Yeah, well at first I, it, I was just sort of, you know, picking up the, you know, the shopping and helping round the house and all that sort of thing, but, and taking them out and doing nice things with them as well, which, you know, I wanted to do, sort of seeing family and taking them out for days out and that kind of thing, but then it was, you know it became very apparent that they were needing a lot more than, than just that. So then we employed, as a family my brother knew somebody who was interested in going into sort of caring, she’d not done any, she’d no qualifications but she, it was somebody she, he knew very well. So we took her on as a carer, employed her, and for a while that worked OK but then it, they were need, again, you know, you put things in place and for a little while everything seems to be going well and then something else happens and, you know, it’s apparent that they’re needing more help.

And eventually, although we were able to get a great-nephew who actually lodged with mum so she kept her independence, which we wanted to keep for her for as long as possible, and I lodged with her 2 days a week doing her washing, ironing, shopping, cleaning, washing her hair, all those sort of things, in the end it came to the decision that we brought carers in, but that did not work out. Carers would, would come in, you, you were paying for 15 minutes at a time so they’d do half an hour in the morning, half an hour at lunchtime and half an hour in the evening, but they were putting her to bed at 6 o’clock at night which in the summer’s not nice and quite scary as well. So she wasn’t good. So that literally lasted 4 months and we made the very hard decision that she needed to be cared for in a home.

So it got to a point really where; and, and of course I knew he wouldn’t want to do it so I sort of postponed it and postponed it, and then I thought no, this is, this, he’s got to come and live with us, and we can, we could accommodate him so it was not a problem. So basically we had the conversation and I said, “You know we’re increasingly worried about you and if you have an accident,” and we got him one of those [tuts] you know, things round your neck thing to, to press but obviously he was leaving it all over the place anyway and he wasn’t wearing it and, etc. So I said, you know, “It’s, we’re now worried because if you fall downstairs then what’s going to happen?” And of course his attitude was, “Well I’ll just die.” And I said, “No, that’s not going to happen, you could be in pain for days on end and nobody will know.” So anyway he said, I said, “And, you know, the house is now getting in such a state that it’s actually, you’re not safe anymore and we don’t think you’re safe and we think you’re going to be safer living with us.” And he said, “OK.” And I thought oh right, OK. So he came to live with us probably nearly 2 years before we ended up in sort of [name of Care home]. So we sold the, we had to sell the property anyway because we weren’t prepared to do anything with it or look after it, so we sold the property, he moved in with us and everything was fine up to sort of, I suppose four or five months before he died.

She came down to us then in I think it probably, it was early 2017, it might have been March, it may even have been before that, might, might even have been sort of like February time because she came down came with us. The annexe wasn’t done then so she lived with us, she lived in our house up until, it was about 6 months; so that was, I think it was sort of like October time that she actually got in there.

So what did you actually have done to create the annexe then?

We had a double garage, we had a double garage and so we had to get, we had to get an architect, we had to get to do the drawings about how we could do it, we had to get new, new drainage or sewerage put in, electric and gas and all that, so that’s why it took the time really, and water. And so her, basically she’s got a kitchenette, like a kitchenette-sitting room, kitchen, sort of like, sitting room-diner sort of thing. She’s got her, she’s got a bathroom with a lift to get her in and out of the bath, and then she’s got a bed, a bedroom at the back: so it’s bedroom, bathroom, sitting room, kitchen-diner.

So she was on her own and next door, and she’d always known [name]. And she started off doing cleaning. She put a thing through the door saying, ‘Cleaner – £10 an hour’ and we thought, ‘oh, wonderful’.

And then she started cooking for him, and then she even used to rub all the emollient cream in him, for his skin, and everything. She was wonderful, and very honest, of course. So it was the perfect arrangement, really.

Yeah, she was invaluable, she really was, because we were in text contact and WhatsApp all the time really. Every day that she was there she would text me to say ‘Is everything alright?’ and maybe send me pictures of things that she didn’t think were quite right or whatever. And I used to be on the phone to the care agency probably every couple of days anyway, just checking things, or they would ring me when they thought there was a problem, which was good, which was great.

And then the problem came with hospital appointments; if I couldn’t get there then mum’s cleaner would take, [name of cleaner/companion] would take mum to her appointments at hospital, which was great, or eye appointments or doctors or whatever, because if we left it to mum to get a taxi or something there she wouldn’t go, and then she would forget that she had an appointment and quite often she’d say, “Well I don’t need it anyway.” So, which is quite normal, I think [laughs], in her position.

So at this stage, that’s when we started realising that we needed to get an external care agency in, because the main worry that’s triggered this off was medication. Because they were both on various – being in their mid-eighties – blood pressure medication and that sort of thing, and my mum was very convincing because she would say that, yes, she was taking her medication, she was giving my dad the medication, but when I visited, which at this stage was only once a week, I was finding tablets in… Even though I’d started putting the little packs that you can buy at the chemist where they’re in the days – they were still in there. So even though she was adamant that she had, because in her mind she had, they were not getting the medication. So we first started with a care agency for medication visits, which I think’s quite common that that’s the first thing; it was very brief, it was 15 minutes twice a day, they’d come in and make sure that they took, both took medication.

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.

I was getting a bit frantic at this point and whilst I was there I was chatting to the staff nurse at the hospital and she said, “Well you know she doesn’t have to go into a home.” And I said, “Well I’ve been told that she needs to.” And she said, “No, no, no, you can have people come in, she’s quite OK to have people come in.” I said, “Are you sure?” She said, “Yeah, absolutely.” So I asked the social worker this and the social worker sort of said, “Well, well, you know, yeah.” And I got, I mean I was in a bit of a state at that point because I was so worried about my mum, so I wasn’t thinking clearly, but in hindsight now I was thinking that’s actually pretty terrible that they sort of pushed me towards putting her in a home without giving me the alternatives.

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.

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 was very impressed. They came, the manager came to the house. She must have spent a good couple of hours doing a really thorough risk assessment. Got to get a good perception of what my mum was looking for in terms of need, and then very, very quickly, came up with two carers who then came to the house to meet mum. So that it wasn’t a stranger arriving for the night. Because it’s so important when you, you’re letting somebody into your house, and particularly when they’re sleeping overnight. You’ve got to feel absolutely confident that you’ve covered all the bases in terms of security and support and that your, you know, your relative’s going to get the kind of care they’re looking for. And they’ve been wonderful.

What’s your mum’s relationship like with them, would you say?

Marvellous, really [laughs]. Yes [laughs]. They can do little wrong [laughs]. Yeah they’re very good, you know, they’ll, they arrive at 10 and leave at 7. It used to be 8, and 8 was better, but they’ve cut back an hour, but that was good, so they’ll often walk the dogs, take them for a last-minute walk. They’ll make sure she’s had her tablets and make sure everything’s locked up properly. Mum gets on really well with them, and its company for her, even at the end of the day. It’s company when she hasn’t seen anybody perhaps through the day.

Did you ever have to have anyone come in overnight or did she manage, or how did that go?

No never, because my mother had she was lucky in a way we had, there was, there was two, there are two things; one early on very early on she had a fall, this is before she had carers, she had a fall in the garden and she couldn’t get to the phone because she’s got bad knees and she crawled into the house and rang me [laughs] and she said, “Oh I’d better get something.” So we got in, what, you put a thing round your neck and you press it; it’s called Care Link in [name of city], different names everywhere. She said, “I’d better get something in case I fall over in the garden.” So she had this pendant round her before her dementia got really bad, so she was used to having that and she used to ring them a lot, she used to press the Care Link and sometimes, and she’d, they used to say to me, they’d chat to her, they, “Oh yes, sometimes she used to ring and say good night and chat, and whatever.” So that kept her without having carers for a long time.

And I wasn’t sure quite whether; funnily enough, I mean I did at the time read, what’s his name? John Suchet’s story about supporting his wife who had dementia and he actually went down that route of having somebody, you know, and you really had to find the right person and obviously the other thing I was very conscious of was the fact that we’ve only got two bedrooms here so how was that going to work with somebody living here because in order for me to get some respite I would need to not be sleeping in the same room as my husband, therefore I would go in there, so where would I put the; you know, it was actually practically quite difficult, yeah, yeah. So I didn’t actively, I was aware of it but didn’t actively consider it, I guess, yeah.

When he was in the flat near where I live, which is, it was a sheltered flat; so he had to buy his flat there and they have a warden who just checks that everyone’s all right, and there is a when he moved in there was a chef and they had a dining room, so, you know, they had film clubs and it, from what I could see it was a sort of, a place where retired professional people sort of went; there, there seemed to be quite a few retired teachers and doctors and, you know, people like that so that was where he was.

So then I got him to go and have a look round, and once he’d looked round and could see there were lots of people like him and that there was, you know, he didn’t have to worry about where his food came from and, he really liked it, and that, so that’s when he moved in.

Well we pay a monthly fee which, we buy our apartment or house or flat or whatever it is, we buy it, and then we pay a monthly fee, which I think is very reasonable, which covers twenty-four hour porterage twenty-four hour care availability, we have restaurant staff, we have maintenance, full-time maintenance staff, we have a gym, we have a swimming pool, we have a laundry, we have a hairdresser, we have a shop, we have a garden and grounds, and we have to pay for that, of course and that is wonderful; and what I like about it is I do have care, I have a supported package and staff who check on me on a regular basis, but we, this can change as my needs change, where if I’m ill for some reason, you know, I can get a lot more care and help if I need it, for a short time, but it’s the same people. And of course because the staff are here full-time rather than on the district it’s cheaper, in a sense, because they don’t have transport, they don’t have to travel between places, and we buy care in fifteen minute slots.

We talked about her moving to a sheltered apartment and in many ways, that would have been a really sensible thing to do and then maybe just having daily care popping in, to make sure she’s had her tablets and stuff like that and do some shopping. But she really wanted her dogs. And you really can’t find anywhere that’s really dog-friendly [laughs]. We tried. That was plan A.

And so your mother would have been happy with that?

I think so. I think because if she had people, if she’d had people round her overnight, that she could, knew she could call on, she would have probably been okay, and we could have just put in some supplementary day care. But the dogs were the issue, really.

But the dogs are playing a big part in her…

…mental wellbeing, actually – yes.

I made a referral; well I tried to make a referral to Social Services because I felt that if I had some respite care it would help, because it was hard going, you know, it was really quite difficult. And so but, you know, when you make a referral, I mean they go through, you, you speak to this person to start with, the first thing they ask you is, how much money have you got? I mean that’s one of the first questions, and then it’s sort of, well, oh well I suppose we might come and see you sometime sort of thing. So eventually two social workers came out to see us to do an assessment of John and they did, they did, they did an assessment and they decided that he would need nursing care, that he had that level of need so would need nursing care, and I just wanted some respite care really, that was all I wanted. so basically they, I mean they said, you know, we, we’d have to pay the full amount, which I knew and they just gave me a list of nursing homes and said, you know, “There you go you’ll have to just try and find somewhere.” So I contacted [Residential home A], which is a new nursing home in [City] somebody came out to see us and she did an assessment, this was a nurse, did an assessment, and then she said, “Well, you know, if you ring them up and see if you can get a date.” So I rang them up a couple of weeks later and they said, “Oh we don’t do respite care.” and it was, it was the same; I went to [Residential home B] as well and looked around there and then they said, “And we don’t do respite care because, you know, if we can take long-term people we, we don’t keep beds available.” So I felt nobody was actually offering any respite care at all so I gave up at that point trying to get respite care; and that would have helped a lot really, if I could have just had a week or a fortnight every now and then it would have made a difference to me certainly.

What happens is if you’re discharged out of hospital and you’re going to be living independently in your own home, then the hospital, they set into operation a re-enablement programme whereby your needs are assessed and then that, those needs are met for that 6 week period, and the purpose of that is to grade it down as it goes, as more independent you become the less care you receive; and it works really well and, in many cases, because people get back to living in their own home, they’ll have a carer coming in in the morning, one in the evening, one in the afternoon, whatever it might be; I think it was four times a day, which was far too much. He was really unhappy about it didn’t want it, so we kept reducing it and they wouldn’t sign him off until, so they, they were confident, and after the 6, they actually extended that period, because they thought he was so unstable, for another, I think they extended it for another month, I can’t remember now and the, and the budget holder has that, you know, they can do that, social workers have that option if they think they can eventually make that person independent and in dad’s case it did work.

I often say to people that the manager there was, without a shadow of a doubt, the, my salvation in a way, and interestingly she was the only person in the whole process whoever stuck her neck out and gave an opinion as opposed to being incredibly sort of neutral and whatever, you know. I think people are very risk averse and they don’t want to say, well if I were you I think you should do so-and so; and actually my experience of being a carer is you desperately want somebody to say, have you thought about doing such-and-such?

Anyway, she was very good. I remember getting to the point where I was obviously very tired and generally struggling and one day she said, “How are you?” And I said, “Hmm, yeah, OK, not too bad.” And we got into talking about support for Graham and I said, “Oh I think probably I can manage, you know, caring for him at home for, I don’t know, the next six months or so.” So I had begun to recognise that there was a point coming up when I was going to have to think about other ways of supporting him. And she looked at me and she said, “Do you think so, Rosemary? Do you think so, six months, really? You might, couple of months maybe but really I think the time has come when you should be thinking about other things.” And although it took me aback actually, as I said, it was probably the single thing that helped me most of all. And at that point I thought right, maybe now is the time to try and find some respite care for Graham and so I started looking around and I eventually settled on a place locally in the town I live in which was relatively, well in fact very new, and was a, providing specialist dementia support. So Graham went there for a couple of weeks, initially, for respite care and seemed to settle pretty well and so I thought well let’s try extending this for another couple of weeks and so eventually he was there for a month, and then at the end of the month I took a really, really difficult decision, probably without any doubt the most difficult decision I’ve ever taken in my life that really that was probably the place where he was best served and so he stayed there then.

While they were there, my mum’s still, there I wasn’t, you know, they certainly, they as far as I was aware they never had another UTI, well my mum hasn’t; my dad, just over the last few months of his life he did seem to have some problems but the nursing staff, you know, they did manage it and he was comfortable sort of to the end. But yeah, I do think that obviously having that care there and the nursing staff, their experience made them a lot more comfortable probably and, yeah, were able to sort of look after them and give them what they needed to sort of, you know; I suppose they need somebody, they needed somebody there the whole time to make sure they were drinking and they were, you know, I mean my mum had been on a fluid chart and all that kind of thing. So yeah, they needed that sort of expertise and support, definitely, which they got there, and which we didn’t, we couldn’t provide in quite the same way, I don’t think, at home; well it got to that stage anyway.

Yes, it, the good thing about it is the fact that you’re being regularly checked and they do say, Oh because I thought I’d gained weight but they said, you’ve actually lost weight the last time we saw yo. So that was all very positive and they do get onto me for being heavier when I was really heavier and that came down and it’s still got to come down further. So it’s quite good being, having tabs kept on you because you don’t like to, the doctors are busy enough and you wouldn’t go and see your GP for a chat and just a general health thing. While if you’re on the study, the- you can have a chat to them about it more generally, so there’s beneficial. I would say that would be the main benefit if it’s a health-related study, then you can have a chat about general things, about general health things that you could say, Would this possibly affect the study because you can discuss it then and because you’re seeing them because I’m seen regularly. You know, it’ll be, it’s usually every three or four months. Either it’s a telephone call just to find out I’m fine and all the rest of it and how are things going etc, etc because they’re concerned over my general health and what’s happened to that.