amazing.

And then, yeah, so that was kind of end of February beginning of March and then I was at home for all of March and about half of April because I just couldn’t, just, well I wasn’t allowed out and to be honest there was nothing I could do anyway even when I wanted to. And I was kind of struggling on like making sure that tea was prepared and stuff like that but on I normally, have Tuesdays and Fridays off those are my days with [daughter] and bless them my mum and [husband]’s mum just stepped up and came and took her, so she was then having an extra like two days out of the house and then [husband] was having her for most of the weekend and I wasn’t really doing anything at all.

And then, yeah, so that took us up to like kind of mid-April…and then what happened after that, can’t remember, let me think, and then in about May time I finally was like this is getting ridiculous like I still can’t walk down the stairs without getting breathless, I can’t hang out the washing without getting breathless. I can’t do anything. I’m still getting loads of chest pain. I can’t walk more, like I can barely walk to the corner shop and back, this is ridiculous. And like I do elderly care, I was like most of, my patients would be lapping me right now, this is embarrassing.

So, we got to May time and he, he started to improve a little bit and I think that was just a time probably was taking a few different medications by then, but not entirely sure that they were, were helping a lot. So, through the summer he was a little bit better and the summer was, was easier, because his older brother was at home. And his older brother had finished his university degree. And he was, and had was going onto Cambridge to do a Masters. But he had a four month break and he would have gone and done an internship or got a job except he knew what was going on and so he decided not to do that. But he was at home during the summer which was really helpful for me so I was able to just go to work without worrying about [son]. And I also picked up lots of extra shifts so that I kind of built up a little bit of time off in lieu so I could use it later. So, through the summer that was good.

I think just before my mum was diagnosed she was still in the same state but it was mainly because she practically almost became bed bound we told her just stay up, because we have a two floor house, we told her just stay upstairs don’t come down the stairs as it was really hard for her to come down the stairs itself and go back up, so we told her to stay upstairs, stay in the bed except if you need to go bathroom. And then after the family kind of took over the house chores, mainly because before my mum would do the majority of the cooking and we’d help out and my dad would go to work, but then again, my dad goes to work and all of us shared like the household cooking and, and cooked food for her.

Sometimes she’d be adamant that she wanted to help out herself because she’s just used to like doing cooking food and she’s like you’re not doing it properly but at least for more than a week while she was still in that state, we did the cooking and I think it helped that it was in the school holidays or just after the, none of us were really, really busy. If it was now all of us would be like preparing for our mocks and my dad has an interview coming up, it would have been really hectic, and then all of us helped out, we kept the house clean and just made sure like if she needed anything she’d have it.

So, a lot of it would be my dad just going to get the groceries before it would be my mum and my dad, they would go together, go Lidl, they often go Lidl to buy like random stuff that Lidl has for sale but then it just be my dad going and telling my mum here’s the booklet see what you want to buy. My role, it’s not more roles it’s just helping each other out, so say my dad like ‘lets cook this dish today’ and help him with cutting the onions and my other sisters, if they’re free because there’s four of us so if they’re free we help our dad or we help each other like that.

I think overall we just have a better idea of how to like care for our mum, because in the end when we’re sick our mum always cares for us, she has, she knows what to do, she’s like if you’re sick put like a fever pad on your back or drink this tea and that tea, but for us when our mum was ill, which she always is, we had no idea what to do. I think after she got Long Covid then she became completely dependent on us and then through that we’ve learnt as well how to actually care for our mum and if our dad he does, but if he doesn’t, but then we know better how to look after her and cook for them.

Or, you know like say for example is my mum will go, no I don’t need any help but it doesn’t mean you don’t give any help, you still help her, be adamant, yes you need help, before I, especially for me I would have said like oh she says she doesn’t need any help, so I won’t give any help but and now I’m like I don’t know what she’s thinking inside, I’ll still help her, it’s like that we’ve grown a better attitude to how to care for each other.

And so for me it’s just, you know, I’ve just been trying to look after them go to work, keep the house, you know, do basically everything in between because of the impact that it’s had on them and for a long time we had very little, we had no support in terms of what we were trying to manage and because of our living situation of where we live we’ve got no family support either. 

We don’t have any support. My family actually live in the UK, so they are obviously not here, and my husband’s family are on the island: his two brothers work full time, so there’s no... you know, through no fault of their own, no support there, and his parents, one works away, so he works and lives in Colombia, and my husband’s mother is paralysed so is unable to care for our children at all really, and that’s kind of the extent of the family that... that are here, so, no [chuckles].

Yeah, short answer—

In a short answer, no, yeah.

Yes, but he’s not very well, either. But I was able to support him actually within the last two years. I do a lot of his medical advocacy because he gets a lot of confusion. So, not only have I had to sort stuff out for myself, I’ve also been helping dad. I obviously just got him rehoused recently, which was huge amount of energy. But in a way, now that I know he’s in a safe environment, it’s a lot of weight off my shoulders because I was worried about him falling and nobody knowing that he’s fallen and so now he’s in a warden supported flat, locally. Yeah, but he’s very poorly himself. He’s waiting for a big operation on his spine and his hips. Yeah.

Are you able to visit him more or not?

So, it’s difficult to visit because I have to get a taxi there and a taxi back now. But we do see each other probably once a week or we speak every day. I’m very lucky that mum and dad still have a nice relationship. So, sometimes mum will have him over for dinner which is nice. We all just get together in our room. It’s quite easy. But he needs lots of help. I was always his [inaudible]. So, that’s been hard because I’ve still tried to do it while I’m unwell. My brothers don’t deal with things like that very well. I have asked them you need to step up because they can see I’m not well and I wasn’t coping very well.

When I feel better, I do otherwise I lay down on the sofa for myself, inside the blanket. I feel tired. Even my mum, she has dementia. She says, “Why you always sleep?” When I say something she forgets you know, dementia patient she is. So, yeah.

Yeah and when you are really tired, can you still do the activities that you need to do around the house like cooking, cleaning, taking care of your son?

I do rest, I have rest sometimes. I wake up, I do. I take paracetamols that give me my body pains that go. I do. I have to do if I’m ever tired. I have to do it because when you come from school, my mum, she need her food. Even carer comes to help my mum and me. Now she came and she prepares everything for my mum. Yeah.

Okay. So, are you the only carer, apart from the carer who comes in, you’re the one who cares for your mum and your son.

Yeah.

Do you have any other help other than the carer?

No, sometimes when I need to go out to do shopping, I call my sister to stay with my mum.

No, I don’t tell him that. I don’t make him know. But he can see me, I’m tired and he help me go shopping. He carry the bags for me and he helps, you know, yeah. But I, I’m trying. I’m not I’m trying to do my things. Even if I feel weaker, I try to do my things. Otherwise, you will feel disappointed. You, you, your confidence will go and you know, you have to try whatever you feel.

How are you feeling mentally about it all?

I feel like you know, there’s there, there’s no happiness like before we used to chill, we used to meet together. Everyone you see that’s afraid of death, travelling is restricted. There’s, there’s nothing happiness like before Covid. I used to go Turkey. I used to go to Dubai. I used to call him. Now is things that changed. On top of my mum, I have to look after her. She is ill. She had a stroke. She had dementia and now she had a stroke.

Oh my gosh.

So, I’m stuck.

In terms of how it affected family, you know, life, you know again the work-life balance, home... you know, work and home-life balance is very balanced because the employer is very flexible and my wife she has got long-term differing medical conditions: she’s disabled, she’s not well, so... and I also have a son, he’s got a medical condition as well, he was born with it, he was born premature, so you know we both care. So, kind of we... it’s like me and my wife, she cares for him and then I’ll kind of care for her where I can. So, you know hospital appointments and you know there’s too much going on with everybody with... within us, you know in the family, health issues from... from when my son was born, which was 23 years ago. So, you know it is distressing when you know you're suffering as well as everybody else is suffering, and it’s getting worse, affecting you know mainly the pain and the sleep.

For me it’s very hard, sometime you do get depressed about it but then I think when I work, the... you know when you're working, busy working or doing something, your mind is away from pain, yeah, or kind of worrying about your... what you're going through, and I think it is very important if you obviously are not able to work, I’d say that you volunteer somewhere. And I have been volunteering... and in... as an additional thing since we started Covid in 2020, we opened a foodbank locally. So I’ve been helping with... you know, we’ve helped like thousands of families and you know whatnot, and until today, that foodbank now it’s actually... has become a community hub for the local people, so you know... so that... these thing keeps your mind you know away from... you could call it depression, but I don’t really call it depression, to be... well, to me depression it... it shouldn’t be there, it’s the worry basically. So yeah, so that’s what’s been happening at the moment.

Like we’re here in the [place] because Michelle needed to be near her mum because her mum suffers from Rheumatoid Arthritis and she’s then also caring for her mum, so then I, we have issues where I struggle with the balance in terms of like okay but you need to look after yourself, like you’re looking after your mum I know you’re looking after your mum but there are times when you need to look after yourself and you need to put yourself first and I don’t know whether I personally feel like sometimes I’m picking up all of the pieces when actually if you dropped that little bit over there just for a minute you might feel a bit better, but then she says that sometimes going out with her mum makes her feel normal and I don’t, I don’t want her to feel bad about it but then that causes arguments it causes upset because, you know, she’s doing what she needs to do for her mum and I get that, but then I just think she needs to be looking after herself.

But because of that I have no family here, I don't have, all my family are in Essex and all my friends are in Essex I don’t, now I’m working from home I obviously don’t go out to see people like sometimes working at the supermarket it was at least I was around other people, made me feel a bit human but now I, there is none of that, but I need to be here for them as well so. It just feels like a catch-22 all the time but there is yeah there is no, there’s no support there’s no, no-one to talk to, there’s no-one to air your concerns, there’s no-one to share your experience, there’s no-one to go oh yeah we’re having the same problems, you know, or just to make you feel a little bit more, you’re not going insane. Like Michelle sees a psychotherapist now she said it’s really helped her and stuff like, she says oh you need someone to talk to, it’s like who.

I’ve only ever known her like to the last few years, it’s only been caring for grandma and then caring for my sister. So, I’m kinda used to that now. Like she’s changed a lot since we were like little kids, but because that’s really all I remember her doing is caring for them. I don’t really know if we really noticed the changes much, if that makes sense. I came to know that it’s a bit overwhelming because she’s a bit more short-temper and just tired all the time.

So, I grew up here, but we had shared bedrooms me and my sister when we were younger and then I moved out and so then she got her own. So, coming back, I had to re-double up [laughs]. So, yeah, she wasn’t too happy that I’d taken her space back. But, at the end of the day, I needed some more space.

So, you moved back into that room. Were you sharing a room again?

Yeah.

And you still are sharing a room?

Yeah [laughs].

And how has that worked out? How have you managed your days and your relationship now?

Quite a bit of, maybe a few arguments to say the least. I mean, I think my issue is I’m still with my job and I’m very everything has a place. It’s got to be neat and tidy. She’s the complete opposite of me. She throws things everywhere and it’s that that drives me insane and then she’s just sick of me laying about, doing nothing while she’s having to do everything again. Because obviously we kind of role reversing, I’m ill, she’s ill [laughs]. So yeah, it’s caused a few arguments and my mum’s in the middle stressing over everything [laughs].

…I think the biggest thing is, you’ll lose your independence. Obviously, I’ve gone from living by myself, working by myself, travelling by myself to literally needing help to like get into a shower, you know what I mean? It’s like it just you lose that, you lose like that spontaneity of just being able to do things like [laughs]. I don’t know how to word it. It’s just, yeah, just a part of you kind of like dies a bit.

So, generally speaking, you know, like that period where it was possibly that I wasn’t getting any better. My mum came round to drop off some food for me and we were, you know, three metres, four metres apart, down the hallway. And she just saw me and she, she, the thing that worried her wasn’t necessarily my physical state. But she said it was my mental state. And it was that I was so desperate. And I, and she cried all the way home apparently on that drive home and decided that I was going to come back and stay with them. There had been some chat with me and my girlfriend about whether she, she would come up and look after me. But I was against that idea because I knew how much of a state I was in. And I didn't and I knew then instinctively that it would be a shock for anybody to, to realise that they had to give their partner so much care as well as she had to do her full-time job and deal with the boorach that I had left behind after five weeks of, of being a mess. So, I decided then it was, it was the right move for me to move back in with my parents. I said then, I remembered my mum and dad like, I’m only gonna be here a couple of weeks until I get, get better again. Here I am two and a bit years later.

Yeah, so…so, I think that both my parents have been very, very understanding and have been very, very supportive. I had been living with my parents up and to save money until I bought my flat. So, I bought my flat in 2019 so there was only about a year’s gap between me moving out and me moving back in. I was very reluctant to move back in because I had just left. I’d just flown the nest and I didn't really wanna be boomerang kid and come back, again. I think that…on one hand I think it’s been a positive because my parents have been able to see me and have been able to look after me and rather than me being elsewhere or in some unknown quantity and kind of under their, under their wing, which I think is good. I know it’s had like a you know, the amount of food that in the last sort of stuff that I’ve potentially cost them a substantial by this point, but I think that that is not in any way begrudged at all.

It’s difficult for me to say, I think, because at times it just feels like how it did before when I was living here. The dynamic is very similar. My mum has been my biggest advocate and especially because she’s a nurse kind of has helped me navigate the NHS. My dad is…it’s very sweet actually. And he’s recently been trying to read up on Long Covid and treatments and stuff. Which is just very sweet, very nice of him. I… and my younger brother he’s looking for work at the moment. Like, you know, my family have been incredibly, incredibly supportive, you know, everyone has. And if it has caused, I don’t know if it’s me being, I don’t think me being at home has caused any issues at all. I think in some ways it’s almost better that they’re able to see me on a day-to-day basis. And basically, being my carers isn’t something that has caught them off guard, they’ve taken it in their stride I think they would like it if I could walk the dog more [Laughs]!

But really that’s the only, you know, I think that’s like I’ve been given a lot of freedom and a lot of autonomy. And I think, you know, obviously my condition has been a great deal of worry to the both of them. And occasionally I will say something to my dad, and he’ll just be like, [shakes head, exhales] “God”, you know, like it all…like it’ll hit him, you know… But I haven't felt a sense of any sort of resentment or anything because I’ve moved home. There isn’t any sense of I’m not paying my way or anything. It is, you know, a long road I’m on, but I am very grateful and thankful that my family are not, are like the one of the biggest supporters that I’ve got.

Yeah, so, so I didn't need help with showering ‘cos usually I would be able to find a window at least once a week for ten minutes to get myself under a shower when I was at my worst. But yeah, there, you know, the vast majority of, of the food that I eat isn’t prepared by me. And, you know, like tidying the kitchen away afterwards sounds it’s such a small thing. But at times would be over, overwhelming for me. Like my laundry like all the housework like I don’t touch any of that. I can make myself food. I can do bits and pieces. But it’s with, not, not necessarily consistently. You know, there have been times where I’ve skipped meals because I’ve been too tired. Or too busy in other ways and I just don’t have the capacity to put, to eat. So, yeah, in and you know, I would joke at the start particularly like you know, as if I’d regressed back to being 12 years old again in terms of what, what my parents were doing for me. And, I mean, yeah, it’s true, it’s true to a degree. And that’s, it’s not easy like it’s not easy to sort of find that your independence and your autonomy is curtailed like that, but it’s much better than me trying to do it all myself and causing an injury.

I was unwell altogether for about seven weeks. In the seventh week I was starting to be able to walk around the house. Walked to the end of my path outside and back again. It had really taken it out of me. I was bed bound for most of that time. And I was living in a shared flat, but my family made a decision to move me home because it was up three flights of stairs and they didn't want me getting stuck there as my flatmates were keeping away from me, just in case it was Covid.

And yeah, January 2021 through to February I was covered in shingles all throughout my head. So, it was kind of like one thing after the other because my immune system was just so weak and I decided that, that Christmas that I’d have to give up my flat because I was getting stuck in the flat and unable to shop for myself, cook for myself. Get up and down the stairs and that was quite dangerous. So, it’s a really difficult decision because I tried that whole year for my flat. It’s like a light at the end of the tunnel to get to make the decision that I’d have to move back home ‘cos I needed their help.

So, when I was acutely unwell my mum was physically caring for me and so she’d have to bathe me and wash me and wash my hair. Be cooked for—she did everything. As I’ve said, you got stronger. I can branch out independently like cut my hair shorter so that I can wash it and do it myself. And I use a shower, a bath board on the bath. So, I can sit. But when it comes to cooking and things like that, still really struggle because I can’t stand up either the hob, the heat and the standing for too long. I just get super dizzy. So, I can’t actually help much around the house. And going from running your own house to coming home and not having any involvement, I actually felt really guilty a lot of the time because I mean, I don’t, my own way, a young adult, but I can’t help around the house. And now that everybody is back to work, as it wasn’t when I was acutely unwell. It just feels really tough that, you know, it’s a busy household and I can’t do the things that I want to do to the point where I’m like my nephew will come home from school and I will get him something to eat, but he will quite often help. So, some days just lifting the kettle, I find it really hard. So, he will fill it up and put it back in place to make what I need hot water. And he’s become really helpful. But, I suppose he’s ten, it’d be good for him to learn things like that. But, at the same time, I should be able to do that for him. Yeah.

Yes. Like I moved back in – like before coming to the UK, I did a five-month internship in a town close to [place], which is like new… and there I lived on my own, then I moved back into my parents because there was no point in searching for accommodation for like two months until I go to the…until I start my studies in the UK. But, yes, it wasn't planned that I’d probably move back in, of course, yes. Of course my parents and myself was, I think, pretty shocking at first. Like, I come back sick and need care and yes, like before I lived basically on my own. I got a scholarship and I worked to finance my studies so they like – like I basically contacted my parents here and then but I was basically living my own life before, like Long Covid happened to me.

So, you were very independent then. How has it impacted your relationship with your parents?

Yes, I don't know. I think it's stressful for both of us because for them, emotionally, they don't know. You know they want to see me succeed and now I'm here, can't finish my studies, no idea what the future is going to look like. And for me personally myself, like myself suffered heavily. In the past I was – like I really enjoyed my studies and I like geography and was looking forward to do my thesis and then go on to do a Master's degree. And I was already searching for universities to do my Masters when I got sick so yes. Like basically my whole image of myself basically destroyed because like normally or basically, I was never good at doing like sports or doing like manual labour or things like that. It was always really not skilled in any kind of those fields or arts or anything like. I always liked geography in school. I wanted to study it, I studied and enjoyed it and yes like it made up a huge part of myself. Like I was into it and enjoyed it and basically my whole previous life ended at the moment. Like I would say 70%. Yes, in past I enjoyed cooking for myself and that's one thing I still got ‘cause I can now cook for myself and my parents to help them out which also gives me a better feeling to not be like just sitting here doing nothing. That's terrible.

It made my mum super anxious, and they kind of like coddle me and baby me a bit, which I'm not complaining about, it’s quite nice, but I would say it hasn't made things in my family that difficult, like I'm quite lucky to have quite an understanding family and they're really willing to help me and stuff, and we all help each other, the only thing I think it’s changed is just anxiety levels, like my mum just gets worried about me doing certain things, but that’s all really.