Flu or Flu-like illness in chronically ill or disabled children
Home and social life
Daily routines, home life and holidays can be affected when a child is ill with flu or flu-like illness, even more so if the child needs to stay in hospital and is frequently ill. The parents we spoke to told us how they managed their home and social life during these periods. Some families were more affected than others. Parents’ work schedules affected how they could care for children and some had flexibility to work at home (see ‘Work and finances’). Some parents took annual leave or unpaid leave to look after their child until they recovered.
How did you manage when sort of she had to stay in hospital for several weeks?Lyndey says that looking after her three asthmatic children when they were ill with flu-like illness would be ‘extremely difficult’ if she was working.
Lyndey says that looking after her three asthmatic children when they were ill with flu-like illness would be ‘extremely difficult’ if she was working.
When Amy was younger, her mum used to stay with her in hospital until she fell asleep at night. Then she would go home so that she could get her other children to school in the morning.
When Amy was younger, her mum used to stay with her in hospital until she fell asleep at night. Then she would go home so that she could get her other children to school in the morning.
It was quite hard, because obviously she’s not an only child. I’ve got two other children, and one of her sisters is only 15 months older than her. So if Amy was ill it would be a rally round to see who could have my other daughter and my son and nine times out of ten we’d have to phone the hospital and say, Amy’s burning up, what do we need to do? And cos she was a direct admission we’d literally take her straight to the A&E where she’d see the paediatric doctors instead of the normal A&E doctors. So it was just a lot more running around.
So she, presumably she had to stay in hospital for the whole period.
Yeah.
Five days.
Yeah, that was a long time ago. That was when she was quite small. She hasn’t had anything like that for a good few years now.
Did you stay with, were you able to stay in hospital with her?
I didn’t stay in, purely because I had to get home for the other children and my husband goes to work early. So, I used to sort of leave there at eleven o'clock at night and then go back in the morning. But I think because Amy spent the majority of her life in hospital at the beginning, anyway, it didn’t matter that I wasn’t there.
She was used to it?
Yeah.
For you as a parent, how was it leaving her in hospital and having to come home and were you worried, anxious?
Ooh, I think at the beginning it was really hard, purely because obviously she spent the first four months of her life in hospital anyway. And I couldn’t stay there anyway. So I think it was just something, as a family we all got used to. My other children had to be considered. So, Amy just had to stay in hospital on her own. Obviously, I’d phone in the evenings, if I wasn’t there. But nine times out of ten I’d literally, I’d wait till she’d fall asleep before I’d come home and then I’d sort the other two out in the morning for school, I’d get back to the hospital. Flu-like illness affects Arthur’s sleeping patterns. His younger brother stayed with his ( semi-retired) grandparents so that Sarah could concentrate on looking after Arthur.
Flu-like illness affects Arthur’s sleeping patterns. His younger brother stayed with his ( semi-retired) grandparents so that Sarah could concentrate on looking after Arthur.
Yes. Yeah. Because, because he can't - because it's all stuffy, he can't breathe. So, and especially with the tonsillitis, his throat's sore. So if he's only breathing through his mouth, he's - then that gets dry. So yeah, we pretty much don't really sleep much when he's poorly. He's not the best of sleepers anyway. He's, he's, he wakes three, four times in the night, and we have to resettle him, so at the best of times. But that's purely because he just wakes. But yeah, when he's - when he has poorly, when he has flu-like symptoms, he's, his sleep is pretty much - which doesn't help with the recovery, of course. Which makes, takes it - makes it much longer, because he's tireder. So then the daily routine goes out the window, sort of thing, because he might sleep for a couple of hours during the day, then wake up, then another couple of hours. So then because he's slept during the day he doesn't sleep at night.
Those occasions in which you have had to stay in hospital with Arthur, how you have managed?
Purely, I - we ship - we haven't had one while we've had [daughter], yet. Because this was last year. So we had [younger son]. But my parents - both semi-retired as well, which is quite cool, and very lucky - so we've kind of shipped [younger son], and they've had [younger son]. And then I've just solely been able to concentrate on Arthur I'm lucky enough at the moment that I don't work. So I haven't had to worry about the whole calling in to work side of things. So yeah, we've just - we're very lucky that we are just able to focus on getting Arthur better.A good support network has helped Ella’s parents to manage their family and work schedules when Ella is ill.
A good support network has helped Ella’s parents to manage their family and work schedules when Ella is ill.
Yeah. Either I will take Ella to the hospital, and my wife will stay with our other child, until say perhaps her mum and dad are around and the can have [sister]. And then [wife] will come to the hospital to see us. Or vice versa. Or even if, for some reason if our - my wife's parents have got Ella, they're looking after Ella that day and she becomes unwell, they know the procedure, they know her just as well as us, if not the same. They know what, what to look out for. And they just phone us and say "Look, obviously don't panic or worry, she's not, she's not been well. She's at the hospital, just get here when you can, sort of thing, and we'll talk you through it, etc." So we, we have got a very good support network in terms of it doesn't really interrupt our family life too much.Alfie is immunosuppressed and would frequently get a temperature and need to go to hospital immediately.
Alfie is immunosuppressed and would frequently get a temperature and need to go to hospital immediately.
Mirella’s husband works shifts and can look after the children Monday-Wednesday if they are ill. She took unpaid leave to visit her family in Finland because she had used all of her annual leave to look after her children
Mirella’s husband works shifts and can look after the children Monday-Wednesday if they are ill. She took unpaid leave to visit her family in Finland because she had used all of her annual leave to look after her children
Right.
To look after, obviously I don’t, we don’t get any paid leave to look after the children. Obviously if we’re half the way through a day there’s an emergency and you have to attend, you can go home and, and that’s fine, but the following day you either take unpaid leave or annual leave. What we’ve done that yeah I use my annual leave to be home with, with them which means then that I haven’t got annual leave actually, to go on holiday. So there’s been a few years now we haven’t had enough days left for holiday. So this year, for yeah there was financial impact as well that I have wanted to go to see my family in [Country] where I’m from and I had to take unpaid leave to be able to go there because I didn’t have any holiday left. So then I guess that makes your life even harder that although I’m not off from work anymore than my colleagues but then it seems like when you quite regularly have to take time off that you are not there, but they are using the same amount of days than they do, they just take it as a holiday. I take them to look after ill children. Yeah. It’s a bit of a juggle. Sometimes it’s, I’m lucky that my husband works in shifts so he might be home on, you know, Monday/Tuesday/Wednesday anyway, so he can look after the children when they are ill, which he does a lot. So he’s, we share and then he’s taken annual leave from work to look after the children and his employer gives him a few days a year to look after children when they’re poorly. Whereas mine doesn’t so but overall then we’ll just have to juggle.Logan has not been severely affected by flu-like illness. It changes the dynamics of their family and their daily routines for a couple of days.
Logan has not been severely affected by flu-like illness. It changes the dynamics of their family and their daily routines for a couple of days.
Eliza had complications from flu-like illness frequently when she was younger, so her parents “lived in the moment.”
Eliza had complications from flu-like illness frequently when she was younger, so her parents “lived in the moment.”
Oh [laugh]. Oh, it was really hard. We, we were lucky because we had one child. I mean, I don't know quite how we'd manage it with both of them. But , we were able to take it in turns to stay with her. I was on maternity leave, which I had to - I didn't go back to work for another three years. Which was not part of the plan, but [laugh] that's obviously what had to happen. And it was, it was incredibly hard. You know, we were very - incredibly sleep-deprived for a year and a half. We didn't sleep, really. So I think we just hunkered down and just took it a day at a time. And just - I don't know. We didn't make any plans, we just - we literally lived in the moment. And whilst it was going okay for that moment, that was alright. [laugh] And then if something occurred, we'd just deal, you know. It was just literally moment by moment, dealing with it. That's the only way you can really, because otherwise everything is just, you know, everything just becomes too much. So that's how we did it.Alex can deteriorate rapidly when he has flu-like illness. Planning to do things as a family was difficult and they often had to cancel play dates.
Alex can deteriorate rapidly when he has flu-like illness. Planning to do things as a family was difficult and they often had to cancel play dates.
And, and also his, his relationship with other children because if you’re constantly having to say, “Oh no I know we said we’d come to the park but we can’t because he’s not well.” And “I know, oh sorry I know you were supposed to come around to play but you can’t because he’s not well.” And then and children get fed up. You know, they’re fickle things [ha]. And if the happens a few times they think, oh well I won’t bother with him them [hah]. Cos you know there are other children I can play with who actually will turn up. Daniel’s parents have frequently had to cancel or reschedule family events as a result of flu-like illness, including his christening.
Daniel’s parents have frequently had to cancel or reschedule family events as a result of flu-like illness, including his christening.
Christening.
I, we’ve had to cancel a birthday party in the past because he’s been ill. Things like that, or we’ve had to say we can’t visit for example my Granddad if Daniel is, he has a cold or a chest infection. Even if he’s on the way to recovering because I don’t want to expose my Granddad to that type of infection. We would prefer to stay at home and not, than to do that. So we’ve frequently had to change our plans for doing things, in terms of impact on myself and my husband.When Louise’s son has flu-like illness, she has to check his blood sugar levels every two hours through the night. She says it affects the whole family and “everything comes to a standstill.”
When Louise’s son has flu-like illness, she has to check his blood sugar levels every two hours through the night. She says it affects the whole family and “everything comes to a standstill.”
And this is sort of when he’s, apart from this one, it’s when he’s ill that you have to check every two hours.
Yeah, yeah, the main advice for their consultant is every two hours and that’s day and night. And, even if it were a flu or the gastro where it’s low blood sugar levels you have to both check, any sick days it’s two hours through the night.
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