A new hello from that surrey

Hello everyone.

like anyone that posts on here, where do you even start.

I’m 51 years young and born to mediterranean immigrants. I’d love to tell you I have deep olive skin the body of a god and a mane of lethario dark locks, but you’d only be disappointed.

My partner was diagnosed with early onset Lewy Bodies and Parkinson’s back in 2015, although like many of us, we look back and realise that the signs were there probably a year or two earlier.

I was holding down a full time job and taking care of my mother as well during this period. To say things were difficult was an understatement.

In 2020 mu mother died and I had her repatriated to her family’s village abroad - due to covid I couldn’t travel with her. The last time I saw my mother was when I loaded her body into the back of the ambulance the day I found her dead in her chair following the terrible weekend of storms in February of that year.

In 2020 I also lost my job. I was an easy target for redundency in the great cullings of 2020.

I managed to find six months of paid work in 2021 for which I had to register as a ltd. company in order to be paid as the agency concerned would not deal with individuals directly. Following this contract I never managed to find another work from home contract due to the employment landscape changing and hybrid working becoming the norm.

I told Guildford Council at the time, that I would be moving back into the family home when the probate was finished - I was my partner’s carer now and I often use the place to just go and sit down and stare at a wall when I get a chance. The house my partner lives in has subsidence, and it was always our intention to sell up and move to my old mum’s place as her insurance company denied all culpability or responsibility for the subsidence repair, so we were stuffed, as any new insurer just batted it off to the previous one as it was first reported on someone else’s watch.

Guildford council now will not accept that I am looking after someone else as an exemption and use the excuse that I inherited the property rather than was living in it, and thus no exemption could be applied for.

In classing it as an unoccupied sencond home they have charge for three years of full council tax plus a fifty percent rich bloke levy, demanding that I prove to them that I’m living there despite me telling them my situation.

I applied for carers allowance in early 2021 and made the fateful mistake of being honest and told the carers allowance that I was going to be working for 6 months. It was at this point that I realised that you can’t press pause and once you stop you’ll be pulling teeth trying to get that door open again.

I have not had any income since january 2021, ringing carers allowance they said that they had cancelled due to me findinf work, only to find the notification that I had ended my 6 month contract.
Now I am being told that as a director of a ltd company I have no entitlements.

Honestly I’ve lost the will to live with that lot and have just been drawing down and nearly coming to an end of my life savings that have been built up over 30 years.

We have recently had a CHC care review with a safeguarding placed on the local council, who passed the buck on to me as if the package arranged by them was my problem Natirally I’ve fought back and thrown it all back in their court.

I’ve not had any respite in 8 years and since lockdown have worked unpaid to the tune of over 900 hours as the care agency told me that they were short staffed and could I cover for double up calls - which as you can imagine impacted on my ability to find work.

During the chc review it cane to light that during covid the care agency manager had written in her notes that I had declined all double up calls and was happy to do them myself!

Essentially since lockdown I’d been screaming why have my double up calls not been reinstated, and the care agency were saying what’s he on about, it’s in the notes he turned them down! Needless to say I’m raging.

The agency is poor, and their care plan is structured around me doing everything for her. I don’t begrudge it, after all I made her a promise I’d always take care of her no matter what, and she is now all care, not even having the capacity to scratch her nose or talk - she’s totally locked in and is permanently on a profiling mattress and hospital bed.

I enquired about being paid to look after her, and was told no, apply for carers allowance, who in turn have told me that I’m not entitled to anything, and perhaps talk to the council, who have said that I owe them 8.5k in council tax as I don’t live in a house and that and I quote, my “unfirtunate situation you find yourself in” is none of their concern and not eligible for exemption - however in their infinite generosity they are willing to help me suggest a payment plan.

I’d hoped that a lib dem stronghold would show clemency given how much noise ed davey makes about his carer credentials. I was sorely disappointed. Rules is rules so it would seem, and especially so in a council that’s near bankruptcy.

She’s not negotiable. The social services answer to everything is put her in a home or get a live in carer - er no. I didn’t want to be in this situation anymore than they did - but I’m not about to bin her off to make my life and their finances easier.

And that’s the rub isn’t it. The state won’t pay me a salary to look after her but they’ll give an agency over 130k to provide care. Those that can work the system have enough benefits to be an equivalent of a 50k job and in so doing make a mockery of those of us who have genuine needs and have children who would love nothing moe than to not have a neurodiversity as opposed to wearing it like some badge of honour.

I’m in a state of limbo, I’m in a grey area that nobody’s rules seem to account for and all the while all I want is for someone to say yes, I understand let me help you. It seems the greatest lie told is that the state will be there for you when you need it most. It really isn’t.

I know that by the time she passes I’ll be a shattered husk of what I was, and if the skin hasn’t been played off my back I’ll be lucky, but she’s not negotiable - it’s the way I was raised and it’s the way I was programmed.

I don’t know how you do it people say…
I reply… you put one foot in front of the other and keep walking, when it’s over it’s over.

That and challenging people to live even a day in your shoes, trying to make them understand that your life is driven by routine and repetition, and that you watch the world go by through the bars of your window, living your life in a single room for the most part, and wanting so depserately for it all to end but dreading the day that it does, because you know from experience when they’ve been taken into hospital for something that nothing prepares you for the silence of an empty house, and that disassociated feeling of having so much time you don’t know what to do - you stare at a patch of wall only to realise three hours have gone by.

You wonder how you will integrate back into society when it’s over, go back to the world as the vietnam vets would say, and realised that you go into your own town centre as a tourist not a resident because so much has changed, or even worry about whether you’ll be able to rejoin society in a meaningful way and be able to make friends or a new relationship should the time come.

You feel like a swan at times, calm on the surface and paddling like mad under the water to keep all the plates spinning. You learn to only worry about things you can change. No point in wasting energy stressing or worrying about things you can’t. I doesn’t do you any favours in the long run.

But in these hardest of times, I know who my real friends are. That face that just shows up at the door uninvited and unannounced because they were passing and just wanted to see how you were…just because, where everyone else ran a mile, always finding some excuse as to why they couldn’t, and I know that I’ve more fingers on one hand than true friends in that respect.

I stopped believing in karma, the universe, divinity and all that rubbish a long time ago. I tried to use the pages of “the secret” as toilet paper after reading it but it was useless at that as well. I wanted to believe that good things happen to good people and that the universe looks after you, but then I woke up and realised it was morning. There’s no justice, there’s just us.

You pray for a cure so that future sufferers won’t ever have to deal with the way others will behave and treat them, You learn that society has so very little use and is so willing to discard people and things which it sees as unproductive or outside of the norm.

You scream when another person tells you “oh I won’t come in as I don’t think they’ll remember me…” but then follows it with how their friend has cancer and how they do their shopping for them - what do you want from me? blessing from the pope?

All said and done, I can’t say any of it hurts… I said yes to all of it after all. It’s what I signed up to and I’ll see it though till the end. It’s the promise I made her. All I pray for is the ability to keep those plates spinning.

Sorry for the long ramble… but if you’ve ot this far thanks for reading and persevering. :slight_smile:


Dear EssEmmDee
:broken_heart: :broken_heart: :mending_heart: :mending_heart: :mending_heart: :broken_heart: :broken_heart:
:people_hugging: :people_hugging: :people_hugging: :people_hugging: :people_hugging: :people_hugging: :people_hugging:

Speechless, heartbroken for you and screaming mad at 'the system, care agencies and insurance companies and council and council tax and ‘pretend-friends’

Thank you for taking the time to write all this, sharing so openly with us and articulating every piece so clearly.
There is nothing I can say, you’ve obviously heavy heavy lifted a lot of effort, raised questions and done so much to seek out financial or care support.

How would YOU like US to best support, help or ‘virtually’ embrace - dark humour? distraction? Ideas on flexible work?
I don’t want to presume anything here! You’ve been through so much.
So first of all just want to say ‘I’ve read everything you wrote, I hear you and we’re here in whichever ways best for you’

I hope Roll Call or some of the other posts resonate with you and shows you You’re NOT alone


It’s going to take us a while to resolve a few things. I tend to be the one talking about benefits etc. In various jobs paid and voluntary I’ve worked out I’ve been doing this for 50 years. Early onset dementia means that person should claim PIP or AA (if retired). Once that is claimed, it means you can claim EXEMPTION from Council Tax. Did anyone tell you about this? Has NHS Continuing Healthcare now been granted, or are you still fighting for it?


Hello from another Surrey resident. Welcome.


Hi @EssEmmDee Just thought I’d check in to see how you’re doing, considering everything you shared yesterday - sometimes it’s tough remembering all the details.
I’m sure others will also share their warm welcome and like @bowlingbun will be wanting to help if we can, to offer support.
Sending big empathy & hugs


I’ve just re read your email, the council tax issue is a real mess, isn’t it?
I’m just wondering how long you and your partner have been together?
How long were you looking after mum for, in mum’s house, if at all.
I seem to remember that there are some special Council Tax Exemption rules about not living in your house as you are caring for someone else in their house.
I can’t remember the full details, but I’d suggest that you contacted the Carers UK helpline, asap.

They are brilliant about finding really obscure details, and as a result, made me £50 a week better off, about 20 years ago, so I had great pleasure in telling the Carers Allowance Unit they were wrong, and giving them the legal references to prove it.


Hi @EssEmmDee, I hope you are doing ok. I am new to this forum and don’t have much to offer in terms of advice in your situation. I’m always willing to lend an ear


Hi @EssEmmDee you have been through a lot.

I hope you find the forum helpful and supportive.


I am amazed by your strength and love for your partner.
I hope you can find the energy to follow the advice of Bowling Bun(BB)
If anyone can find a way to make a difference BB will.
Welcome welcome welcome


Hi EssEmmDee,
Bless you …just read your hearwrenching post - all NIGHTMARES for you :frowning:
Cant say , do , or offer any placating words -
Except - welcome :pray: friend and fellow carer.
You are respected and accepted here.
You are not a robot - you are a person full of love .
With warm greetings :slight_smile:


Thanks for all the warm replies :slight_smile:

Bowlingbun, yes indeed she does get AA.

We tried for PIP, but as soon as we asked the parkinson’s nurse to help us fill out the form back in late 2014, she balked, went pale and told us there was no chance of getting it and just apply for AA as it was easier. at that point in time she wasn’t diagnosed Lewy Bodies Dementia, but was on the cusp of retirement age.

With respect to the council tax, my partner’s property in the Waverley borough has a Mental Impairment discount - 25% iirc.

With respect to my property in Guildford, this is what I’m currently fighting for - an exemption from council tax based on looking after someone else full time.

Continuing healthcare funding was denied. - the nurse assessor felt that the risk scores were not great enough to warrant NHS CHC funding neither full or in part.


Hi Victoria, you know what, being in a space with people who are walking or hace walked your shoes means everything, we all speak the same language instead of some fake sympathy or pretending to understand the weight we all carry.

Dark humour, distraction, hugs, I’ll take the lot! :slight_smile:


I’ve just re read your email, the council tax issue is a real mess, isn’t it?
Indeedy yes. I question whether anyone actually reads anything you send them or there’s just a bored spreadsheet surfer staring into their phone waiting for 4:30 and huffing whenever anything pings on their screen.

I’m just wondering how long you and your partner have been together?
I met her in 1996, so nearly 30 years now!

How long were you looking after mum for, in mum’s house, if at all.
I took care of mum every day since dad died in 2009. I dropped in to see her in the morning before work and then dropped in after work every day, and stayed the evening three times a week.
Mum was 81 by that point, and as she was illiterate and not tech savvy I made sure that I did all her day to day admin with her.

I seem to remember that there are some special Council Tax Exemption rules about not living in your house as you are caring for someone else in their house.
Well, now there’s a thing…
So this is the back bone of my struggle with Guildford BC.
I informed them that after mum’s probabte went through the house would become my primary residence once again.

They obviously didn’t get the letter, or the email backing it up, or pigeon, and three years later are acting as if they knew nothing about it.

I submitted the deed of probate, and asked for exemption to be applied under grounds of “occupant not living in the residence due to looking after someone else full time away from home”

They are arguing that some article of law states that as I was not living in the property when I inherited it, I was not eligible for any exemption and it would be classified as a second home and charged accordingly.

I gave them, and copied in the social services contact who I had hoped would back this up by confirmation, but they’re insistent I can go whistle.

I can’t remember the full details, but I’d suggest that you contacted the Carers UK helpline, asap.
They are brilliant about finding really obscure details, and as a result, made me £50 a week better off, about 20 years ago, so I had great pleasure in telling the Carers Allowance Unit they were wrong, and giving them the legal references to prove it.

Will do most definitely.


Just very quickly: if a full CHC assessment is carried out, it’s the decision of a panel, not one individual. Whilst the guidance does not carry the full weight of law, it’s unlikely that a judge would consider it reasonable that a panel of around 6 professionals should be replaced by one single individual.


Thanks Charles.

The document outlining the decision just says;
“the NHS continuing healthcare team identified that you are not eligible for NHS Continuing healthcare (CHC) or NHS Funded Nursing care (FNC) at this time.”

Were you just sent a letter with the decision? No back up score sheet? They have various “domains” aka sections, things like cognition, mobility, etc. and they should score each separate domain. Then you can challenge their score, and even if initially turned down, it’s useful in subsequent assessments to compare with a current situation, to see if things have improved or not. Hampshire, where I live, is one of the most difficult areas to have it granted, yet in parts of the north west it’s relatively easy. Postcode lottery. (Which Consumer’s Association statistics, not mine).


You also can download a CHS assessment guide and see what they are looking for. You can at least get an idea. The common saying is " needs are being managed" which you maybe able to challenge xx

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Tidying up my study I’ve found an old 2017 copy of the “Disability Rights Handbook”. Written by Disability Rights UK, I always say this is the best written book on benefits etc. that I’ve ever read. I strongly recommend you get a copy from your library. It’s updated annually. If you wish to buy a copy, do so in the name of your partner, there is a substantial discount.
It contains a summary of Council Tax Exemptions, apparently laid down in the Council Tax (Exempt Dwellngs) Order 1992 as amended. As it’s an old copy, the regulations may be changed, but this should point you in the right direction.

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I received it today @bowlingbun , thank you for the heads up.
It doesn’t mention anything about not being allowed exemption if you inherit a property in there, which is what Guildford Council are arguing.

It’s escalated now. They’ve issued a summons for non payment of council tax, which I picked up today - I haven’t been back for a couple of weeks to the house, so I don’t know how long it’s been sat there.

The irony? the summons states that I can’t even just show up on the day of the hearing - I’ve to ring them to confirm that I’m either going to be there or that I want to pay up the full balance.

I guess they don’t consider the matter in dispute, and know that I’ve no income since 2021 and that I’ll not be able to get representation to defend myself or act on my behalf. It’ll be like shooting fish in a barrel.

The worst of it is that the court date is the week after I fly out to Italy.
It’s the journey I really didn’t want to be making but I have to. I’ve got all the bureaucratic stuff to do with mum’s death to deal with and draw a line under, and it should have been done within 12 months of her passing.

Every time I dare to hope things just get darker, something happens and life becomes more bleak. It’s all been a bit overwhelming today. I feel all of a sudden very tired, very old and very weary. :anguished:


Have you asked for the date to be deferred?
Submitted evidence to show your partner needs full time care?
Even if you don’t receive Carers Allowance, you are still a carer?