Hand Hold - Is it okay to stop work for 3-4 years

[desperateforchangethisyear]

Trying to stay anon so won't say as many details. In the last 6 months my 2 young dc diagnosed with life changing disabilities, genetic and one CP too.

I've been in my role 5 years FT, went back 6 months early with baby my manager pushed me to and agreed to 4 days a week instead of FT. I had asked for 3 days/week and she said no. The 3 people she hired to take my role quit within month, numbers down, ppl refused to use our service until I returned. Since then manager makes ad hoc eve mtgs, texts/calls/emails eves and wknds my day off, even on bank holidays. She owns my life. It feels like she's trying to exert power over me to make me stay, only it's doing the opposite. I meet every target and then some so it isn't like I'm slacking. I care that the work is done and done well. My manager frequently tells me I'm the most reliable employee she's ever had.

Since returning 6 months ago, I'm struggling as there are appointments I use my day off to do, plus 1 - 2 am a week so I work late night at home to make up. We have appointments every Sat. Youngest is gtube fed, I'm up every 1-2 hrs with that, meds, moving position, suctioning. We've had 5 wks of hospitalisations - 3 unplanned, one surgery. I've used my annual leave and unpaid days off on that.

I have a private income for the next 6 yrs (related to being a lone parent) it gives me 2nd wage until summer 2029. My plan was to bank it so I have savings. Wage is avg. However, I don't feel like I can keep going. I exist. There's no time for anything. Work rules my life. Everything is work or medical stuff. I love my dc dearly and they are so delightful, it's work that feels unrelenting, not them. I want to have fun with my dc again. Have time to nap when baby does so I can function better. I want to look forward to our days. Have time for the park or picnic after appointments. Live, not exist.

At first it felt irresponsible to stop work. But it feels impossible. I can't sleep for more than 1-2 hrs, the list of things to do never ends. I was honest with GP & dc's nurse and they've told me with dc's disabilities few people work, let alone 33+ hrs. Their advice was to stay home until baby in primary, then return to a job that is PT b/c these needs will get bigger. I worry they are just being very kind and I'm being irresponsible.

I'm here b/c I want to know if I'm being selfish by contemplating this. If the reasons are reasons enough. I've always worked and paid my way. 20 + yrs in my sector. I love my work. I don't want to put my family at risk (I have older dc too). I worry about what's going to happen to me if I continue as I am. I can't explain how hard it is. I could take some of the leave that parents are entitled to, but I also know she will be very upset/angry. I'm not trying to make other people's lives harder, I'm trying to help my family thrive in really hard circumstances.

I have never been in favour of women giving up work and independence, not once on these threads have I advised that to be wise.

until now.

I absolutely think you should, it sounds impossible to continue and you will suffer if you do. Take the advice, take a break, concentrate on your children and being the best family you can be, together.

I wish you well.

I gave up work when my 2nd dc was diagnosed with a disability, I was struggling with hospital appointments and asking for time off work. At the time I wasn’t a single parent and I planned to go back once dd2 was settled into primary school. Sadly it didn’t go to plan and dd needed a lot of support, I had to fight to get her out of mainstream and eventually my marriage broke down and exh offered almost no support for his DD’s. I have had a few part time jobs but at the moment I’m not working at all due to dd2 being in a part time placement and now being too old for child care. I don’t regret giving up work as dd needed me, I was able to take her too different therapies and successfully get her into a good school but now I have been out of work so long I am scared no one will employ me.

Please don’t worry about what others think, you are doing it for your dc. I do get judged and I have family members who call me lazy and a scrounger for not working but no one offers to help me care for my disabled dd.

If you can afford it, do it! Stay home, focus on DC, and don't worry about your manager. You don't live to work, you live to be with your family. Give work 2 weeks notice and then go hug your babies!

You certainly need to give up your current job OP. It is not normal to feel like your manager owns you. It is not appropriate for a single mum with caring responsibilities for disabled children to be bullied by their employer rather than supported. Its quite possible how you're being treated contravenes equalities laws. If you need to stop work altogether, so be it. Your health and your family come first. But you may well find that you can manage another job where you're treated properly and that it's helpful to retain the independence and stimulation work provides you.

My DC3 had an NG tube until they were 1. No way could I have worked, looked after 3 kids - one with extra needs and done all the night feeds (we bolus / gravity fed for 6 months and then used a pump, I also expressed for the first 6 months so was up pumping with one hand and bolus feeding with the other - fucking hard and I was on ML and had DP to help)

Do what it best for your children, your own mental health and overall well being, Your manager is not being fair at all. They do no respect your boundaries or understand your constraints.

Are you claiming DLA for your children?

Have you had a full benefit check?

I wouldn't run myself into the ground for any workplace, at the expense of mine and my children's sanity.

I work in a career where it is really hard to get back into employment. There aren't many reasons that would make me want to have a career break but in your position absolutely!

I wouldn't necessarily think of it as a 6 year break though, in a year or 2 when you have got on top of life you could look for flexible employment 1 or 2 days a week with a sympathetic employer.

For reference of what a good employer could look like. After 12m mat leave I went to sick leave due to my mental health and was actually in hospital when I moved to sick leave. I had 3 or 4 weeks off entirely then started a phased return. My board level boss took me to one side and said the board want to let you know we want you back healthy don't rush back to quickly and make yourself backwards. Let us know what adjustments you need or if any flexible working arrangements need putting in place. Also, don't worry about the sick leave pay, you will get paid full time rate until you are back. Another example on Thursday we were given 1 days notice for my daughters paediatrician appointment. I arranged a half day holiday and messaged my line manager and HR who approved the leave in 20 minutes and said no worries thanks for letting us know. (Annual leave only because compassionate leave is unpaid so saved for the end of the leave period!). Last January my mum had a fall and was rushed into hospital. I left immediately without question and they posted something to my home that I left and I needed it before I would be back in the office

When you have a high needs child, it takes a lot to keep everything together and stay happy!
I gave up work in similar circumstances because I felt like I couldn't be the best employee I could be, the best mum I could be and be happy at the same time. You'll be no good to anybody if you wear yourself into the ground.
Take the break. You'll be a healthier, happier and better person for it.

I’d have a come to Jesus meeting with your manager as a last step before you resign. Outline what you’ve said here and ask for fewer hours and more flexibility. With the punchline you’ll need to resign without it.

it must be incredibly difficult for you but I wouldn’t step away from work completely (depending on industry) unless you have absolutely no choice

Sometimes you have to look after yourself and your children first. My children both have neuro/mental health difficulties, and I am now on a second extended period of not earning I did five years when they were tine, and am now two years into looking after and home schooling one of them after they had a breakdown.

In between times, I had a great part time/term time job that I loved, and my employer was equitable around my caring responsibilities.

Your current employer sounds like a total nightmare, so I would definitely not carry on with that.

If you can work part time around your children, I think that gives you a good balance, as well as keeping continuity in your career and providing independence.

Unfortunately, I have not been able to do that since my child's breakdown. I am very fortunate to be able to be home with them, but I miss other adults and my independence badly.

Wishing you lots of luck, you have a lot on your plate, and your employer is making your life a lot harder than it needs to be.

Having 1-2 hours sleep a night is not feasable or manageable. It sounds like you feel guilt or pressure to do everything and be robot superwoman as dictated by by your manager or your expectations for yourself...its not possible physically or mentally.

Think of it this way..what happens when your body gives up? When you can no longer function and deteriorate through exhaustion? Who will do the feeds? What happens in an emergency? Your current lifestyle is not sustainable, to look after your LO you also need to look after yourself.

Quit and focus on your family and YOU.

When you feel you can manage it later on you can relook work or part time. But right now there is nothing to feel guilty about. You are doing a full time job thats 24hr on call! You are a carer.

I took a career break in August for the exact same reasons as you. Don't want to out myself by posting full details on this thread but please feel free to PM me. Sending a virtual hug

If you can then quit.
I have an older disabled daughter. I have worked part time throughout her life but mainly in an educational setting (term time only) where there has been lots of support from my manager for flexibility around appointments and where I made adjustments to hours over the years as we needed to. What you’ve described is unsustainable and will grind you down. Be kind to yourself, take the opportunity to be at home with your family and reassess in a few years time. You may even find a more flexible employer who will support a more part time role so you can keep some work going if you wish to.
Best of luck x

Hand hold here, your really going through it!

you sound exhausted and I am not surprised!

you need a break, you are not being selfish at all! If you can afford it, please give up work. I’m exhausted as a working mum of 2 children similar ages and I’m only doing two times a week. You have so much more on your plate and it’s times like this I wish online support was available in person for you. I second what someone else has stated and checking whether anymore benefits are available to you in your position to help make things easier. Wishing you and your dc all the best!

Depending on your circumstances you could be eligible for Universal Credit and your children eligible for disability support. I don’t know what the payment for being a lone parent is so that would need to be checked against the UC criteria.

In your position, I would 100% stop working and I wouldn’t feel guilty for it. Your boss sounds horrific and very unsympathetic to your difficult situation. I wouldn’t even give her the chance to offer you a more flexible way of working as it sounds like she wouldn’t stick to it anyway.

Your children and your own well-being comes first. The social security system of this country was set up exactly for people like you, please don’t feel guilt or ashamed for leaning on it in your time of need.

I really think you need to stop work. It would be hard enough with a child without the needs yours has...so don't give it a second thought.

Wishing you all the best!

Also, and this may be totally worthless, but it may an idea to look into overnight feeding options?

Does DC need an overnight feed? Or can they be on a very slow / continuous overnight feed via pump? What about private overnight respite care so you can at least have x amount of nights when you get a proper sleep, you need longer than 1-2 hours a night.

Even without the NG feeding it's a difficult situation. Raising a disabled child is hard.

I work because I need money to live and wouldn't be comfortable relying on another person for money. If I had an opportunity to not work but still fund myself I would leave work in an instant and not look back or feel guilty.

There is more to life than work.

I didn't work for 4 years when DS's additional needs were at there most challenging. I had a small passive income, he got DLA and I got carer's allowance, which paid the bills.
When he got in a SEN school, and life at home became easier, I started looking for jobs, I applied for 2 (was quite selective because I needed hour's that fit round DS). I got interviews for both, though didn't end up going to second interview and I'd been offered and accepted the other job. Doesn't seem to have done any long term harm and was definitely the right thing for our family.

Sounds impossible. But I think you should be under no illusion that you won't return to work in a few years time.

The older disabled children get, the harder if is to combine work and care. No wrap around childcare, no holiday clubs. there will be nothing unless you have a robust support network.

Are you getting all the benefits you are entitled to? DLA? Carers allowance (if your private income permits). Where is the dad. Can he be involved more?

I have a now adult son with autism and severe learning disabilities. I gave up work when he was around 7. It’s just so hard with multiple appointments , therapies and having to pick him up several times a week when school couldn’t cope with his behaviour or he was too anxious to be able to go in the bus. He got banned from the bus so many times I had to take and pick him up. There is no way I would have been able to hold down a job too. My husbands salary can support us all so Ive never gone back to work. Education finished last year age 23, so it’s still impossible to work.

I don’t think you’re being unreasonable at all. I’d definitely stop if I was you. Make sure you’re also claiming what you can disability benefits and carers allowance. It’s not much but it keeps your NI contributions up to date.

I gave up work when my DS was diagnosed with autism. He was at school so it meant I could spend his school hours catching up on sleep, and things for my wellbeing like going for a swim and walks and meeting up with friends. It did me the world of good and I have never regretted it for a moment. I've seen other parents from our disabled children's group burn out trying to juggle ft work and the stress of being a carer. My view is that being a carer is a ft job and I deserve to spend respite time doing things for myself, not giving all my spare time to an employer, so I never felt any guilt over leaving work.

Agree with pp about getting everything in place that you're entitled to. We managed pretty well with DLA and other support.

You have to do what you have to.do
My son was diagnosed with severe autism and learning disabilities at three I gave up.work when he was five as it became impossible to work and care for my son I was a nurse so.it was a stressful job too
My son is 13 now and I haven't gone back to work his needs are too complex
We get by with my DH,wage ,tax credits ,care,s allowance my sons DLA.

YANBU at all, OP.

You can apply for DLA for the children, then get carer's allowance and probably UC. You will get more than the standard amount because there are additions for being a carer and for having a child with disabilities.

When you do the DLA forms, you'll need to explain that your children require more care than a child of the same age without disabilities would need.

I agree with this. If there is a working pattern that would actually be practical for you, you lose nothing by putting your cards on the table like this.

If she won’t agree then resign. Ditto if you think there is no working pattern compatible with your home life but do it eyes open. I got back into work after a 5 year break- it can be done- but at the cost of career progression and with a Drop in seniority that will cost me hundred of thousands over a lifetime. Still worth it, to me.

None of the options is remotely selfish.