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Epilepsy in Young People

Living arrangements and safety with epilepsy

Some of the young people we spoke with lived at home with their parent(s), many had moved away and lived in shared houses, on their own, or in a residential college. Here people talk about their different living arrangements and thoughts on safety.

Living in a shared house or halls of residence

Many people we spoke with were studying at college or university and had moved away from home. Most lived in shared student houses or halls of residence. We also spoke to a few people who lived at a residential college for young people with complex epilepsies and learning difficulties.

Most people in shared houses had told their housemates about their epilepsy so that the housemates knew what to do if they had a seizure. Many said that this made them feel safer because they knew that their housemates would 'keep an eye' on them. One woman shared a house with trainee nurses and said she felt really safe with them around. 

 

Nick's flatmates at university were great and knew what to do if he had a seizure.

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Age at interview: 21
Sex: Male
Age at diagnosis: 15
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What about otherwise, did all your flatmates know about your epilepsy? Or did they need to know?

I think they were aware of it, yeah, for the most part. I'm pretty sure that the people, the girls in the top flat weren't that aware of it, they weren't aware of anything to be honest. If I was being brutal. But anyway. But certainly all my flat mates knew about it, the lads who lived on our side of it, the three lads were definitely, knew all about it. Knew what to do, what to deal with it, the lad who lived exactly opposite me he was, he actually, I remember actually, I actually collapsed, he picked me up and actually carried me okay, this lad is like 14 stone, then although I'm a bit lighter now actually I have to say, I was like 18, 19 stone of man, and he dragged me back to my bed. That is a man you've got to love okay? Dragged me back to my bed, called my parents, got me ice, got everything cooled down, and you know, I've just gone like that. And lots of people knew I had it, people knew cos they'd seen it happen or they'd said, 'Are you coming out?' 'Well I can't come out just yet because Nick is just getting better.' And stuff like that you know.

One woman hadn't told the people she was living with about her epilepsy because she was worried about being labelled.

 

In the past, Zoe didn't tell people who she lived with about her epilepsy because she didn't want...

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Age at interview: 22
Sex: Female
Age at diagnosis: 16
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I've been very naughty in the past and I haven't sort of informed the people I'm living with [laughs]. Which is why it came as the greatest shock to them if something did happen. It took me a very long time to even come out quietly, a casual hint, not sort of coming up to them, greeting hands, 'Hello, yes we're going to be living together, this is my label, I'm an epileptic.' 

A couple of people said that their housemates hadn't been very understanding about their epilepsy or them needing to go to bed early, for example. One woman tells of an incident which made her to fall out with her housemates:

“They [housemates] got a bit funny with me once. I had a seizure in the shower. I'd knocked the shower head out and all the water started running down through the electrics, and they blamed me for that and tried to make me pay for having the electrics rewired. And I was like, well it will be covered by the insurance, but yeah; that was 'my fault' as well.”

A few people felt they were a burden on their housemates and didn't think it was right for others to feel responsible for them. 

Those who lived in a residential college, said living there had helped them become more independent and learn a lot of important life skills: cooking, cleaning, being in charge of their own money, planning a budget, and making appointments by themselves. 

 

Simon has learnt to do many things by himself at the residential college.

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Age at interview: 21
Sex: Male
Age at diagnosis: 17
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So what sort of things do you do, you know, on your own here in this house now?

Simon' Like I do my washing, cleaning, I, I cook my own dinner myself. Yeah so, I do…

Keyworker' Plan your meals don't you?

Simon' I plan my meals every day. Like we do on a Monday we get a certain amount of money and then we go out to town and buy the ingredients for it, I do that all myself, like for the first time last Monday, I, when we went to the supermarket and I went round and did all the, got all the ingredients for myself, and I had a shopping list and I sort of looked at my shopping list and went round getting what was all on the shopping list, paid for it all and, brought it back here and put it, you know put my name sort of on it and put it all in like the fridge, the cupboard, the freezer and all, and all of that.

And then you'd cook it yourself and?

Simon' Like we, we cook a different meal each day and yeah…

Yeah so you planned sort of everything on your own and?

Simon' Yeah.

You have to make sure that the money lasts, and it's enough and?

Simon' Yes, we do.

Yeah. Do you enjoy that? Do you enjoy being, that independent?

Simon' Yes I, yes I very am. I do sort of enjoy doing things on my own, I enjoy, sometimes, my friends from this hostel, I enjoy doing travel training with them like going, like sometimes we walk up to the village together, and do a bit of shopping up there and, and then like say, we would walk from here, go by ourselves, and then we'd have someone from the staff shadowing us and, doing it together.

Many who lived in a university hall of residence said they got a lot of help from the university's disability office, which had made sure their rooms and living environment were as safe as possible. A couple of people had been able to choose their halls because it was important for them to live as close to the university as possible, in case they felt ill or tired. (For more about other forms of support young people had at college and university see 'College and university').

 

The disability office at Nick's university was very helpful and even had a free landline...

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Age at interview: 21
Sex: Male
Age at diagnosis: 15
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I've got a lot of contacts, quite a lot of contacts actually from the lady who is the disability support officer at university., she made sure I kept up with regular e-mails always asking, how, the first thing she would ask was how I was, how I'd been doing, there's some more information and so forth, and one of the first things she did was as soon as I mentioned a concern she would think you know okay I'll get back to you in a couple of days, a couple of days later she would come back with a solution. One of the problems was, I couldn't contact my parents inside the halls, no reception. Which is a bit of a design fault for the buildings, but that's not the point. So she made sure she got somebody to come by, install a phone line; install a phone in my room. No charge, university covered it completely, so whenever I had a fit all my friends had to do pick up the phone, press the quick dial button, got my parents on the other end of the line. I thought that was just absolutely brilliant, so I mean I was very lucky there.

 
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Holly stayed in a hall of residence for disabled students. It was really practical and she made...

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Age at interview: 26
Sex: Female
Age at diagnosis: 18
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It was also really great because it [halls of residence] was a three minute walk from the department, so I could crawl out of bed and like you know with five minutes before my class and still make it on time, and that was quite handy actually because I think on the dark days, when you're not feeling very good for you know because of seizures or because of medication side effects or, because of hangovers, or, because of I don't know, whatever, sometimes you know if you knew you had to walk for twenty minutes to get there, you probably maybe wouldn't bother. But it kind of did maximise my chances of making it and it was really close to the library and yeah it was really central and actually it turned out to be not such a bad thing as well, because all the people were awesome people you know, and they were my friends and it was such a beautiful place to be, I mean I've never ever lived anywhere, so supportive. Everybody you know really was rooting for everybody else, and helping each other, and even though everybody's impairment effects if you like, or experiences, or needs and everything were so very, very different, we all felt pretty united, and that was kind of a really nice thing, yeah I really did enjoy being there.

Living alone

A few people we spoke with lived alone or with a partner. In particular, those living alone had to think about their safety and make adjustments so that their homes were safer for them (see 'Risks, injuries and SUDEP').

 

Living on his own has made Ben more responsible. He lists the adjustments he's made to his home:...

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Age at interview: 22
Sex: Male
Age at diagnosis: 14
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Ben' Living on my own I think has not only helped with responsibility but has also helped with maturing me a lot and making me realise that there's more to life, there's things that you have to do, managing your money, all sorts of things like that were to do with the epilepsy. It's helped in a way that I've been able to be on my own and not have people, although it's reassuring in certain cases, not have people immediately jumping in when, say I have glitch if I'm gonna have it I have it. My place is pretty padded out I mean I can't have a bath, so I have a push button shower that turns off after thirty seconds and you just keep pushing the button. 

Dad' Got no gas hob.

Ben' Radiators.

Dad' No gas oven.

Ben' Yeah I haven't got a cooker which is a shame seeing that I enjoy cooking. So I have to deal with a timed oven, a thermostatic pan so that it stays at the temperature it is and it doesn't obviously heat up too much, and a microwave, so I've gotta be creative with those really.

Dad' Yeah it actually limits his diet really you know.

Ben' Yeah when it comes to the healthy eating.

The best that they have managed to do is, with the shower, padded and blocked in radiators, because a couple of times I've had a seizure, got stuck with my arm behind the radiator, luckily at the time my parents were there to pull me out. But if I was on my own that would be a serious issue, so they blocked all the radiators in, padded the surfaces, I have to be responsible in the fact of looking at surfaces and realising for myself that it's gonna be dangerous. For example I would love to have a glass table, but it's not practical, you know. And I think that's helped me with the responsibility as well.
 
 

Charli has had a shower put in her house and explains why she doesn't want to use radiator guards.

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Age at interview: 23
Sex: Female
Age at diagnosis: 18
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Are there other things you remember in the house except the, having the shower put in? Are there any other practical things?

Not really, I mean I do sort of be aware of like, I've got sharp corners sticking out, and my radiators and stuff like that but, I live alone there's only so much you can do. I mean the radiator guards and all that, you can have that put on but, I dunno, and I don't want them on [laughs].

Yeah, why not?

Yeah it, they, they're not the most attractive things are they radiator guards and the little plastic things that go on the edges of the table. Like I couldn't go that far just [laughs] because I like my house being like it is but, yeah, I mean I have tried to make safety precautions. Before I had, before I actually had the, the shower I used to get someone to come round and just wait with me while I had a bath 'cos I was so scared about maybe having a seizure in the bath 'cos obviously, you've got no chance, you'd just drown, yeah but, that's it really, as, with my house. Sometimes is, there's someone with me, like I make sure, I'll make sure that I've got someone round here like.

One man said that, even though having seizures on his own at home has risks, he can't 'live in a bubble' for the rest of his life. He has a safe-link alarm installed in the house. A couple of people said it hadn't occurred to them to think of safety aspects when deciding where to live or when moving out to live on their own.

Quite a few people said that they wanted to move away from home and live independently but were concerned about safety. One woman said that her epilepsy wouldn't stop her living on her own but that she would just be more aware of risks and address the issues involved.

 

Morven wants to live independently. She has looked into the possibility of having a sleepover...

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Age at interview: 21
Sex: Female
Age at diagnosis: 8
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I'm trying to work out what I can speak about what's been going on for the past few months 'cos I've moved out of my parents house now, it's, we've tried to find a way that I could be living independently but we're finding like that quite difficult, so I just don't know how exactly to mention it, you know, it's 'cos now I'm living in a hostel sort of place, I may have need to go back to my parents until I've sorted things out.

Yeah. Why do you think it's been difficult to sort of sort, sort out the sort of independently and'?

Well it's really 'cos it's, the seizures that I have, they don't last for particularly long lengths of time, and they're not serious enough to for me to have an ambulance coming to me. But it's like my mum, she gets really quite worried 'cos if I was living on my own I could quite easily fall out of bed and bash my head or something like that, and because of that she doesn't want me to live on my own in case I go and choke myself, or something like that and. So we're looking into it just now but it looks like won't be able to get a person to be sleeping over with me every night, 'cos you can get these sleepover carers but it looks like it would be far too expensive, and I'd probably have to pay for it myself, that would be impossible.

We have found out about another type of monitor that was on the internet when we were looking for other ways that we would, that I could be living, and it would be a bit better than the ones that the council has already 'cos it would be triggered if the seizure that would happen would be lasting for longer than the average one that I would take. Or if I was out of bed for longer than usual as well, 'cos usually I get up after having a seizure, and then would go back to bed and hopefully fall asleep again. So it would be quite good if I could just maybe get one of those monitors, 'cos if that could be linked to the council then if I ever fell out of bed and didn't get back in straight away then they'd be able to come out and check that I was actually okay and hadn't broken a leg or something.

A couple of people felt that there was a danger of becoming too dependent on their parents and not having the skills to live on their own. Some said that they would never want to live completely alone but would prefer to share with a partner or friends. 

 
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Maria thinks living on her own is not a good idea for her.

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Age at interview: 19
Sex: Female
Age at diagnosis: 18
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I think I'd probably try and avoid living on my own. I just don't think it would be a good idea, because if I was ill and, I didn't feel well enough to leave the house, or thought that it wouldn't be a good idea to leave the house, it would just be nice to know that, there'd be someone who could just keep an eye on me sort of thing.

In addition to concerns about safety and epilepsy, some people pointed out that they just couldn't live alone because it was so expensive that they couldn't afford to.

Last reviewed May 2016.

Last updated March 2012.

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