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

Then did you just pass over the bit where I said I wouldn't recommend working for four days per week like I did as doing it indefinitely would be hard? Or did you just choose not to understand that bit?

From reading the full thread it seems like the ex husband has been seriously ill, is not fully recovered and is currently being cared for by his mother so I am not sure how realistic either of these suggestions are.

In practical terms, if you have been awarded care and aren't actually getting any, I would go back to the council/NHS and be clear that you aren't receiving the care they determined your son needed, and so ask for an alternative care package/the pay rates for the care in question to be increased.

The other thing you could look at is pop-up/top-up shops. Where I live there are shops that pop up in churches during the day - different place each day, and for £2 you can have a full bag of shopping, including fresh produce. We also have an anti-food-waste project that does a "pay what you can" system where you can have a whole box of fresh or dried goods for as little as £1 if that's what you can afford.

I think another real possibility is to just work for a few weeks I’ve done that before I needed to replace a laptop and literally worked for a company for four weeks knowing Damm well I was leaving at the end of it with the money to pay for the laptop.

I am reading this thread in disbelief. No wonder our society is in such a mess. I really feel for you OP. I am absolutely horrified by some of the responses on here. A very substantial proportion of people obviously have no idea of the reality of caring for a profoundly disabled child.

On a practical note I would suggest going to the CAB. They can check you are getting everything you are entitled to and also may be aware of other grants and charities that you don't know about. There may be some local organisations that they can signpost you to.

Riding for the Disabled is a bloody brilliant organisation. This isn’t just riding as a nice hobby the OPs son will be getting therapeutic benefit. It’s (usually) cheaper than riding lessons because volunteers kindly donate time, horses and use of a safe location. This isn’t in any way comparable to a riding stables trying to make a living by teaching kids to ride.

Op are there other options to think of.i. I your knackered so if this is just not an option for your own health then just completely ignore.
what kind of area do you live?is their an option to clean,iron,walk dogs for people.maybe even things you son wouldn’t mind joining in on.I’m thinking dog sitting especially.
would a lodger be an option.space in the garden for a lodger shed?
any respite care or friends to share childcare.
man’s even and I say this without knowingly your relationship but moving in with your parents?either permanent or semi to rent out your own?

Just remembered, I’ve seen videos on YouTube about being frugal, some supermarkets do what they call magic bags, name may be different between supermarkets. It’s a bag/box of foods for about £2/3. From what I’ve seen it’s not all out of date, rather close to date or damaged packaging. Could you phone your local supermarkets and see if they do that?

Exactly…the DLA is to make both of your lives easier - to keep you both in a warm
home with food to eat and any essentials he needs. Swimming lessons are aroubd £25 a month and Ive got no clue on horse riding but even middle tier DLA is £350 per month, surely theres lots left over after swimming and horse lessons?

I can’t believe people have been so awful.

I don’t think the child should miss out and I assume this gives OP a little break too, and maybe some social network with other parents as well.

I imagine going anywhere else isn’t very easy or accessible for the child.

I can’t believe people are suggesting your child should just split his whole life between school and home.

A midday supervisor role at a local school may be a good option? 1.5-2 hours a day. A cleaning job or lunch times in a cafe/coffee shop?

Also the £10 day thread on here may help if you search for it, doing surveys etc.

I think there is an app to check in your areas.

Olio is the app

Even when the OP gets to sleep when her child is at school she’ll be absolutely bloody exhausted because she will never get more than a few hours sleep in a row. And this will have been going on for years. And even in her waking hours, her child will require constant, vigilant supervision. For years. It’s entirely different to having a baby. It’s relentless.

Jeez. I think the ‘part-time’ job would also have to be term-time-only, something that can be left behind at the sound of the bell, and pay enough to make it worthwhile while not being taken off any benefits op can claim. Of course such jobs are around in their 000s, why aren’t we all making the most of these magical jobs?

Do you get any respite care, or any offered in your area op? I am sorry it is so shit.

Likewise, some of the responses are so cold and judgemental that I have been almost incredulous

Your situation sounds just like my daughter's. She gets no sleep as disabled 12 yr old child doesn't sleep much. She changes bed 3 times a night because of nappy shredding and smearing. She had to give up 2 small jobs as she was continually asked to fetch child from school ( a special school which can't cope!) Some posters have absolutely no idea how a parent of a disabled child has to live.
My daughter can't get a pa either, she has the funding granted, just can't find anyone who wants to work with such a challenging child.
I hope you're getting carers allowance (sorry if its been mentioned no time to read complete post). Please go to food bank or any community larders in your area , you deserve all the help that's going.
If you haven't got a social worker, self refer to children and families team, they might be able to get you some respite care.

Maybe if you tell us you income and outgoings people could help you cut down. With high rate DLA, child benefit, carers allowance and UC your income won't be tiny.'

Have you looked at supermarket reward schemes? I find the new asda one really useful.
Also my freezer is my best friend these days - large bags of supermarket brand veg around £1 and can last weeks - a lot better than fresh and no waste. Freezing a loaf bread and just defrosting a couple of slices when needed- same for rolls. Dried pasta/rice etc are always staples for the cupboard. Batch cooking meals and freezing etc. Sorry if these are all things you do already but just trying to think of ideas x

And yet the £20/month the OP still spends on those riding lessons could be being used for the absolute essential of feeding herself…

Cleaning! Im in the same position and I do it. Can choose not to work in school hols if you want, and im always available to drop everything and get my little girl from school when she needs me or take days off easily when she doesnt go in as I just reshuffle my cleans. Also when you are a carer to a disabled child they dont take money off your benefit for working unless youre earning big bucks which none of us are for the reasons above!

The main thing op needs to do is check she is getting the correct rate of DLA and child disability payment for Universal credit or Universal credit. Maybe a benefit check with CAB. Benefits for people with a disabled child, particularly a severely disabled one are significantly higher than basic benefits and on the amount she should be getting even accounting for the completely worthwhile activities her son does, should be comfortable without going hungry. The fact that she is not able to afford food suggests something is amiss with the benefit amount.

No. I read and understood you thanks. Your suggestion for 2 days work is not helpful to OP. She has has years of broken sleep and said she cannot work as a result. Why are you so arrogant to discount that?

MargeSampson
good grief are you stupid? Or just thick?

I suspect that giving the child that therapeutic activity may make life easier for op as well if it is a source of well-being. Remove it, and issues could ensue during the time it takes to get across to the child that they can never do it again.

Could posters perhaps remember that we have bankers claiming they make millions every day by pressing a couple of buttons? They print more money every day. What is it for, if not this?

He needs a mother who eats properly and has the energy to support him. Surely that is more important than horseriding and swimming. Can you not pause them temporarily until the economy stabilises? It will eventually, it always does x