I'm so miserable - life advice please

[JunkBasket]

I'm sat here crying (a common occurrence) because I am so frustrated and fed up with my life and I just don't know where to begin in sorting things out.

I don't work and haven't for over 10 years due to initially taking time off when the kids were tiny, and then discovering that my eldest is autistic after he started refusing school. There's nothing I can do about this now - I've campaigned the school, local authority, MP, government etc and there's no suitable placement for my child so consequently he's at home with me. He has some work sent virtually and although it's not a lot, it takes an awful lot of time and effort to get him to complete it. I find this stressful and time consuming. He also has various different appointments to attend on a regular basis that are an hours drive away which takes up another big chunk of time. Everything else I do with DC is extremely stressful as he struggles with lots of things, not independent etc.

DH works full time running his own business. He tends to go to work later than average (9-9-30am) and consequently gets home around 7 by which point we've eaten. He then showers, eats dinner and puts youngest DC to bed and always falls asleep doing so.
He does the dishwasher about 50% of the time. Apart from cutting the grass and putting out bins this is the only household chore he does.

He also occasionally travels for work so can be away from a few days to a week at a time. This is rare but obviously everything falls to me during this time.

I am also a partner in the business but I do a minimal amount of work (few hours a week).

I do all other household chores (laundry, cooking, cleaning, food and clothes shopping, appointments etc)

I have absolutely NO other regular help and never have done. My kids have never stayed overnight at a grandparents for example. I could count on one hand the amount of times the GPs have looked after the kids. DM has said she could help out IF I get a job but she can only do two certain days so I'm limited.

DH has also broached the subject of his elderly mother coming to live with us in a few years as she can no longer manage on her own. He relies on me and takes it for granted that I will do a lot of things for him - he's assured me that her care would not fall to me but I just know that it would end up that way. I don't mean to be heartless but this would break me.

I'm giving you all this info because I'm desperately miserable. I'd love to be able to be going out to work and earning a decent amount of money, as well as having that sense of achievement but I don't have anyone that I can leave my kids with. It feels really unfair to me that DH goes to work and enjoys it whilst I feel like I'm stuck in a prison at home. I have brought this up with him multiple times and he has said I should get a job - my issue is that I have no real skills to put on my cv. I worked in multiple admin roles before having children so I've no "career" to return to.

Well done if you've got this far, any ideas on what to do/where to go from here?

I'm going to suggest this to him - thank you for the idea

I'm off to make the dinner now- thank you for all the great ideas and suggestions. I will check back later.

Can you get some weekend work. Leave childcare and domestic tasks to your husband. Leave him a list. He probably needs to experience what you're experiencing to understand.

Skills wise, you will have accumulated lots through intensive care and coordination of your child’s complex needs.

A firm no to caring for mum in law is fair. Ask your husband how it would work without you providing care? Is he planning to get carers in? Who will coordinate this? What happens once shes immobile? Who gets the medication? Changes her bed? Baths her? Talks to GP, hospital, social services? Takes her to appointments? Days out?

No advice for you OP, just extending my sympathy. My sibling is autistic and my mum was in much the same situation as you when I was a child. It’s so so hard and frustrating. I think you’re probably doing much better than you give yourself credit for.

Sending hugs xx

do you get self directed support for your son? You can apply to the LA for this - they can pay for respite care for him - sometimes this can be overnights

Also you didn’t say what work you are doing for your husband but you can put that in your CV and you need not say it’s your husbands business

You could do a book keeping course? Or similar as there are so many hybrid roles

I think you are stuck in a rut! You need to get out of the house ALONE

Go to a Zumba class, there must be something

Nobody should be forced to be a career or so the LA says where I live!

Get your carers assessment done also

you can get cleaners who will do once a fortnight too

Try to get your son to help with chores too

@JunkBasket

You say you're not in England but are you in the UK?

Whilst I understand the wish for a job, I actually think that adding one to your life is going to mean that you end up doing that plus all of your current responsibilities rather than it improving the balance.

If your mum is willing to watch your son for one day a week whilst you work then I think that the first step should be to take her up on this. One day per week (on the day that she is free) you should go to a gym/cafe/work space and do the admin for the business - that is the job which you have already. As part of this you should get a walk/swim/gym session etc in the morning; a nice relaxed lunch hour at lunch and an hour to yourself with a book at the end of the day.

Secondly, your husband has said he will help but isn't sure what to do/needs direction. Whilst that's irritating as hell, he probably genuinely means that. So, my suggestion would be that one morning a week you go out early before the day starts in the house and have some time to yourself. Get some exercise or a nice breakfast somewhere or go to the supermarket or have a coffee and read your book etc. He does morning routine for the kids and then goes to work as normal at 9.30. If he genuinely needs direction for the morning routine stick some instructions on the fridge.

Thirdly I think that one weekend a month you need time to yourself. Go stay with a friend or your mum; have a night in a hotel; go somewhere you've always fancied etc. Leave your husband to hold the fort.

Lastly, get the cleaner. If you can't afford £200 a month then have her every other week. Or just have downstairs done. Or just the bathroom and kitchen and lounge. Or find someone cheaper. But definitely do it.

It will feel a bit overwhelming to start with making all of those changes but if you can do them and stick to them for six months I think you'll feel a lot better; and will have a lot more options and ideas and thoughts about the next steps that you can follow.

A bit out there maybe, but could you look into doing a course - an Open Unoversity degree for instance? It would give you something just for you to focus on and I promise you that the sense of accomplishment you get from that is immense.

You need to get yourself a decent job so that when mil needs care, DP is the one with an adjustable schedule and is able to take care of her. You’re right, as the nearest female, it will fall to you - if you let it. You need to make yourself needed somewhere else so that professional careers are used and that you aren’t an option.

I would really fight for him to work less and you to work more. Him to spend more time parenting and you getting to be a person again. If he loves you, that’s reasonable.

He actually boards Monday to Friday, as it's not near enought to commute. The residential provision is fantastic.

Yes I think I will. Thank you, I need to make a list of transferable skills.

No idea what his plan is re MIL. He doesn't really think things through and tends to be overly optimistic....then complains when things go tits up.

Thank you, that's kind 😊

No I don't get self directed support - not heard of it but will definitely look into it!

Also not heard of carers assessment so will look at that too.

I tried to do a course last year but I couldn't keep up with it. I'm academically able but just couldn't find the time to put into it.

I will also look into cheaper/fortnightly cleaners

Thank you - all good ideas

Yes, Scotland

Thank you so much - these are all great ideas! I'm going to sit down tomorrow afternoon and make a list of things to action. I really appreciate the time you've taken to list all this out.

Yes I did try doing a course last year but I couldn't fit it in with everything else. It started off ok but then it just became overwhelming.

I think I'll try this once I've got things more in order. Thank you for the suggestion.

Yes this is how I feel and what I fear.

But at the moment I'm not sure how to get to that point.

Some good advice here.

I would add, under no circumstance let your MIL move in!

@JunkBasket Please don't put off going for assessment if you think you may be ND.
If you're in the UK look at doing right to choose via one of the providers that have been approved by the NHS

www.clinical-partners.co.uk/nhs-services/right-to-choose

psychiatry-uk.com/right-to-choose-asd/

Just a couple of examples.

In terms of making life happier for yourself, can you maybe find a part time job, test the water?

Thinking of you this evening OP and hope you will start to find what you need going forward and that you have a good day tomorrow.
All the best

I'm in Scotland - I don't think we have right to choose here sadly. I wonder if there's an equivalent?

Thank you, that's so kind of you to think of me x

I could have written the same as you 5 years ago. I gave up a VP role 10 years ago to become my DD’s carer after which my husband completely checked out of any responsibility, leaving everything to me, the mental load was excruciating and nearly broke me.

The therapist I saw at the time suggested I gave my husband a role, not help me with this and that when I needed but to properly divide responsibilities. He now does mornings plus I gave him the most soul destroying of tasks which was organising education. This was an ultimatum not a choice for him! 😁

Reducing my mental load has made things easier. I am still at home with DD but I now manage.

I have also had no help from family, which has completely absolved me of any elderly care for any of them 🎉 Do not let the MIL move in as your husband has form for checking out too.

I agree with others saying weekend away, exercise class, out for a walk, gardening. Whatever floats your boat. I wonder if you need to lighten your mental load first though otherwise these might just become more stuff on your plate!

@JunkBasket
I found this - don't know how reliable it is but worth looking into

There's a page here with some potentially handy advice - it's focused on ADHD diagnosis, but a lot of the advice would apply for an autism diagnosis as well. It's 4 years old though: https://www.scottishadhdcoalition.org/wp-content/uploads/2019/07/Guide-to-adult-ADHD-assessment-July-2019.pdf
If you're really not sure, I'd recommend contacting your MSP, as they should at least be able to help you understand your options. If you're not sure who it is, you can find out here: https://www.theyworkforyou.com/msp/