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Rosemary

Age at interview: 65
Brief Outline:

Rosemary cared for her husband at home for a number of years before making the difficult decision that it was time for him to move to residential care. Rosemary shares insights into what constitutes good care and what to look for when selecting a care home.

Background:

Rosemary, age 65, retired from her role as a senior manager in local government to care for her husband, a former teacher and college principal. Her husband’s care costs were self-funded through his income from pensions and some investments.

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Following a series of transient ischemic attacks, Rosemary’s husband was diagnosed with mixed dementia (Alzheimer’s Disease and Vascular Dementia). Rosemary continued to work full-time for a few years with the help of family and friends and relying on strategies and memory aids to help her husband cope. When this was no longer sustainable, Rosemary took voluntary redundancy and cared for her husband with a ‘patchwork quilt’ of support through day centres, a paid companion and a local carers’ centre that organised trips and activities. Rosemary found that the medical route to diagnosis was easy compared to the haphazard approach to social care. She found that the health and social care systems did not work together and was further hampered by delays and mistakes in getting assessments for herself and her husband. She believes that the system is improving since she began this journey several years ago. Rosemary received Carer’s Allowance and her husband was awarded Attendance Allowance.

Rosemary found support in being with people who understood dementia but also felt frustrated that professionals with the most experience of social care seemed reluctant to step up and offer advice. However, a day-centre manager did broach the subject with Rosemary suggesting it was time to look for alternatives. With a mixture of exhaustion and guilt, Rosemary started the process of seeking a suitable care home for a few weeks’ respite. She then realised that this was the best option for her husband and, after discussion with her husband’s two sons, made this a permanent arrangement. The care home chosen was a newly built, specialist setting which could provide nursing care should the need arise.

This residential care was paid for largely through her husband’s income of pensions and investments. A financial adviser had been consulted over the years and had helped by forecasting realistic care costs and how these could be met with available income whilst preserving capital for the family. It was only when end of life care began that Rosemary was able to apply for Continuing Health Care (CHC). She had kept meticulous records of his care needs over the years and was awarded, after her husband’s death, three weeks’ funding.

Rosemary is now involved with several projects supporting people living with dementia and works part-time as an Expert by Experience for the Care Quality Commission.

 

Rosemary was working full time when her husband first needed care.

Rosemary was working full time when her husband first needed care.

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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.

 

Rosemary said it was not practical to have a carer staying at night.

Rosemary said it was not practical to have a carer staying at night.

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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.

 

A day centre manager prompted Rosemary to think about respite care for her husband.

A day centre manager prompted Rosemary to think about respite care for her husband.

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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.

 

Rosemary says that if care decisions are left to the last minute, options will be limited.

Rosemary says that if care decisions are left to the last minute, options will be limited.

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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.

 

Rosemary explains what prompted her to think about permanent residential care for her husband.

Rosemary explains what prompted her to think about permanent residential care for her husband.

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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.

 

Rosemary got information from various sources, including colleagues, online and a care home open day.

Rosemary got information from various sources, including colleagues, online and a care home open day.

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Well again I spoke to people that I knew, colleagues and people who had been through the process or who had got parents or partners or whatever in care. So I talked to people and got sort of recommendations or, oh don’t touch that place with a bargepole type thing, you know. But so I got that sort of anecdotal stuff. Again use, I used sort of my sort of professional links to talk to people who I knew provided support of this kind; things like the things you can find for yourself on the internet, the checklists of what to look for when you go into a care home, you know and, to be honest, they’re helpful, I’m sure, and they’re readily available and they do mention one or two things that you might not think of yourself, but pretty much what was on the list is common sense and I would; but it is useful to have somebody else saying, have, you know, just, just think about these things. So I sort of had that in the back of my mind and then I basically drew up a sort of list; I researched obviously CQC reports so I knew what, you know, other peo, what they had said about the homes, chucked some out and came up with a list of, I don’t know, a dozen, I suppose and I suppose I must have gone to about a dozen, sometimes on my own, sometimes with somebody else; if it went to a second visit or a third visit I would take somebody, a friend or my mother or somebody with another pair of eyes and I suppose I eventually drew up a shortlist of three or four and went in obviously, went several times to them. I spent a bit of time in each of them, I just sort of sat and; it’s, it’s amazing what you pick up by sitting in, you know, reception or a lounge or whatever and just watching what goes on. Ironically I wasn’t able to do that with the care home that Graham eventually moved into, because it was brand new and so the best that I could do would be to go and talk to the manager who’d been appointed with the nurse, because they provide nursing care, this particular care home. I went to an open days that they had, I visited it. So I did the best I could but what appealed to me was the fact that it was a uniquely specialist dementia care home and I thought well that was probably, I would hope, give, you know, the best quality of care that we could afford.

 

Rosemary says that personalisation and choice are central to good care.

Rosemary says that personalisation and choice are central to good care.

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But, as I say, I think it should be better than just physical care, it should be, “is this right for them, how can we make the quality of life as in, as the best it can be for this particular individual?” You know, it’s all those stuff that we hear about: personalised care planning, and it seems to me the system’s under so much pressure that that is what tends to go. So I would say to somebody, look out for them, ask questions about how you cater for each person to be an individual, how you make sure that, you know, your idea of an entertainment is not fifteen people sitting round in a room either asleep or sort of in a very, you know, desultory way hitting a balloon backwards and forwards, you know, and thinking that that’s an activity.

So perhaps have a look at, have, go in on an afternoon when they’re doing their activities? [Laughs].

Go in and not be; yeah that’s a very, that’s a very good point. Don’t just go in, walk round the rooms and the bathrooms and say, oh this looks nice and clean, oh they’re, nice cottage pie they’re having tonight, all of which are important, of course, but actually go in and spend time, you know, spend an afternoon there. Go back in the evening, go back at night, see what happens then; I would always say that to somebody, because the staffing is almost inevitably lower, with justification, but, you know go in and look at night. Go in at mealtimes, go in first thing in the morning when, you know, is everybody being made to get up at eight o’clock in the morning in, or by eight o’clock in order to fit in with the staff shifts, you know, or are people, if they say, actually no I think I’m going to have a duvet day today. Are they able to do that? They should be able to; that’s what personal preference is about. So I think you need to put quite a lot of time into it, yeah, and then ask about the systems and processes behind all of that that enables that to happen. and I do think gut instinct has quite a lot to do with it; I think there’s a practical checklist, there’s all those questions, there’s the scrutiny but I think, you know, trust your judgement, I would say and sniff [laughter] but actually, again, that is not, I don’t think in the pla-, from my experience, as much of an issue as people say it is; it can be but, you know, in general. But just how are people, how are the staff interacting with people, you know, is it with kindness, is it with individual attention and support you know, are people, I don’t mean that people are fashion plates but are they well-dressed, you know, appropriately dressed, do they look as if some care has been put into making sure that they’re wearing the things that they want to wear and, you know that there’s evidence of choice being provided, all of that stuff; and you can only do that by sitting and watching, yeah, I don’t think it’s something you go in and you go and see one place and you make a decision in half an hour, no.

 

Rosemary tried hard to be constructive when talking to care workers about her husband’s care.

Rosemary tried hard to be constructive when talking to care workers about her husband’s care.

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What was your interaction and sort of communication with the staff, the caring staff and perhaps the management of the residential...?

[Laughs] Probably more than it should have been. I remember my mother saying to me at one point, fairly early on in the process, “Rosemary, you are not the care home manager [laughs] stand back.” [Laughs]. Because, you know, that’s what I’d done, I’d managed things, you know, and I was used to making things happen and making things run efficiently and properly and whatever. And I had to be very tolerant at the outset because it was a new home, it was finding its feet, it was establishing its systems, and so that was fine. I’m sure there were times when they looked out of the window and thought oh God, here she is again. But I tried really, really hard not to be that sort of person and I would always make a point of complimenting them on the things that they did well, saying, you know, “Oh Graham’s had a really good day, thank you for.” You know, I really, really worked hard at that but I equally did say to them when I was not happy with the quality of care, not because, as I said earlier on, there was any question of abuse or cruelty or malevolence or something like that, in some regards, on some occasions, it just wasn’t good enough.

 

Rosemary’s financial adviser is not a later life specialist but he suggested planning ahead for care fees.

Rosemary’s financial adviser is not a later life specialist but he suggested planning ahead for care fees.

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It was if one or other of you needed either part-time or eventually full-time care this is how you could move things around in order to cover what we project are the likely costs; and it was pretty realistic in terms of the cost estimates that she was using and so on. So that was reassuring, so I didn’t immediately go into blind panic mode when I knew that Graham needed to have more care than he could get at home.

 

Rosemary’s assessments were carried out by a carers charity on behalf of Adult Social Care.

Rosemary’s assessments were carried out by a carers charity on behalf of Adult Social Care.

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Yes, I mean I knew that I was entitled to an assessment at the time it was Carers [County] who were, were providing that via, you know, it had been that was part of their, their sort of commissioned work from, from Social Services; so they used to do that. And I knew myself, from the outset, that we were not going to be entitled to anything by way of, you know, support really so. But yes, we did, both Graham and I had had assessments conducted by them and certainly in the early days I had a couple of non-means tested payments, which were meant to enable me to do something that I wanted to do to support me as a carer; so that was fine.

 

Rosemary suggested CHC funding to her husband’s care home.

Rosemary suggested CHC funding to her husband’s care home.

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He was deemed to be needing only residential care when he went in and there was a thing saying at some point he could need nursing care and almost immediately after he went in there was some form of assessment that they needed to do to; I think it was a question of it was sort of future proofing. So they were doing an assessment of the likelihood of the need for nursing care; I mean I have to say I didn’t quite understand exactly what they were doing. But there was no increase as his situation deteriorated, there was no increase in cost, an additional nursing care charge. So he received all the care that he needed until the very end when I asked about continuing healthcare funding and the care home said, “Ooh yes, yes, yes, I think perhaps, yeah, that, ooh, ooh, yeah, ooh, good point” you know.

 

Rosemary described the importance of using the right words in the CHC application.

Rosemary described the importance of using the right words in the CHC application.

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I’m not saying I’m special in any sort of way, but I understood the process, I understood the sort of language you needed to use and the evidence you needed to provide and, you know, and use this word rather than that word because that’s more powerful than that one, you know. So I sort of understood that, I knew how to present the case, I hope, reasonably persuasively, and the fact that I got it obviously showed that something worked. But, you know, it’s like applying for any of these things anywhere, whether it’s CHC funding, whether it’s a blue badge, whether it’s; it seems to me that the people who are approving what you’re applying for come with it with a built-in assumption that you’re trying to screw the system; that’s the starting point, you are out to get something you’re not entitled to [laughs] so you have got to prove that you are entitled to it rather than, OK, you’re in a really difficult situation, how can we see, how can we work together to see what you’re best entitled to have? And it might not be what you think, what you were applying for, but it might be something else instead.

 

Rosemary wanted someone like a community nurse to say when the right time was to apply for CHC funding.

Rosemary wanted someone like a community nurse to say when the right time was to apply for CHC funding.

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No, I don’t think they would have done, because I think that’s the flaw in the system about the lack about that sort of, that’s what I talked about earlier, about this navigator role and, yes, at a more advanced stage it would probably need to be somebody like the community dement, community dementia nurse or, you know, somebody more versed in the, in the particular intricacies of the system at that time. But that’s why you need somebody to be able to hand-hold and to say, ah this is the point at which you should be thinking about CHC funding applications, you know?

 

Rosemary described the activities at the local group her husband went to.

Rosemary described the activities at the local group her husband went to.

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There were various group activities you could join in there was a, an activity programme whereby they would come and collect Graham and they would, he would go with a group of people to, for example, the cinema or to a wildlife park or whatever for half a day and I think I had to make a small contribution towards transport costs but other than that, it was free; and that was something directly provided for him to enable me to have time away. So that was good. It didn’t help that he actually didn’t enjoy those things terribly much; so we were a bit limited in terms of what was going to work and what wasn’t, you know. He was an incredibly outgoing and sociable person and loved people, he would, you know, go off and, parties, he was the one who’d say, “Hello, I’m Graham.” And natter, natter, natter. But he wasn’t going to suddenly take on doing things that he’d never done before, you know?

 

The manager of the day centre her husband went to noticed Rosemary was worn out.

The manager of the day centre her husband went to noticed Rosemary was worn out.

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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.

 

Rosemary had difficult conversations with her stepsons over the cost of their father’s care home.

Rosemary had difficult conversations with her stepsons over the cost of their father’s care home.

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It did become difficult when, as I’ve referred earlier, his sons were very determined that perhaps he should go somewhere considerably more expensive and I, at that point, had to say, “Unless you’re prepared to contribute to those costs actually I’m afraid he can’t go there.” Which was difficult but, you know and they weren’t prepared to contribute financially so that sort of ended the debate really, mm.

 

Rosemary registered the LPA a few years after it was certified, but wished she had done it sooner.

Rosemary registered the LPA a few years after it was certified, but wished she had done it sooner.

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Oh we did that before, when Graham still had capacity after he’d been diagnosed we, I did it all myself, I downloaded all the paperwork and completed it all myself, I didn’t do it through a solicitor because I knew it was perfectly possible to do it yourself and we did; and I did both, lined the paperwork up for both, and at that stage, I’m not sure if you still have to do it, but you needed to go in to talk to somebody, and the most obvious person was the GP, and they had to sort of validate it, interview Graham make sure he wasn’t being coerced and all that sort of stuff. And I booked a, you know, a double appointment to do this with the GP and basically at the end of doing the financial one she’d run out of time, and so I said, “OK, fine, well we’ll come back.” And for whatever reason I didn’t get round to coming back. I also made the big mistake of not registering the LPA at the time that it was done and dusted, because I didn’t fully recognise that that was best practice. I thought well we don’t need it at the moment, Graham perfectly capable and competent, he’s, can manage his own financial affairs; I didn’t realise that he could still do that and have the LPA in place registered. So when I came to register it [a] a big period of time had gone by, which was a query, and [b] it emerged that the GP had not ticked the box that said she was a GP; so the Office of the Public Guardian got involved and said, ooh. Fortunately there was an outbreak of common sense and they realised that the GP, who they had managed to see was still a GP, albeit in Scotland by that time, they realised that she was a pukka GP and they could tick the box and it all happened. But otherwise we were going to have to go through a most tortuous process of having the Office of the Public Guardian come in and, you know, oh thank goodness it didn’t and at that point it was too late to do a welfare one because Graham had lost capacity, so yeah, mm, mm.

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