My (28F) mom (59F) claimed my disability payments on my behalf for 10 years without my knowledge and pocketed it all, after being instrumental in me getting diagnosed. She then sent me a 5-figure sum when I found out, and told me that I can now “back her up” if she gets in any legal trouble over it.

Hi, looking for advice/reassurance on what to do next, specifically how to continue my relationship with my parents, or whether to do it at all.

This is my first Reddit account/post, thanks for reading. All dates are this year, 2025 unless specified.

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Background

I’ve always had a tough relationship with my mom. We’re both strong-willed women (I’m enby but to my mom I am girl; so for this post, woman will do). She has repeatedly told me that I am “difficult”.

Mom first started to take me to CAMHS (UK child mental health service) when I was 8 years old in 2005. I was badly bullied in primary school for various reasons and it definitely affected the person I was/have become. I have very little recollection of being a child that age, but I doubt I would have been told the outcome of my first few appointments. However, my mom has maintained in the 20 years since then that I was first discharged from CAMHS because I was “too intelligent to be anything other than controlling and manipulative”… (at EIGHT years old – I seriously doubt an 8yo would know how to manipulate adults to the extent I’ve been subsequently made to feel guilty for). She and my dad would manage meltdowns/tantrums/upset from me with that in mind, that I was a manipulator.

At the age of 12, now in secondary school and still being bullied, I was referred to CAMHS again. I came out of those appointments diagnosed with depression and (at the time) “Atypical High Functioning Asperger’s” (now Autism/ASD). This development sent mom spiraling, and she has regularly over the years told me that she “grieved for months” and felt like she’d “given birth to an alien”. The way I was raised by my parents after my ASD diagnosis, was with the mindset that ‘the world will not change for her [me], she is [I am] the one who is wrong.’ Not a direct quote, but she has said stuff along these lines.

In the latter half of 2014, I was diagnosed with Bipolar Disorder at 17yo. While driving home from the child psychiatrist who gave me this diagnosis, my mom sobbed and sobbed, and again she said she “mourned” for months. On the insistence of my mom and the psychiatrist, I was encouraged to go on an antipsychotic drug, which I was hesitant to do because of previous bad experiences with antidepressant drugs. I was 17yo, doing my A Levels – the medication really affected me and I slept through most of my lessons with my head on the desk in the classroom. However, I did well enough academically to get into a good university for my undergrad degree. I had a lot of meetings and appointments for years to try to get me and my family support, the majority of which my mom would join me in and help lead the conversations.

Throughout all of these diagnoses, mom was almost ever-present in the appointments. I don’t think this is necessarily unusual for children, but she often talked for me and this continued well into my 20s. This included GP appointments and psychiatric appointments, as well as having private discussion about me with my GPs, psychiatric professionals, and NHS therapists. I latterly stopped sharing information with my GP when the GP shared private information against my wishes with mom ‘for my safety’. 

Despite having tried a lot of medications since then that haven’t worked, I am still taking the same antipsychotic 11 years later – I have been on maximum dose for about 8 years.

I have, in late 2024, also been diagnosed with ADHD. I was initially put on meds for this too, but they did not remotely agree with me as I became incredibly paranoid. I came off them when unrelated physical health issues started.

At some point after being diagnosed with Bipolar, when I was over the age of 18, I was mentally unwell. Mom, along with my family GP, decided I was a risk to myself and that I needed extra care. Mom became my “advocate” at my GP, meaning that she was legally permitted to interact with the GP on my behalf. Mom then requested a similar role to interact with Student Finance England (SFE) on my behalf during my undergraduate degree. We had many arguments about these situations of responsibility, as I did not want her to have this much control, and don’t think that I needed it for so long or so constantly. Something I was unaware of until May 2025, was her role as my “appointee” with the Department for Work and Pensions (DWP – they give work related benefits here). As my appointee, she was legally in charge of my benefits and all communication and funds went through her first. It meant that I was seen as a ‘vulnerable’ and ‘dependent’ person. 

In 2020, I had my mom removed as my advocate at our family GP surgery after a particularly nasty situation at home – we had argued to the point that police were called, and when they arrived my mom told them not to believe my side of things because I had “mental health problems”, leading to the police questioning my capacity to speak for myself. They very quickly realised I did have capacity, and I spent a few nights with friends. I also revoked her access to SFE for my postgraduate degree which caused more arguments.

During my undergraduate degree, while living with my parents and commuting by myself to university, my next-door neighbour took over a business and needed workers. My brother (younger) and I both worked for our neighbour. I ended up working for him for over six years as a manager. The job was cash in hand (non tax-paying) and long weekend hours. I hated it and regularly looked for alternative jobs. Mom dissuaded me from taking a different job, as, in her opinion, I had “committed” to working for him. However, with her encouragement, I also had several volunteer roles and this job alongside university, so sticking with my neighbour wasn't about time management. I wanted to quit several times, but each time I got close, mom strongly persuaded me that I shouldn’t quit. I moved on from this job when a friend encouraged me to apply for a funded postgraduate degree which changed my life.

My brother, however, was encouraged to get a tax-paying job (before me) with career-progression related to his undergraduate degree after graduating. He was supported in getting a credit card and ISAs with the potential of buying a home in the future – two things that my parents did not do with me. He still lives at home currently, although he did move out with his university degree for a year before realising he hated not living at home.

I currently rent and live with my partner (and our cat), and have done so since November 2023 after I started (and then successfully graduated from) my postgraduate degree. My mental health has been mostly stable since I moved out of my parents’ house, and there is a noticeable difference in the person I am without living with them. I pay for a private therapist fortnightly, who from day 1 did not think I was utterly mental as I had been led to believe growing up.

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This year

In March, I tried to apply for Personal Independence Payment (PIP – a disability benefit in the UK), as I have been physically unwell since November 2024, and unable to work from March. I had previously tried applying for Job Seeker's Allowance (JSA – an unemployment benefit payment) in October 2024 (before I got ill), while looking for work after my postgrad degree. I had not heard back from the DWP (who deal with both JSA and PIP) following that application, but sort of forgot about it. I had not mentioned applying for JSA to any of my family members – however, mom mentioned in passing in December 2024 that she had received a letter from DWP sometime in the previous months, which had asked why her dependent (me) was applying for JSA, and whether she (mom) still needed to be my appointee. Mom said that she had written back to the DWP to inform them that she should be removed as my appointee.

Applying for PIP over a phone call in March also ran into a roadblock, as I didn’t have the correct information to get into my DWP account. I was told by the operator on the phone that I had an account from my previous PIP payments which had ceased around a year ago – one that I didn’t know I had. I had the obvious bits of information to access the account, personal data etc., but could not answer the other questions, such as: “What day of the week do you receive payment?”, “What was the date of your last payment?”. They said the answers would be in my bank statements, but I’d never received any payments. The only question I could answer was “you have an appointee, do you know who that might be?”, and I was able to give my mom’s details, assuming it would have been her. It was. I was sent a digital PIP application form to my email address. However, as I still couldn’t prove who I was to the DWP without that information, I decided to not complete the form.

Mom and I called each other a few times around this time, specifically about this topic. She said some concerning things that I would not have believed she’d said to me if my partner had not heard them too. Things, such as ‘you had PIP for years’, ‘I sent you some’ and even, ‘you received a back payment of [over a grand] at the end of last year’. This was entirely news to me. After this conversation, my partner and I started to record subsequent phone conversations with my mom. We kept recordings about DWP, PIP, and money.

She had sent me money over the years. However, I had always been told they were purely “gifts” – it was certainly never made clear that the money was actually mine. I even went to my bank at one point around this time, to see how references married up to the times she’d sent me these “gifts” – not one reference over the few years we could trace back from her mentioned PIP, DWP, or anything that sounded like it might have been that sort of thing, nor a single payment of any kind over large periods (including after the previously mentioned back-payment). Instead, the “gifts” were varied and random, didn’t happen when I was earning during my postgraduate degree, and often related to a specific item being bought.

Following this situation, in April, I submitted a request for my personal information from DWP to be released to me. The government website quotes a processing time of a month, however I never heard back for reasons I did not know at the time.

One Monday in mid-May, I received a call from DWP, which I thought was a follow-up of my information request. However, it was not! The person on the phone was chasing my PIP application form that I had not filled in. She was very helpful. Turns out, my mom was still my appointee, and as far as DWP could see, she had not informed them I’d moved out of her house in November 2023, or that I was no longer dependent on her. I had explained my situation to the best of my knowledge, mostly that I had no knowledge of the situation and had been kept in the dark regarding ever receiving PIP. I was informed that the PIP claim had started in September 2014 following my Bipolar diagnosis. The claim had ended in July 2024 (9 months after I moved out), up to which point I had been receiving the “maximum care and mobility” payment – the claim had ended in July 2024 because no one had responded to the DWP with information after they sent out an update request to my mom. Mom was also still registered as my appointee on their systems. I got emotional, and asked the lady on the phone what could be done about any of this. She spoke to her manager, who suggested removing mom from the account as my appointee. This was done solely because the claim had already ended and the situation was fairly unusual. They also gave me a longer time frame to apply for PIP.

That same Monday evening, my partner and I were due over at my parents’ house. We had made some notes on what I knew and what I wanted to ask. When we got there, I asked them both for a conversation – my parents’ heckles seemed raised immediately (this might have had to do with me having brought out notes). I told them a bit about the DWP call that I had had earlier that day. My mom immediately said how she had “told DWP I [mom] am no longer your appointee, they must have messed up” – though clearly the DWP had had no record of this. I responded “I know, and so do DWP, which is why you’re no longer my appointee”. I saw her jaw clench – she was not happy.

I queried how long she’d been receiving PIP payment. My mom was very suspicious of what I was saying and almost immediately said quite forcefully that I was “accusing” her of “stealing from” me. I told her I was doing no such thing – in fact, we had chosen my words VERY carefully so as not to do that. After this, she admitted having received the money from when I was 17yo. Apparently it went into her current-account of a bank she has since changed [this part doesn’t make any sense to us (my partner and me), since she must have received the back-payment much more recently and was submitting annual forms/applications to renew the payments after that bank account would have been supposedly closed – that said, appointeeship rules seem to be that payments are made into a bank account belonging to the appointee, but not their main account to keep things separate]. She said she didn't even realise it was coming in during the last few years.

She went very hard into the justifications for how the money had been used, and also about how difficult it has been living with me and my conditions. She reasoned that she was using the money as my "family contribution", especially as both my parents reduced themselves to part-time at work at certain points in time (on the recommendations of medical professionals) so that I could be cared for. This was all news to me, though again there is basis in the rules for appointees to use some of the funds to supplement lost earnings when reducing hours due to caring. The turning point in the discussion was when I asked what my brother's contribution was – we've both always been told that she'd never charge us rent or money as we're her children and she would provide for us (similarly, we were never given pocket money for the same reason). Obviously, this hasn't happened with me. She admitted that the money she got on my behalf was also being used on my brother, since the money was just going into communal family funds which my brother wasn’t expected to contribute to – but apparently I was contributing money without knowing it existed. She also said that when they spent money on me it came from my benefits, but that when spending money on my brother, it came from that communal pot (that they saw as their money but included my benefits that had been my ‘family contribution’). Her realising this seemed to be a big turning point in the conversation – she changed very suddenly from being defensive and said "you're right, that isn't fair". She immediately seemed a lot more understanding and apologetic. Her entire face changed and the colour went from her face a little.

She then asked if I wanted the money she had spent on my brother. The question caught me off-guard, as my partner and I hadn't thought that far ahead in the conversation, and had not expected her to offer. I said "if you want to do that". She suggested paying back a 5-figure amount which took me by surprise, although it was in line with the back-of-the-envelope figure my partner and I had estimated she might have had over the years. I also wasn't asking for it at all but didn't want an argument and felt unprepared. My dad tried to claim he was also my "advocate", but didn't seem to know chunks of what I was talking about. He said I was irresponsible with money as a child and that's part of why they didn't want to give me the money from the government as an adult. They asked where I thought the money had come from that I had been spending for years, and when I said “my job” they said that I had never had a job, that the money I was spending was my own through them. Mom said in a private conversation between me and her afterwards (same evening) that dad wasn't as involved as he claimed in that conversation (dad never is).

As far as I’m aware, the role of the appointee should be given up by the appointee when the dependent stops needing it. The role of an appointee is not to withhold financial independence from their dependent because they think that that person can be a bit frivolous with money. Mom said that she had tried to bring up the appointeeship in the years since it started, but that the conversations were never productive as she became apprehensive of the inevitable arguments where I would say that I didn’t want her to have control over my decision-making… so she kept the decision-making powers over me. To be clear, at the point of those discussions, I was not aware that that extended to benefits or that they even existed.

We left eventually and I had a tough night emotionally. The next day was challenging. I got a missed call from her first thing (about 9am) and then a text asking to speak. I did not want to talk. I called her back and made an excuse about why I'd missed it. She started the conversation asking what I had explicitly said to DWP as she was worried I might have misled them, mentioning that “I [mom] could lose my job”. I told her I was honest to DWP about not knowing what I was receiving.

She then said that she and dad were going to the bank to "move some money around" so she could send me some money. I checked my bank balance after a midday missed call. There was a very large increase. A 5-figure number, that was even more than she had suggested the night before. I was not prepared for this and cried. For their part, my partner said that it would have made more sense for mom to have sat down with me and for us to come to an agreed amount – doing it like this made me feel completely out of the loop and out of the decision once again, and also made me feel very controlled by the money even once she was giving me some of it.

Eventually after a third missed call in the afternoon, I called her back. She said the amount was "about half" of the 10-year benefits income. I've done the maths, it makes sense with inflation, but could feasibly even be less than half. She also said “now you can back me up with the DWP”.

I told her at about 4pm on the Tuesday that, "I need processing time, I'll call you in a few days". I received messages from her during that week that I responded to, just to be civil. Then on the Friday that same week, at 8.21am, she called me to wake me up because she believed I’d had enough processing time (calling every day to wake me up was previously very typical of her after I moved out – she would also regularly call me 10+ times every day). I was not happy, as she was yet again making the decision for me – this time, on how long I needed space from her.

The money she has sent me is currently in an ISA with my bank – I do not know what to do with it at all. I do not want to spend it without getting legal advice – it’s enough for a decent house deposit, not that I’m in a place to buy right now while not working. 

This month, September, I had finally gotten an appointment with a psychiatrist at my mental health clinic. I had been requesting an appointment with them since May; this was in order to talk to a mental health professional about both my physical health (which may be related to my mental health) and the situation with my mom. The psychiatrist I saw suggested that I may not have Bipolar Disorder, that my issues may instead have just been ADHD that had been misdiagnosed as Bipolar. So I am potentially being un-diagnosed with a condition I have been medicated for and controlled because of since I was 17yo. When I told my mom this, after she directly asked how the psychiatrist appointment went, she told me that she was “relieved for” me. This really hurt, since I feel that she majorly pushed for my diagnoses in the first place, and then financially benefitted from them (whether deliberately or not).

Since May, whenever she has wanted a positive interaction with me, she has been loving, caring, and kind. However, she has still lashed out, and she has been vicious. This includes having said “all these people you’re talking to [friends that I’ve tried to talk to about this], you’re betraying me – they don’t understand what it was like to wake up every morning and go to bed every night with how difficult you were” and “I [mom] can’t live without you as my daughter” – this isn’t the first time that she’s used hints of suicidal ideation in arguments. Every time I have brought up the upset and hurt I am feeling, all I get is excuses that I was “difficult”, that “you’re [me] not being fair, I [mom] am in limbo”.

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In the months since May, a lot of things have changed. I started making a conscious effort to detangle myself from my mom’s control.

• I finally changed GP surgery, despite having moved house to a different area of my city in 2023 – being at my family GP surgery was something I had actively been encouraged NOT to change by mom previously, despite me having brought it up several times.
• In this change, I had also changed my address on the NHS database, meaning that my medical letters would no longer be directed to my parents’ house as they had previously been, where they would often be read without my consent, despite asking her not to on multiple occasions.
• I have put myself on the electoral register in my area.
• My mom still pays my phone bill. For all these years I have not been able to access adult sites on data due to parental locks, despite being an adult for a decade. Having asked repeatedly to get the parental locks removed since I moved out in 2023, I was always given excuses as to why that could not occur. In August 2025, I asked mom explicitly for us to go to the shop for my phone provider so that we could transfer the bill to me so that I could pay my own bill and get parental locks removed. Within 2 hours, parental locks had been removed – when I had been asking for years… We went to the shop but my contract is up in late 2026 so she still pays the bill for now!
• My PIP application was rejected, with mostly 0s across the board (meaning I didn’t qualify for the benefits across various criteria). I don’t know whether I want to go to tribunal to challenge this. This is despite me having received the maximum payment less than two years ago when mom was submitting the paperwork on my behalf. I don’t understand how, in under 2yrs, I can go from maximum payment to nothing without mom having submitted misleading representations in the paperwork ‘on my behalf’ – which she has then pocketed. However, I should note that the UK’s disability benefits criteria have been tightened somewhat in that time.
• As I am still unable to work, I have looked into alternative benefits. I cannot receive any means tested benefits, for two reasons. 1) I have too much money in savings (a smaller amount was my savings from my postgraduate degree funding, but the majority was the money received from mom (but i don’t know whether i can do anything with it or whether it’s more sensible to leave it alone)), and 2) I have not contributed enough tax (see the job situation above where mom consistently dissuaded me from getting a tax-paying job into my mid-20s before I moved, as she always said she would “support” me).
• I am waiting for my medication to change after the psychiatrist review.

My family has barely left me alone in the subsequent months. My brother has asked me to meet for coffee a fair few times – something that is not normal for us. He is calmer with me than before, less critical and more accepting of me. My parents were trying to meet me at least once a week. They would buy me small gifts I wasn’t asking for, and would come round to my house if I said no to meeting them. I think they are trying to rebuild a relationship with me, but they haven’t really apologised or even acknowledged my hurt.

However, I have recently put my foot down after the psychiatric appointment and potential un-diagnosis. I have explicitly informed my family that I do not want to speak to them at all at the moment. I have muted all of them on WhatsApp and will not take their calls or messages. I have to say, I’ve felt emotionally lighter this week than I have for a long while.

If you’ve read this far, thank you!

I am also looking for advice on how to proceed and whether I should take legal advice about the 5-figure amount sent to me, especially considering that I have doubts over the evidence my mom submitted in the first place.

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TL;DR – I tried to apply for benefits and found out that I couldn’t access my account, though I had never applied before. Turns out mom had been claiming benefits on my behalf as my appointee, but had been seeing the money as my ‘family contribution’ without making me aware it even existed. When challenged on it, she sent me a large sum of money and insinuated that I should “back her up” if the authorities ever came asking, as she realised that she could get in serious legal trouble over the situation. She was heavily involved since I was 8yo with my diagnoses, and I feel that she pushed for me to be medicated. I am currently struggling with my family contacting me when I presently do not want a relationship with them after finding out about the benefits.