Yeah, I seem to remember my, it was a bit of a hassle then, my, because my brother having to go to various banks and things, because they wouldn’t accept copies, he actually had to go and show them the original Power of Attorney and this sort of thing. But it was sort of like minor hassles rather than a major problem.

No, no, luckily we were both very much in agreement. I was doing it all but I was keeping my brother informed, because we, the joint Power of Attorney actually was what’s the term? I think on it said joint and severally; so we didn’t have to have agreement to act together but, yes, I did keep him informed, it was, practically it was me doing that, mainly because by that stage I’d given up work in order to cope with the situation so I’d got more time to do it. But no luckily we didn’t have any disagreements, we were, I don’t think, I can’t think of anything that we actually disagreed about.

But then, this was quite by, pure by chance, and it was another relative, I think, in the care home, after both my parents were in the care home, I, we were having a conversation with another daughter who was in a similar situation, and she sort of said, “Well have you applied for carer credit?” So I thought she mean, so I said, “Oh you mean the carer allowance?” And, “No, no, no, no,” she said, “this is not a benefit, this is getting your national insurance contributions.” Because of course being, it wouldn’t have mattered if the pension hadn’t changed, because I was almost 60 when I, when I gave up work; so if the pension hadn’t changed and I’m waiting till 66 it wouldn’t have been an issue. But of course as well as losing my income that meant I, to maximise my state pension, I needed another 6 years of national insurance contributions.

But I would say the average care home in [name of southern town] is £1,000 a week; and if, if the council were only paying £460 and if she’d remained the responsibility of [name of northern town] Council it would just have been financially impossible to move her. So this was, I think, the important thing, because I could not find out clarity on that information until I spoke to Age UK advisers. Because the Social Services in both councils, both in [name of northern county] and in here, different people were giving me different facts really; all I wanted were facts about how the system worked, and I just; luckily, because if it had been, in a way it’s a good thing they did give me different interpretations, because if they’d told me first of all and I’d taken that as gospel, but by this stage it’s like I didn’t believe anything anybody told me until I got it [laughs] you know, reinforced at least three times but if I’d accepted that I would have, that would have been it, I wouldn’t have been able to move her. It was only that I sort of thought OK, this is conflict here, I’ve got to find out which is the right answer that we were able to do it.

So you simply would not have been able to move her and she’d have to have stayed in [name of northern town]?

Well no, because if she’d remained under [name of northern town] Council and where would we, as a family, have found £300 a week?

So they said they had got some residents there that were funded by Social Services.

And had that not been the case or had you not known to ask that question there could have been a risk that you would have had to move again?

No, definitely, yes, no, definitely. No, that was, that was certainly a question that; did I actually ask it or…? No, when I asked advice from Social Services on finding an appropriate care home and they actually did volunteer that information, because they sent me to a link on their website, which has got all the care homes and you could see their the reviews, you know, the Care Commission reviews that they’d had on that and everything; and she actually did say that, “Yes, just make sure that when you’re contacting them you check that they do accept Social Services’ funding.” So they did, yeah, they did volunteer that information, yes, and it, it was very important to know that.

But then she said that you can, if you can show that you are caring for twenty hours a week, which I was, then you can apply and they will give you the, and it’s just self-certified because how do you prove it, self-certify, and they will give you your National Insurance contributions for that tax year. By this stage, of course, both my parents were in residential care so I was no longer in that situation, but unlike the council tax refund where you can go back quite a number of years, this you could only go back a limited amount of time; I think it was probably just perhaps the previous tax year. But by the time I found out, quite by chance, I was already out of time. So I applied anyway saying that, you know, I’d been told about Carer’s Allowance but no-one had ever told me about this and I’d only just found out about it, and so I wanted to apply for this I think it was only, I because I’d bought a year anyway I think it was probably only like a year and a half, but you think that every little helps don’t you? So they turned it down because I was out of; it just came back very quickly, you know, oh you’re out of time limit, turned it down. So I appealed and gave the grounds for the appeal and again it was turned down on the basis that, oh the information is on our website; but it’s like their websites are so complicated and if you don’t know that anything exists you’re not going to just stumble across it. Now I [laughs] and I think most people would have given up, I nearly gave up at this stage, because it wasn’t a large amount, it was like eighteen months, but because I’m quite determined and I thought you know, I don’t like being beaten by the system. So I appealed to a tribunal and, yes, won on tribunal.

No, because in my information to the tribunal, you know, I put, I’ve had dealings with GPs, with mental health, all the people I listed, I said, and Carer Allowance has been mentioned to me but no-one has ever mentioned Carer Credit; and obviously the tribunal then reasonably decided, well this, this is unreasonable, because it was purely because it was out of time, you know, you know, I, by six months I’d missed the time and it’s not as though it’s a huge amount of money, it’s just national insurance contributions, it’s just; so yes, so I did feel that was a victory [laughs].

So then the financial assessment – that was, now this appears to be a postcode lottery, because a lot of it seems to be not set in stone but at the discretion of each council. For example, [northern town] Council, they, my mum and dad both had a funeral plan, which had cost about £3,500, it was through Dignity, £3,500 for each of them, but when they looked at all their finances, because you have to go through all the, you know, have to provide evidence of savings, everything, they said , “Oh well we will not allow this, you have to pay for funerals or, out of the £14,000 that will ultimately be left, so we are going to count that this £7,000 that was spent on the funeral plans as though it’s still in your parents’ account.” Now when that happened I remember Googling [laughs] – good old Google – thinking ‘surely this can’t be right?’, you know, surely you must be allowed; it’s not like giving money away, is it, having a funeral plan, it’s sort of forward planning, and my mum was always, as I said, very financially savvy over things like this, but again this is a postcode lottery. A lot of councils, a majority it seemed, would not say this and there had been moves to make it legislation that they were not allowed to disregard this, but it is councils’ discretion. And also [town] where this was, as well as having a reputation for being one of the most stringent about what they allowed and what they didn’t allow, also the amount of money they paid to care homes, the weekly amount is one of the lowest in the country as well. So yeah, so it’s, wasn’t a good experience. But anyway basically the house of course wasn’t an issue at that stage because they were both living at home, but they had savings, because, phew, being, ah again my mum being, worked for the tax office she’d always saved, they had savings; so, so basically that was it, that was parked, and it was just like, well you come back to us in however many years when there’s no money left. So you then found out that there was no help whatsoever, that the only help was attendance allowance and being able to not pay council tax. So yes, that was quite a shock at that stage.

So we were getting through it, the capital was going down much faster than it had been in [name of northern town], but that’s what we’d anticipated. So in July I went online to [name of southern county] County Council and filled in the form to request a financial assessment. So first what happens is that you, because we were in a different authority, that before you could have the financial assessment you had to have a Social Services’ assessment to, they had to satisfy themselves that she did need residential care.

So a needs assessment had to be carried out first?

Yes, that had to be carried out first, which that took place; I met the social worker at the care home and that [laughs] well what, what did she, I didn’t warm to the social worker, the particular social worker because how did she put it? She said, oh yes, “Because I have to come out and satisfy myself that your mum’s not just a bit lonely and has taken herself into residential care, you see.” And I’m thinking would anybody really want to live in a place [laughs] like this? I certainly hope not to. And so I said, “Well yes, that’s fine,” I said, “but she has been in residential care for a number of years and she has had Alzheimer’s for 5 years and she’s 91, but yes, by all means I’m quite happy, I realise we have to go through this, come and…” So that was about 2 hours because you have to go right back to the year dot with all the assessment.

And, and this was exactly what the social worker said, right, at the end of this interview, she sort of she said – and these were her exact words – she said, “So the social services pay £615 a week so that would leave £135 a week top-up.” As though that was, that was it, you know. So then I sort of brought up my-, I challenged it on the basis of the 2014 Care Act and, and I said, and I said, “I was very careful to look at other care homes, I’d disregarded some,” I said, “I don’t think you’ll find a cheaper room in [name of town A].” And she immediately said, “No, you’re probably right but we can get a cheaper room in [name of town B].” [name of town B], I don’t even know [name of town B], it’s down, it’s, I think it’s a more deprived area actually; but it wasn’t so much that – because if you’re in a care home she’s not really going out – but it’s like, for example, every Friday I take my 3 year old granddaughter and we call on the way back from her ballet class every Friday, I wouldn’t be able to do things like that if she was down in [name of town B]. So, so I sort of said this, and so I said to her that I knew that they had to give at least one option that met this needs and moving her to [name of town B] would not meet those needs, because it’s a bit like, well she’s a parcel we can just move her to [name of town B] because it’ll save us X amount of money, and so, and again it’s like the bullying thing. I said to her, “And so if you don’t agree to her staying here I will be appealing on that basis and,” I said, “make no mistake I will appeal.” And I think she knew I meant it, you know, I was, and I would have done. So that was that, and that’s just what I’m saying about it’s the system, not the individual. Because then we went up to see the manager, because she wanted to ask the manager whether there would be any negotiation, would, whether they would reduce the fees, because she’s then backed off from me, and she said, “Oh well we’ll go and talk to the manager and see if they’ll reduce the fees.” And as I said to her, “But why would they because, you know, they’ve got to make ends meet, why are they just going to suddenly say oh now social services are paying we’ll make it cheaper?” “Oh sometimes they do,” she said. And so we went up there. Anyway they wouldn’t because I’d already, I think it was quite a good rate compared to other care homes, a lot of care homes you are paying £1,000 and I think some of the newer rooms there they’re £1,000 as well. And so the, I remember the social worker then said to her, “Oh when I took this job I didn’t expect it to be all this about fighting about money.” So that’s why I don’t blame that individual social worker because it’s probably a horrible part of her job, but that she is obviously told to put it that families think this is it, we’ve got to top up and families feel guilty because they think OK, my parent’s going to get moved somewhere if I don’t agree to pay this, but that’s not actually the case. They don’t tell you that the Care Act is actually in legislation that they’ve got to offer at least one option that meets physical, social and emotional needs, and if you can make a case on that they’ve got to prove otherwise.

But the manager that was there when I was looking at care homes, I actually told him that she would become a capital depleter about 6 months later, because social services, rightly this time, in [name of county], had told me that when I’m looking at care homes make sure I select one that does accept social services funded residents, which was, again was important to know, because there are one or two, I think, luxury ones here that cost a lot of money and that I think they, they only take self-funders. So, so yes, he knew. He didn’t so I think I think as I remember it I actually said within about 6 months, which, and it was, it was almost exactly 6 months, that she would be applying for social services’ financial assessment, because I have heard of other care homes when they yes, they ask for proof that you can self-fund for a year, for example, as a period before they will accept you. So no, that, this particular care home, that wasn’t a problem, no. So they said they had got some residents there that were funded by social services.

And had that not been the case or had you not known to ask that question there could have been a risk that you would have had to move again?

No, definitely, yes, no, definitely. No, that was, that was certainly a question that; did I actually ask it or…? No, when I asked advice from social services on finding an appropriate care home and they actually did volunteer that information, because they sent me to a link on their website, which has got all the care homes and you could see their the reviews, you know, the Care Commission reviews that they’d had on that and everything; and she actually did say that, “Yes, just make sure that when you’re contacting them you check that they do accept social services funding.” So they did, yeah, they did volunteer that information, yes, and it was very important to know that.

I think actually I could have rung the Alzheimer’s Society, but I, for some reason I knew that Age UK had got specialist advisors that you could ring that would give you information and they were, they were wonderful. I could not get clarity from either end but what they told me was correct, they sort of said, “No, you must move her now, before her funds run out, because,” they say, “if you move her now there’s no set time period, but if you move her to [name of South county] she will become what’s termed a normal resident, when she becomes a capital depleter she will then apply for a financial assessment from [name of South county] County Council and it will proceed on that ground,” she said, “if you wait until she is becoming a capital depleter in [name of North town], once [name of North town] Council take over responsibility for her payments in her residential care home, if you move her then she will remain [name of North town] responsibility.” [name of North town] are paying £460 a week, I think this is the cheapest room I found which I was happy with but it’s £750 a week, so you’re talking about a big difference.

Well also that mental health nurse, she told me, which I think we did before the financial assessment that that mental health nurse also told me about Attendance Allowance, because she very importantly, because it’s quite a complicated form, the Attendance Allowance, and she was the one that told me that, not to be dishonest, but she explained that there are two rates, the standard rate and the higher rate, and so she said, “When you’re filling it in take the worst day and fill it in as though it’s like that every day because,” she said, “if you don’t do that you won’t get the higher rate of Attendance Allowance.” And this is what I mean that you just, if nobody had told me that I would have been [sighs] probably more honest, if that’s the word, about filling it in and I probably wouldn’t have got the higher rate but as it turned out, because you are paying for all these care-, carers coming in yourself, or my parents were, it was very important to get the higher rate. So to cut a long story short, they did both get the higher rate Attendance Allowance, so that was that.

Oh yes, she was very [laughs] very financially savvy. That’s why [laughs] I mean we just lied to her about it I mean when we got to the situation she didn’t know how much it was costing and how much her savings were going down because she would have been absolutely horrified if she knew that absolutely everything had gone, the house and everything. I mean like now she still, some days she’ll sort of say, “Well haven’t I got a house to go back to?” And you have to try and smooth over it, because you can’t actually tell her the whole financial truth, she’d be so horrified.

So the first thing, when we decided it would be in her best interests to move down here, was I started with [town] Social Services and I sort of said, “So at the moment my mum’s self-funding but we can see that within a year she’s going to get to the situation when we will be asking for another financial assessment, because the capital.” In their terminology she will have become a ‘capital depleter’ is the term which they use. So they sort of said, so I said, “So is it better to move her, try and move her while she’s still self-funding or to do it when she’s within Social Services’ funding?” And first of all; well I got two different stories from two different social workers in [name of northern town] [laughs] first of all they told me, “Oh no, it’ll be better if you wait until, move her when she’s become under our system,” and all the rest of it. Then I rang [name of southern county] Social Services here, and I couldn’t really get clarity; now luckily I then knew, and I only knew this, I think, because after my mum was diagnosed and I had to give up work I became an Alzheimer’s research volunteer and you get, you get such a lot of information from doing that about various systems and things and I knew that; I think actually I could have rung the Alzheimer’s Society, but I, for some reason I knew that Age UK had got specialist advisers that you could ring that would give you information and they were, they were wonderful. I could not get clarity from either end but what they told me was correct, they sort of said, “No, you must move her now, before her funds run out, because,” they say, “if you move her now there’s no set time period, but if you move her to [name of southern county] she will become what’s termed a ‘normal resident’, when she becomes a capital depleter she will then apply for a financial assessment from [name of southern county] County Council and it will proceed on that ground,” she said, “if you wait until she is becoming a capital depleter in [name of town], once [name of northern town] Council take over responsibility for her payments in residential care home, if you move her then she will remain [name of northern town] responsibility.” [Name of northern town] are paying £460 a week, I think this is the cheapest room I found which I was happy with but it’s £750 a week, so you’re talking about a big difference.

We both agreed that we wanted to get her out of where she was, but the problem was could we do it financially, and the other thing was that we were afraid about you don’t know what the effect is going to be mentally on moving someone with dementia. But as it turned out, and, which was what I thought, a year on she’s completely stable and having me visit for an hour 3 times a week is much better than going up for long visits once a month. So it’s been both emotionally and in every way it’s been, it’s been a good move, yes.

A good move, yeah.

But it was a risk.

So I, I emailed maybe, maybe about… Some I looked at the fees or I rang them up and found the fees were so expensive I just thought, ‘Well that’s just ridiculous’. There was one which was £1,500 a week, for example, so I didn’t even write to them. When I’d done that, then I wrote to them; some I just didn’t get replies from so I thought ‘Well that’s not a good sign is it?’ [laughs] The ones I didn’t get replies from. I only got replies from three so I went to, I went to those three. And I think it’s difficult to justify because a lot of it’s a gut feeling when you, because I’d been visiting in care homes where they were and because I’d been in a care home situation a lot, visiting, then I think I would pick up on things that maybe somebody who’s never been in one before, it’s difficult, because you’re more tuned into it and you just, when you’re there you just notice what’s going on around you and you’re just like watching how they interact with people that are there and things like that, and I just had, and it was a very convenient location, the price was, well the other one was the same price actually, the two I was comparing were the same price, and I just had a better feeling about it.

So yes, I was very conscious about keeping costs down, which you, which you feel horrible because, because you see lovely rooms which are a £1,000 a week and you think well yes, I’d like mum to have that room, but you just know financially you can’t sustain it.

I started with a list that I was directed to online when I rang [name of county] Social Services, then I looked at the Care Quality Commission reviews actually that is a bit misleading, and I already, I already knew this I think from experience of the residential home where my mum and dad were, because the problem is, and it’s, it’s a bit like, it’s the equivalent of Ofsted for schools really, it’s, it can be, if you just look at the headline as to whether it’s good, in need of improvement or whatever then it can be misleading, because if you automatically rule out anything that says in need of improvement you’re really restricting your choice, and sometimes it can be something which is not really to do with quality of care. So the one they had here was in need of improvement but one of the reasons had been because it’s an old Victorian house the laundry is in the basement and they, they weren’t happy with the basement area of the laundry. If you looked at the, I can’t remember what they are now but there’s five different criteria and to me the most important one is the quality of care. Because, yes, OK, there could, it could be that this laundry being in the basement, and there was some damp in the basement, could increase a risk of infection, I do see that, but to me that’s different from a care home being rated in need of improvement because it’s not got good on the quality of care, because that’s what affects your relative.

So at this stage, that’s when we started realising that we needed to get an external care agency in, because the main worry that’s triggered this off was medication. Because they were both on various – being in their mid-eighties – blood pressure medication and that sort of thing, and my mum was very convincing because she would say that, yes, she was taking her medication, she was giving my dad the medication, but when I visited, which at this stage was only once a week, I was finding tablets in… Even though I’d started putting the little packs that you can buy at the chemist where they’re in the days – they were still in there. So even though she was adamant that she had, because in her mind she had, they were not getting the medication. So we first started with a care agency for medication visits, which I think’s quite common that that’s the first thing; it was very brief, it was 15 minutes twice a day, they’d come in and make sure that they took, both took medication.