Hi all, I'm new here and wondering how other parents have managed when quitting work to become a full time carer.
I've always managed to work around my child's needs by receiving childcare help from my parents but they are now getting to the point where they are finding it harder as they get older. Coupled with the fact that my child will be leaving school this year (she'll be 16) with no place to go yet I feel I can no longer work and provide the care she needs, my daughter obviously comes first so the current job has to go as I work 12 hour shifts. All other family members work full time so no option there.
I've tried finding work that's within the hours available but there isn't anything, plus I can't start a new job as the hours may change in a few months and I'll have to leave that job. I need to be on call for her also as she has no road safety skills and is oblivious to danger, so I would need to accompany her to places. I've considered outside care for her but I work a minimum wage job so it would cost more to supply care to her than if I just finished work and be there for her myself, which is also my preferred option, she's adorable :)
I'm hoping to receive financial help to cover the loss of income but that is also uncertain, everything is very uncertain at the moment.
I would love to hear from anyone on their experiences with a similar situation on how you dealt with it, are dealing with the change, and any advice you can offer.
Many thanks in advance.
I understand your situation a little. In 2016, I took extended leave from my (minimum wage) care job to take care of my mother full-time for the last few months of her life. I could only afford to do this because my weekly income was below the £120 cut-off for Carer's Allowance (I was on reduced pay from work). So I got that (£62.10 per week), plus Housing Benefit to cover the rent on my flat. It still wasn't enough to live on - but mum paid for my meals whilst I was there. She had a pension, plus Attendance Allowance. We also had a private carer who called in twice a day for half-an-hour to attend to mum's personal care. Social Services covered the bill for that. When my reduced pay from work ran out after three months, I then was also able to claim Income Support. It was a very tight time financially, but fortunately I was used to living on a low income.
Are you renting, or do you have a mortgage to service? I know I certainly couldn't have done it if I'd not been renting, or had too many other financial responsibilities. Have you checked with the CAB to find out your entitlements? Also, I got a lot of help from Carers' Support. It's an organisation which might only cover the area where I live (Kent) - but there should be similar organisations in other parts of the country. Social Services should be able to tell you.
I understand the uncertainties with it all. I work with autistic people, most of whom live at home with their parents. I know it's often a struggle for them, but they manage with benefits, etc. I hope you can find a way to do this. For all the difficulties involved, it's really quite often the best option for a loved one. It would have broken mum's heart if she'd had to go into a home. I know she'd have died much quicker that way. You're obviously looking at many years of care for your daughter. I don't know, but I assume from what you say that she'll be incapable of working or living independently. Are you thinking about finding day services for her? You should also be able to get access to other respite services, too. Have a look here to see if there's any further help you can get..
Assessments and support for carers
Hi Tom, thanks so much for your reply. I too work in care, for the elderly. Luckily I rent so haven't got the stress of meeting a mortgage, house repairs and insurance. I will definitely look at the resources like CAB as I haven't got a clue where to start apart from claiming carer's allowance. I can kind of relate with regards to your mum, it would be such an upheaval for my daughter to have care from a stranger and would most likely set her back.
I'm assuming at the moment that she will be incapable of living and working independently, but I don't know how she'll progress so maybe some sort of day service would be best, if only so she doesn't feel isolated.
Thanks so much for the link, will check that out, and thanks for your help.
Was she in mainstream schooling? Is she high-functioning, or more severely autistic? The Trust I work for provides residential, day care and respite services, and specialises in autism. Day services offer many good things: socialisation skills, outings, educational opportunities... and dedicated staff, who work to the non-aversive principle that's so important for autistic people. I hope you can find something for her like that. I know that most of the parents/carers who care full-time and use our day services wouldn't have it any other way for their children and relatives (most of our people are aged between 18 and 50). They get the best of both worlds.
I know what a minefield it can be, though, with Social Services. Too often, the real needs of a person are overlooked in favour of what are regarded as better (i.e. cheaper?) options - and the views and experiences of those who have the best picture of actual needs get ignored. But if you can get a full assessment of needs - for your daughter and for yourself - you can go from there.
Check out the Autism Services Directory, too, to see what resources might be available in your area:
Autism Services Directory
That's brilliant, thank you. After having a look I think I'll take your advice and get an assessment done for us. She's currently in a separate special needs unit in a main stream school, she would join the main stream for certain lessons which was supposed to be supported with one to one help, but I don't think this happened all the time as she's really struggled with that environment being subjected to the other kids picking on her, which the school aren't very good at responding to, needless to say there's been issues there with the staff.
I'll take some time and look through the directory, you've definitely made me feel more at ease so thank you :)
Gah! That's horrible with the school. A common experience. I was bullied remorselessly, though I was high-functioning and - in all external respects - 'normal'. In my day, I was 'slow', 'unfocused', 'anti-social', 'disruptive', etc. All the pointers were there, but it wasn't something people recognised so much.
She sounds capable academically - but held back by the environment she's in. Yes, needs assessments are really important. The SENCO should be able to help, too.
I'm so sorry about your experience, it must have been terrible for you to go through all that and not be understood at all.
She's got 100% attendance but very poor grades, she's being graded the same as all mainstream kids without her needs being taken into account, so it's a joke when her report comes home as it doesn't give any suggestions with regard to her autism and how I may be able to help her. It's all barnam statements like 'concentrate more' and 'needs to revise.'
Also her exam results were poor but what did they expect, they've asked someone with autism to sit quietly and still in a room and concentrate on one thing she doesn't enjoy at all for an extended period of time, I'm stunned she didn't start screaming.
But thanks to your advice I'm now in contact with my local Social Services to see if we can get assessed jointly and get help with her next steps after school is finished for good.
Thank you :)