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Tracey

Age at interview: 59
Brief Outline:

Tracey’s parents self-funded care

Tracey’s dad was diagnosed with dementia and her mum struggled to care for him. He moved to a nursing home that could cope with his challenging behaviour. When her mum needed care at home they self-funded both residential and care at home.

Background:

Tracey, aged 59, is married with one adult child. After leaving the Royal Navy, she worked as an admissions officer at a University. She is now retired and works as a volunteer. She lives three hours away from her home town where her parents lived.

More about me...

Tracey’s parents live three hours away and her sister and family lived nearby. After Tracey’s sister died it became clear that her mum and dad were not coping. As the care now fell to Tracey alone, she made the three hour trip to take care of her parents’ needs as often as she could while working full-time.

Tracey’s father received a diagnosis of frontotemporal dementia and her mother struggled to care for him. They were both reluctant to have carers coming into the house. Tracey arranged for a friend to do some cleaning and this helped her parents get used to people coming in. The cleaner started doing a bit more care and helped with driving to appointments and checking the post, she kept Tracey informed of what was going on through daily text messages. When her dad began to need personal care, Tracey arranged care workers from an agency.

Tracey found it difficult to deal with the care team as she was so far away and the communication between the carers and her parents was not satisfactory. After a mix-up with medication, Tracey found a different care agency and the communication improved. Tracey’s dad paid to go to a day centre twice a week but eventually he needed to move to a residential care home to meet his needs. The care team continued to visit to care for her mum. Tracey’s mum had a small pension and some savings, the house was expensive to run in addition to paying for care. After around six months of paying for residential care as well as care at home, their savings were dwindling. Tracey persuaded the local council adult social care department to re-assess her parents’ financial situation. They agreed to pay one third towards her parents’ care costs. Later, when her dad’s needs were re-assessed, they were awarded Continuing Health Care to pay for his care.

Tracey felt she had to fight to get the help she needed from the Social Services. She did not know where to begin when looking for a care home and, although she was given a list of local care homes, she did not get any help in selecting a home that was right for her dad. Tracey feels that because they were self-funding they did not get any help with arranging the care. After two years her dad had to move to a new care home that could better meet his needs.

 

Tracey lived a long way from her parents so the cleaner was a lifeline to make sure everything was alright.

Tracey lived a long way from her parents so the cleaner was a lifeline to make sure everything was alright.

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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 all right 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.

 

Tracey tried to persuade her parents to move nearer to her.

Tracey tried to persuade her parents to move nearer to her.

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And they, he did struggle there they struggled with him because he wanted to go home. Mum used to go, she was still driving at that time she used to go every couple of days because she missed him, and stayed with him for a bit, and then she used to come home and be sad or whatever, so. And I used to go up it’s three hours’ drive, I used to go up every other week then, in-between work and things, and I was hoping, and I was talking to them about it, hoping them, to bring them down to this area but they, they couldn’t cope with, with anything like that, with the trauma of my, losing my sister and the fact that they’d got a house that they’d lived in for thirty odd years it was just too much for them to consider, even though we said, “You don’t have to do anything, we can just find somewhere and you can come down.” But they just couldn’t cope with not being in charge of what they were doing, so.

 

Tracey worried about how her mother would cope with her father’s increasing care needs.

Tracey worried about how her mother would cope with her father’s increasing care needs.

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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.

 

The social worker agreed to change the care provider when Tracey lost confidence in the carers.

The social worker agreed to change the care provider when Tracey lost confidence in the carers.

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And we’ve had a couple more instances where things weren’t right so I talked to the social worker and we actually got, managed to get a new company in, because I’d just lost confidence in the other one [sighs] and also their paperwork and the way that they were running things, it wasn’t, it wasn’t up-to-date; and their inexperienced carers, because the, the turnover with that company was so huge that particular company, and then the new one we got in seemed to be much better and brought in this lovely lady who just loved her job, which was great, and she learnt to read mum and sort, you know dad had moved into homes by this stage so this was just looking after mum; and she was forgetting that she needed to have showers and things most days and saying she’d had one and she clearly hadn’t. So this new lady carer worked with her really closely and managed to get her into the shower, into the bath just a way of doing it, rather than saying “would you like a shower?” and her saying “no” [laughs] to, “I’ve run you a bath, let’s, shall we get in now or do you want your breakfast first?” That sort of thing; so it really worked. And it, to me it’s common sense but to some it doesn’t seem to be [laughs] so. And that is one of the most exhausting things, I think, and I think whoever, you know, that would be any advice that I would say is be strong, try and be strong with the carers, try and be strong and make sure that the care plan is, is up-to-date and it’s imperative really, imperative.

 

Tracey looked online but says it’s best to visit the homes in person.

Tracey looked online but says it’s best to visit the homes in person.

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I looked at CQC, which completely it just gave places marks; and some of the places I’d been, their marks didn’t match to what I thought; so I didn’t have much confidence in the CQC at all. Yeah, then, that was then. And all the places I looked up there wasn’t, they only showed the, all the homes and the places I looked up only showed the best bits, they didn’t show any particular case studies, they were just showing, all the ones I could find were only just showing a little bit about them, what their facilities were and what they could do, but there was no like sort of Trip Advisor no clients’ feelings or anything, which to me is just like a sales pitch. So not much info at all really, no, no. The only way to do it was to look at them [pause 2 seconds], go and physically look around them, and the more you look at the more you learn...

 

...and, you know, and then you obviously go, you don’t make an appointment, you just go, obviously all the time, but then if everybody’s doing that they haven’t got time to look after the, who’s in there do they? But I, we did find with this new one, the new one that we found for dad that they had a sales person showing people round, who didn’t discuss prices or anything, just showing the facilities, and it was like looking round a new, it was like looking round a show home.

Was it empty then, because it was so new?

No it wasn’t, they only had a few people in, but they didn’t have anybody in the basement where dad was going to be, and I didn’t know that he was going to be down there. So I only was shown round the nice rooms, which is a sales pitch isn’t it?

 

Tracey knew the home could not cope with her dad long-term but she had no choice.

Tracey knew the home could not cope with her dad long-term but she had no choice.

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Did you ever have any indication that that might be something that would happen further down the line, that he was going to have to move?

Yeah.

Would there have been a different choice around...?

There was no other choice really; they didn’t really want him in the first place but there was no other choice at the time; I had to do something quickly. In hindsight, I would have taken a sabbatical from work and spent more time up there looking, but there was an urgency because he was getting violent; and I really didn’t want him to be sectioned, which is what they could have done if things had got worse, or pushed mum down the stairs or something. I didn’t want it to get to that stage because it could have done quite quickly, yeah.

Yeah. So you knew that it might be a temporary solution?

Yeah, and I was hoping, because it was a nice place, it was lovely food, mum could go, she could have lunch with him as well, they did a few activities; I knew really it wasn’t geared up for how bad he was going to get and they knew that too, but they didn’t really want to take him but they did.

 

Tracey refused to have a care worker visit her parents again after a mix-up with medication.

Tracey refused to have a care worker visit her parents again after a mix-up with medication.

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And then one of the reasons we had to change, we had to change the care company, because there were a few incidences as in an early morning carer gave mum’s tablets to dad and dad’s tablets to mum. So of course paramedics were called and...

How did you find that out?

They told me.

Right. Oh they realised what they’d done?

They, yeah, they realised what they’d done, yeah; and I said, “I don’t want that carer ever going back to mum’s again.” And of course she didn’t.

 

Tracey heard about CHC funding from a healthcare worker as well as the financial assessor from the council.

Tracey heard about CHC funding from a healthcare worker as well as the financial assessor from the council.

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Tell me about the process then of getting the continuing healthcare?

That was that was a difficult process that was in the first care home we tried that, because somebody mentioned to me, one of the healthcare staff said, “You may, because of his decline, you may be able to get some healthcare funding, which means his place there will be funded.” And I didn’t know anything about this until I’d heard that, and I had read some bits and pieces about that so I thought I’ll try. And then the social workers were brought in, we had meet, a couple of meetings, and it turned out that dad fulfilled all the criteria for healthcare funding and then so that, a couple of months and then that worked. But, you know, I had to be strong and fight for that.

So who told you then that you could possibly apply for that; was it a member of staff?

It was somebody who came in to see mum and dad and it was one of the financial assessors from [Town] she said that, yeah, because they had a couple of assessments for their finances over the time.

 

Tracey had to ‘keep on’ at busy care home staff to help with the CHC application.

Tracey had to ‘keep on’ at busy care home staff to help with the CHC application.

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Well no, it wasn’t linked to the savings because the healthcare funding is a separate thing, you know, if they, if it finds out that their, it doesn’t matter what their savings were then, yeah it was a case of his...

So it was to do with his needs assessment?

...his, his needs, yeah whether that transfers to National Health or whether it’s still part of the Social Care, and it was still part of Social Care but healthcare funding, yeah. And so he did fulfil all the criteria, but I think only because I kept on at them, you know, “We need to try this.” Because the couple of the, people at the- staff at the home were overworked and they hadn’t got time for other meetings.

 

Tracey told us it was hard to find a care home for her dad when she had no experience of care homes.

Tracey told us it was hard to find a care home for her dad when she had no experience of care homes.

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Because the social worker said, “Well you have to choose. We can give you a list but it’s your, and we can’t recommend, it’s your choice.” And that is a minefield to me because we’ve had no experience in any of that. So we were going into these places and just hoping that they could give him what he needed.

 

Tracey’s mum had been managing the joint account but Tracey realised things were slipping.

Tracey’s mum had been managing the joint account but Tracey realised things were slipping.

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They’d always had joint accounts, because mum did the money really; so that was fine. but then it sort of became apparent that mum wasn’t quite on top of things and I think dad was bef, he was at home, before he was declining, and then I realised that things were slipping at home with him too, as in things weren’t getting opened and; he was always fastidious and things and then it, I realised that they hadn’t got their car MOT’d and things, and then I had to arrange that from afar, you know, and no insurance on it; and just found out that by accident, you know? So that’s when it star, that’s when we started to realise that we were going to have to take things over for them, when dad was in decline, yeah.

 

Tracey found ways of managing her mum’s post to help her keep on top of bills.

Tracey found ways of managing her mum’s post to help her keep on top of bills.

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She’d forgotten when she was paying the next bill; well in the end I had to have the bills come here because she wasn’t paying them. So I had to do, by that time we’d got Power of Attorney and; yeah, so it’s all, you know, it’s all there...

So you just gradually took over?

Yeah, gradually took over and then that’s when her cleaner opened her post and send me pictures of things she thought was urgent and things [I laughs] and maybe sent some stuff down and; so that worked really well, yeah, that did, yeah. I don’t know how, I don’t think we could have done that without her really, I would have had to do something, because I wouldn’t have wanted to, the carers to open up her post.

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