I can't afford to live normally anymore, what's the point?

[savingallmylove]

No this isn't a suicidal thread! I'm not depressed. But I don't see a way out and it's terrifying

I don't have enough money coming in to cover food for myself properly. I'm living on soup and a few handouts from church (that I don't attend)

Now, I can't work so what do I do?

I'm a carer for my disabled child. When he's at school, I'm sleeping mostly or running errands that need doing, life admin etc

My monthly income no longer covers everything. There is no wiggle room, and I don't even have 'Netflix' or Spotify - my mum pays for my account as it's her family account

My son does swimming and horse riding but they're paid for by his DLA.

What on earth do I do? No it isn't a begging thread before someone reports me - My mum and dad will certainly feed me if I was starving or short!! But others aren't so fortunate to have family help if they're desperate

Ah I think you are getting a bit of a hard time here op.
I too have a severely disabled child and don't work as her needs are exhausting.

Her dla covers me being her full time carer and the loss of my wage.

It's so hard to pull back on something like the horse riding that makes a massive difference, I hope things improve for you soon.

@ReeseWitherfork do you seriously not get that these are NOT hobbies for the son!!! They are therapeutic! Would you be saying the same thing if she was taking her son to speech therapy or physio? Because these activities are often just as essential!!!

Absolutely this. I had no idea myself until I was blessed with our lottery win genetic miracle

I have actually and have spent many years without sleep while working school hours and then doing all the same caring as those who don’t work but have school age children on dla but do get a rest while theirs are at school.

I am normally a pretty harsh person but can't actually believe people think the OP should stop the horseriding and swimming. Life sounds hard enough :(

It’s very presumptuous to assume people commenting on here don’t know the ops situation. You cannot just assume because people are giving advice that they don’t too have disabled children/are carers etc… so no need to call everyone stupid just because they’ve offered advice. The op hasn’t really explained much on here so people are just trying to help with ideas. Many of us with disabled kids struggle and don’t have swimming or horse riding lessons as every penny goes on the essentials such as food. This is why people are suggesting to cut them out as many others in the same situation have done exactly that. A carer going without food is no carer at all.

Mum isn't "starving". Use your reading skills and listen to what OP is actually saying. Instead of banging on about private helicopters and bagpipe lessons. Idiot.

By eck someone left the cunt cupboard open tonight!

chin up OP, many of us hear you

OP, your mention of using your tumble dryer suggests that you have extra laundry due to your son needs.
Please can I ask if you claim a discount on your water rates?
I only had a quick look at the attached link for the water sure scheme but I think you would qualify. It might only be a few pounds but it would allow to buy some basic food for yourself.

www.turn2us.org.uk/Benefit-guides/Water-schemes/Water-Sure-and-Welsh-Water-Assist

I went back to work four days per week when my baby was 9 months old and I didn't get much more sleep than that. doing that indefinitely would be tough and I would no way suggest doing that but surely working two days per week would be manageable on that and would be a big help financially meaning the OP could eat properly?

Wow some of you are so rude and your use of foul language clearly shows what kind of person you are.

Haha, your joke just made me burst into laughter so thank you for that

Aside from saying in my very first post that I understand why she doesn’t want to give them up and never referring to them as “hobbies”, I’ve apologised to OP and offered a rationale for where my brain went. What more do you want from me?

If this is how many people genuinely feel about families with disabled children, it's no wonder we have the most heartless and uncaring government in recent history.

Just get a job like everyone else. Don't waste your money on horse riding. If your disabled child has any fun activities, you don't deserve charitable donations from a church 😳 FFS - how much of an absolute moral vacuum do you have to be to believe these sorts of things, let alone say them openly to someone who's struggling.

So many posters here quite obviously don’t have any clue how difficult it is to raise a disabled child, it’s jaw dropping. Especially as a single parent. I have spent many years volunteering for Riding for the Disabled Association and the joy and improvements to the health and well-being of many disabled children and adults is wondrous. I definitely understand why you want to carry it on OP. And I believe swimming probably gives just as much to your child, in exercise, well being, skills learned etc. People telling you to give them up, why? When there is little joy in your life I would not give that up. I’m sorry you’re in this predicament OP it sounds so tough. You are exactly the kind of family that deserves the help of a food bank. No you can’t have a part time job because you cannot function on 3-4 hours of sleep per night, I had that during the baby stage and it nearly broke me! I can’t imagine how that must be over many years.

I went back to work when my 2 older children were 6 months old (and awful sleepers) too. It was knackering. But eventually they started sleeping longer and it got easier.
My third child is autistic and barely sleeps. And when he’s awake he needs constant supervision. It’s a completely different ball game. Yeah I couldn’t have imagined it until I had him either so I don’t blame you for not understanding quite how hard it is.

If you think @Threadkillacilla is the problem on this thread then I'd suggest that speaks volumes about the kind of person you are.

Higher rate DLA as it happens. And making up the time at work for all the hospital appointments 25 miles away. Son did not have horse riding lessons. He did have many other expenses due to his ongoing lifelong disability (he’s over 16 now so no payments but I’m still working school hours to care for him outside that inc all night every night).

Wow you’ve literally just repeated what I said. Usually when people use language like that it’s evidence of of a lack of intelligence or a wider vocabulary. Sad.

@savingallmylove , I’m also the parent of a profoundly disabled child who is in receipt of DLA and I get Carer’s Allowance. Honestly, I would swap lives in a heartbeat to be able to go out to work. I also care for my elderly housebound mother (for free, as you can only claim one lot of Carer’s Allowance ). I would not wish my life on anyone.

Have you checked out Riding for the Disabled, just to see if that’s an option for you? Also, if your DC is in receipt of DLA, are there not any cheaper swimming lesson options via your LA?

@Kanaloa yes they absolutely can be essential!!!
I'm a careworker and know of several people who are literally only able to maintain their movement now due to activities such as horse riding or swimming.
One of my clients is only ever truly pain free when in the water.

I'm not saying this is the same for the OPs son but please don't underestimate the importance of such activities

Are you claiming everything you are entitled to, and have you applied for grants you are eligible for?

Push social care to fund the respite at a higher level in order to attract carers or provide respite via foster carers. If you have a nearby university some people have success approaching them about advertising there. Depending on DS’s needs continuing care funding may be a possibility too.

Have you tried to get swimming &/or riding included in DS’s EHCP so they will be funded?

Which is exactly why I said in my post it would be tough doing it indefinitely so I wouldn't suggest working four days per week! My point was that if things are really so tight that the OP can't afford to eat properly and she doesn't want to stop one of her sons activities then two days per week of work, perhaps a work from home job, should be manageable. there would be three other school days where the OP could catch up on sleep.

It's called Disability LIVING Allowance - not Disability Hobby Allowance. It's primarily for bills since the disabled are amongst the lowest paid in society.

I used to get DLA and now get PIP. It's for bills that allows you to live hence the names.