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

I think most pps have ignore the fact you are clearly exhausted and depressed and worn down. You need proper rest and respite.

If you fix those problems you will NOT feel so hopeless and desperate and you will start to see chinks of light, despite being cripplingly poor you may figure out some ways of boosting your income.

One of my friends provided small animal holiday care eg over Christmas and school hols, cheaper than your average "pet hotel" and it's nice easy work and DC may like the animals. You can advertise at school and on FB. Dog walkers and mother's helps or daytime cleaners are often in high demand, my cleaner charges £13 an hour and I pay her cash.

What have you tried re your DD's poor sleep? Have you seen a consultant about prescribing melatonin? It is unusual but possible for children. Also there are loads of charities that can help you with sleep aids and strategies - about a dozen are mentioned here Helping your child sleep

While your ex is off work could he provide respite? Even if it missed your DC missing a day or two of school, maybe your ex and his hateful mum could take DC for long weekends (fri to mon, during half term etc). Maybe your parents could help you drive DC to your ex if you can't afford the petrol.

Could you stay with your parents for a while? Or even move back in with them? If I had a DD in your situation I'd move heaven and earth to help. I appreciate if it means moving areas you may lose access to the horse riding but you may find a replacement scheme. And maybe even find more respite carers in their area?

Do your parents and ex MIL know what you are going through? Could they help with some money for food for you? Until your ex partner recovers and is able to help.

tootiredtospeak
I have terrible insomnia. I used to get my melatonin from the US as Dh worked over there. When Covid came he lay his job so I had to look for an alternative.

The NHS only prescribe 5mg of slow acting melatonin. It does nothing for me.

Came across Ashwagandha. I bought some from H&B and it was ok. Took one pill per night.

Then noticed Costco do it. Theirs recommends 2 pills per night

I take it just before my head hits the pillow and 10-15 minutes and it knocks me out
With 20mg of fast acting Melatonin from the US I used to get about 4 hours sleep.
2 pills of this stuff and I am out for the count for at least 5 hours, sometime 6 or 7 on occasion

Recently I read to not take it for more than 3 months but I have been on it for 2 years and don’t seem to have any of the side effects.

What have you tried re your DD's poor sleep? Have you seen a consultant about prescribing melatonin? It is unusual but possible for children. Also there are loads of charities that can help you with sleep aids and strategies - about a dozen are mentioned here Helping your child sleep

Tried loads. Haha, nothing works. It brings me to tears but nothing works. Of course we've tried melatonin. Not sure why you think it's uncommon or unusual for children? About over half the kids in his special school have probably tried it, every parent of a poor sleeper I know has tried

Sadly my DS just doesn't need much sleep. It's the way his brain is wired - he doesn't feel tiredness the same

Sorry if I sound catty but just so fed up of being asked if I've tried everything

'Have you tried melatonin?' Is giving very much the same vibes as 'Have you tried ginger biscuits?' To a pregnant woman with HG sickness

Yes I could spare 2 hours. I think I can work for about £120 a week before it impacts my carers allowance too :)

Thank you for this - I'm just having a look. Not sure if it'll ask for qualification proof though, be a shame as I would be ideal - London England accent and friendly

Thank you

Did you read the OP?

I read the whole thread.

There is nothing that says that DLA has to be used exclusively for the child. It can be used to cover hidden costs of disability, including the fact that the op has had to be a career.

She needs to feed herself properly so as to be able to be able to care for her son.

She needs to be getting the £7 a week off her ex, yes I know it's crap but in her circumstances every penny counts.

She also needs to make sure that she is claiming all the benefits she is entitled to - I don't understand why she isn't getting the highest rate of DLA for her son.

You don't need qualifications for Cambly OP. It's so easy and you meet some great people that just want to chat!

@asdadult as I say, he isn't able to give me £7 a week. He doesn't have any income - like I said, his mum is taking care of him

She won't give me a penny. Like I said.

Thank you! I have no teaching experience - would you recommend teaching adults or children? They ask at sign up which group you want to go for (think there's an option to do both at a later date)

Then he also needs to claim the benefits he is entitled to

Go through CMS for maintenance. Then at least it's official and you're on the road to getting something.

Wow. I'm beginning to wonder if a lot of posters on here actually read the OP.
OP has stated that her circumstances are pretty crappy right now but she does have family support so won't starve. She literally states that. So why are so many posters telling her to ditch her disabled child's therapy? Why would that even be an option?
Sorry things are so shit right now OP. Hope things improve soon.

👏

Wow this thread made me so angry: so many people that either can’t read or comprehend the life of a parent caring for a profoundly complex/disabled child. Step one day in their shoes before telling them they can work while he is at school.
I have worked with families like OP. Most don’t work because they can’t. It’s too demanding. In a two parent family one may work if they can. It’s so not as cut and dry as these posters feel it is.

It’s already work, it’s already tiring on minimal sleep, physical, mentally and emotionally too. I’ve seen so many broken people. There is little help or respite and even if they’ve been given carer hours because the pay is so shit many don’t have the carers they should have and even the respite they so desperately need. What respite they are given is not enough because of course cutbacks. The admin isn’t normal life admin either. Hospital appointments, physio, ot, equipment, medications, fundings, it goes on and on.

@savingallmylove you had plenty of food bank volunteers etc who all said it was completley fine for you to access a food bank. So do it and find yourself some nutrition. You do need to look after you get why you wouldn’t stop your child’s activities. He can’t access the clubs/sports or friendships many of those commenting negatively children will have and it’s important he has some fulfilment in his life. You are doing a great job. Some of us totally understand, ignore those who have never experienced your position and their ill thought out comments. Maybe contact some support groups for parents like you there are bigger Charities but also smaller local ones often too.

Have you not claimed PIP for him?

I wonder why he's not claiming UC and PIP. Sounds as if he'd be entitled (to LCWRA element of UC too).

Some of the posts on here are exactly why most carers feel so alone. I often feel like people are looking down on me because I have to rely on benefits, because I can’t work full time and because I use DLA money for days out for dd (and cheap holidays). People don’t see what I do day in day out with dd, people don’t seem to understand that I am awake in the night with her, that she destroys my house, that she needs constant supervision. People assume I can get child care, they don’t realise that there is no child care for a child over 12 years with SEN’s, I can’t put her in after school clubs or holiday clubs as I would have to pay a fortune for a TA for her (plus she’s too old now for these things). People don’t realise that I haven’t had a night away from her for many years, that I have hardly any social life. I am Constantly tired, yet family members keep sending me links to full time jobs that I could apply for 😬.

My family are not supportive, they think I should be working full time even though it’s not possible, they don’t offer to have dd. And then when I mention the idea of dd going into residential care at 18 I get called mean for wanting to off load her.

People that don’t live in this situation just don’t get it, we can’t magic up a job and care for our kids, who’s going to employ someone who needs so much time off for hospital appointments, therapy sessions, physio, sickness and school holidays?

Don’t stop the activities because you know he needs them and your life might get a lot harder at home, if he doesn’t have those regulating opportunities.

do you have a social worker or support planner at the local authority?

Can you request the Personal Budget for 15 hours agency support be varied to pay for the activities because the agencies can’t provide?

different areas have different attitudes to what the budget can be spent on I know but it’s worth a try

We're all just trying to help the OP solve a problem....whilst we might not actually understand the OPs situation it doesnt mean our advice isnt valid....handouts are a short term fix....if you work in a food bank youll know thats true....real long term solutions are hard work but surely thats whatnthe OP should be trying to achieve....teach a man to fish....etc etc....you get my drift

In respect of PIP: latest figures I've seen extracted from the DWP and charities are that only 39% of new claims are successful. From beginning of claim to award letter (which is most likely a rejection letter) is currently taking up to 6 months.

If a rejected claimant - who is very ill or disabled, don't forget, often with mininal support - then decides to go to a tribinal, the current waiting list for that is between 6 to 12 months. Some people have in fact waited over a year.

The DWP frequently gives short awards of 1 - 3 years meaning that the claimant has to go through the whole stressful, intrusive ghastly process all over again relatively soon. These reviews are currently backlogged to the point where they are not even being processed and people are worried about losing Blue Badges and mobility vehicles.

My point being, 'can you claim PIP?' sounds simple enough but can be a very complex question. I wouldn't necessarily want to put a loved one with certain mental health issues through the gruelling process, and even if I did I know I'd be looking at a long haul and then a stressful review cycle. It is extremely difficult and often upsetting to get PIP and keep it.

For balance, I (and many others) have claimed PIP and had it awarded first try, with no assessment whatsoever. I was given an indefinite / ongoing award without any assessment- purely based on my form and the report of my rheumatologist. I’m in a number of health groups (I have lupus, asthma, pituitary issues, all sorts) and that’s a lot more common than people think because all we hear about are the horror stories. People should always apply if they think they are eligible.

I’m so sorry life is so hard. Some of us do understand and have seen it first hand. You do what you do to exist basically. Most of those criticising always have no clue at all and wouldn’t walk a mile in your shoes in reality!