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

Lowering the tone with foul language. I wish Mumsnet banned the use of four letters. Why don't you take your own advice?

If you're struggling for food and are willing to travel download the olio app. So much food is donated from Iceland (listed after 6.30pm on the app) and Tesco (listed after 9pm) that it will last you the full week. Fruit, veg , meat, bread, you name it. Hope things get better for you.

Wow op, you are amazing. I can't begin to imagine the stress and exhaustion you must live with.

To those who don't get the horse riding thing. The RDA so some incredible incredible work. A family member is heavily involved and when I was a child I often used to sit behind a disabled child whilst they were on a pony. I remember one mother crying because that 30 minutes once a fortnight was the only time her child was calm.

Our society is screwed. I'm going to do a small tiny bit and donate regularly to our local RDA. Here's the link of anyone else wishes to as well.

www.rda.org.uk/donate/

I'm afraid I have no practical help ip but I wish you and your child the very very best.

Lowering the tone....Jesus Wept we arent in the 70's.

I don't have a severely disabled child but I don't have to work hard to imagine why the Op can't work. Nor do I find it difficult to imagine how important those riding and swimming lessons are to a child who cannot access the ordinary pleasures of childhood.
Food banks would be more than pleased to.help.
Some really awful comments on this thread.

If he can't get DLA he should get PIP if he still needs a carer and UC if he can't work. Sorry if you're already getting them for him and I've misunderstood, I wasn't sure from your post if payment for DLA stopped and he gets nothing.

Lowering the tone with foul language. I wish Mumsnet banned the use of four letters. Why don't you take your own advice?

FFS! Why don't you do one! Clearly has no clue.

I read your whole ‘let them eat cake’ post too.

It is incredibly tone deaf and ignorant.

to compare your own temporary discomfort with that of someone providing round the clock care to a severely disabled child is unbelievable!!

I went back to full time night shifts after 5 months Mat leave. Nearly broke me after a few months. My situation wasn’t even a fraction as difficult as OPs.

you cannot work two days a week when you are already providing round the clock care. The OP gets approx 6 hours ‘off’ a day when her son goes to school.

she needs to sleep and somehow find a way to make her budget stretch. She can’t just buy a takeaway if she’s too tired to cook!

@Overthebow i bet you’re a Tory voter.

I understand about DLA though. I have a Foster Son with complex learning disability. He gets higher rate care allowance and lower rate mobility. I keep a spread sheet of how every penny of his money is spent on him and the rest sits in bank until he needs something. Social Services have never asked to see how his money is spent but spread sheet is updated every week and I keep receipts for everything I can too in case try hey want been to as audit me at any point. I have kept receipts for things like swim lessons, prescription goggles for 6 years in a filing cabinet.

You using the DLA on other things is perfectly legitimate. It's only on mumsnet that people just keep it to spend it on the child. I'm mum tona disabled child and know a lot of parents who are too. All of them use DLA for whatever it is needed for.

Spending it on proper food for yourself, so that you are properly nourished and able to look after him is for his benefit

Using it to keep the house warm - in many cases that too is for the benefit of a dc.(and I benefit too).

My god- this is possibly one of the most depressing things I’ve read in ages ( and that’s quite an achievement)

so many posters on here should be embarrassed at their lack of compassion and understanding.

@savingallmylove I wish there was some advice I could give. You are in an impossible situation, yet you are doing an amazing job. Chin up- things will get better.

Exactly.

So many utterly ignorant and stupid comments on this thread.

Dla is for anything to make the child’s life better. Having a carer who can eat and function normally is making their life better ffs.

People do not check what dla is spent on. Most parents of disabled children put it into their household pot and spend it as they wish. If you don’t believe this you’ve not got a clue. Join one of the many groups on Facebook for dla where there are 60k members and see peoples posts about it all.

I have a severely disabled child. I cannot work. Childcare for disabled children is almost non existent. Yet alone “good” childcare. And try working when you’ve had no unbroken sleep for 10 years.

This thread is a like a massive empathy fail.

I can't get over the number of posters suggesting 4-5 hours of broken sleep is plenty and you should be out scrubbing toilets. W.t.f.

caringcarer
i Think you should change your name as your certainty no caring carer.

In fact - just to prove a point - my son gets high rate dla. He also gets £1500 a year from our local council (Norfolk) to spend on activities and days out as short breaks because they don’t expect dla to fund this.

I'm so sorry to sound so ignorant but how does a child with the mental age of a baby ride a horse?

I have a friend with a child with very complex needs (still in a nappy etc) and there is no way he could get on a horse.

Please forgive me if I sound ignorant, honestly. But as others have said, this just feels like it doesn't add up somehow.

Happy to be put in my place and someone day otherwise.

There are many adjustments and special equipment that can be used to enable all sorts of things. Riding for the disabled is specifically geared up for things like this. My friends son does it. He has a mental age of about 18 months in a 10 year olds body. He has an adapted saddle and two carers on either side helping him.

I have a severely disabled son, who couldn’t be left on his own and didn’t sleep very much. I am in the lucky position of not having to work when he was very young. But it is extremely difficult, so I understand your life in part. I used to sleep in the day. Unless you live it I don’t think some people realise how hard it is - I envy their ignorance - that is not meant in a snarky way.

i, like you, used to ring fence my son’s DLA for spending on him and his activities, but as he has grown older (he is 15) I have grown to be a little more flexible with what I spend it on. I save some (especially during lockdown when we couldn’t go out), but some of it goes on ‘helping out’ with household expenses, for example my son uses loads of water in the shower, gets through shampoo and soap like it’s going out of fashion and won’t wear clothes a second time (trousers). Maybe, you could put some of it towards your food bill.

I read a book about looking after children with autism by a Mum and she said the first thing you have to remember is to look after yourself, because without you their world falls apart.

Look after yourself.

Horse riding clubs have ways of supporting disabled children to ride. Just as swimming instructors have ways of assisting disabled children to swim.

Both can be forms of therapy. Adjustments can be made.

Thankyou @Afterfire

The OP can't possibly work unless she can bring in 80k + and pay a day and a night nanny. And clearly she shouldn't starve. So some of the DLA needs to be (and can be) spent on living costs.

@Vintagecreamandcottagepie please google Riding for the Disabled Association and stop being so pig ignorant. I volunteer at my local centre and there are many disabilities with various different needs. Sometimes you will have a team of volunteers helping a disabled child/adult onto a horse and then one on each side holding a leg in place and another volunteer leading the horse. There are special seats and reins hold them in place or help them balance. Over years they can learn to stretch their legs down and sometimes ride independently. It is physio therapy as well helping with mental well being and providing respite for their parents/carers. Plus it’s something to work towards, their own hobby they can improve on every week. They can share a special bond with a calm and safe pony. There is so much to Riding for the Disabled and your comment is insulting. Please do your research instead of having an empathy bypass.

People who don’t have disabled children have absolutely no idea OP.

ignore them all.

Of course you can’t get a job.

You sound like a wonderful mum. Reading this just made me well up - you give so much for your son, you sound absolutely brilliant

It's all quite Dickension, isn't it?

I can't help but think there a few posters on here from the SPAD offices of Chloe Smith and the ever-lovely Therese Coffey, testing the waters.

i have also done a quick calculation and it comes out at approx £2,600 a month (650 a week)including higher DLA care and mobility also guessing rent of £800 a month to come of so possible left £1800 left after rent

benefits-calculator.turn2us.org.uk/result/6dd8f96f-6e56-42e2-b7dd-5fbdec80cd7f

if the op cant manage on that then a serious budget needs to be looked at,even with a disabled dc