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Sally

Age at interview: 66
Brief Outline:

Sally’s parents self-funded care from age 93

Sally’s mum was living with dementia and her father, who was in his nineties, was her main carer. They paid for some care at home but then decided to find a care home for her mum. Later, her father went to live in the same care home.

Background:

Sally, aged 66, is a retired senior nurse. She is married with two adult children. Being a nurse, she had some understanding of the social care system, nevertheless, she was surprised how challenging it was to arrange and manage care for her parents. Interviewed online due to 2020 Covid 19 restrictions.

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Sally’s parents started married life with nothing, they worked hard and bought a house. Her mum was always very careful with money, she saved and made small investments when she could. Sally’s parents would have been devastated if they had known all their savings were spent on care. Sally’s view is that their money was well spent as they were so well looked after in their later years living in the care home.

Sally’s mum was diagnosed with vascular dementia and her dad was living with Alzheimer’s disease. Sally found it mentally and physically exhausting looking after her parents while working full time as a senior nurse. Sally’s employer was understanding a of her care responsibilities and allowed her to work flexibly at times. Sally asked colleagues for advice because she did not know where to start to find care workers to help her mum and dad. She found the CQC website helpful and that is where she found a list of care agencies. Sally also told us about the patient liaison service (PALS) in hospitals which is a free resource for patients and their families providing information about care and health conditions.

For a few years, Sally’s dad managed at home caring for his wife with the support of Sally and paid care workers. Sally says that paying for care at home is expensive. As well as the cost of care workers and the usual household expenses, they paid a cleaner and had a hairdresser and chiropodist visit regularly.

When her mum’s dementia deteriorated she moved to a care home where she lived for two and a half years. Sally spent a lot of time searching for the right care home. She checked online, talked to the staff when she went to look round and observed the daily routine and care. They were very pleased with the care her mum received so when her dad needed full time care he was happy to move to the same care home. Sally’s parents paid for care at home and residential care for almost ten years.

Interviewed online due to 2020 Covid 19 restrictions

 

Sally knew exactly how long the money would last for her parents’ care.

Sally knew exactly how long the money would last for her parents’ care.

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And then when you’re self-funding we [laughs] we had a spreadsheet and we had a financial, we forecasted all the outgoings, you know, absolutely everything right down to the chiropodist, the hairdresser, whatever, we plotted all the finances versus, you know, what the income was that we were plotting against, if you like, and so we knew how long the money was going to last notwithstanding the fact that obviously the care homes put their rent up every year regardless so you have to take that into account as well. But we did, we plotted, so we had a spreadsheet [laughs] and we got, you know, you had to be totally organised so that, you know, nothing would come up as a surprise really.

 

Sally kept a record of all care concerns and conversations with carers or health professionals.

Sally kept a record of all care concerns and conversations with carers or health professionals.

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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.

 

Sally used the CQC website to find a care provider.

Sally used the CQC website to find a care provider.

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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.

 

Sally was pleased with the record keeping by the care agency.

Sally was pleased with the record keeping by the care agency.

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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/twenty 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.

 

 

Sally describes some of the additional costs involved in managing care at home.

Sally describes some of the additional costs involved in managing care at home.

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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.

 

 

Sally says that good, two-way communication is key to getting the best care.

Sally says that good, two-way communication is key to getting the best care.

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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, 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/twenty 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.

And then not being afraid to challenge, if you like, the carers if you were concerned about something, or stipulating what your expectation was from them as well was very important, you know.

 

Sally decided to rent out her parents’ bungalow to pay towards care.

Sally decided to rent out her parents’ bungalow to pay towards care.

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Mum had always said that she [a] she never wanted to go into a care home and [b] she didn’t want anybody else looking at her finances; and that’s always stuck with me even when she became, you know, confused. But because, because we knew, obviously we worked out what the fees were for care at home and we worked out when they both went into care to the care home, when we, you know, we’d worked out how much the monthly fees were going to be, and then obviously the monthly fees, but of course we had got Attendance Allowance which would go towards them, and their pension would go towards it, so with those two added together that would, that was a contribution. And then when my father moved into care they had a bungalow and so we rented the bungalow out and used the rent from the bungalow to also to also put towards the fees. So with, with those contributions, the three contributions, so the pensions, Attendance Allowance and then with dad the rent from the bungalow, we worked out what the remainder was that we had to pay and so we knew from his, from their investments and their savings how many years we had actually got before we would have to think about selling the bungalow and so from that point of view we didn’t get, we didn’t need any help or any financial yeah, any financial advice at all. I mean we went, you know, we mentioned to our own financial advisor but it was just a sort of you know, is everything do you think what we’re doing is right, and they’d say, yeah, you’re absolutely spot on and that was it. But that’s probably because, especially my husband who is quite astute at all these sort of things and he was a huge help, but I do understand that if you are not aware of all the implications and the huge cost that there is and also we were fortunate in that we got the rent from the bungalow to go towards it as well so that was fine. And even though it sounds like, you know, financially it wasn’t, it wasn’t too bad we still worried like mad about what would happen if we had to sell the bungalow, you know.

 

Sally said her mum would be furious if she’d known all her money had been spent on care.

Sally said her mum would be furious if she’d known all her money had been spent on care.

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My mum will be turning in her grave now; she would be absolutely furious, she would be distraught beyond belief because they, she worked so hard to save. She worked, they started life, they got married in 1942, they were married for over seventy years, and they started life in a caravan with absolutely nothing and they worked so hard and I know that they would both be absolutely distraught beyond belief; I can’t put a strong, I can’t emphasise strongly enough how dreadful their reaction would be if they’d known, if they knew, and they never, they don’t, they never did know and it’s something I’ve just got to live with.

 

Although Sally was appointed sole attorney for her parents, she let her relatives know what she was doing.

Although Sally was appointed sole attorney for her parents, she let her relatives know what she was doing.

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And of course with my mum well with both of them actually I felt that it was only right to inform my mum’s sister and my dad’s nephew, who were the only surviving relatives, that, that’s what I was doing, just because I wanted transparency. Again, you know, again going, going back to the, you know elder abuse and, you know, misuse of finances I wanted, I just wanted it all to be clear and transparent, basically, and to make sure that somebody other than my husband and I knew what we were doing because it’s so easy to leave yourself open to criticism and suspicion, you know. So yeah, so that it was good, it was good to get the Power of Attorney done, definitely, yeah, and then, yes, with just solicitor and solicitor’s advice where we needed it and GP talking to my, to both my parents and saying, you know, you know, do you understand, you know; they’d both got enough capacity at that point to be able to agree to it.

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