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.

[SofiaMichelle]

It must be incredibly tough, OP.

Help yourself:

Sorry I don't have anything else but sympathy to offer.

[Lovemusic33]

Sending you a hug OP, I have 2 DD’s with sn’s (15 and 16) and left dh 5 years ago, he’s not much help so I do 99% of the care. I often think about the life I would have if I didn’t have dd2 who is more severely disabled and I often look forward to the day she may end up in residential care, I feel guilty for feeling like that, I love them both to bits but parenthood isn’t anything like I ever imagined it to be. We try and make the best of the situation, we try and do normal things, we try and go on holidays and on day trips but often have to return early, I have learnt not to get my hopes up, not to expect anything, sometimes it’s easy and sometimes it’s bloody hard.

My dd2 had never slept well, at the moment she’s waking at 4am every day and it’s tiring, school holidays have been hard because by 7am she’s bored and wants to go out, she doesn’t really play with anything at home but loves being out in the car.

I would like to think things will get easier, I would like to think one day she will go to a residential or into supported living but some things just feel impossible, like going abroad (have always wanted to travel) or having a relationship. At the moment we just take each day as it comes, some days being good, others being terrible.

I hope things get easier for you and you find some time for yourself.

[Itsalwayssunnyin]

No judgement here. I can’t imagine the worries and extra pressures this adds to your life.
You are a wonderful mum for being by her side and for all that you must’ve sacrificed to do that.

[TravellingSpoon]

You have my sympathies OP, its relentless and the inability to switch off is a killer. I have a severely autistis DS who is also 14 and these holidays feel like they have lasted about 17 years.

I hope th SW comes through for you. Someone once told me that the squeakiest wheel gets the most oil, so please be brave and make a lot of fuss so that they listen to you. You shouldnt have to but sometimes its the only way. There is so much onus on carers just shouldering whatever burden they have to carry without any support, then when things go wrong they point the finger.

[Iremembertheelderlykoreanlady]

No judgement from me at all.

I think being a parent to any child can be mentally tiring but I honestly don't think I would cope in your situation.

You are a strong woman OP. You've done this for 14 years.

I really really hope that the NHS start getting on top of non covid stuff soon and you get some respite.

[YouokHun]

No judgement from me. What an incredibly tough and relentless job parents in your position must have OP and however much you love your children and will never stop doing all you can it must be exhausting. No one in their right mind could fail to appreciate how it must overwhelm you at times. I wish I had something useful to contribute except to say that I admire you and I’m sure that’s true of many others here and in real life. I really hope the short break foster care is put in place very soon. Is there any extra support via charities under careforcarers.org.U.K.?

Covid has annihilated many services as I’ve experienced in a different situation from yours (trying to care for my terminally ill father and working in MH care myself). It’s so frustrating because it isn’t the fault of frontline staff. we really need to have a more humane system and be prepared to fund it properly Covid or not. It makes me so angry that there is a silent army of carers out there who are on their knees due to the lack of support and the slicing of funding. I’m sorry, my post is not much help to you but wishing you renewed energy and some support and I have admiration for you OP

[chickensaresafehere]

I'm overwhelmed by all your replies.
Thank you for your support & especially for not judging, it means a lot & makes me feel less alone.
It's so sad that there are so many more like me, struggling to keep it together.
At the moment I'm struggling to see a light at the end of the tunnel but I really am worn down.

[Polkadotpjs]

You are definitely not unreasonable. I read a friend's posts about her 14 year old and I feel the love ooze from them. But I can tell it's hard. My sister is disabled and my mum is a bloody warrior. But she needs a break sometimes and so do you.

[MLMsuperfan]

OP I hope you get a break soon, you 100% deserve it, and your feelings are totally understandable.

[Embracelife]

Call social worker

Call gp for you and have a break down and have gp Call social worker

Would you haVe carers in the house? They can come with ppe. Get sw to set up emergency payments for an agency until the Foster care respite is organised
Holidays referred to sw can access funds
It is faCt that persistence and saying clearly you cannot cope may help to move things forward

Speak to your dh maybe he can take leave so you caN share the care
On his days off he takes over so you get a break.

[Dunnesstores]

to all of you caring for people long term.
I've no advice but just want to say op, you're not been unreasonable. I'm sure you adore your child but it's ok to say this is exhausting and not what you'd hoped for for all of you.
I really hope things return to normal soon and while it's not a solution maybe you'll get back to a routine that is more doable for you.

[Smurfsarethefuture]

OP, what can you strip back on in your daily routine at the moment? Are you trying to do everything brilliantly, perfectly? Can you keep things simpler? Just so that you can get some breathing space for yourself xx

[salsmum]

Mum carer to DD for 32 years next month please check out your local carers support group they can help x

[Walkoflife]

I could have written these exact words!
My son is 13 and has severe autism,ocd and is non-verbal.
I’m beyond exhausted and I understand the not being able to relax.
I’m so used to having to constantly be on edge when I’m around him that even when he’s at school I still feel on edge.
Message me if you fancy a chat,it’s good to talk to someone else who understands
Take care
Xxx

[Justsocross]

Gosh you’re amazing no one could judge you badly . What you do is incredible but it’s so hard and wanting a little time off is natural!! Can anyone else help ?? Many great suggestions above . I do hope and pray you get some respite because it is true people like yourselves are bloody amazing and deserve so much more than you are ever given x

[x2boys]

@Iremembertheelderlykoreanlady

No judgement from me at all.

I think being a parent to any child can be mentally tiring but I honestly don't think I would cope in your situation.

You are a strong woman OP. You've done this for 14 years.

I really really hope that the NHS start getting on top of non covid stuff soon and you get some respite.

I'm sure your trying to be kind but comments such as you don't think you could cope ,I always find really patronising,most of us caring for severely disabled children are just normal people ,you cope because you have too and it's your child and you love them what ,s the alternative?

[speakout]

x2boys

I agree. It is patronising.

I am sure it isn't meant that way, but comments like "I honestly don't think I would cope in your situation" are really unhelpful.

Because in hard situations you just have to fucking cope. As you say x2boys what is the alternative.
And carers are not super human, are no stronger than any other person, we just have to get on with it.

[speakout]

Walkoflife have you had counselling? Finding some space to relax is very important for carers, and if you are feeling so on edge permanantly that isn't good for you in the long term.
Finding a way to decompress and nurture yourself is crucial.

[Willaw]

Absolutely no judgement from me either. Similar boat.

I was just a normal mum to my 'normal' child and then we had our disabled child. We didn't know our beautiful youngest child was going to need lifetime care until she was about 18 months old. Life changed forever. DHs work carried on as usual but I'm pretty much incarcerated. Try my hardest to keep other DC lives normal so they can do all the things that they're peers can do but their lives are affected by their disabled sibling undoubtedly.

I spend most of my days on my own with my disabled DC. My lifetime hobby I can no longer do, we have never been on a family holiday. Family are counties away and are probably glad they're too far to help. We get the occasional, "oh you do so well" patronising pat on the back BS before they scarper back to their normal lives.

It's shit. We're just a normal family trying to live with something that just happened to us, something that could happen to anyone and a lot of the time I'm just waiting for life to end because is so tedious and I hate the "you're amazing, I couldn't do it" comments. I'm not amazing, I have no sodding choice and neither would the well meaning commenters if they found themselves in the same boat.

[stopringingme]

I have sat here agreeing with everything you, and many other fellow Carers have written - I feel the same - it is never ending

I am fed up of constantly fighting for everything and filling in paperwork and answering questions - we have a diagnosis, we know what is needed just supply it ! It is like they say jump and you have to ask how high.

These school holidays are just going on and on - I cannot wait for Monday and some time on my own in silence.

[bookworm14]

Absolutely no judgement here. I have a sibling with multiple disabilities so I have seen first-hand how relentless it is. People have no idea how little support or respite is actually available (even less since social care services have been cut to the bone due to ‘austerity’). One of the many reasons I am sticking at one child is because I know I could not cope with a child with severe disabilities, particularly in light of this lack of support.

You are amazing and there absolutely should be more help for you and everyone like you.

[AtrociousCircumstance]

I hope you can get some respite very soon somehow. Respect to you.

[YouokHun]

How are you getting on @chickensaresafehere? I hope you’ve found some more reserves or that there are some signs of support being available. I really felt for you and others in the same position when I read your OP.

[Bluntness100]

I also hope you get some respite soon too op. No judgement from me either, my friends son is severely disabled, and although he’s now early twenties and living in full time care (the violence became too much) i honesty don’t know how his parents, and in particular his mother did it for twenty odd years, it was all consuming. And to be honest it still is for them. If they aren’t visiting they are face timing jist so he can hear their voices.

Hats off to you. 💐

[speakout]

honesty don’t know how his parents, and in particular his mother did it for twenty odd years,

Are you serious?
How can you be so patronising?