How do you just carry on?

[exhaustedbear]

I am a carer to a disabled child with high needs, I also have a toddler who’s about to turn two and terrible two’s are in full swing, another older child as well and two older stepchildren who pop in several times a week.

I am an introvert and absolutely need time on my own to recharge but we’ve just got back from a 10 day holiday where the kids have stayed up late every evening meaning I haven’t had that time to recharge, the other children have been off school and Dh off work so it’s been solid peopling without a second alone.

Now we are back and I look forward to putting the youngest two to bed and having some evening time to recharge but the step children want to visit in the evening so that’s out the window, usually I would take a walk but I’m soo exhausted I can barely move and just to put the cherry on the top my mum who lives 5 hours away is coming to stay for a week tomorrow and so we’ll be having lots of full days out and she’ll be sitting with us all evening too, this has been arranged a while and we are all looking forward to seeing her as we don’t very often due to distance and she’s had to arrange a carer to look after my dad while she’s here so it’s a well needed break for her too.
I am just so exhausted, I just need a bit of time on my own to recharge but it’s impossible with my own caring responsibilities and the kids home, I genuinely think the holiday has killed me and I need to recover but it’s just not going to happen and I don’t know how long I can just keep on going, my whole body aches and I feel completely physically and emotionally drained.

It’s not one particular thing, it’s just so many demands.
My middle child needs as much care needs as the toddler on the physical side but also has autism so throw in oppositional defiance and meltdowns and sibling squabbles and trying to keep the house together for mums visit while dh has gone back to work today.

Tell everyone you are feeling unwell and need to go to bed. DH can entertain his adult child.

You can indeed just bugger off, they’re his kids, old enough to understand that you need some space. Take yourself off for an early night and let them spend time with their dad, conjure up a headache as an excuse if it makes you feel less guilty. You need a rest at some point or you’ll break.

Hopefully OP's mum won't be too exhausted from her own caring duties to mind her grandchildren for a few hours -and is capable of doing so.

You need to be less of a people pleaser.

@exhaustedbear take up reading, it’s been my saviour in the past. I simply say to everyone in the house (once I’ve had enough for one day), that I’m going upstairs to read. I close the bedroom door of an evening and relax with a good book.

No one seems to mind and I quite like being called a ‘book worm’.

No @Weekendnaughtinessyou are being rude and insensitive to a person who is clearly struggling. There is no reason to post anything if all you have to offer is meanness. Just go find other thread/place in life where you can make yourself useful.

No, I’m not. Or at least I don’t think so and nor do others on this thread.

You think I’m being rude.

That doesn’t mean I’m being rude per se

How old are the step children? And your children? If their Dad's home in the evening when they come over, why can't they all watch a film together or play a board game or whatever and you still go and have that early night? "I don't feel too good, I'm going up early tonight" and just go read your book or have a bath or listen to a podcast or whatever you need to do in a space on your own.

If you're too tired for a big long walk, just take a short walk and have a sit down on a bench. Again, take a book, take an audio book, listen to your favourite music, or just go and sit and rest and decompress.

While your mum's there, tell her you don't feel great but that she can take the kids out for the day. It's true - you don't feel great. If your mum will only do this if she thinks you've got a headache just say it's a headache.

Do you get any respite with your disabled child?

Op, you really do need to take this evening to yourself. Tell everyone you’re feeling unwell/run down and disappear up to your room with a book/ipad and Netflix. And you need to do this when your mum is with you as well. Not every evening, but once or twice. You need to carve time out

Our children are 9,6 and almost 2.
Step children are in their 20s and have their own homes.

I usually get some rest with school and Dh is at work and the toddler who usually has a nap too so it’s been a long 10 day holiday with full on days out and evening entertainment where the kids stayed up which has done it and having Dh off too so not a second to myself which I would normally have.

We got back on Saturday and I was exhausted but there’s just no chance to recover or recharge before there will be even more people and I need to get the house ready for my mum to come which feels relentless because I put one thing away and they get 3 things out, the toddler can’t help, the middle one will just defiantly refuse to tidy up their things, Dh is at work and will help out when he is home but I can’t put it on the 9 year old if the other refused so it’s all on me to do everything, dh would happily leave the housework but I can’t knowing we have visitors.
I need a clean and clear house for a clear mind.

If you keep up the “everyone else’s needs are more important than mine” approach op, you’re doomed. They will all keep taking until you drop. Lower everyone’s expectations of you and prioritise yourself at points. What CAN they all do. Your husband CAN entertain his own children. Your mum CAN enjoy a more chilled week and take care of herself, that’s still a break from caring for her husband. Look at everything you do and ask if you’re martyring yourself, there will be lots of things I assure you.

Step children are old enough to understand you are knackered and having an early night so only visit if they want to see their dad.

Your partner sounds useless.

Oh and the middle one defiantly refusing to tidy up her things? Put all that in a bin bag in the loft and see how quick that changes. Either that or they’ll have nothing left to make a mess with. Make it a choice not a demand if they have pda. “I don’t have time to tidy this would you like to do it or will I just bag it up and put it all away?” Your eldest will learn they don’t have to do anything and so the cycle continues, you’re being too soft. And I do get it I have two AuDhd kids

Doesn’t he

These are obviously children at least 10 years old. At least.

So in the evening, you kick back whilst they kick back or do something with their dad

You've got a DH problem... he 'helps'?! He's just as much a parent as you are, in fact more so regarding your step children.

Most people find parenting stressful, or elements of it. He doesn't get to opt out.

Steps are in their 20s with their own homes

So how do you deal with life with disabled kids then? Maybe you could suggest something yanno... helpful?

Do you drive and have access to a car OP? If so, go for a short drive and park up somewhere for a quiet rest.

Actually OP I think you need to enforce the small selfish part of you that doesn't see daylight much, hand over the reins to your husband and take some time to yourself. Even if it's asking for a sleep for a few hours at a mates. You're burning out.

I do that, short drive to the beach and just sit for a bit. Good for the soul.

It sounds like you’ve got a good relationship with your step kids. Could they take the 9 year old out for the day (or even the middle one too)? Defiance/meltdowns aren’t going to be so hard on people who don’t do it every day, and maybe the middle one will behave better with the fun older siblings.

Also, I doubt step kids will care if the house is a mess. Personally I’d rather my mum doesn’t kill herself cleaning before I visit and I’m 39. Ask them to help out, put the washing on, wash up etc.

The step children need to stop contacting you if that is the case. Go to bed when you put the youngest two to bed. Let SCs father entertain his ADULT children and your 9 year old if she wants to join them. Assuming all 5 of these children are his, he needs to parent the younger ones too.

You are making this rod for your own back, you don't need to be available for everyone all of the time.

I think people underestimate the exhaustion involved in care of a child with additional needs. I have 3 kids. Two of them have no additional needs and while they’re tiring (like all kids) there are times when they’re occupied in various things and I have a breather.
My disabled child requires 1:1 care at all times. There is no downtime, no quiet cup of tea while he plays in the garden. I have to sleep in his bedroom. I am with him 24/7 in the holidays. There is no one else to have him. That’s a different level of exhaustion.
Maybe a bit of empathy wouldn’t go amiss.

This, totally agree. Carer burnout is a real thing. I empathise with the exhausted feeling, physically and mentally. There's nothing quite like it.

Totally disagree with the you made your bed, lie in it attitudes.

No one, sets out to have children with the knowledge of how much extra needs that child may or may not have.

This is the problem then. Your H needs to step up. Very convenient that it's all too stressful for him.

Also, if they are adults, you don't always have to say yes to a visit. Either your H can host or you can say "sorry, not tonight guys".