Mental Health and Caring - feeling a fraud

Carers' health and wellbeing
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Hi, new here. Just wondering if anyone is in a similar position.

I’m a carer for my 8 year old daughter. She has a mobility issue which was present at birth but not officially diagnosed until 2 years 4 months. She can walk, but really struggles and will most likely end up on HRM DLA when she turns 10 as she sometimes uses a wheelchair. Because of this she has incontence issues and isn’t always reliable with her bathroom habbits. Takes painkillers which also messes up her toiletting. She is also diagnosed General Learning Difficulties, and Dyspraxia also thought to have Audiotory Processing Disorder. All thought to be caused by an underlying condition that we’re going through private testing for.

I love her but I often feel like a fraud for claiming DLA for her, as compared to other people I know who claim it for their children. She has the most horrendous meltdowns when tired or frustrated, but I still feel like I’m a fraud and someone will take the DLA away. I use the money to benefit her, like for half term next week we’re off to the circus because it helps to train her brain when theres so much going on and she loves all the colours and music (even though she’ll be exhausted by it to).

My family aren’t the most supportive so in my mind that backs up the evidence that daughter doesn’t need DLA and therefore I shouldn’t claim carers allowance. I do work part time although currently off sick due to an issue with my own medications. I have PTSD so again this backs up the evidence in my mind that I’m a fraud and should just stop claiming it and go back to work full time. And actually while not working nothing much has changed in terms of the amount i do bar I just don’t go to work at the moment.

Anyone else understand? I feel like whenever I speak to none carer parents they don’t get it and just say they have to work full time so why shouldn’t I? So again backs up my fraudulant thoughts.

DLA was hard fought for last year, she should of been on it from age 2/3 when the Health Visitor originally helped us fill out the forms but we only had enough evidence this year. They didn’t even speak to her physio or podiatrist just based it off those reports, so in my mind its still a fraudulant claim.

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Hi @hbuxton393 welcome to the forum.

If your daughter qualifies for DLA then take just say she wouldn’t have been awarded it if she didn’t meet the criteria and don’t feel guilty about it.

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I agree with @Melly1 if it was awarded then she IS entitled to it and you should never feel guilty as a result. You are using it for HER benefit so there is absolutely nothing wrong with what you are doing. I worked for a short time, in a school for PH kids. Many had severe LD and communications problems and the school had a light therapy room which stimulated the brains in the way you say the circus does for your daughter. That is VERY GOOD. The fact she is exhausted afterwards is also good as it means her brain IS being stimulated and it’s what many children in her situation really do need, but don’t always get.

Keep up the good work - I am in awe of parents who can deal with such disabilities, as I have seen how trying and emotionally draining it can be for you.

:pray:t2: :pray:t2: :people_hugging: :people_hugging:

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I keep being told this, but it’s just so hard.

My family say I’m clever and know how to play the system which makes me feel even worse. I’m a single parent but do get respite every other weekend when daughter goes to her dads - so again they say I’m not really doing it alone and therefore shouldn’t get anything - she only goes for 1 night though and comes back so overstimulated and exhausted I don’t know why I bother sending her sometimes.

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I feel like she’s not as bad some other children. My best friends son is worse than my daughter in many ways but only gets the same rates of DLA as my daughter, so I feel even worse.

My family say I’m clever and know how to play the system which feels like I’m making it all up to defraud people.

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@hbuxton393
Welcome to the forum.
It’s your daughter and you that are important not what other people think!
There was a saying on the forum to kick the guilt monster off your shoulder. You are entitled to DLA . Clearly you are very caring and have high principles. Caring is difficult enough without feeling guilty for something that is not your fault

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@Pet66 Thank you it’s just so hard when my family tell me I know how to play the system and make it work for me so I feel a fraud.

I try to have high principles, I don’t want to teach my daughter that she can do nothing with her life just because she has difficulties, I’d rather she did something workwise, even if just 1 day or 1 shift a week in a supermarket.

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@hbuxton393 let her stay over with your family for a few days and they’ll soon realise she has extra needs.

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@Melly1 Unfortunately my parents and sibling are entirely unsuitable to look after her overnight. My mum has slept through a literal car reversing into our living room which woke the rest of the house up this was when I was a teen and lived at home, my dad hasn’t got the room (1 bed flat - not with my mum anymore) and my sibling can barely manage an hour in her company let alone 24 literal hours.

She sleep walks and falls out of bed, my ex-husband barely manages for 1 night a fortnight. I am her only option, and yet according to my family i’m playing the system.

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H Buxton
You seem to believe these unhelpful relatives who are judgemental.
I wish you could find a way to accept what kinder others say.
Like Melly says you and your daughter are entitled to the help.
This seems like a head / logic makes sense thinking.
How ever your heart / feelings you makes you doubt yourself.
Wise kind H Buxton can you believe in yourself and give yourself the kindness you show to others.
I hope this makes sense it is hard to find the right words
Warmly Ula

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It is so hard when people WILL NOT understand. I had comments from family about how to ‘deal’ with Graham at the height of his problems. They just did not get it.

I was asked to write a piece for CarersUK and it was published in the magazine, which was slightly embarrassing, but it described an average day in my life. Started around 3.30am with changing the bed, then I could not get back to sleep and moved through the day of washing and drying, trying to clean the house, walk the dog (my escape time), sorting meds, medical appointments, preparing meals, more washing, the constant reminders to take his medication - then checking if he has done so. Him wanting to help but creating more problems. The sheer exhaustion of having to keep one eye on him and not being able to completely relax. People have said to me ‘get a catheter put in’ but they don’t understand how demeaning that is and how humiliating for him to lose control. I did turn on one ‘friend’ and said ‘OK - YOU try having a catheter fitted and then tell me you are fine with it’.

Yep - SO EASY when THEY are not the ones ‘at the coal-face’. So take a deep breath. Don’t listen to their pontification as YOU know you are doing the right thing. Everyone has replied saying you are entitled to the financial support (remember the hoops you had to go through to get the money awarded?) so ‘stuff them’ and their holier-than-though attitudes. If the boot was on the other foot I am sure they would be grabbing anything they could and demanding more!

Stay as strong as you are.

:people_hugging:

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@hbuxton393 Welcome to the forum. Your relatives have really done a number on you, haven’t they?

Fraud and “overstating” the case accounts for less than 0.7% of DLA claims. The official figure includes official mistakes. Believe me when I say that what you’re describing definitely fits the profile for being entitled to benefits. The problem is that your relatives, like most people, believe that fraud is higher and that their health is so much worse than a little girl who misbehaves. Because that is how they see it. Everything you describe about her suggests autism like behaviours - sensory processing and overload, dyspraxia (sometimes confused with autism and vice versa), meltdowns. These are pretty much outside her control but others would only see the behaviours. She deserves every penny of that DLA. And you deserve every penny of the Carers Allowance you receive. The fact that it took more than one try tells you it wasn’t easy to get and it’s absolutely valid.

This might sound strange, and much depends on the effect it has, but your PTSD may make PIP for you worth looking into. That would really annoy them! :stuck_out_tongue_winking_eye:

Seriously, though, whatever problems your daughter has, you’re doing a great job supporting her. Otherwise, I’m exactly where @Chris_22081 is on this: they don’t have a clue - you’re the one at the coal face.

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Distance yourself from your nasty relatives.
My son was brain damaged at birth, for years Social Services didn’t believe that we needed support, until he quickly worked his way through all 14 local carers. All were very condescending towards me, of course they could manage him (implying why couldn’t I?) but some only cared for him once and never again.
Don’t discuss your daughter’s condition or her finances, or yours with your family. They won’t “get it” because they don’t want to. Are you aware of the Family Fund? They were a huge help to us when M was growing up. Money doesn’t make anyone better, but it certainly makes life easier. I had my “mechanical slaves”, dishwasher and tumble dryer. Really helped me.
Does your daughter go to a special school? Is there a Parents Group?

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@bowlingbun Unfortunately my Ex-Husband will discuss me and our daughter with my family knowing full well that’ll come back to me, and I can’t not tell my ExH as he’s I’s dad. It’s a never ending circus. We split when I was 2 and a half due to his violence, he likes to throw it back at me that I’m the reason we’re not together though :roll_eyes:

I have applied to Family Fund but we were ineligible they said her needs didn’t fit their criteria.

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I’ve never heard them say that before, did they tell you exactly why not?

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They said that she’s at the lower end of normal and they feel that my circumstances mean I can save for the needed equipment or ask her consultants for it (what consultants? She’s referred to Podiatry only, no-one will see her, I’m having to go private for her diagnosis of the underlying condition)

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Is she going to a mainstream or special school? In my son’s day Education had to do a Statement for special Needs, I think now it has to be an EHCP or something similar. If you are not getting any help, forced to go private, then have you heard of IPSEA? Huge help to me, and many others. They offer great advice for parents of a special needs child.

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@hbuxton393 Hi! Bit late here, but I wanted to offer my hellos and welcome in addition to everyone elses.

I’ve just read through everyone’s responses and yours and could I add that it sounds like YOU need more support, people to talk to who are NOT family, ex husbands (and have to say from how he behaves I can see why he’s EX) and even aside from the friends you have already. You have us on the forum but perhaps try the Cuppas? Care for a Cuppa | Carers UK.

or a local Carers group - perhaps the helpline could help you Helpline and other support | Carers UK

You’re hearing repeated ‘lines’ from other people and you’ve started to believe what they say. You know it’s wrong but you’ve stated their lines back to us a few times…which tells me you’re hooked on that storyline being true - IT’S NOT!
BUT it won’t matter us saying it to you 100s of times, because it’s like ‘Gaslighting’ people have spun a story which somewhere you’re thinking now is true…

If I was a close and old friend of yours, I would say let’s see if there’s a counsellor support help you can get from your GP so that you can talk all this out, to find a way to counteract the messages from others…because you can’t stop what other people say or do, BUT you can learn ways to navigate these difficult thoughts, how to diminish the power the words have on you…sorry to say it’s not possible to stop our horrible inner critic thoughts beating up our own self worth, chipping away at our identity especially if the thoughts are playing like a broken record, the same old tune…BUT there are exercises that can help, interrupt it.

I wanted to share that because personally I hear more than finance, family, daughter etc - to me it sounds like you’re doubting your capabilities, your identity - being a principled, person with values
Take heart dear one, we see you, and understand!! You’re doing ALL the right things, you’ve explained it all above and you’re doing amazing. You obviously take great care of your daughter!

As our other friends here know, I always have to speak my mind…so there it is laid out how I see it…You started by saying you feel like a fraud…and I think that’s the underlying pain is that you’re believing that when it’s not true, and you’ve specific facts from our friends here proving it’s not true and you’re still in pain
‘‘have PTSD so again this backs up the evidence in my mind that I’m a fraud and should just stop claiming it and go back to work full time.’’
I just hope my thoughts haven’t hurt, because that’s not my intention.
Call the helpline or find help via your GP, you need to talk this ALL out.
BIG hugs

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@Victoria_1806 I have PTSD, Anxiety and Depression but thankfully while intrusive thoughts are common, I have a very good therapist whose taught me that harming myself is a permenant solution to temporary problems.

I have come up with a plan today to ease my mental health and the burdens I feel. It involves not including my family in anything at all, ever, it includes lying to them about my situation but honestly at least they won’t be telling me I’m lazy and a scrounger and playing the system while they get nothing and I think thats a bigger factor in my mental health than the guilt over a lie.

I’m usually a very honest person but can see right now it’s not the time to be as my family think I’m doing nothing, even though I do work (signed off still right now which this lie will also help) and care for my daughter basically single handedly.

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Hi @hbuxton393 I’m happy to hear you’ve got a good therapist to support you on your journey.
Whatever boundaries you need to set so that you and your daughter are safe and well is a good thing and no one has the right to judge you. So I understand your plan!
You’re still honest - it’s honesty to yourself at what’s happening and how you can protect you and your daughter to be well
I have civil polite conversations with some family members but I don’t proactively tell these particular people, personal things about my life, what I do and I don’t reach out to interact spontaneously because it’s healthier for me and Mum that I don’t…slightly different from you, I can’t cut them out or ignore them because my Mum feels obliged to keep in contact… whilst I know THEY want to feel important, give advice and ‘lord over me’, I Wouldn’t be able to stop myself putting them in their place :wink: It’s better for THEIR health as well, that I don’t contact them!

YOU know your truth and I’m relieved you’ve the support with your therapist…Whatever others think no one has the authority or right to judge what they don’t know…That’s why I was concerned enough to use the word ‘Gaslighting’, people trying to make you believe something - Bullying to make you smaller to make themselves bigger. You’re definitely better off without that!

Cheering you on, with hugs and empathy

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