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.

[eatsleepread]

Fuck me OP, that's really tough. I take my hat off to you, seriously

[oakleaffy]

@chickensaresafehere

If your DC had severe autism, I Really empathise.
It seems so relentless.
A school friend had a violent Autistic older sibling and it was terrifying at times. And this was in an age before swingeing cuts.

Mum's friend had a lovely adult son who had a physical disability, which meant the parents barely slept as they were terrified in case their son had trouble with his breathing.

He tragically died {Expected} , they now have ''Freedom'' but don't enjoy it, as they miss their lovey son so desperately.

It must be incredibly difficult dealing with a disabled family member, especially when they grow and become harder to lift &c.

Anybody who has done caring for a loved family member knows how exhausting it can be.

[whiteroseredrose]

No judgment here either just enormous respect. Fourteen years is an incredibly long time without any real break.

I wish I had suggestions to help but all I can send is love and positive vibes. Xx

[Sahara123]

I understand. My daughter is 31 now . I just want to be able to wake up in the morning and the first person I think about is me and what I want to do, which makes me feel so selfish but I don’t have a minute to myself. All my friends adult children have left home and they are planning all the exciting things that they are going to do as a couple . Not me. Lockdown has been so hard , all carers gone and no support . I know I need a break , but sometimes worry that if I do get a one I might just keep on running and never come back ..... I won’t of course but I feel so guilty for even thinking that I might . I have no idea who I am any more, I’m exhausted . I worry about the future so much.
Sorry for the rant !

[Diverseopinions]

I think link with as many charities as you can and we all just have to lobby MPs, etc. But we need the support of charities like Mencap and our councillors or the House of Lords. See if the school have a parent liaison worker who can lobby for parents.

Maybe the BBC should do a documentary series on the effects of lockdown, and focus done of the episodes on those being cared for and carers.

It is unfair the spread of services across the country. In London, it seems better. A friend with two sons in their mid-twenties who have autism, one severely affected, has got them, recently, into a respite centre two days each a week. Before lockdown, the elder one attended day services 5 days a week - 10 to 3pm and both attended Saturday club from 8.30 - 4 pm. I think these services have been greatly cut since lockdown, but via school running holiday schemes and college, there seems to be provision here..in SE London. I've known people who have pushed for services and have got them.

It's so unfair how some families are not even getting Direct Payments.

You should be getting direct payments. Maybe use the PIP to pay for respite, finding a carer.

I really don't understand how parents can be left to soldier on exhausted.

When school resumes, it will be easier for you.

[DailyCandy]

That's extremely hard. I think it's shameful that parents who are carers to high needs kids are given very little real support. You need a break, before you get to breaking point.

[AcornAutumn]

@chickensaresafehere

Husband is great,helps out as much as he can. No family to help. Sometimes I think my life would be easier if we separated & shared the caring but it's not what I want as I love him.
Covid has made things worse,but I know it has for everyone.
We are waiting for short break foster carers,social worker is sorting it.
Most support has been cancelled for the summer holidays.
I am dreading it.

It's been noted in my circle that some parents only give each other time off if they get divorced, and we were thinking, why is that? Could it be quite nice to have a day or a night off within a marriage, for each person to do as they please, be it have a bath, go for a drink, do an activity etc.

Is it worth chatting about something like that so you both have a scheduled change of scene?

[vixeyann]

You are not unreasonable. My heart goes out to you as I can't even imagine how relentless that feels for you. I hope you can reach out and that services get back to normal xx

[JackieTheFart]

YANBU

[Whatflavourjellybabyisnice]

@TableFlowerss

The government should be doing more to help parents like you! If you walked out, they’d have to step in!

This exactly. You do amazing

[Mrsmadevans]

Have you looked into direct payments OP, you can hire your own carers to help you if you use this scheme..

[Happycat1212]

Don’t assume you will get more help if you break up, when I broke up with my ex he did a disappearing act! So that is necessarily true ime anyway

[PickAChew]

No judgement here. It's relentless, sometimes.

Covid has done a number on the mental health of both of my autistic teens.

[Mistressinthetulips]

[Palaver1]

No one can ever judge you.
Completely understand
Its a nightmare and post code lottery.
Can only say I have some support .
Sometimes I really believe I'm caught in between a nightmare.
No you can't ever be judged .
The exhaustion

Stay strong

[Redskyyy]

No judgement here. I was a carer for dd for 13 months until she died suddenly and it was almost too much every day. Can you privately pay for respite help? We had an amazing nanny who was more than willing to do the extensive medical training needed and literally changed our lives by giving us a break.

[Crispina]

Well done for all you've done and I hope you get more support and help/respite

[OnTheSeaShore]

Oh OP, my heart goes out to you. I recognise so much in your words (and my child has only mild additional needs.) I can't imagine your exhaustion.

I wish I could say something wise and comforting, but I'm sending hugs and hope you can find a way to get some respite soon.

[Joeblack066]

No judgement, just a huge pile of empathy.
It’s so tough OP. Can you try to get a break?

[SchadenfreudePersonified]

No judgement - just sheer empathy.

I don't know how parents like yourselves cope - well, I do. You cope because you must, but it's incredibly hard and dreadfully exhausting.

I hope that you soon get the chance to get some respite.

[HeraInTheHereAndNow]

No judgement here.

My disabled son is now 20. It’s been very very hard. Every day now, I worry for him, when I am gone.

Sending a huge hug.

[OrangeSamphire]

Totally hear you OP. Similar responsibilities here.

Since it may take a while to find the right short break foster carer, has your SW got any plans in place to support you in the meantime? Carers coming in to take over for a few hours a day, for example?

Scope or Mencap can come and do their own assessment of your daughters needs and your situation as a carer that could be useful as back up if you need proof for your SW of what exactly you need.

You can’t wait for short breaks foster carers any longer without support. You need a break.

[RainingBatsAndFrogs]

No judgement here, OP, and I fully recognise that not loving the realities of what it is to be a Carer is NOTHING to do with how much you love your Dd.

It is so unfair that the lack of support for people like you puts you in this position.

You have my heart, but I am not knowledgeable enough to be able to offer any other help. I am just so sorry you are going through this.

[Deedyn]

You really do need support OP, I truly don’t know how you do it.

Sending hugs. Stay strong.

[needmetime]

No judgments here 💐. My brother (RIP) & sister now aged 32 had & have severe cerebral palsy. My parents canceled all supports the past year due to covid & are hanging on by a string now. My advice is to take any and all supports that are available & look to the future. I'm in Ireland so supports are different but if my parents had started my sister with a different organization it's possible she would be in some form of sheltered accommodation now... unfortunately they went with a different organization (&don't want to change her as she has made friends) but sheltered housing will never be an option with them now. I get anxious when I think about the future- looking after elderly parents & disabled sister...please don't judge me 😞