Certainly one of my sisters is very good at visiting the Martin Lewis website, for instance, you know, and getting all sorts of tips from that, I can’t say I’m as at good at that but, and that’s come in useful again actually just recently because he put a tip on to say that people with diagnosed dementia can don’t have to pay council tax.

Yeah, so that was the other thing about it; we were told she was end-of-life and the person who told us that said that she thought that mum would be eligible for C-, for CHC, yeah. As soon as we moved her into nursing the nurse tells us, “she’s not at end of life, in my opinion,” and “in my opinion she won’t get CHC.” Yeah, so that we thought was; I mean we should have been getting one message [laughs] from them, yeah? They should have had that discussion before they talked to us and I don’t think they did and I think that was; I mean it’s awful to say because the standard of the care there has been great, but it just feels like they were trying to screw a bit more money out of us, I’m afraid.

I don’t think so, at that stage. When we first received that news that she’d been; I mean that word ‘continuing’ the start of continuing healthcare makes you think that it’s continuing and would not be discontinued. So maybe that’s a misnomer, maybe it’s not [laughs] I don’t know. But yeah, it gives you some impression that we’re covered, we’re covered and thankfully, thankfully, and luckily, we don’t have to be worried about that; and I appreciate that that’s a very personal view because obviously other people are in similar situations who don’t get fast-tracked who don’t get the funding and have to find it themselves. So yes, we found ourselves thinking well we’ve been quite lucky there, under the circumstances. Obviously all wish mum wasn’t in that situation in the first place but you know, under those circumstances we were fortunate.

OK, it was withdrawn after [sighs] about 9 months, 8 or 9 months it was withdrawn, and mum has been paying for residential and nursing care for about 12 months now. So I don’t know if that stacks up with the previous figures I’ve given you but that, I think that’s more accurate. 8 months funded, currently about 12 months unfunded.

I mean interest rates are poor, so poor at the moment, you know, what’s the point? We don’t want to gamble with the money I mean obviously we could try something to give higher returns but, you know, I don’t think we can afford to gamble with the whole world’s financial systems [laughs] seemingly, well the whole world appearing to be crazy at the moment with lots of things. It’s very difficult to make that judgement so obviously we need some sort of security with that. You know, mum has a reasonable amount in her premium bonds and hopefully [laughs] one of those will come up trumps [laughs], but who knows? That’s the only things we do. I mean we have it in a standard account with a normal bank and she has some premium bonds and that’s it, yeah, and we can’t afford, I don’t believe, to be risky with anything else. I don’t think the sums that she has are enough to warrant us going to a bank and getting significantly better interest rates or anything like that.

We had Power of Attorney so myself and one of my sisters tends to manage mum’s account. So obviously mum had started to pay from her savings; at the same time obviously we, mum had left her home, her flat that she owned here in [town], and we put that on the market to sell that and eventually, after a few months, that sold so that topped up her savings and we’re now funding mum. Obviously when she went from residential to nursing care the fund the fees increased at that stage so that was a bit of a blow again but mum’s fees are currently met out of her savings.

Yeah, we’ve had difference of opinion, you know, because we do, we have considered at various times moving mum from the care home that she’s in and that is, to a certain extent, because although the care she receives from individual carers is fantastic dedicated and loving and very well carried-out we do find that the pressures the management team put on us sometimes from [name of care home]; that’s, maybe I shouldn’t mention them, but have been we’ve been unhappy with, let’s say.

Do you mind explaining what you mean by that?

We feel that we’re, at various times we’ve been forced to make decisions very quickly and we’ve had our hands, arms twisted, I should say. For instance, when the, and this is quite difficult to say because this is completely subjective. When mum had a fall at [name of care home] and she broke her hip the hospital were recommending that she needed nursing care at that stage the hospital were keen to get an empty bed, to get mum to go somewhere the care home were ringing us very regularly to say, “Well if you don’t go for this nursing room now you’re going to lose out on it.” And that was really pressured on us and when obviously we were most concerned about the care, the immediate care for mum [laughs] when we were very worried about her if she would survive that we felt pressured then. Similarly when we were told before Christmas that mum needed, was, we were told specifically by one person that mum was at end of life and she needed nursing care and then as soon as we moved her the actual nurse at the care home said, “Your mum’s not in end of life.” So we feel that was disingenuous, we feel we were manipulated, I’m afraid so we’re not happy about that.

We tend not to have any dealings with the management at the moment. I find it difficult at the moment because of that incident where I feel that we were railroaded I find it difficult to go and talk to them, because we did have a meeting after our complaint, because we did complain and we had a meeting and that didn’t go as well as it might have done, let’s say. So I find it difficult to trust them, I’m afraid; I don’t particularly want to deal with the management anymore.

So we’ve looked at; and there have been one or two other incidents, let’s say where we’ve felt the need to move, look at moving mum to somewhere cheaper, to somewhere equally nice but cheaper and, yeah, that’s created some difficulties and frictions within the family itself; some people who think it would be appropriate to move and some people who don’t.

She was in hospital for probably two weeks or so, maybe a bit longer than that and, yes, they wanted to put her into nursing care after that, she moved into a nursing care room but, to us, she didn’t seem, although she could no longer walk at all she didn’t seem, in other aspects, much different from how she’d been in residential; and the carers that she’d had in residential were very good and very fond of her and she’d made, made some real nice friendships with some of those women, largely women, in the residential section, the carers I mean; the other residents hardly any communication between any of them but the carers were very good with her and she’d built up a real nice, it was just real nice rapport. So we felt that that was the best environment for her. Yeah. And, yes, the, so when she went into nursing initially they did put up the fees significantly to the nursing care things and we had a bit of a, my sister, one of my sisters had a rant at them because of the hike and they did allow us some latitude on that before we convinced them that mum could go back in residential.

Think ahead would be my advice. The GP had told us on a number of occasions that we would have to start thinking about alternative arrangements for mum; that was even before she had her cancer. We didn’t think ahead enough, we didn’t scout round places, we didn’t view care homes at that stage we wanted to put that off because we didn’t think it would ever get to this. So think ahead I think is a good one; be prepared.