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Dad cancels carers allowance


New member
Sep 20, 2021
Hi, I'm new. I'm not afraid to say im having a terrible time!

I have cared for my dad for just over two and a half years. I claim carers allowance and he's always hated that fact as he doesn't fully understand it and due to the paranoia and delusions caused by Parkinsons Dementia he thinks I'm taking hundreds of pounds from him??? And he frequently says I do nothing for him. Anyway my sister and his adult social worker have always always stuck up for me.

Following a delusional episode in March his previous care agency and his social worker said he needed respite and was admitted to a terrible home who made awful medication errors and I finally begged the social worker to allow me to take him home. He was in a terrible state and I immediately got him treated for a uti and his Riverstigmine was increased after I demanded a referral back to the mental health team for a meds review.

Jump forward 6months and he is much improved. So much so that he has convinced a carer with his new agency that he doesn't need my care and that I'm actually trying to fleece him of the £3000 he has to his name.

He has (with definite help from this agency carer) rang the DWP and told them (his agency actually told me this!!) that I'm fraudulently getting Carers allowance and that I'm stealing money from him. So needless to say a safeguarding referral has been raised. Of course I'm not concerned that I've done anything wrong, but my stress levels are through the roof.

However, Im deeply disturbed that I was repeatedly told that 'its the disease talking' and not worry as these are 'classic symptoms' of Parkinsons Dementia. I'm now on the verge of financial crisis as he's refusing to sign to say I care for him so will loose overnight my carers allowance payment, plus housing benefit and reduced Council tax.
I left work for him and have 3 x kids as a single parent.

As hes considered to have capacity (barely) there is nothing I can now do. This carer has fed his delusions and as has happened in the past when he suffers an acute episode or psychosis again he will phone me and say he did and said nothing of the sort !

This time it's gone too far and I'm angry, heart broken and confused. I think his SW has just given up on him!!

Has anybody ever experienced anything like this?

Ps I don't have power of attorney as he says he doesn't need it because there's nothing wrong with him


Registered User
Jun 12, 2020
I think this episode may be sufficient to prove that he does not, in fact, have capacity for a decision to terminate your carer's allowance. He may have failed the first test of capacity, which is understanding information given to him in relation to the decision.

i haven't claimed carer's allowance myself but no doubt someone else will explain how to claim it when the person cared-for doesn't have capacity to sign the form. I am sure that must be possible. I would be somwhat incandescent with the agency carer concerned who has facilitated this and if the agency don't sack him or her I would want to change agency. It is a highly unprofessional thing to have done - the carer's role is not to be some sort of self-appointed arbitrator of social benefits decisions.

I think I would be inclined to write to the DWP explaining the situation and enclosing evidence about the hours you put in caring for him. His sister and adult social worker have been helpful and if they signed statements as witnesses to the fact that you do devote the required hours to his care that would be good evidence I suggest. You should state that he does not understand carer's allowance and therefore does not have capacity to make decisions about it (capacity is specific to each decision) under Section 3 (1) of the Mental Capacity Act 2005 - it will help if your two witnesses will back you up on this.

It is a great shame that you don't have power of attorney. Given that he is only going to deteriorate and you cannot persuade him to agree to it I would begin the process of applying for deputyship. Given that he doesn't think there is anything wrong with him but he has (I assume) a medical diagnosis of dementia, you have it seems to me pretty good evidence that he lacks capacity to make decisions that require him to understand his diagnosis. There may be hurdles to surmount on this road but members of this forum will help!

It is really hard caring for uncooperative patients! Good luck and use this forum to get advice.


Registered User
Mar 1, 2013
West Hertfordshire
I'd be reporting the are agency to .....well, I am not sure who, but they must surely know thi isnt an appropriate thing to do? In what context did they tell you that a carer had assisted your dad?


Registered User
Jun 19, 2016
I think you carry out the advice above but get your sister to sign any letters alongside your signature to show support.



Registered User
Mar 15, 2020
i agree, i wouldnt thought it was in the carers remit to advise about whether a person is entitled to benefits or not. its nothing to do with them. collect all the evidence signed. what are you going to live on in the mean time? make sure she doesnt come and care for him again


New member
Sep 20, 2021
Thank you all so much for the support and advice. This is the first time I’ve reached out to others who maybe in a similar position to myself. I have had advice from support lines and that is why I’m so shocked, that the reassurance is so different to the reality.

@Jessbow. I basically phoned the agency (and followed up with email) after I’d had various issues with the carer in question.

Two days before my phone call to the care agency I had had a phone call from the DWP to say they had received a phone call from ‘someone’ to say I wasn’t caring for dad. I explained the situation and they informed me that they would send me a form in the post to complete.
I could only think that it may be this carer so asked directly - ‘did the carer make the call’ and she said - no your dad made the call.
i explained that my dad doesn’t have the capacity to look up and make a phone call like that. But the deputy manager insisted it wasn’t the carer and without even suggesting it told me that the carer would not be removed from the place
As I was so upset about the attitude and behaviour of the agency it took me a few hours to make the observation of - how would the agency know about phone calls my dad made ?
My dads SW knows all this but she seems desperate to ‘discharge’ him??!
I just don’t get it?? I think it maybe necessary for me to just step away.
I should be meeting tomorrow with my dad and SW, so I’ll wait to see what crazy direction this is going in.

Starting on a journey

Registered User
Jul 9, 2019
Let social services take the strain, you have yourself and children to look after! Your finances must be completely up the creek so concentrate on “me first” . It’s alien to everything we do but you have to get straight first. It may be that they will reinstate the carers allowance quickly but if not, find out what else you need to do to support your family….

Violet Jane

Registered User
Aug 23, 2021
Tell the SW that, as a single parent with three children, you cannot afford to care for your father without Carers Allowance and associated benefits and will have to start looking for work. That will mean that SS will have to make some other provision for your father. I think that, after all that has gone on, you might need to ask yourself the hard question of whether the time has come for you to step away from your full-time caring role. question


Registered User
Apr 6, 2011
North Manchester
You say the DWP are sending you a form to complete.

This could be for you to certify you meet

The type of care you provide
You need to spend at least 35 hours a week caring for someone. This can include:

  • helping with washing and cooking
  • taking the person you care for to a doctor’s appointment
  • helping with household tasks, like managing bills and shopping
https://www.gov.uk/carers-allowance/eligibility .

Whether or not it does you could inform them that your dad does not realise how much time you spend looking after him and include a log of how you are helping him.

Remember the allowance is per week, I think Mon to Sun, time cannot be averaged over weeks.


Registered User
Oct 27, 2016
My mother in law had private carers and one of them started to become too familiar asking my mother in law about finance matters. I had power of attorney for finances so the carer didn't stand a chance of getting anything. I complained to the agency who replaced her . I'm wondering whether the carer thinks you should be doing even more for your allowance. I claimed carer's allowance although my mother in law had carers visits for personal care and I never discussed this with the agency as it wasn't their business. I actually feel angry about this situation on your behalf


Registered User
Jul 7, 2019
At the end of the day, you have done nothing wrong but care for your Dad.
Sadly the carer has another view , this happened with my Mum - it’s hurtful & horrid.
yes it’s part of the dementia, but that’s not helpful.
-Contact the SW & put concise points down . Caring you supply, duties, help etc.

-All DWP conversations are recorded, ask for a record of that conversation as it effects you.

- Contact the DWP & inform them of what has happened & your concerns.

- inform your own GP of these issues in an email, as the stress will impact your health.

- Ask for your Dads GP to visit as you have concerns & keep diary of issues.

At the end of the day you might need to walk away from this situation, so need to know legally where you stand.