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.

I hear you. I have a 15 year old with severe autism.Our respite centre has been shut since last March as is the adult day centre.

You're having a shit day and are allowed to let off steam, no judgement here! Handhold x

I get you. Sometimes it feels like your carer/admin assistant/doctor/nurse whatever really rather than just Mum

anyone judging needs to give their head a wobble

I can’t imagine how hard it must be. Finding it hard and needing a break doesn’t mean you love her any less, almost every mother has been there and not had as much as you to cope with

No advice unfortunately, no judgement, just some kind thoughts sent your way

I'm so sorry your support has been canceled. Being 24/7 for 14 years is incredibly tough, so feel free to rant away. Or just be sad/angry about it. You're doing an amazing job in what is often a thankless task, give yourself the time today to feel okay feeling this way. You're allowed to love your daughter and be sad and worn out with it all.

No judgement just support

You are doing a fab job under difficult circumstances so please don't beat yourself up.

I support an Autistic child in a mainstream school and as much as I enjoy supporting him I know that I can wave him goodby at the end of the day then heave a huge sigh as I'm exhausted !

I can only imagine what it must take for his parents to be caring for him 24 hours a day in the holidays.

You have my utmost respect

You are amazing chickens.

Covid has really showed the cracks in community care even though we all understand that it is absolutely where care of the vulnerable should be happening but it should not be allowed to fall off the wagon as soon as something else comes along such as Covid. There really are no easy answers in your situation, but and I know it is trite, self care is still so important. I just wish there was more respite care provided it could change the face of carers experiences so dramatically.

Goodness no judgement here. I have 2 small children and I'm absolutely done in. You are a hero.

No judgement here. I'm 16 years in and I'm knackered. Constantly on high alert waiting for the next crisis, barely sleeping you know the drill.

My DDs CHAD team social worker is just about to present my DD to panel with a view to getting 6-8 hours a week respite for me so I'm keeping everything crossed that she gets approved. I love my child to bits but being on call all day and night every day of the year has taken its toll.

No judgement from me either because I've been there; I was always on my knees by September as there was very little respite or support over the summer - and that was without COVID and school closures. I didn't do an 'amazing job' either - one day became the next and it was a real grind to get through it all. When my son moved into supported accommodation I was astonished at how quickly August passes...

I don't think anyone who hasn't experienced 'caring' at this level can really understand just how brutal it is.

No judgement here, just anger on your behalf that our society runs carers - especially mothers - into the ground.

Oh goodness, OP.

I am in the same situation with my parents. My mother died a couple of months ago instead of feeling sad, I was relieved. Then I felt guilty for feeling that way. It's hard. It's a shame restbite not free, because I believe every disabled person deserves 4-6 weeks of it, spread out in the year, just to give the carers a break. Can you ring social services and ask for support? Sending hugs

Caring is the most isolating thing in the world even before Covid. I hope your social worker or GP can help you. Too often carers are just left to it. Sadly, the Pandemic has made things much worse. Im hoping you will get future support when vaccinations etc perhaps help lift the Lockdowns. I really feel for you as I have been where you are, except I was caring for an adult.

Yanbu, that sounds so hard and exhausting.

OP you’re allowed to feel burnt out. It’s a tough gig.

What I find really frustrating is the apparent postcode lottery, my DSS has attended school FT and there’s been no change to the provision of respite care - whereas I hear of so many people who’s respite has been totally withdrawn with no end in sight.

No judgement from me.

I've worked in learning disabilies in the past but that was in the 80s, and back then there did appear to be more options for respite care, especially weekends and/or school holidays. I still don't understand why this has been cut to the bone, often this is how parents cope.

I work in mental health now, but my friend works in learning disability care. She works in day services for adults, but these services are being cut to the bone, supposedly in the name of "progress". The official line is service users should be using mainstream services, but in reality this isn't always appropriate. Again, this means parents are having difficulty coping, because that day care is the only time they get some respite. Seems like a false economy to me.

Ps posted too soon, I hope your social worker is able to arrange respite care for you xxx

Wow, I cannot believe anyone would judge you for that. I know it doesn't help but what you are doing is genuinely amazing and I'm so sorry you haven't got more support. It's not right. Don't feel bad for feeling fed up and expressing it, you are only human.

I hear you! I’m so glad it’s not just me.

I can't fathom how anyone could judge you. I'm so sorry you're feeling so low and overwhelmed. I can't even imagine how hard this must be.

to all you parents and carers out there for your disabled children, you are amazing! I am so sorry OP that you are exhausted and just feel so DONE, and i wish that i did not live so far away (canada) or i would be on your doorstep to drop a care bag (socially distanced of course) of wine, nice teas, lovely cheeses and crackers and a GIANT bottle of the best bubble bath I could find.

Not judging at all. Just sorry it’s so hard and has been made harder for you.