Tortuous, yes [laughing] and it creeps up on you because, you know, you’re, because it never just happens overnight and you cope, and you adapt, and you understand and you understand their personal quirks and what’s important for them, so a lot of the potential issues can be kind of just moved through gracefully. But then, there comes a point in time when you do realise that something has to be done and it’s much better if there’s plans in place well before you get to that stage.

And the thing is you don’t… The first time it happens, you don’t realise what’s happening, it suddenly twigs that the person who used to be able to look after themselves can’t any more. And it’s not just that they’re slowing down, there’s something cognitively wrong. And it’s not until you realise that, that you start doing things. And it’s, because it’s all little bit, by little bit, by little bit and it only gradually gets worse. It would be awful if somebody just had a really bad accident and you had to look after them from then, because then you… But then again, I suppose, if that happened, you’d be in hospital and the hospital would guide you, one would hope [laughs]. Maybe not. Maybe I’m being naïve. But anyway, because all this happened gradually with my mother and my father-in-law, and now with my father, you just do things bit, by bit, by bit.

You know, certainly the amount has increased and I don’t think you can underestimate… Well carers, carers often underestimate the impact of the care that they’re giving, and the toll that it takes on themselves and you get to a point where you, well certainly I felt like it, well it got to a point where I thought actually I’m doing all this, it’s taking its toll on me but who, why don’t I get that extra care in, you know, like for [name of carer] to come in of an evening and spend evenings for, with my mum, etcetera, but there’s a point you have to reach before you get to that; there’s a point where you do all these things and then, and then there’s points like, well, you know, the money’s sitting there, let’s give her that, that’s hers, you know. But that’s the rub, isn’t it, not everyone will be in that position, not everyone will feel like that and, like I said, my motivation for doing that might be tinged with some experiences with brother and sister, maybe, maybe not, who knows, but it was a battle getting to that point with yourself, you know, because you think you need to do it all yourself and actually you don’t. But I think that, that’s the thing; if you, that’s, that’s the battle with care; it’s not necessarily always about money it’s about I have to provide that care.

The reason why I had to get carers in was because I used to go over a lot, and it was in 2012, that’s right, because I went to, I was a games maker and I was down in London, so I was going down to London…

For the Olympics?

For the Olympics, as a game-, and I was stopping in London for 2 weeks, and I said to [husband], I said, so he said to me, “Well what are you going to do about your mum when you’re, when you’re down in London for 2 weeks? I’m not going to go and do what you do.” [Laughs]. “Oh I never thought of that.” So that’s when, that sort of was another trigger for the, you know, as well as she was struggling and she needed it. So she really had no choice.

I’d just retired, and I’d always promised myself a cruise to Iceland, and so she knew, you know, this, I talked about this for years, she knew all about it, but then I got an invitation to go away and see my sister and she said, “I’m not happy being on my own for the whole month of July,” which was when it was going to happen. So she said, “What should I, what should I do?” I said, “Well, why don’t you try going into a local home?” – she knew somebody in a local home – “And use it like a hotel. Have some respite, see how you feel. It’ll be very useful for the future.” So it was never done kind of permanently except when I came back, she didn’t want to leave, so [laughing].

It was, if you think about it that was a blessing in disguise because if we hadn’t had that, you know, I booked the tickets about 15 months beforehand, I had paid the money, I was going, and she quite understood that. And so, and also the fact that we were able to fit it into a kind of temporary scenario, go in and test it, see what it’s like, then in the future… You know, I think that’s a very gentle way into it and it gives you a chance to say – I mean, I went to see her, and she was just part of the community, you know, and she loved it. And of course if there is a sense of, certain sense of social isolation, when the person with Alzheimer’s or whichever, you know, care scenario they’re in, if there is a social isolation, there can be something incredibly positive about, you know, going into some kind of care situation.

We moved her into the home on May the 21st and prior to that, that Christmas I’d actually taken her away with me for Christmas, and you just notice that the level of support that she needed was permanent, and hence the reason for the carers. But we just realised that actually the level of time that the carers were in there was insufficient to protect her and to keep her company and thus we took the decision, collectively as a family, that that would be the right thing to do. And my brother and I sat down with mum and explained to her that we felt that she could no longer stay independent and that we needed to move her into a home.

I mean I had sort of, as it were, drawn red lines or come up with red lines in my own mind about things that I needed to bear in mind as possible break points, breaking points, if you like, and I always said that if Graham ever became consistently physically aggressive that would be something I would need to deal with, if we had fairly frequent sleeplessness, or disturbed sleep, and if he became doubly incontinent; those were, any one of those or in combination were going to be break points for me. And I remember at the, about, sort of about the same time being asked to write an article for the local carers’ organisation and I called it, you know, ‘Where is the end of my tether and will I know when I’ve got there?’ and I do think that in this whole caring process you do need somebody, somebody, some people to be able to stand outside the situation a bit and say, well actually have you not got to that point, you know, you are coping with incontinence and you are having repeat sleeplessness. Graham was never aggressive in any way sometimes became very frustrated because he had lost his ability to talk properly, so he sometimes became frustrated with that but never aggressive so we didn’t have that but we did have the other two things; and I think all of that was beginning to have an effect, because when you’re caring for somebody, I’ve found, you live very much in the moment. You’ve got your day, you’re coping with the day, and if today’s a bad day tomorrow may be a better day and so you just, you know, you [laughs] people say, don’t they, you live your life forwards and you understand it backwards, and I can now see the backwards bit because I can see how things were stringing themselves together into a history, if you like, but at the time you’re not aware of that.

And I would say in the last year the warden used to say to me that my dad’s dementia was getting really quite bad and that we ought to be thinking about what was his next, what was his next stage, because it; we had carers going in to see him 3 times a week sort of in the last 6 months that he was there because he, a couple of times I, I went to see, I mean he, I used to see him every day, he lived, when he was there he lived about 10 minutes’ walk from where I live so I’d go and see him every day, and a couple of times, you know, I’d find him on the floor and he wasn’t sure what had happened. But he hadn’t, he hadn’t really badly injured himself and but we were aware that we were, we would have to think about what was going to happen next, and when he fell and broke his hip that kind of forced our hand that we had to do it right now.

So we tried to tweak the care plans but then it was still pretty difficult; if dad was refusing to take his tablets then he refused to take his tablets, so and then we thought’ well we’ll try and get somebody in a bit earlier, before he gets out of bed, to give him some tablets so he sort of relaxes a little bit, hopefully, before his breakfast’, then and then off to the day centre. But he was so-, he quite-, he really enjoyed the day centre and he was trying to get out before he was ready [laughs] so the carer was there giving him his breakfast but then trying to get him showered and dressed dad wanted to get out the house; and I was there one time and he was trying to get out before he was dressed, trying to get out the door, and then the front door was locked and he was trying to get out by the back door and the carer, of course, then had to go onto the next, his next client, so that was really hard; and of course mum was left with that, when I wasn’t there mum was left with all that. So that was really hard; so it came to it that we had to look for somewhere for dad to go and of course he didn’t want that at all because he just wanted to be at home.

Again I suppose it, we didn’t know whether or not at that point that dad was going to end, you know, go in as well. But it was, we’d, no, he did, we had to, my mum was at a point where she was, we were going to have to sort of get a hoist for her and she couldn’t have a stair lift because she was too; we, I mean we looked at should we put a lift in the house and all that kind of thing, because, you know, obviously deep down we just wanted them to be at home and stay at home. My mum had been a district nurse and it was really, you know, and looked after people, and I wanted to do the same for her but it just became [laughs] you know, so difficult.

No, no, again the only adaptation we needed would have been a Stannah stair lift and we couldn’t put that in, it was out of the question. So again we sort of, we thought as well that actually him going up, because he’s not going out anymore him climbing up and down the stairs it’s actually doing him a world of good because that is the only exercise that he’s got during the whole day, so although it’s inconvenient he can still do it, and as long as he can still do it then, you know, well he can live here. But it was after the stint in hospital that sort of changed everything that we then thought I don’t, you know, we don’t, we’re not sure he can manage the stairs anymore and him falling down the stairs would be a total disaster.

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.

[Laughs] well we looked round about where we used to live, because that’s where our friends were, but there was no sufficiently independent living, because it seems, a lot of care homes seem to think the minute you have some form of disability you’re incapable, and if you disable people they get, I think they progress in their disability more rapidly. I think we need to be enabled to live with our disability, whatever that is. People need to do things with us, not for us, and so many places you had all your possibilities of, of living independently taken away from you; you have all your laundry done for you; I mean you can have your laundry done here if you want to, or your ironing done or have your beds made if you want, but you don’t have to, or you can change, you can have it sometimes if you’re not well, it’s wonderful.

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.

Oh and the other thing is document everything; we documented everything, you know, any phone calls that we had, concerns, any health issues, right back to when they were both still living at home so that you can so that you’ve got, you can paint a picture, but, an accurate picture of, of the situation that they’re in the, the pressures that you’re under. That wasn’t very concise, but [laughter].

How much did that help you, that documenting, when you came to complete things like attendance allowance forms?

Oh it was brilliant because they want examples of, of everything, you know, examples of what happens in the middle of the night examples of why mobility is bad, examples of what care is required, examples they want to know, you know, medical history, what tablets, your relative is on I mean they want to know everything about, you know, what utensils, what devices you’ve got in the home, whether it’s a walking aid, a rollator, whether they have a commode by the bed, how many times they get out at night incontinence issues, you know, they want to know everything and in fact the more you can put down the more successful you will be in your application.