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

Horse riding and swimming are great and obviously benefit your DS, but they aren't essentials. Eating is, so you need to prioritise that even if it means cutting out an activity.

I get that you might need to sleep sometimes when your DS is in school if his disabilities mean he is up a lot at night, however life admin is something that many of us just have to fit in around work, school and anything else. You could get a part time job to earn a bit of extra money.

I don’t have anything helpful to add I’m sorry, just that those people with absolutely no empathy have no idea what you’re dealing with here. Being a carer is beyond hard work and no one cares about carers or the person they look after, the system is punitive

Assuming op's child is getting highest rates of DLA, she would have around £1200 UC per month plus rent paid ( unless she is having to subsidize private rent), £150 child benefit plus around £600 DLA so £1950 a month after rent paid. I'm sorry but even accounting for pony lessons and swimming lessons i am struggling to understand why op is going hungry. Maybe there are debts or something she's not telling us.

Its very obvious that many people on this thread have absolutely no idea what it is like to care for a disabled child. They still seem to think their input is valuable though.

Yes. The whole point of the thread is, 'what's the point of living if you're only existing' and then ignorant posters suggest taking away the two (cheap, subsidised) things which make the OP's son's life worth living.

OP, I'm so sorry times are tough for you. You sound like a wonderful parent and I hope you can get some relief satin.

To all the posters who've clearly got no personal experience of disability or living on benefits, may you forever live in your naive bubble. I wish everyone like OP could too or at least not have to deal with stupid comments from you making everything worse.

You won't find a genuine Christian on the planet who would object to their food donation being used by a single mother to supplement her own diet so that she can spend her son's disability allowance on low-cost therapeutic activities that allow him to have some quality of life.

I think there are some people lacking compassion and understanding on this thread. We're not talking about little Penelope taking riding lessons after school. We're talking about a profoundly disabled child with the mental age of a baby whose experience of life is improved beyond measure by these activities. Can people not understand that, given that she is actually eating albeit not brilliantly, these experiences for her son are essential to OP? Just try to imagine what daily life is like for OP and her son. And try to imagine what his life would be like without those activities.

OP, it's really shit. You sound like a wonderful mum to your little boy. I hope that in the future there is more help available for families like yours and I hope your fortunes change. In the meantime, please know that you are not a martyr, that you do need and deserve to sleep when you have the chance to do so, that you are exactly the kind of person that the church wants to help with food, and that there are lots of decent people who hear you and understand you.

Do you get universal credit, housing benefit, council tax benefit plus the dla and carers allowance? Do you have debt to pay that is leaving you short?

i think it’s unreasonable to expect OP to stop the horse riding considering it’s so cheap and is a kind of therapy for her child.

however, I do wonder about the father/ex. I know he’s unwell but I assume he receives some kind of benefits too? Could he not contribute a small amount - even just £10 a week.

NRPs on state benefits pay £7pw child maintenance. That’s what I get for two disabled children from ex.

You reckon she can do a few hours work? Who on Earth do you think you are to decide whether someone has enough energy to work?!!! Do you work for the DWP?!

The op is saying that her life is rubbish. Are you trying to push her towards suicide?

What are your qualifications OP? Either you work locally or from home - full-time. I WFH and do the school run - there's a degree of flexibility.
Otherwise could you star a small business from home?
Teaching English online / anything else you are talented in. Selling on Ebay, Amazon, Etsy

No, it is not. It is for care needs and possible mobility needs.

I used to work in the job centre as a benefits advisor. If you read my post properly I was advising her to go back and check she was in receipt of everything she is entitled to. If she is and she can't afford to eat something somewhere is seriously wrong... with a child in need of the care she describes and her as the only carer she should be able to claim a number of different benefits to support them. Not knowing her actual situation I cannot specifically advise. No they won't give her £50, but they may tell her she is entitled to a warm home grant for example.

And DLA absolutely is not meant only to be spent on extra things for your son.

Honestly, there is no issue with you using it to feed yourself. Please don't go hungry there's no need.

You really must put your own oxygen mask on first.

Also if your son is so severely disabled that he needs 24/7 supervision when awake, you really should be entitled to higher rate DLA which means you could get a motability car.

I would recommend you to get a benefits check.

Are you up most of the night with a disabled child?

Agreed.

The op can't work..a single mum and a child with severe disabilities who barely sleeps? Of course she can't.

This is why I think her fundamental problem is the fact the father seems to contribute barely anything.

I think you are looking at the DLA money in an unnecessarily rigid way. It’s to support your son, and his support is you, so it’s to support you too.

I’d like a private helicopter and a personal chef. They aren’t essential. His mother eating and having electricity in the home is essential.

Typical mumsnet - endless vociferous responses from people who clearly know bugger all about things, but are too blinkered to realise it. It's clear from the OP that this child would likely be eligible for horse riding therapy through the RDA or a similar charitable organisation. These schemes are incredibly valuable to the children who benefit from them, but are also provided for very little money. If you read the OP's post and thought she was paying £50/hour for a private lesson at her local RS, you're just not knowledgeable enough to offer a useful opinion, let alone repeatedly tell her how silly she's being to keep up her son's horse riding.

I wish people would think before posting sometimes - if it seems unbelievable that someone would be struggling to this extent while still paying for expensive riding lessons, that's probably because it is unbelievable - because that's not what's happening.

There are levels of severity with disabilities too.

You need to get some type of work while he’s at school.

I imagine OP is physically and mentally exhausted being the sole carer for her disabled child. What work would be suitable/appropriate?

I used to work in the job centre as a benefits advisor. If you read my post properly I was advising her to go back and check she was in receipt of everything she is entitled to. If she is and she can't afford to eat something somewhere is seriously wrong...

The advice to check if she is getting everything she is entitled to is good, but do you honestly think that all people who have to live on benefits get enough money to get by?

There are many people who volunteer at foodbanks who meet people every day who just. cannot. get. by. on their benefits without charities like food banks. It's not because they aren't claiming something they could. It's not because they haven't already cut their expenses down as low as they possibly can. It's because this government does not give one shiny shit about giving enough funding for disabled people and carers to get by.

Very sorry for your situation OP. I think the only way to deal with all of this is to take it one day at a time - we're living through economic times barely seen in a generation, and we have to believe it's going to normalize at some point. With that perspective it will hopefully just be a period of your life when things are this tough financially, and you will get through it with a little extra help. I'd suggest using a little of the precious spare time you have to look up grants for people in your situation. There's a bewildering array of them out there and some have very specific guidelines so I'd search for foundations awarding grants to children with your son's specific disability if I were you, but skip the ones only providing support for activities etc as that is not the main problem here. You may already be familiar with Family Fund. Best of luck to you.