I did forget to say, with my mum and dad’s wills, with my mum and dad’s wills I can’t remember what it was called – they had a ‘tenants in common’ part to the will; so obviously half of the value of the house that they lived in was mum’s, whether she was alive or dead, and in the will it would have gone to me and my sister, so that money had to be put in Trust. We could use it, so we did use it, or some of it, to buy the next house, so my dad could use the money but only for premises, not for spending.

I’d approached the care agency for night care but it’s double the cost; so at the time we were paying £18.50 an hour in the day, so that rose to something like £34 in the evening, an hour, and that was just, we can’t afford that, and the council said to me, no, they weren’t going to fund any overnight care whatsoever, so that would all be our funding. Now whether they would have started funding the daytime care to help us pay for the [night care], I don’t know, because we never reached that point, because by the time he’d been, I think it was only about 3 or 4 days when I’d had some sleep and life was what you would call normal but we realised hadn’t been normal. So we hadn’t realised until then; I think it was when I watched half an hour programme without being disturbed, I ended up hysterically crying, realising that we hadn’t ever done that for a good year, if not 18 months, we hadn’t ever chatted to each other, we hadn’t done anything as a family, because dad was always there and we always… You know – it sounds worse than it was – he didn’t make our lives hell but you suddenly realise that you couldn’t be yourselves because there was this other person that needed a bit of attention, and it was at that point then that I just sort of said, “I can’t go back to doing this anymore.” And then, you know, so we then approached the nursing home.

So who was going to care for my dad when I was attending the group? And, um – I do get a bit opinionated – and so I refused to go. It was, I was like, saying to them, “Well what is the point? If I’m paying somebody to look after my dad just to come to see you?” You know, “I could find out a lot of stuff on the internet.” By this time the Alzheimer’s Society was heavily involved in these dementia cafés and so I got in touch with the, the nearest Alzheimer’s Society coordinator was in [name of town] but it was, she could drive out to, you know, so, I contacted them for advice; there’s a lot of books out there so I read a lot of books.

So I would be probably [sighs] going on the internet really. I think, my first port of call wouldn’t be Social Services because they are so overwhelmed and in our experience they really don’t know what they offer and, do you know what I mean, there’s not a common knowledge within the Social Services Department, they only know their tiny little bit they’re worked in.

So I would be going at so depending I mean for me personally I would be still advertising the Alzheimer’s Society fact sheets, whether you’ve got dementia; whether dementia’s a problem or not their fact sheets are brilliant, and it’s about paying for care, it’s about different types of care, it’s about you know, the legislation on Powers of Attorney, different types of Powers of Attorney, advance care planning, thinking of the future, everything, they cover everything, and so whether you’ve got dementia or not that’s still applicable for anybody that’s ageing and likely to need care.

I would be probably [sighs] going on the internet really. I think, my first port of call wouldn’t be social services because they are so overwhelmed and in our experience they really don’t know what they offer and, do you know what I mean, there’s not a common knowledge within the social services department, they only know their tiny little bit they’re worked in.

Basically, in all fairness, I don’t think they’d come across this situation before, because most houses are jointly owned between spou, you know, couples aren’t they?

Whereas this wasn’t, this was a different generation; so my dad had no financial, we had no dependence on my dad financially.

So things like the council tax was already in place when they were living together and Attendance Allowance was already in place and then my mum also ended up with Attendance Allowance although she seemed to, she seemed to not understand what that meant; you know, it wasn’t that she could go and buy some more clothes at Marks’s, it was; so she never, she had physical problems so they needed help with cleaning and stuff, but she never got a cleaner, it was always me doing it, and then I didn’t get paid [laughs] and thinking hang on a minute, this is what your Attendance Allowance is for. And I do think that’s, I’ve come across that with so many people that they’re managing together, then they can get this funding, so they spend this extra money on something and then when they need something they’re not actually acknowledging that the Attendance Allowance is for that, and so therefore, no, you can’t, but then it’s changing their life and, yeah, so.

Yeah, yeah, I couldn’t get Carer’s Allowance because I earned too, you, you can only, I work the right amount of hours, you can only work 16 hours a week but you can only earn, well at the time you could only earn £100 a week and I earned just over £100 a week so I couldn’t get carer’s allowance, but Attendance Allowance he got. And we also got because we lived together so we didn’t have to pay for a television licence, which I thought was a bit weird because he didn’t watch the telly, we did [laughs] but I did, you know, I did say, “Well it’s OK, we, you know, we’re a whole family living there.” But they said, no, we didn’t have to pay and we got 25% off the [sighs] council tax.

I did approach the Water Board because they do, do discounts, depending on your needs, for hygiene care, but although my dad was needing regular baths because of his continence issues and I did again argue the toss to main, you know, to maintain his skin integrity he needed proper hygiene care but they weren’t buying it you literally can only get money off if you had certain types of eczema and psoriasis you know, it was a condition label rather than a what was required label but I tried.

Well you’re looking at, we were looking at, we were paying originally £700 a week because it was respite, but the second home he went to was £1,000 a week, and he had to fund that until obviously he’d dropped below the £23,000, but he didn’t have any savings, all his savings were tied up in our house, and that was where the problem came. So they said, the council said to me that they would lend us the money; I can’t remember what they called it; deferred payments; but they would charge us interest. And so I was like, “OK, but what happens, so what happens then about paying this deferred?” And basically we could carry on with deferred payments until my dad died. So my question to them was, “If his bill ended up being £80,000,” because at the time my dad was still physically OK, “what and his value of the property was say £60,000, what would happen about that other £20,000?” And they said, “We don’t know, we’d probably come, you’d probably have to pay it,” because our monies were combined together. And at that point I was like, “No, I’ve lost my career of what I was doing, I’ve lost my home.” Because we lost, we had to sell our house quickly so we had to sell it cheaply; the same with my dad’s house, when we sold that we sold it for £30,000 less than it was valued for because it wasn’t moving. So the pair of us had lost quite a bit of money with all of this and I had reached the point of, no, enough’s, enough, I’m not losing anymore. And also my question was, and this was being, me being me; but if you jointly own a home then surely the insurances should be split between you? So my dad should still be paying half of the value of the property as in for insurance purposes, because if the house burnt down then there would be nothing left, you know? And Social Services were saying, “No, all the bills you have to fit, you have to pay everything.” And I’m like, “No, that, that’s not right, that can’t be right, because it’s hi, you know, insurance particularly, it’s in his interest and your interest for us to maintain the house and so if something needs doing then surely he should be paying half, because that would, you know, help his money at the end.” And they were adamant, no, that wasn’t right. So we put the house on the market because I was not going there, at all we put the house on the market and the week we’d signed the contracts they came back to me and said, no, I was right, there was no basically, in all fairness, I don’t think they’d come across this situation before, because most houses are jointly owned between spou, you know, couples aren’t they? Whereas this wasn’t, this was a different generation; so my dad had no financial we had no dependence on my dad financially and so, yeah, I remember sitting in the car, because they’d rang me just as I was getting out the car, to tell me that, no, we, you know, my dad could still contribute; and I’m like, “Well I’ve sold it now, it’s too late now.”