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.

[Pinkyavocado]

No you’re not being unreasonable. Been doing it for 20 years plus. There’s no end to it.

I don’t give a damn what others think. Those in the same situation will understand exactly where you’re coming from.

I remember the first time I went to a support group when my dd started at a special school. It was so nice to speak openly and absolutely no one judged. We all agreed that had we known we never would have had kids !

[EveningOverRooftops]

Same boat op. I hate it and hate how I’ve lost myself.

Today I walked to the shop and could’ve cried as I felt free for the first time in a long while. I was a lone and that was it.

[Twatterati]

I can't imagine anyone will have anything but empathy OP - I have friends who are parents to children who need round the clock care and their life is completely exhausting, as is the worry about the future.

I really hope you feel you can come here to vent and get support and also hope that you have support in real life too.

We would all feel the same if we had to spend a day in your shoes, no one will be judging - they probably all feel like I do and wish there was something we could actually do to help. Xx

[ScrumForward]

I so hear you. I've been fighting for help for my ASD son and got absolutely nowhere.

I did a SARs to the Local Authority and now l know what they really think of me and the lies they told me.

But do l have the mental strength to challenge them...again...and hold them to account? I really don't think l have....and with that I'm letting my child down

[Smurfsarethefuture]

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This might be of use x

[MakingPlans21]

What an amazing mother you sound! Parenting is hard at the best of times. Can you get any support?

[Couchbettato]

Kids, disabled or not, shouldn't be our whole world. We lose our sense of identity if they are. They just become our identity and it's not healthy.

It's completely normal, and very much ok to feel fed up of it all.

We've bred this culture where if you have children you're expected to be almost zealously infatuated with them with your every waking moments when really that's not real life.

Being a carer for someone with additional needs, special needs and permanent supervision is not something we think of when we start a family. We imagine help, breaks, and eventually our kids flying the nest.

OP you're doing an amazing job, but you're allowed to feel how you do, and you're even allowed to tell people this is how you feel because you're allowed to expect help.

[LakieLady]

to all of you who are caring 24/7. It's a fucking disgrace that services that support people who are caring for people with complex needs aren't being properly funded.

You all do a fantastic job, for a frankly insulting £67 a week.

It must be tougher than I could ever imagine.

[x2boys]

I have to say I have found this particular school holiday harder then usual ,my son's special school was closed from march to September last year and then Xmas to march this year ,my son coped with lockdown fairly well ,but he just didn't settle back into school in march and then breaking up again a couple of weeks later has really confused him ,this Easter holiday has seemed never ending.

[GoToSleepBabyPlease]

You are a superhero. Honestly, I have the utmost respect for people who do what you do.

I wish I had an answer for you.

[Wednesdayalltheway]

My heart goes out to you.

[IdblowJonSnow]

You're a legend OP. No judgement at all from me. Hang on in there, I hope some support is just around the corner. I can imagine that lockdown has made everything much harder than usual.

[Heatherjayne1972]

I’m watching my sister do a similar thing
So no judgement here
It’s a tough tough road. She says that its the never ending relentlessness of it all that’s the hardest
Usually children grow develop and fly the nest but when that’s not going to happen it’s soul destroying
I’ve no words of wisdom just to say how amazing you are op to do those things you do

[speakout]

Apologies as I haven't read all the posts- but I do hear you OP.
I am a carer for an elderly parent and and my adult DS who has severe MH problems.
Both live with me.
Sounds like things are tough right now, and I understand.
So much I could say, but would take pages to write everything.

I know situations like this can impact everything.
Support can help so much.
Do you have any carers support locally?
I have been able to access free counselling, help with applying for PIP for my son, even grants for me to have beauty treatments and yoga classes.
When life is hard it is not always possible to change your circumstances.
But you can change your reaction to those circumstances.
You owe it to yourself firstly.
But it also helps the person you care for.
If you can - despite everything - find some joy, and show up with that joy authentically- then you help that person you care for.
Investing time and care for yourself is the single most important thing you can do as a carer. It allows us to be a rock, to have strength.. To be a better carer.
It helps no one if you lose yourself.
Claim your right to joy.

[coffeeandgin26]

I can't say I understand because I don't. I've never been in that position but fuck anyone who judges because they wouldn't have a clue how it is to be in your position.

I knew support wasn't good but I didn't know it was so bad, and that's shameful.

I don't even know what to suggest other than to keep going. I know you don't have any other choice but to do that, but I hope at some point soon the support and break that you need comes along.

You, and everyone who is a career - you are bloody amazing.

[Hoggleludo]

Gosh. My best friend was disabled he died a few years back now. But he was a paraplegic due to his illnesses. He couldn’t breathe unaided much or talk or move. So needed a massive amount of care.

His mum used to go to a respite thing? I mean this was 20 more odd years ago so I’d assume there’s still things like that today.

I’m here if you ever want to chat. It’s so so so hard and I can’t even imagine. You’re doing an amazing job

[5zeds]

[speakout]

Hoggleludo

Helpful.

[Yuppie20]

I work in care services and helped look after my disabled brother for 20 years until he died. My mum was run into the ground. She didn't have support from services because she didn't nag or shout the loudest. Now working in this area I see that it's the families that phone all the time and shout the loudest that get the services they need not necessarily the ones who need it the most.
Get on that phone as exhausted as you are and fight for respite and other services. Its unfortunately the only way!
Really feel for you

[x2boys]

I don't think people realise just how little respite is available for parents like the Op and myself ,the only respite we have ever been offered is a day a week in school holidays in a special needs play scheme ,which hasent been available during the Pandemic,also my son's special school was closed just like most other schools ,despite being told vulnerable children would have a place in school ,not in a lot of special schools however ,a friend of mine has been in her knees begging for support and got offered one hour a week ,her son has very different needs to mine but still extremely complex

[x2boys]

@Yuppie20

I work in care services and helped look after my disabled brother for 20 years until he died. My mum was run into the ground. She didn't have support from services because she didn't nag or shout the loudest. Now working in this area I see that it's the families that phone all the time and shout the loudest that get the services they need not necessarily the ones who need it the most.
Get on that phone as exhausted as you are and fight for respite and other services. Its unfortunately the only way!
Really feel for you

This is so true!

[OrangeSamphire]

My son was due to start going to a short break respite centre this month. But it’s closed because they can’t staff it. Another one locally closed for the same reasons a year ago. This is the reality and it’s shit.

But @speakout’s lovely post is also true. We can find joy amongst all this and you will, OP. This is as important as securing the practical support that you need.

[speakout]

Physical respite is mostly unavailable.
As carers we can work towards giving ourselves some emotional respite.
Just a few moments.
Some meditation.
You tube yoga.
Light a candle.
Self affirmations.
Releasing emotional obligations.
Letting go of guilt.

Respite can be something we claim.

[SheenMcQueen]

So much sympathy from me. I think you need to make some specific plans to help you. Things that are achievable:

Suggestions:

1. Firstly, as other's have said, reach out to every single charity/organisation and ask for help.

1. Agree with DH that you will each get one day a week (or if that's not feasible) a fortnight off. Completely off. On that day you each can do what you want: sleep, drive to the sea, go shopping, have lunch with a friend. The carer doesn't phone the person with the day off unless it's essential.

1. Maybe have a look at some of the respite holidays and if they look expensive, set up a Go-Fund-Me page to raise the cost. In fact you could look at crowd funding to possibly engage a specialist carer one day a week? Do not be ashamed or afraid to ask. If any of my friends were in your position, i would ABSOLUTELY want to contribute/help.

In the meantime, keep on keeping on, but give yourself hope, but making some plans.

[speakout]

OrangeSamphire

Thank you.

This is something I feel quite strongly about.
As a long term carer for two adults I could wear myself to an emotional thread.
My DS suffers with deep depression, he is 23, unable to work two suicide attempts in the past year, involving police and social services. He lives with me and is living a half life.
My mother is 88, frail, needs a lot of practical support, and isn't an easy person, full of frustration and anger.
It would be too easy for me to break and be desolate.
I fundamentally refuse to do that.
I claim my right to live a life with joy.