OPG Issues, Please Help with my unusual situation regarding Live-In sole carer. Unemployed, LPA of Mother who has recently been certified as having no capacity due to a dementia diagnosis

[LeJiT]

I’m at my whits end and this needs some context, so please bear with me.

7 years ago I was forced to leave work due to physical and mental illness (severe anxiety & depression is part of it).

I had to move in with my parents who welcomed me home, but life was tough.

Then not long after, my Dad got an aggressive cancer and was deceased within 7 weeks of feeling ill.

Despite my own illness and obvious grief, I had to step up and be strong for my mum, because whilst being able, she needed help as my dad used to do everything for her. (Very old fashioned couple). She didn’t have a clue about bills or financials, didn’t/wouldn’t use a computer, and not at all assertive, so she was very dependent on me.

We were also advised for me to get LPA for my mum by family friends. (This will become important later on).

She also drank quite a lot during an evening and that gradually crept more and more into the daytime.

As the drinking got worse, the more she needed help and the more I used to do around the house for her when I was well enough. Cooking, cleaning, shopping, gardening, household maintenance, bills etc, etc.

She wouldn’t stop her drinking and got aggressive and defensive whenever it was brought up, so unfortunately, that was not easily addressable.

Because I was unemployed, my parents never asked me for a penny for me staying with them and would obviously feed me and prop me up financially if I wanted to do anything that I couldn’t afford.

Also help with clothing as well from time to time.

After my dad died, my mum also used to give me money so I could go on holiday abroad to get a break with friends.

Fast forward to last summer 2024 and it became apparent that my mother was starting to forget things.. more obvious than just symptoms of drunkenness.

I took her to the GP who agreed with me, and she was referred to the local memory clinic for assessment.

It took some months but she deteriorated rapidly and was diagnosed as having dementia in February this year and not having capacity.

During the assessment period, an estranged family member caught wind that my mum had been paying for me to go on holiday. So out of malice, jealousy and spite, they raised an issue with the Office of Public Guardian that I was taking advantage of my mum and not looking after her properly.

As a result, we had visits from welfare professionals, social workers, the OPG themselves and even the police.

All of who could see I was looking after my mum well, and my mum was happy to confirm that she gave me money, didn’t charge me any living expenses and paid for holidays all because of what I do for her.

(It would cost her a lot lot more if she was paying privately for all the things I do).

However, the OPG have continued to be on my back and here’s where I need help and advice, because they’ve just about broken me several times.

As stated, I suffer with anxiety and depression and these things aren’t easy for me to deal with and I get very overwhelmed and just shut down, it also exacerbates my physical health conditions which obviously isn’t good for me OR my mum.

My problem is that I’m the LPA, as well as the carer, as well as a live-in, unemployed family member on benefits.

So, for instance, my mum has given me the Attendance Allowance for several years, for looking after her, but the OPG state now that she has lost capacity. She cant do that.

I’m on Universal Credit and Carers Allowance and they’re saying I need to contribute to household bills and food, even though I’ve not been asked to contribute a penny by either of my parents for over 7 years.

My mum also covered the vehicle costs and petrol costs, as 80% of my mileage is to help her in one way or another.

Thats not allowed either.

FYI, my mother has ample income from her pension as well as my dad’s. And the house is paid for. So she’s certainly not on the breadline

We used to go out to enjoy a pub meal every now and then that my mum would pay for, but I’m frightened to even do that now even though I know she enjoys it.

Surely they need to accept that in my fairly unique situation, my health and wellbeing is intrinsically linked to my mother and vice versa.

I’ve never taken advantage of my situation, it’s not like I’m leading some lavish lifestyle.

I feel like they’re squeezing me financially in all directions and reducing me to effectively being a slave for the rest of my mother’s life, or at least until she requires care home accommodation.

I’m trying to raise a case with the court of protection, but the forms and paperwork is very overwhelming, unclear, open to interpretation and therefore confusing.

Everywhere I’ve tried for help so far “cannot give legal or financial advice” and I keep hitting brick walls whilst getting completely overwhelmed and upset with the pressure of everything.

And yes, I have considered ending everything, but my mum needs me.

Please does anyone know of any organisation or charity where someone will sit down with me (physically or metaphorically) and go through this with with me to help and guidance?

I’m feeling very alone and literally see nothing but bleakness for my future at the moment.

[JayneyT]

I’m so sorry to read about your troubles. Have you tried phoning the Carers UK helpline? They are very good listeners and even if they can’t help you themselves, they can signpost you to further specific support. You can reach them on 0808 808 7777.

[Torchie]

Goodness you have a lot to deal with, The CAB have specialists in form filling so might also be worth giving them a call.

[bowlingbun]

Everything you say about OPG seems to contradict their own website!?
That says you CAN be paid!
So have a look at their website about paying relatives to care.
I don’t suppose the malicious relative has offered to care instead?!?!

[LeJiT]

Spoke to them. Passed me onto someone else, who passed me onto someone else, and on and on until I ended up speaking to a solicitor who was sympathetic, but apparently no legal aid for this type of thing and gave me a rough estimate of £3000

[LeJiT]

They’re like chocolate fireguards in my city. I’ve tried to use them a few times for various help and you end up more frustrated than when you started

[LeJiT]

Ha, the malicious relative who was “expressing a concern” hasn’t been to see my mum in years even though they only live less than an hour away.
Not a single birthday or Christmas card either.

Regarding the OPG, what they say and what they do are 2 different things. My life literally revolves around looking after my mum and the wording they use is disgusting and made me feel like some kind of criminal.
They gave me a review date to submit 6 months of bank statements and receipts and used wording like “The Attorney needs to stop taking funds from the donor”.
I’ve never “taken” anything, my mum has always gifted me money in recognition and appreciation of what I do for her.
“The Attorney needs to repay any money *taken * from the donor between X and X dates”.
I’ve told them over and over, I haven’t “taken” anything. And also my financial situation, that I’m an unemployed live-in carer with no real income.
Also, the dates they are talking about are mostly prior to my mum showing any signs of dementia and being diagnosed.
How they expect me to pay back historic gifts with no income is beyond me?
I’ve told them all this, but they just fire back LPA legislation.
It’s like they’re refusing to consider my role as carer, and my employment and financial status.
They’re only looking at it form an LPA perspective.

The investigator I’ve been landed with is either a clown who lacks any sense of reality and compassion, or she’s just pure evil.
I’m waiting for her next response, and if it’s in the same tone as previous then I’m going to make a formal complaint about her and my treatment.

But this is why I’m trying to apply to the Court of Protection, so hopefully they can effectively overrule these ridiculous demands.

[Charlesh47]

Hi @LeJiT and welcome.

First of all, I’d better point out that my background is in working with carers. I’m not a lawyer of any kind, but I’ve worked with carers who were navigating LPAs, and there are a lot of pitfalls. The situation as I see it is this:

1. You can claim reasonable expenses from your mother - journeys undertaken on her behalf, etc. This is perfectly normal. You can’t make her pay for the car, or all of your fuel costs. Only what you do only for her. So you need to keep mileage records of everything you do for your mum and to claim that back, itemising the reason for the journey and miles travelled.

The best way is to use the mileage rates that HMRC use - 45p per mile for the first 10,000 miles of any tax year. If you’re doing over 10,000 miles I’ll be amazed, but the tax allowance drops to 25p a mile after that. In practice, that would need you to drive over 27 miles a day. If you charge any more that would be seen as unjustifiable.

2. You can’t be paid to act as her Attorney unless the LPA documentation says as much. What mum decided to do while she had capacity was up to her - now she doesn’t have capacity, that has to stop. There’s no way around this, and this is why you’re being told to repay the money you received between those dates mentioned. That’s the law as I understand it and it is very clear.

The fact that mum was ok with it will not change anything. The OPG would treat it as a gift that your mum was within her rights to give, but that you are not able to take. They cannot look at it from any other perspective than as the OPG. That is their job.

Unfortunately, the law is the law and you have fallen foul of it. They won’t see it as excusable.

The only movement I can see is that if they are trying to reclaim that money from you for a period prior to your mum losing capacity. If you have any evidence to support you, that would be great - if you don’t, they have to make assumptions. Did your mum write anything that would support your claims (it’s not that I don’t believe you, but clearly the OPG will be looking for you to provide proof)?

I’m sorry I can’t be more helpful, but I’ve double-checked everything today to make sure things hadn’t changed since my last case, and this is what I’ve confirmed.

[Charlesh47]

The only suggestion I can make is that you approach your caseworker and discuss a reasonable repayment schedule. It would have to be very low, however, because you won’t have the income to cover it. For benefits overpayments, the usual amount is about £14 a week. That may be a bit high - but it gives you a starting point for discussion (at the most).

[LeJiT]

Thanks for taking the time to write all that. I’m more bothered about going forward and trying to have some kind of existence outside of basically being a slave.
I’m trying to go down the route of family care payments with my application to the COP.
Or I set myself up as LeJiT-Carer/Chef/Gardner/Chauffeur/Personal Shopper/Ceaner/Maintenance Ltd and invoice my mum as an employee.

Or just give up on everything and call it a day

[bowlingbun]

Google “Paying family for care”. OPG LEAFLET NUMBER 14.

[Charlesh47]

@bowlingbun I think that leaflet refers to the Deputy or Attorney making the payments to other people in the family, not to themselves - there’s a conflict of interest otherwise and in all cases they should talk to the OPG.

[bowlingbun]

I have an article somewhere written by a local solicitor on this subject, which says that a family carer can be paid to care, and if I remember rightly is exempt from Income Tax by receiving 80% of the going rate for a carer.
In the poster’s situation, having read the own article, challenging them to explain a very unusual situation doesn’t seem unreasonable.
I believe any carer regardless of relationship deserves a reasonable income, especially when a care home is the only realistic alternative which would cost many times the cost of paying a relative.
When I was widowed and disabled, still supporting my disabled mum when she was still living at home, she told me to have some money now and then for everything I did, very much the same as the OP. In my case, mum paid for my first trip to Crete, and when she saw how refreshed I was afterwards, she paid for my second holiday in Crete too.

[Charlesh47]

It always depends on the circumstances.

[jjarichardson]

My grandmother with vascular dementia lost mental capacity before our family was able to sort out power of attorney. The only alternative is deputyship through the court of protection, an extremely expensive and time consuming process which - according to our solicitor - is a legal minefield fraught with risks and intense scrutiny.

While I appreciate there has to be safeguards against exploitation, it is absolutely outragerous how the legal system is stacked against unpaid carers, who are practically keeping the NHS and creaking social care systems afloat through their selfless devotion to loved ones.

[Pet66]

I too had to go down the court of protection route. One week I Suggested to my late husband re power of attorney. The next week he had declined and had no idea what I was talking about.
Court of protection is quite intrusive and expect everything spent to be listed. I did get used to it and if in doubt would phone them.

[jjarichardson]

The stress of the paperwork is the last thing my mum and I need whilst caring for my grandma. So we just muddle through.