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Sarah

Age at interview: 55
Brief Outline:

Sarah’s parents self-funded care from age 81/83

Sarah looked after her parents at home herself with support from her brothers and then they gradually paid for more and more care. Eventually Sarah and her brothers made the difficult decision to move their mum and dad to a care home with nursing.

Background:

Sarah, aged 55, is married with three adult children. She is a teacher and decided to reduce her hours to work part-time so that she could devote more time to looking after her parents. Interviewed online due to 2020 Covid 19 restrictions.

More about me...

Having worked part-time as a teacher when her children were young, Sarah was enjoying teaching full-time and establishing her career with more responsibility at work. But she was spending more and more time caring for her parents who were both living with dementia. Full-time teaching with the constant worry of her parents’ needs was not manageable and Sarah made the decision to go part time. 

When Sarah first noticed her parents needed help, she started picking up shopping for them and helping round the house. It was also important to her to do nice things with them so Sarah would take them out for the day or visit family. Over time her parents needed more help and as her brothers lived some distance away the family arranged paid care workers at home. Sarah and her brothers felt it was important to have care workers who would be familiar to their parents so they decided to employ a care worker directly. This meant they had to organise payroll and pension contributions. As her parents’ care needs increased, they took on another care worker who was self-employed and someone to help in the house.

Sarah managed to care for her parents at home for almost two years. The care was paid for from her parents’ pension income and Attendance Allowance, but Sarah did as much as she could herself to keep costs down. Sarah feels that someone from the local council adult social care team should have been looking in on her parents to make sure they were getting the care they needed. She feels that self-funders are left on their own without any guidance on how to get the right care and what support they are entitled to, for example, Sarah only found out by chance that because of her parents’ diagnosis of dementia they no longer had to pay council tax.

When Sarah and her family were going on holiday they decided it would be best to arrange residential respite care for her parents. The family also paid their regular carer to go and visit her parents, for company and to check they were alright. This respite care was not satisfactory, the residential home could not cope with their challenging behaviour. The paid carer who visited had to wash and change Sarah’s mum. Sarah complained about the care they had received and took it to the Ombudsman. She said it was a battle but they received a partial refund of the fees they had paid for respite care.

Sarah’s parents continued to live at home but, after an admission to hospital when her mum had an infection and was refusing to walk or take medication, Sarah made the difficult decision for her mum to move to a care home with nursing. Sarah’s mum was eligible for NHS-funded nursing care (FNC), which contributed towards the cost of her care. A year later, Sarah’s mum was awarded NHS continuing healthcare, which paid the full cost of her nursing home fees. Sarah’s dad moved into the same care home with nursing just a month after her mum following an admission to hospital. He lived at the care home for almost two years and the cost was paid from his savings.

Sarah’s parents spent approximately £70,000 on care but they did not have to sell their house. The amount would have been much higher if continuing healthcare had not been paid for her mum. Sarah feels it is cruel that her parents have had to spend so much on care when they are living with Alzheimer’s disease. They had both worked hard and paid taxes all their lives.

This interview took place in 2020 during the global Covid 19 pandemic. It was recorded on a remote video call. Sarah’s parents died during the pandemic and visiting was restricted at the care home. Sarah was not able to be close to her parents and hold their hands at that time.

Interviewed online due to 2020 Covid 19 restrictions

 

Sarah cared for her parents but as their needs increased they also paid for help from care workers.

Sarah cared for her parents but as their needs increased they also paid for help from care workers.

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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.

 

 

Sarah thought the care home with nursing helped her parents stay out of hospital.

Sarah thought the care home with nursing helped her parents stay out of hospital.

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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.

 

Sarah wanted to help her parents stay at home but the level of care they needed became too difficult.

Sarah wanted to help her parents stay at home but the level of care they needed became too difficult.

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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.

 

Sarah employed one care worker for her parents as well as paying another who was self-employed.

Sarah employed one care worker for her parents as well as paying another who was self-employed.

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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.

 

Sarah complained to the local ombudsman about the standard of care and was awarded a part refund of fees.

Sarah complained to the local ombudsman about the standard of care and was awarded a part refund of fees.

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Oh I mean we were really clear before, before we went away, you know, when we went to speak to them about, you know, because, as I say, the one carer that we’d had left at this point because of my dad’s sort of inappropriateness [laughs] you know, sort of sexually, he was being a little bit strange with his, after, you know, with his, with the sort of delirium after his UTI and you know, and we’d, we’d not sort of hidden any of that and they said, oh no, they could, that would be OK, they would be fine, but they absolutely weren’t, and in fact we actually we did get refund from that care, from that residential home, eventually, after quite a battle on behalf of mum and dad.

And so just, just tell me about how you, how you go, went through the process of getting a refund from them?

We just, well obviously just complained; we complained about, you know the care and the state that we found mum in. We’d had, paid for one of our other carers to go in while we were on holiday just to visit them, you know, and keep an eye, and so that she’d reported back how she’d had to go in and change mum and things like that and yeah, just wasn’t good enough. So just, no, just complained to local ombudsman and went through a process and eventually they agreed that, yeah, the care had, had been lacking and so they had to refund some of the care, not the whole thing but they refunded some of it, mm.

 

Looking back, Sarah wished someone had been checking in to see if her parents were getting all the right allowances.

Looking back, Sarah wished someone had been checking in to see if her parents were getting all the right allowances.

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Yeah, I just, I just wish we’d had more guidance from somebody; I don’t know whether it should have been from the NHS or from Social Care about, you know, what we could do and where we could go and at what point we should apply for higher level atten, you know, there was nobody sort of checking in on how things were going and, as I say, was that my fault, did I, you know, should we have been asking for that or more or, you know, it would have been, but it would have been nice to, you know, somebody; they knew that my mum and dad both had Alzheimer’s and were living at home, and to have more support for us as a family going through this whole process would have, would have been, would have been good.

 

Sarah had to choose between full-time work and caring for her parents.

Sarah had to choose between full-time work and caring for her parents.

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I had a promotion at work so you know, a lot of responsibility at work as well and with the strain of, of, you know, obviously of things becoming a lot more apparent that things weren’t right with mum and dad it was just too much to cope with and I was you know, sort of struggling, I was really stressed, stress levels were so high. So I actually went and spoke to the head at that time just to say, you know, “I just, you know, I’m finding it all really difficult to sort of be there for mum and dad and, and sort of maintain my role at work.” And she did at first allow me just to have you know, I had a half day off which helped initially but then it was apparent very quickly it just wasn’t enough to sort of, you know, oversee what was going on with mum and dad and so I just made the decision which, yeah, it was, it was difficult, and obviously if things had been different I, you know, I wouldn’t have done that, I wouldn’t have gone part-time at that point, because after having had the children and being part-time for while they were all young you know, this was, you know, I was sort of, suddenly sort of becoming a lot more career orientated and wanting to, you know, develop that and but it just wasn’t, you know, just, it just wasn’t feasible and to be there for mum and dad.

 

The bank refunded the money when Sarah noticed her parents’ had paid out to an unknown insurer.

The bank refunded the money when Sarah noticed her parents’ had paid out to an unknown insurer.

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They couldn’t manage their own finances at all, I mean they just, you know, they were, they were so vulnerable that you just you know, we just took over that completely, it was needed. I mean my dad was scammed once but we did, I mean we managed to get the money back from the bank because they, you know, some company had rung him up and got him to pay for some insurance that he didn’t need or whatever, health insurance, and but… So, you know, when people are very vulnerable like that you need it, don’t you, you need somebody to sort of take over your finances and your care like that, definitely.

Well I, it [laughs] because we had Power of Attorney, you know, I could keep an eye on things and obviously it just, it was just flagged up on his statement, saw it on the statement and questioned it and when I rang the bank they were aware of this company so he did get his money back. But yeah, I think at that point we sort of took the card and; he didn’t know anyway, you know, he’d no idea, so it was just easier for them not to have you know, when they were on, if they, if anybody rang or they were on their own we just took charge completely, that side of things, for them.

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