Full time carers, do you constantly get asked why don't you work?

[bodenbiscuit]

People ask me this in an accusatory way and it really annoys me. I'm a lone parent with 3 children, two of which have SEN and the older one is very severely disabled. She needs 24 hour care. I am up with her every night. Nobody except me and her direct payments worker can look after her because she's nearly 14 and has very challenging behaviour. Yet people still seem to expect me to be able to work in the midst of this. Do you get this? What do you say?

[chocadd1ct]

I am 'working' (as in employment) but a few years ago when I was at home I just said I a carer (if somebody genuinely asked) or (if comments were snide) offered them to look after my non verbal, non sleeping, doubly incontinent child so I can finally 'work'.

[nosunshine]

Yeah, I get this from family and the benefits office (am a lone parent on carers and IS). Most of my friends are sympathetic, as my closest friends are now those who have stuck with me and they are mostly all parents of disabled dc as well. My family have no idea how challenging DS can be or how impossible it is to just leave him (he's 16 but has a much lower emotional age).

I'm getting a lot of pressure from the Jobcentre at the moment, I have to go in once a month to see the stupid advisor who tells me I'm not doing enough 'for myself' and I'd have much better mental health if I was at work but no advice on how to deal with the lack of childcare, trips to hospital and school holidays. I just nod along with it as I need to turn up to make sure they don't sanction me, or where my family is concerned I just nod and then change the subject. There's no point putting energy into trying to change their minds or educate people if they don't want to learn.

[twinkletoedelephant]

I get it all the time... why haven't I got myself a 'little job'......

Have 3 DC 1 with DX of severe ADHD (and prob ASD but wont DX ubtill his ADHD settles a bit they want to medicate I say not while he's doing well at school). His twin with aspergers and older sister just going through the DX for aspergers.....

Funny how the people asking me won't have my children as they are very hard work..... That's without mentioning all the appointment s at hospital and school meetings .

Dh commutes and is gone 6 till 7 all day do not sure when would be able to do my little job...

I now launch into oh that's so kind of you to offer to have the children while I work... They soon change the subject :-)

[ChowNowBrownCow]

I have just left my well paid job to be my DS carer. I am not answerable to anyone. But if I do feel like giving some short shrift answer then I simply say 'right now its family first'! Havent had anyone give an answer to that other than 'yep family before work'.

[bodenbiscuit]

I'm glad it's not just me. So people just have no idea what having a disabled child means at all. I've even had people suggesting to me that my oldest dd needs to learn to live independently and that there must be some jobs she will be able to get. Er, she can't really talk, she has a IQ of around 50, extremely challenging behaviour and at nearly 14 she still watches CBeebies.

[BishopBrennansArse]

Yes. 3 kids with SN and D - DH also can't work due to sleep disruption/appointments as they're in multiples so we're a tag team. You should see how we get treated!

[StarfrightMcFangsie]

Yes. I have it relatively easy, but cannot figure out how I would work atm. The sheer logistics of 3 kids one of whom has quite substantial logistical planning requirements though not especially severely disabled, is beyond my capability at times even without work on top.

[Ooogetyooo]

"It must be great to be a lady of leisure, I wish I didn't have to go to work, what do you do all day, you don't know how lucky you are, don't you want to go back to work, etc etc"
No child are options, a dh who works like a dog and has a lengthy commute each day and isn't back before 7 pm most days, and 2 dc one of which has adhd and has very challenging behaviour most days means there is no scope for a 'little job' though yes I would be grateful if you could look after the kids particularly the one who likes to hit/kick at random, throw things and gets himself in a rage over the weirdest things so I could you know make myself useful and contribute to society in a meaningful way. Strangely all the above comments have been by people who know me well and know full well the set up with our dc with ADHD so can't understand why they don't get it. Even my best friend said' Yes but you need to do something for you, you need a job for you and your future' No shit Sherlock, but how does that happen when you have a kid who behaves like mine. Even my dh once made a suggestion( it happened only the once) that I maybe might like to have a partime job.I said what after I have just given up the career I' d worked so hard for and kissed a fab salary goodbye, because you couldn't adjust your working hours and help out more at home , I don't think that's going to happen. God that sounds bitter. And breathe.