So I do think finding the right person, the right people and just be, you know, it’s going to cost a lot of money, it’s going to cost a lot of money, and I suppose you don’t know how long you’re going to need it for. So I don’t, it’s complicated. It’s, ah the other thing that’s worked to my advantage probably is that I’m, it’s a double-edged sword. I’m an only child which means that it’s all been on me to sort out, which has been hard, but I don’t have any sibling friction; and I’ve seen that in a lot of families where one person wants to keep looking after the person in their own home and I know a daughter who does that and another sibling, her sister, would have wanted to put them up in a care home, sell the house and put, you know; so different people having different ideas about what’s right.

I was taking her to some things, I was taking her to the Alzheimer’s Society singing for the brain and I also, and so I’d got to know quite a community of people who were looking after their loved ones, spouses or sons and daughters looking after parents, and I became quite hooked in to what was going on locally and so I started taking her to lots of different places memory lane cafes; and there’s one particular cafe that I got, I’m still involved with in terms of volunteering, she goes there once a week.

I suppose I’ve got a bit of a network now; and then, but there’s, you know, but then you get, well not anecdotes, but people have said, oh my husband, we got continuing care for my husband, you know, and then I think, you know, she’s really wealthy, that woman, how did she get continuing care? I mean that’s a great mystery, the continuing care thing, and I’ve just got a brochure now but, you know it seems, it’s a mystery, the continuing care thing, it seems to me. So anyway, so it seems, it seems some people seem to be getting things and yet their situation seem to be comparable to my mum. So that’s a bit of a frustration but I’m not going to get too worked about it because we’re surviving at the moment, so.

I’ve employed them, because at the beginning, so 5 years ago, 4 and a half/5 years, 5 years ago I was basically looking after my mum but she was living on her own; so I was going up there most days, well I mean initially sort of every other day and then it became obvious that I needed to go up and; and we were, we’d hit some crisis points as well where neighbours were ringing and saying, “Your mother’s wandering outside she,” you know, the police were called. Actually I think that was probably the turning point, possibly when I’d gone on holiday and a neighbour called, or when the police rang and said, “Your mother is, been banging on the window and shouting for help and some children have called the police and,” the police had come and I sort of realised then, it was a, sort of two or three occurrences and I thought this isn’t sustainable for her to live on her own. I then looked at care homes, I looked at a lot of care homes; I wasn’t really that comfortable with any of them particularly but that’s a whole other subject and also at the same time I was taking her to some things, I was taking her to the Alzheimer’s Society singing for the brain and I also, and so I’d got to know quite a community of people who were looking after their loved ones, spouses or sons and daughters looking after parents, and I became quite hooked in to what was going on locally and so I started taking her to lots of different places memory lane cafés; and there’s one particular café that I got, I’m still involved with in terms of volunteering, she goes there once a week and it was there I met another, I met a carer who was looking after an elderly gentleman with dementia and I was talking to her and she was very friendly and I just said, “ I don’t suppose you know anyone because we’re really at the stage now where my mum is either going to go into a care home or I need to get live-in care for her.” And she said, “Well let me think about it, I’ll come back to you.” And she did come back to me and sure enough she brought me an amazing woman who is still looking after my mum and that was 4, probably about, over 4 years ago.

Well, for example, when you’re diagnosed you’re discharged, you’re discharged from the Health Service as if you’ve been cured, and actually your needs change, they get more, well in some ways they get less complex, so but then in some ways they get more complex, and it’s just like you’re sort of managing each crisis as it goes really, but you are discharged. If there’s no follow-up, if there’s no, if you’re not in a particular crisis where you need advice from the psychiatrist; this is my experience, we ended up getting referred back to the psychiatrist, the elderly psychiatrist through the GP; the GP was kind of a bit flummoxed by my mum and what was going on and maybe she needed review, she needed a review so you get referred back into the NHS, then you get discharged again. So you never ever have contact really with the hospital again and that’s, I’m not saying I want the hospital, but also in terms of the GP you don’t, you don’t really have any contact with, I have no contact, you see lots of people have lots of contact with the GP, I have no contact with the GP, although that’s because I’ve got fantastic care that I haven’t had contact with the GP. So she’s never had a urinary tract infection because of her care, so but they monitor, the care, two of the, the carer’s boyfriend and mum’s carer, or the weekend carer, I think they’re both nurses, certainly the boyfriend is, they take her blood pressure, her sugar level, her sugar, so I have no call for Health Service.

Yeah, there were incidents with neighbours calling – I mean the neighbours were fantastic – but, you know, her wandering or shouting or and just things like, you know, there were things like she would be telling me that Hillary Clinton had been in the room or, no, Geor-, who was it? David Cameron had been there yeah, Hillary Clinton, because she’d been visiting at the time in the UK, and she was, that the Pope had been there and you just thought it’s kind of all falling apart a bit really for her, she needs a lot more support, a lot more support. So we just came to a crunch, it all came to a head quite, within quite a few weeks I would say from, a couple of months at most, the August to the October probably and then I think I brought her down, then I thought oh I’ll bring her down here and see how she gets on down here.

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.

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.

OK she has live-in care and she’s had that for four years and as it stands at the moment she has one lady there Monday to Friday and then another lady Friday to Monday, doing the week, covering the weekend. these are the same ladies she’s always had and I’m employing them privately and they, she’s self-funding so that means we’re paying for her care, and the only assistance we get really, financially, is attendance allowance, which she’s on the higher rate, because she has savings over, £23,000 I think is the threshold and we get the council tax free as well which she’s entitled to and that’s all we get at the moment in terms of funding for her care and that’s, as I say, that’s been going on for four; she’s had, basically, live-in care; at the beginning we sort of had, she was coming down here for the week, for, or for a night on the Saturday to give the carers a little bit of rest, because we only had one carer at that stage and, but as her needs have grown we’ve realised it’s better to keep her in her own home and; she was getting very disorientated here. So that’s when we decided to sort of add another carer in for the week, for the weekend to give the main carer a kind of longer break.

I didn’t think the care was good enough in the care homes that I saw; I did see quite a few and I also, you know, I just didn’t think that it would be right for her, that model would be right for her. But saying that, the decision to actually bring care into her home is partly based on the fact that I live near her, I’m around, I’m available if things go wrong I’m at the end of the phone and so if I had a job where I had to work five days a week in an office or wherever, out on the road, I just don’t, I think I, she would have gone into, I, I’d have just had to say, she needs to go into a care home, I can’t manage this. To be on, because you’re on-call, that’s the thing, you’re on-call; at the beginning it, I was very on-call.

I think the way we started off was, so I was going up there probably every day, I would have thought, and I was going, take, well, I’d be taking her to clubs as well, I was spending a lot of time with her. Taking her to this club, that club, and then I just thought I needed to give myself a little bit of space so I got what you would call homecare in, I think, you know – the people that come in, and they made a hot meal for her in the middle of the day. So I got an agency to bring in a carer for an hour and a half a day and they were just, they would make a hot meal for her, or heat up some sort of ready meal, and then they’d make a sandwich for her in the evening.