I think not, not quite an answer to that but I think my one main observation, which worked for me and my mother because it’s how we, she was and I am, is not to wait for the absolute crisis and is to have those discussions and some thought beforehand about where, you know, so that; I mean I, because I had largely taken over the management of her money because of her eyesight I knew where all, you know, her investments were and over time was able to sort of bring them together so they weren’t as fragmented and didn’t have to deal with so many bodies and so the rationalisation, if you like, of her finances. So it was, when I look back on it, in a sense there was quite a long lead-up to it and we had talked about what might make a nice care home or what sort of thing would be important to her and some of those were serious conversations and some of them were quite light-hearted. But it did mean that when it came to the crunch I felt very confident that I knew what she would have want, what she wanted what was the best I could achieve and what the family were happy with. So we didn’t, you know, fortunately we didn’t have any major rows or upsets or difficulties but I know of plenty of people who, for whom, and I understand why, it’s an entirely human reaction, which is either it comes out of the blue and you didn’t see it coming or you put it off because it’s not a comfortable conversation. For me that was the one huge benefit was that I didn’t, it wasn’t a shock or a surprise and my mother was fortunate to manage until her mid-eighties so for, and that’s what made it so much easier than it could have been to organise and to sort out.

And then when you’re self-funding we [laughs] we had a spreadsheet and we had a financial, we forecasted all the outgoings, you know, absolutely everything right down to the chiropodist, the hairdresser, whatever, we plotted all the finances versus, you know, what the income was that we were plotting against, if you like, and so we knew how long the money was going to last notwithstanding the fact that obviously the care homes put their rent up every year regardless so you have to take that into account as well. But we did, we plotted, so we had a spreadsheet [laughs] and we got, you know, you had to be totally organised so that, you know, nothing would come up as a surprise really.

I obviously I’ve got to manage my money carefully because we’ve got to make it last out as long as Joan and I are here, and then the kids want some of it but and then, and Joan’s health, I mean no-one knows how to cure Alzheimer’s, and I’ve done a lot of reading on the subject and I do what I think is right for Joan

I think that question, as you say, of you don’t know what’s going to happen in the next decade, that makes it difficult to sort of predict and manage for doesn’t it?

Well if, well if I die then Joan’s sons would make sure that she’s all right and I’ve made it clear to them I would like Joan to be able to stay in this house and have somebody to look after her. So that’s what I would like to see happen that’s if well that’s, that’s a real problem; if I die, if Joan gets worse then what if she does get worse what does that mean?

Yeah, it jogs along, it jogs along but no, there’s, I, you know [sighs] I need to do the sums a bit more, but I always think about just how much it costs to, you know, employ the carers but actually it’s more than that. It must be costing at least £50,000 a year, I would have thought.

So your mum, very, very prudent…

Yeah, absolutely.

… had managed to save for over five years of doing that.

Absolutely, absolutely, yeah, no, absolutely she did, yeah. But definitely within the next couple of years I would have thought she’ll run out of money.

And then there’ll be different decisions to make?

I’ve no idea, I don’t know; we might have to lend her some money if we want to keep her in her home and then sort of take that out of the house sale. I don’t know, I don’t want, I don’t want to think about the, what the future holds, so.

I am left with the worry about what’s going to, what the future’s going to bring really and, and I don’t know, it’s just, it’s a bit upsetting really.

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.

Take your time to do it; do it sooner rather than later; I think that’s something I would say. I was really clear in my own head that we were not going to get to a crisis point, either my crisis or Graham’s crisis, where there was no alternative; and I do know friends and people who have got to that point. Don’t get to that point where then you have only probably, you know, the one place that happens to have a vacancy at the moment, which is probably not the place that you would maybe choose. It might be but it might not be. So think about it sooner rather than later; and that’s an enormously difficult thing to do. I mean most people, you know, I don’t suppose anybody wants somebody they love very much to go into a care home and it’s really difficult to even think that awful thought, all the guilt, all the, you know, betrayal, the, all those feelings that whirl round in your head; again somebody to hold your hand and to say, “that’s entirely normal, of course you’ll feel like that, but you have to do what’s right for the person and you have to do what’s right for you.” You know, that’s the other thing is people tend to sort of put their own needs to one side and, and, yeah. So a lot of this is fairly clichéd stuff but I think actually clichés are clichés because they’re true, you know. So sooner rather than later, yeah, yeah.

And the GP that morning had to said to me, you know, “You have got to think seriously about your husband going into care because he’s becoming impossible to manage.” So I’m afraid it was the wrong way to do it, because I hadn’t looked at any homes, I hadn’t done anything at all, apart from listen to what other people’s experiences were. So I did know a bit about it and I’d been reading different books but so he was in for a week and then they said he needed to be, come out.

Well I should have, I should have put an applications in for here whenever I realised that it was a good place to go, you know, it was a good choice. Like my daughter had the wish, she brought the actual, actually brought the application if you like and I didn’t fill them in immediately that’s one of the things I should have done. I, perhaps now do you go round and visit care homes to see if they’re all right, if you don’t need to go in? No I don’t think so. The reason that you might know about care homes is that you know somebody who’s in there and you visit them otherwise you wouldn’t.

He originally; just as an aside, one of the things I liked about [Name of care home] was when we went there, I said, “Well what happens if he needs hospital or his dementia gets bad?” And they said, “It doesn’t matter, once he’s here we can cope for all things.” So there’s a dementia unit there, there’s a hospital, I think they called it a wing, but there’s a hospital floor. So when he broke his hip they moved him to the hospital floor because he needed more care but they didn’t charge extra.

Really, I mean I would think that we made fairly good preparations. You know when I look back now I think well we could have done this and we could have done that, but I did actually do a fair amount of work in getting ready for this situation, you know, yeah, yeah, yeah.

In advance of either…

That’s right.

… of you needing to think about it?

Yes, yes, yeah.

So you asked professionals?

Yes when I, I mean I, it seems as if we came in here helter-skelter but in fact it wasn’t a leap in the dark, we knew where we were going and I know the background, yes, yeah.

But people are people, they put off tomorrow [laughs] we’re all guilty of it [laughs] I am anyhow. People say to me, “Oh God you’re,” you know, “you are well prepared [name of participant]” and that, and I think no I could have done more, you know, I really do looking back, yeah I could have done better, but hindsight.

In a weird way she, it was as if she was knew there was something looming, there was some, you, you know, when you talk about, you know, you’d go out, I’d say what I spent on something, she’d go, “Oh that’s a lot of money.” And, you know, and it was almost as like, “Well, you know, I need,” she’d say, “Well I.” She was cost conscious because she thought there was something, you know, “We don’t know what’s going to come, what I’m going to have to pay for.”

So do you think that was partly you said she was a nurse…

She was a nurse, yeah.

…so, do you think that she had more awareness of what could be?

Yes, yes, and also a lot of her sisters have had dementia she’s the youngest of five sisters and she, so she’s actually looked after her own sisters that have had dementia, so. One of them died in 2015, I think, she helped, looked after her; she was in [Town A] in [County]; and then another sister before that in [Town B], she helped you know, sometimes, not all the time, but with her. So she was aware of what, you know, what the progression can be, you know, what can happen and what it can be. Another sister in [Country] who’s kind of about the same as her but she, she’s not as aware of her, she wasn’t as aware because they’re kind of fairly, a fairly similar stage, I think. So yeah, she was aware and she was, she was frightened, obviously she was frightened; and her mother as well had had it. So she, you know, she, I think she foresaw that there could be significant costs involved.

Well the Power of Attorney actually my mother organised. She was a very pragmatic, forward-planning woman; she had been on her own for quite a long time, was very used to managing all her own affairs and it was only, it was partly the widom of just knowing that the time would come when she would need some help, but also as her eyesight faded then that’s when things became really difficult for her and so actually she put in place the Power of Attorney some years before, I’m try, she would have been in her seventies, early seventies, I don’t remember exactly when…

When she was still living independently?

…and so yes, and I remember her saying, you know, to me and my sister, “Right, I’ve, you know, I’ve done this, sign these forms.” So they were done and then put away and weren’t used or even thought of for quite some time possibly even ten years; I don’t remember specifically but a long time before.

I needed some help. We arranged with Social Services, we, something they do provide is advice over the state of the house and things like that. After we’d been on the second holiday, on the first holiday in Nepal, I realised that that house was not going to be very suitable to keep her out of a care home so we had this land at the back of the house with the access to the bottom, it’s an orchard here, so I decided to build on this plot. My youngest son by that time was a quantity surveyor, his brother-in-law was an architect, so I got good access to [laughs] help and obviously with selling a house like that I could get a mortgage while we were still living there to finance this. So the architect, my son, myself, decided on the layout based on what we knew at that time; so we’re essentially a ground floor living with a sitting room; this is called the courtyard because the architect [laughs] wanted the area between the two buildings to be, and he wanted it sort of paved like a courtyard, but I wouldn’t have that, couldn’t hang my pictures on it [laughter] with an en-suite bedroom and then it was at that point I decided to ask for help with identifying things, so things like handrails, which you can see we had put in. At the time we had a shower cabinet in there which Myra could get in and out of, no problem, with help and slowly that got to the stage where she was having great difficulty getting in. So I decided to ask help from a commercial organisation that did wet rooms.

And they, he did struggle there, they struggled with him because he wanted to go home. Mum used to go, she was still driving at that time she used to go every couple of days because she missed him, and stayed with him for a bit, and then she used to come home and be sad or whatever, so. And I used to go up – it’s 3 hours’ drive – I used to go up every other week then, in-between work and things, and I was hoping, and I was talking to them about it, hoping them, to bring them down to this area but they, they couldn’t cope with, with anything like that, with the trauma of my, losing my sister and the fact that they’d got a house that they’d lived in for 30-odd years it was just too much for them to consider, even though we said, “You don’t have to do anything, we can just find somewhere and you can come down.” But they just couldn’t cope with not being in charge of what they were doing, so.