To have had enough of caring for my disabled dd

[chickensaresafehere]

14 years & I'm tired.

Tired of being a constant carer,of it being all my world is.
Tired of thinking & worrying about the future. Hers & mine.

Tired of not being able to relax,of constantly being in fight/flight mode,so much so I've totally lost the ability to chill out. It's exhausting.

Tired of dreading school holidays.

Tired of having loads of services cut & respite taken away because of Covid.

Tired of not liking the person caring has made me into. I've lost who I am.

I know IABU. She is my world & I would do anything for her. So think before you judge me.

No judgement from me OP. It must be unbelievably hard. I cared for my DM when she was dying and I would be busy for 9 hours straight before I even got 5 minutes to myself ( I had a 3 yo to look after too, as well as doing washing, cleaning, cooking, shopping etc for 4 adults whilst also working part time). I hope you get some respite soon now that things are starting to open up again

You are not unreasonable. Caring is exhausting. Utterly soul destroyingly exhausting.

Op no one would judge you. This has reminded me that Dh and I really want to be respite foster carers even our own dc grow up for exactly the reasons you need support.

SheenMcQueen

Some great suggestions.

For some carers even a whole day off is not practical- never mind a week.

However four minutes of dedicated time 5 times a day can really help. Requires no additional support. Just a little kindness to ourselves.

I understand. I have a teenager with severe asd. He needs 2:1 care but when dh is working there is only one of me. No respite provision because he is too challenging and they won't have him. It's a good day when no one has got hurt.

Absolutely no judgement from me. It's hard and it doesn't end.
Please get some respite care.

Amen to that @speakout.

Often I feel like many of us as carers forget ourselves and that we can have some element of control over ourselves, our thoughts and feelings because everything can easily feel so unmanageable. And existing under the ‘superhero’ narrative gets exhausting. We’re not. We’re just regular people.

I would not dream of judging you. To care for a disabled child is exhausting. Even at night, when they are asleep they may wake and need extra help. My husband died when my daughter died - not that he was much help - and the stress of managing on one's own is massive. I do hope you are able to have some help soon.

I don't know what to say @chickensaresafehere I'm so sorry. I hope things get better soon.

No judgement here at all..... It must be so tough.

I suspect one of the results of this lockdown period is that 'the system' will be caring for more disabled people as alot of unpaid carers have absolutely had enough with all their support withdrawn. The knock on to that will of course be that carer support dwindles more and the cycle continues.

Underhisi

Totally understand this

I think you’re amazing and you are doing the hardest job in the world, caring for a disabled child. An unrelenting and exhausting job.

Take some time for yourself if you can and look after your mental health.

Is there any charities than can offer some support or respite?

Nothing to judge, you're struggling and no wonder, it must be tough! I've not read the previous posts but get in touch with social work, they may be able to provide reality care days. And maybe a carer 3 times a week just to let you out for a coffee or whatever.

I hope things get better for you.

get in touch with social work, they may be able to provide reality care days. And maybe a carer 3 times a week just to let you out for a coffee

???

Are we living in the same reality???

AwaAnBileYerHeid

Are these suggestions based on reality??

Long time carer for elderly dm so I hear you.

Difficult. But not the same. Not nearly.

OP, I hope you get the help and support you need and deserve. It’s tough, especially when you have to worry about the future on top of all the day to day stuff, the fighting with the system for the small crumbs of help.

I know it’s easy to say, and harder to do, but you need to take care of you too, in any way you can. Have you thought about getting some counselling? It helped me a lot. If only because I knew it was an hour a week, just for me.

Sending a massive hug

oh god no judgement, just feel desparately sad for you in your original post.

you need a break OP, I hear you, i hope your foster placement comes off for her

You are an amazing mother, I can imagine how difficult it must be both mentally and physically and it would be really hard even without covid.
Your child adores her mother and father very much, for you and I will pray for you

A big hug from me too.

It's not the same as caring for an elderly relative, and it doesn't stop when they get to 18.

I could never judge you. You have strength and resilience that earns you my respect. Everyone needs a break. This awful pandemic has affected so much.
Take care

I genuinely don't know how people do this. I have three kids with no disabilities and that is hard work. I have often wondered how people cope with a severely disabled child, not just the parents but the siblings too. I really feel for you OP and I think anyone would understand where you are coming from

gottakeeponmovin
I genuinely don't know how people do this

Because they have no choice??

Is this a serious question?

I agree I have a autistic non verbal teenager . It’s hard and I think your reaction is normal . I’ve felt it myself from time to time , I’ve thought I can’t cope I’m tired and what would I do if I said I can’t cope . Lockdown has been especially hard and we’ve had to isolate a few times too . Usually when I feel like that it’s because things have got too much and I need a break .
That’s what I feel you need a break someone to take dc for a few hours .
I hope things get better for you .

@chickensaresafehere

Sending you hugs;mum of one severely autistic 12 year boy and a 15 year girl with high functioning ASD who hardly sleeps and has awful anxiety/panic attacks which are often triggered by lack of sleep.

I also have a 14 year with a heart condition and a as yet undiagnosed condition which is looking most likely something like a connective tissue disorder.

It's absolutely fucking relentless;I don't get much sleep due to the 15 year not sleeping much and then in the daytime I have to have my wits about me to care for the other two as well.

I'm often physically and mentally exhausted.

I love my kids so much but it's hard;I'm off to the hospital with my 17 year old tomorrow for 24 hours as he's having surgery;he's got to be on paediatrics as he's under 18 and I'm staying as your not allowed in and out of the ward.As awful as it sounds I can't wait as I get a break from everything else.I'll probably spend most of my day on my kindle.