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Talking about death

Dont know how to reasure an 11 year old who does not have asthma that i am ok as i have asthma and its getting bad but will get somewhere with it. She had nightmares about me dying and is pretty scared so i really dont know what to say to her to reassure her about this. Any ideas or advice would be much appreciated

Nb shes my little (half) sister and our father passed away and she is living with her mum and me in uni accommodation but her mum doesnt reassure her and i visit her every month but she is just demanding to see me more and more as she is so scared

1 Reply

You'll know her eotional age better than I do,obviously, but these are just my personal thoughts.

She's right. And she has every right to be scared. Asthma can and does kill people and if she's a smart kid she'll know its an option. so there is no point telling her ""I am not going to die"" because she will (correctly) know that that is a promiseyou cannot keep. Lying to kids doesnt help, because they usually know, and then will assume you're lying to hide something even scarier than the thing they're thinking (or why else would you be hiding it). I once spent an entire day thinking my dad had died on a caving trip because no-one was willing to tell me a friend had died and so insisted everything was fine. I assumed therefore that they were lying because something had happened to my dad. Kids are smart.

You need to establish as specifically as possible what her fears are. It might help her to know exactly what she would do if something happened shile she were there. A very detailed, specific (possibly written down) plan of EXACTLY what she would do if you got sick, and as many eventualities as she can think of (you're an adult - you can probably think of morepossibilities but that'll only add to her brain load, its the things she's worrying about that matter). Then there is no stress of ""Yas is looking out of breath...should I get her inhaler? should I ring for help? should I ask her if she's ok?"". She'll likely feel better if she knows what to do. I don't think 11 is too young to have a role, I would consider it too young to be the person deciding when you need an ambulance, and if I were you and ever had difficulties around her I would be pro-active in calling for help so she is never dealing with someone who is unconscious. I'd also talk her through exactly what she'd say if she were ever to ring 999 for you, and potentially where any medica information is kept (i personally keep a sheet in my phone with my details - means no-one with me needs to know anything other than the location of that sheet!

She may also feel reassured if you have a system when you keep her up to date with what is going on. She possibly spends a lot of time going to bed and thinking you're fine and waking up and you werent. If you had a way to tell her that things aren't fab then its less out of the blue. For you, you'll pick up on the subtle signs and changes in your breathing, she has no clues like that, for her, every attack is sudden and unexpected and scary for her. If she is old enough to deal with that, just a text to say, ""not having a fab day"" or ""feeling good tonight"" so that she can have some level of reassurance. You'll know if the frequency of which you're ill is going to be too much for her to handle, and if it is only going to stress her more then maybe it isnt worth it.

In terms of the fear that you will die, don't promise her you wont, that isn't a promise you can keep. The best thing I can think of is to explain to her why you think it is unlikely. Explain that things aren't well controlled (she'll know that) and that because of that you are being closely monitored. Explain all the different things the hospital can do to keep you alive (including breathing for you - as an adult you'll know that being intubated aint a fab outcome by any stretch of the imagination, but at 11yrs being told that they can ""breathe for you"" is a huge reassurance) exaplin when and why you do different things, and the mechanics of what happens in an attack - and how different medication counteracts that. Tell her that it feels quite scary but there are lots of things they can do to help. When she visits in hospital its good to put on a brave face, trying to look well etc. If you're feeling utterly dreadful maybe ask whoever brings her to keep the visit short so you can maintain energy, but its ok to tell her if you're tired or hurting or whatever. My nieces are a bit young to visit me in hospital, but the eldest definately worries when I am. As I live away from home she doesnt know about every admission, but she knows some, and we occasionally skype for 15mins or so - i can keep up a good show for a short burst and she can see that things aren't too bad. That actually often, on the meds in hospital i'm usually fairly 'well'.

It can also help to have a 'sisterly whinge' about really trivial bits. She's too young to be sharing the really scary details, the horrid bits that I find scary to even think about inside my own head, but she's old enough for you to have a whinge that they kept stabbing you with needles, she's old enough (and may be amused) by the idea of having to have a top off to do an ECG ""omg! It was soooo embarrasing"" or a moan about how yucky hosptial food is ""it's like they're trying to starve me out"" and actually, the more you're complaining about really trivial things that she can relate to, the less scary it seems. Lots of reminders that your chest hurts, that you cant catch your breath, palpitations etc are all scary things she cant imagine, and she'll notice those things in you as you walk around the house etc. But if you're only complaining about trivial things it'll come across as them being the main issue and the scary stuff bothers you less, and so is less scary. DOes that make sense>

Talking is important, remind her that she can ask any questions, but that sometimes you might have to think how best to word the reply. My ex-bf's little niece was going through a really tough old time when we were together and she sat down with me and we had a bit of a chat (the only female role model around at the time other than her nan who was the one she was fighting a lot with) and she asked a lot of questions and some I did say ""i'm not sure how best to answer that, can I write it down and I'll answer tomorrow, or email you"" and then i could have a proper think about how best to word it, and often talked to my ex- about what he thought I should say so I could give her the best answer possible. She also was happy for me to read her diary, in fact, she often pointed towards pages which she wanted me to look hrough for the bits she couldn't explain well out loud. It might be easier for your sis to write you a letter, and she might feel less 'silly' doing it like that as kids can be shy expresssing concerns and fears etc.

in terms of death, as I say i'd never say ""i'm not going to die"" but it can be reassuring tohear ""i really honestly dont think i am going to die because...."". My dad made a big deal of never lying to me, and so as a kid who had a lot of anxiety issues we had ""almost promises"" where I would get upset and say that i needed him to promise that x,y or z wouldn't happen and he didnt want to lie to me, or make a romise he wasnt sure he could keep, so he'd make ""almost promises"". For me that was always enough. As it happens, thus far he's never broken an almost promise, and i've always been happy that its not going to happen if he's almost promised it. I'd avoid going into too much detail, only go as far as she really pushes for. Where possible i'd answer a question briefly and clearly and then explain why she doesn't need to worry. (a lot of my anxiety as a child was just that i'd not find out something had happened to my dad"" and so he would say ""well, the police would know who I was based on my car registration or my address, or whoever was with me would know. My parents are listed as next of Kin and they would know to contact your mum and she'd tell you - but there isn't any reason to worry about that as it's just so very unlikely to happen"" and then we'd carry on). The fact of the matter is that it won't be at all ok for her if you die. And talking about it a lot won't help. Discussing what she'd do if you die isn't going to stop it happening and actually thats the main things most kids worry about. It isnt that they're scared that they wouldnt know what to do if you die, its that they so very much dont want you to die that they want to know it wont happen, so the valuable coversations are the ones about how to stop you dying, or why it is unlikely that you will die. Thats why any concerns about your death should be addressed quickly and then moved on from as it's mainly going to be counterproductive to keep bring it up.

If she has real issues then it might be worth ringing the AUK nurses, or possibly even someone like Macmillan (they'd not be the right people to help directly but I bet they'd know who would be able to help) to give you a bit of adive about how to talk to kids about it, I am sure there are charities that wor with kids with family members who are sick and who are therefore trained to know how to talk to kids about this stuff. If she starts worrying obsessivly, not sleeping, getting into compulsive behaviours, stopping eating, becoming agreesive or angry (towards self or others), strugglnig in school, socialising a lot less then she should see her GP. Kids can get anxiety problems, in fact, I was about 11yrs old when my anxiety kicked off big-style and I got quite poorly with it. It is possible there is an underlying anxierty issue and the asthma has simplybecome the focus of it (it can be the case that actually the asthma has nothing to do with it, if the asthma went away she would just find something else to worry about to the same extent) and this could potentially be addressed by CAMHS which needs a GP refferal.

Hope things go well!


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