I, so I suppose if I’d gone through, if I’d gone, you can go through the council route, so you can go through the route where they sort everything out for you, but you’ve got no control over it. So ironically, because my mum had got enough money I had more control over about what care she had, whereas if it was the other way round, if she hadn’t got her own money then you would have to, you’d have your 15-minute calls. Because that happened to my dad’s, that happened to [husband]’s aunt; she had carers coming in for like 5, 10 minutes just to do things. So in a way with having to pay for your, because there’s a positive side having to pay for your own care in the sense that you get to choose, you get to say what’s happening and you’re more involved with it, whereas if you’re having to go through the council way it’s what they decide.

I looked into a, a company who provides care for people in their houses but after a bit of research; the key thing I think is to try and get someone that [a] you know and trust and [b] that they, that could be constant, so you don’t want any chopping and changing. So the lady I found was a, I know that she only lives in [name of town] and it’s very easy for her to come here and she doesn’t need to work full-time and so that, and she was well qualified. So in a sense I was lucky in being able to do that.

So I made the decision, no, I’m going to get more care to give me some breaks; so that’s where the evenings came in really so I can pay for, I can pay for evenings and I can pay, you know, if I need a break, if we want, if we want to go away for a weekend [Name of carer] will, I can pay….I mean, bless her, she’s £10 an hour compared to the [sighs] care in the mornings which is £22 I think, £22 something an hour.

Because you’re paying an agency fee as well there aren’t you?

You, yeah, but I need that. Because of work I can’t, and I, if I’m gone in the mornings, I could be in [City] you know, by eight o’clock sometimes so it, I can’t get back quick enough for her, so I, and I need the stability of somebody turning up every single day in the morning. If [Name of carer]’s got an issue I can sort something, by lunchtime I can sort something else out but I can’t in the mornings so that’s why we need that. And, yeah, it’s a compromise because I would rather have a single person or two doing it but I have to go this is the best route for the mornings.

Yeah. The carers, well I suppose I was slightly advantaged because as an ex-nurse, I was a senior nurse and I went and spoke to the staff and the social workers that were on, working on the care of the elderly wards at the hospital I was working in and I said, explained the situation and said, you know, “This is a minefield, where do I start?” And they told me about, I mean I knew about it, but they said, “The first thing to do is to go to the CQC website and, and find carers who will you know, companies that provide carers into the, into private homes.” So I did that and we found several companies and it was just a ca, question of ringing them up first of all explaining what sort of care I needed, first of all for mum and then with dad, and it was slightly different because mum was incontinent and needed a lot more care and dad, I guess, when dad was alive, because the carers were going in and looking after mum when dad was alive and so they needed sort of full support as a couple and then; so yeah, so I rang up the companies and you know, asked them what availability they had, what their prices were and I think we just looked at the CQC website, saw which ones had the best reviews and to start with.

Well yeah, she, we took, my brother has a business so he took one of the carers on his, you know, he sort of set up the payroll for her, the other one was self-employed so she just invoiced us every month for how many hours she’d done; that’s how it worked, yeah.

That makes sense, yes, thank you. That was, so that was…

Yeah, but the main carer that we had, we, yeah, she was on the payroll and we paid her pension and all the rest of it, yeah.

Oh, so fortunately your brother had experience or, you know, he…?

Oh yes, I wouldn’t, I wouldn’t have had a clue about that side of things [laughs] no. Fortunately, yeah, that’s the thing, he managed to sort all of that so that was a great help, yeah.

I mean I work for [name] County Council so I did know of some care agencies who worked in the area and we rang round a few, as I knew that my dad would be a self-funder and we spoke to a care agency who we thought we wanted to, to give a go. They came out to do an initial assessment of my mum’s needs, but myself and my dad had a lot of input into that so that they knew that it wasn’t, you know, a hands-on job, it was more prompting and encouragement, and it is only early stages at the minute so it’s just once a week for half an hour, sorry, once a day for half an hour just to help my mum to have a wash in the morning the things that she was struggling to do from the say-so of my dad really. So it’s, it was quite easy to get in place because they had capacity to do that one call a day and it’s more difficult to get a care package when it’s with more carers and there’s a lot of moving and handling involved. But my mum’s fully able to mobilise well she’s a bit slow with her walking now but inside the house she’s absolutely fine.

At first the time of the morning call wasn’t really ideal; they were struggling to get an early morning call. My mum’s always been an early riser; so they wanted to come at about 9 o’clock, which really was quite late and sounds ideal for a lot of people but for my mum who usually wakes up at 6 o’clock that was really, really quite late for my mum. So for a few months I’d say we did have to bear with them while they got capacity to be able to come a bit earlier and now they are able to come about half past 7/8 o’clock which is better for my mum because otherwise she’ll just get dressed and then she won’t want to get undressed again to have a wash or a shower. So it’s confusing to her, the time and things like that. So that took a bit of negotiation.

They were very good; there would be, there’s a coordinator who is obviously in the offices and they, they coordinate all their carers and communicate and if a carer has been delayed then we usually, I mean occasionally we didn’t, but we would usually get a phone call from the office coordinator to say, you know, so-and-so’s going to be running, you know, a quarter of an hour/20 minutes late so, you know, tell your mum, tell your dad not to worry, they are on their way yeah. So that was yeah, that was good. But, you know, it boil, everything, everything in the process boils down to good communication; I think you know, so long as people communicate on a two-way basis it’s, it works but you can’t, you have to keep your expectations real as well, you know, they’ve, they, you book them for half an hour or an hour and they’ve got huge workloads and you have to understand that but clearly you obviously want your money’s worth as well, and you’ve got to make sure that they work efficiently when they’re there.

So I pay [county] County Council, [county] County Council pay them. I really like… I like the fact that they’re that intermediary for me. So I con-, at the time I thought it was happening, so, and then we found it definitely was happening, I dealt, I dealt with it and I was quite happy to deal with it directly with the company, and generally when I’ve got any concerns they do act upon it so that’s quite good. But I have to say I’d rather not deal with it [laughs] to be honest I would rather, I would rather somebody else deal with it. Now I could have asked [county] County Council to deal with it and I’m sure they would have and I did, I kept a log of what was happening and I sent that to [county] County Council and they didn’t question me at all, they just said, “No, that’s fine.” And reimbursed the payment, which was, which was good, you know, there was no argy-bargy, there was no going to them and back to me, they just like went, “No.” And repaid the amount, which was good.

And we’ve had a couple more instances where things weren’t right, so I talked to the social worker and we actually got, managed to get a new company in. Because I’d just lost confidence in the other one [sighs] and also their paperwork and the way that they were running things, it wasn’t, it wasn’t up-to-date; and their inexperienced carers, because the, the turnover with that company was so huge, that particular company. And then the new one we got in seemed to be much better and brought in this lovely lady who just loved her job, which was great, and she learnt to read mum and sort, you know dad had moved into homes by this stage so this was just looking after mum; and she was forgetting that she needed to have showers and things most days and saying she’d had one and she clearly hadn’t. So this new lady carer worked with her really closely and managed to get her into the shower, into the bath just a way of doing it, rather than saying “would you like a shower?” and her saying “no” [laughs] to, “I’ve run you a bath, let’s, shall we get in now or do you want your breakfast first?” That sort of thing; so it really worked. And it, to me it’s common sense but to some it doesn’t seem to be [laughs] so. And that is one of the most exhausting things, I think, and I think whoever, you know, that would be any advice that I would say is be strong, try and be strong with the carers, try and be strong and make sure that the care plan is, is up-to-date and it’s imperative really, imperative.

And so over the next, I suppose, couple of years I increasingly needed and bought in [laughs] care for him; I don’t mean in our own home but a variety, a sort of patchwork quilt really of, of support which enabled me to continue to have a bit of a life outside the home and also importantly for him, gave him other stimulus and it was sort of support that he needed from people who understood. So we did use the services of a couple of day centres locally, which had set themselves up in the guise of social clubs; so they weren’t overtly what perhaps we’ve all mistakenly associated [laughs] day centres with being, you know, basket-weaving and whatever [laughter] which of course they’re not but nonetheless. Also I, I bought in the help or somebody who’d I’d known for a number of years and who’d set up her own business offering companionship to people with dementia. So she would come along and pick him up and they’d go off and do something that he enjoyed doing and for an hour, for half a day or so, usually involved eating cake somewhere along the line [laughs]. But he used to like that very much and of course it was one-to-one support and attention and so on; and so that continued, reasonably successfully, for I suppose a couple of years.

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.

What else? Is there anything, anything else? I don’t think, well, but I mean, well the other things that we had to pay for, which again you don’t realise are, you know, obviously chiropodists because feet, feet need a lot of looking after; so although you’re paying for carers there are certain things that they won’t, you know, can’t do, not qualified to do. So, you know, you’ve got chiropodists coming in you know, hairdresser for the ladies, which is obviously important for them to maintain their appearance, that’s important and then, oh food deliveries, so, you know, the companies that deliver frozen foods so that was extra and then we also had a cleaner for my parents as well. So all those extra on-costs it, it all adds up, all adds up.