Working alongside caring

[Littlegardensquirrel]

Does anyone have any experience of working while caring for a child with a long term illness? My child has recurring periods of needing full time care alongside a lot of medical appointments and the associated admin of this. I feel like I’m at breaking point with the juggling. Work are good at letting me take time off but I still have to play catch up and am constantly distracted. I don’t know if I should take time off sick or give up my job, or just such it up and get on with it. How does everyone else cope with a child having a long term health condition?

I understand the stress and guilt, OP. For better or worse, I was fired 3 months after my child was diagnosed with a critical illness, as they couldn't afford to keep paying someone who needed to keep taking time off. I honestly don't know how anyone manages to keep any sort of job with long term caring responsibilities, unless they can work from home, have a highly qualified and trustworthy nanny and/or a partner to share some of the load. Even then, a nanny can hardly take over the responsibility for organising medical appointments or taking a child to a hospital. I guess a personal PA could do the admin side of things. Are you a single parent too? That does make it harder.

There is some generic info on your entitlements on .gov.uk and carersuk:

https://www.gov.uk/time-off-for-dependants

https://www.carersuk.org/

From experience, I would try to hang onto your job as long as humanly possibe. Even if you think you're doing a crap job, just hang in there and do the best you can. Life is infinitely worse with less money coming in.

In the meantime, if you haven't already, apply for DLA for your child, carers allowance for yourself and see if there is any other help you may be eligible for e.g. there are a lot of charities out there who offer a volunteer driver service to pick you and your child up, take you to hospital appointments and drive you home again. A small thing, but means you don't have to worry about parking or paying for a taxi etc.

Look up charities that were set up to help people manage conditions like that of your child. Their websites will usually have links to their own services as well as other services that may offer something different. Ask your Dr/the hospital for referrals for benefits advice and to any charities or support groups that may have more info.

If you're eligible, don't delay making the DLA claim. They're taking 6 months to make a decision, by which time, the choice to keep your job or not may have been taken out of your hands.

Good luck, OP. I hope you're able to find some support and others in a similar position can offer more advice.

I was thinking of this only yesterday. I was a single parent to a disabled son with learning disabilities and a diagnosed condition which can be fatal.
I also work full time as the only earner.
There was very little compassion from any of my employers (4 over a 20 year period). I was very rarely off work, but requesting flexi time, annual leave for childcare, etc was never easy (they were ignored, declined, and I had to appeal). I was overlooked when it came to promotions as employers liked staff to be onsite and working lots of overtime (special needs school don’t have wraparound clubs as they all travel in taxies!).
I always felt like they thought I was a difficult staff member even though I love my career and work incredibly hard.

I had no additional rights over child free employees. It’s horrendously difficult.

Thank you both. I’m not even a single parent and luckily I’m financially ok but I still find it really hard. It’s the mental toll it takes and not being able to give 100% (or anywhere near it!) at work.