A-Z

Hannah

Age at interview: 53
Brief Outline:

Hannah’s mother self-funded care from age 75

After Hannah’s mother was diagnosed with Alzheimer’s, care began with family members staying over and later a care agency was used. Eventually it was decided Hannah’s mother needed residential care. When Hannah relocated, her mother moved to a care home nearby.

Background:

Hannah is a banking director and commutes to the city from rural central England. She is primary carer and has Power of Attorney for her mother who has lived with dementia for over ten years. Hannah shares decisions about care with her brother and sister.

More about me...

Hannah’s mother moved to a smaller house after losing her husband. Shortly after this Hannah and her brother and sister started to notice early signs of dementia. Hannah began with informal care arrangements, doing her best to maintain her mother’s independence by helping out with household chores and personal care. Hannah then found a local care agency who visited three times each day. However, this did not work out well because the times scheduled for visits did not suit Hannah’s mother’s routine. Hannah lived forty minutes away and worked fulltime, it was a worrying time relying on friends and neighbours to check that all was well. Soon the family decided that their mother’s needs would be best served in residential care. Hannah set about searching the internet and asking friends for advice about finding a good care home and reading up on CQC reports. Although Hannah’s mother was reluctant to move into residential care, she did take to it and they felt the care was good.

When Hannah moved to another part of the country, they took the difficult decision for her mother to move to a new care home. Although there were risks involved in moving to a home, over 150 miles away, Hannah was helped by St John’s Ambulance who transported Hannah and her mother, safely, in an ambulance. The new home was a success and Hannah felt that the care, especially nutrition, was an improvement on the first home. When seeking the new care home she visited several and asked questions about their approach to care. Hannah was pleased that a family member came along and asked about end of life care, this, she feels, is a really important aspect of the quality of care and how care teams relate to individual residents.

Hannah’s mother put in place a Lasting Power of Attorney so that Hannah could deal with her mother’s finances. She tries to get the best return on her capital and found that high street banks were easiest to deal with face to face when operating under a Power of Attorney. The care home fees are paid from her mother’s capital and proceeds of her house. The Alzheimer’s Society have been a great source of support and information and helped Hannah to apply for Attendance Allowance after her first application was rejected.

 

After managing with family help, Hannah’s mother paid for care at home.

After managing with family help, Hannah’s mother paid for care at home.

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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 two 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 fifteen 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 six 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 four months and we made the very hard decision that she needed to be cared for in a home.

 

Hannah realised her mum needed full time care and companionship.

Hannah realised her mum needed full time care and companionship.

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We moved her into the home on May the twenty-first and prior to that Christmas I’d actually taken her away with me for Christmas and you just notice that the level of support that she needed was permanent and hence the reason for the carers. But we just realised that actually the level of time that the carers were in there was insufficient to protect her and to keep her company and thus we took the decision, collectively as a family, that that would be the right thing to do, and my brother and I sat down with mum and explained to her that we felt that she could no longer stay independent and that we needed to move her into a home.

 

Hannah and her sister and brother considered different options for the location of their mum’s care home.

Hannah and her sister and brother considered different options for the location of their mum’s care home.

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So that really was a difficult decision a lot of to and froing in the family as to where she would actually reside, as to whether it should be a home in her town that she had spent the majority of her married life in or whether she should be somewhere where, which was equidistant from the rest of us but in the end it was agreed that she would be in a home that was close to me as I was the primary carer for her; so we then looked for homes that were close to where I lived. That, then my brother and I then went and walked around various homes and ended up settling on the care home that she ended up residing in.

 

Although it was hard, Hannah was reassured by the DoLS inspection.

Although it was hard, Hannah was reassured by the DoLS inspection.

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There’s, another aspect as well is one of the things that mum didn’t have in her first care home, well it wasn’t done straightaway, which [county] are hot on, is deprivation of liberty. So this is called a DoLS report for short and it’s where a social care worker goes and visits the individual in the home to look at the circumstances, because those homes will prevent your loved one from being able to leave the premises and therefore there has to be an Order in place. Again that’s quite hard when you’re reading those reports because they have to set out explicitly the circumstances as to why their liberty’s been deprived; but they’re also a good source because they will go round and look at the home and decide as to whether they think they’re getting good care.

 

Hannah found it helpful to ask about end of life care when looking for a care home for her mum.

Hannah found it helpful to ask about end of life care when looking for a care home for her mum.

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I think it’s really hard to find a good care home and you’re very much dependent on the people CQC reports and actually this home, I actually spoke to a lady who’s sister had been residing in it for the last five years. So we did a lot more due diligence on the home, having had a previous understandings as to what happened previously. My sister-in-law’s actually got nursing background and she was very good actually asking.

My sister-in-law was very good at asking end of life care, which is something that actually my brother and I wouldn’t have thought to ask but was really pleased that she did, because having seen that, having seen so many people pass away, end of life care is paramount to me because I wouldn’t want mum to be on her own if, for any reason, I couldn’t be there so.

So that was something that your sister-in-law actually thought about in advance and it…?

Yes, yeah, yeah.

Yeah, it was helpful, those conversations?

And she asked those questions and we didn’t know she was going to ask those questions but I’m really pleased she did because they give you actually a good feel of the home as to how they, how they treat the individual.

 

Hannah was worried about the move but the outcome was good, her mum’s diet and health improved.

Hannah was worried about the move but the outcome was good, her mum’s diet and health improved.

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Mum was in a very bad way she’d fallen two and a half years before that which then had meant that she’d be, literally two weeks after her fall she became bedridden, and although she would sit in a wheelchair she, her mobility was totally gone. She’d also been put on a liquid diet but it wasn’t a very good liquid diet and she’d been suffering from bedsores. So we made the decision to move her and that seemed the best thing to do, although it was with some trepidation, because anecdotally people say that people who move homes in her state don’t normally do it, but we decided to do it. So St John’s Ambulance were fantastic they actually provided the ambulance to be able to move her and I was able to travel with her in the ambulance all the way up; and they were absolutely brilliant, talking to her the whole time, checking her medi- her vitals, etc, and when she arrived at the home she was really made to feel welcome and that was brilliant. What was interesting though was that the new home totally reviewed mum’s diet looked at what she could eat, they tried her back on solid food and for a few weeks we were actually successful, but then she stopped eating solid food so they then put her onto a pureed diet but it was proper food that was reduced to a consistency that was good for her, and her appetite improved considerably. And also bar the, a bedsore on the first week that she was there she hasn’t had a bedsore now for three years; and we do believe that’s because her diet improved considerably. At the old home the doctors had put her on supplements; those were all removed and she was getting all the nutrition that she needed from the food that she was given. And they were brilliant, they got her, they get her up every week so that she still has her hair done which I still think that takes her back to a happy time, because she loved having her hair done once a week. So it’s been considerable, a considerable improvement, and I think she’s defying laws of science at the moment now because she’s doing really well, so, although her weight, her weight is going down she’s still doing well, yeah.

 

Hannah says her mum will not get NHS continuing healthcare unless she moves to a different care home.

Hannah says her mum will not get NHS continuing healthcare unless she moves to a different care home.

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By all accounts we were, we’d always been aware that because she had a house she would have to be self-funding so there was no chance of any assistance with that. A few years ago I did go through with [name] County Council at the time, a request to see if she could have continuing healthcare but after three hours of a very long interview and going through every single detail of mum’s care we were told she didn’t qualify for it. So that’s quite difficult when you see other people getting funding and since we’ve recently moved to, now to being, I’ve moved house so we’ve moved to a new care home, because she’s in a residential care, not a nursing home, we’ve been told that if she did qualify for continuing healthcare, whether she does or she doesn’t, then it’s all likelihood that she would need to be moved into a nursing home; and having moved her once I would be reluctant to move her again. So I’m in a big dichotomy at the moment as to whether I do apply for it.

 

The Alzheimer’s Society helped Hannah complete the Attendance Allowance application form.

The Alzheimer’s Society helped Hannah complete the Attendance Allowance application form.

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The Alzheimer’s Society were fantastic in helping me get mum’s Attendance Allowance, because the first time I applied for that we weren’t successful because there is an art in writing these, and actually one of the hardest things to do is to write about your parent so the Alzheimer’s Society were invaluable in helping me do that.

 

Hannah decided against a care annuity for her mother.

Hannah decided against a care annuity for her mother.

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We looked at whether to use an annuity having a banking background. We didn’t expect mum to live as long as she has so felt that perhaps that wasn’t the right choice however, on reflection, perhaps it would have been the right choice, but who knows? It’s, it’s hard to know how long they’re going to live and what’s the right way, the right way to go about it. So that’s a really hard decision to make as to whether you do take out something to protect the funds that you’ve got. Very hard.

 

Nobody told Hannah about funded nursing care.

Nobody told Hannah about funded nursing care.

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You don’t know where to go to, and it’s the, then you’re, then it tends to be the care homes who will tell you as to what will happen with regards to funding. But I didn’t realise that she was entitled to keep her attendance allowance when she was in a care home and if she’s, if they’re in a nursing home they can also get a nursing allowance, which nobody tells you about, so.

And did you go to the local authority at any point for any assessments?

Only when we asked for an assessment for continuing healthcare, but that was arranged through the care home.

Because you always knew that funding was going to be your responsibility, so...?

Yeah, yeah. And, and, and I only found out about continuing health care through talking to other relatives in the care home.

 

Hannah explains that it is important not to have too much money in one account.

Hannah explains that it is important not to have too much money in one account.

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If there is a large sum of money; so people need to protect themselves with regards to their funding, so if the, if savings are over £85,000 then you need to find a bank account that you’re getting a savings rate on for every £85,000 tranche that you’ve got. That means presenting your Power of Attorneys, every time you have to go and spend time sitting in front of a bank clerk, because they’re all things that just cannot be done online. National Savings is good, but again you have to send off all the paperwork. So it would be helpful to know that, you know, go to one of the websites, moneysupermarket.com, etc to know that they’re there to help you, but it’s a case of actually trawling the high street banks because they’re the easiest ones to open the accounts with.

And so, and then you also mentioned a threshold of £85,000 as a sort of a pocket of savings; could you just explain to me a little bit more about that?

So that’s to do with the finance; so after the economic crash in 2007 there was something called the Financial Services Compensation and therefore the first £85,000 of savings for any individual is protected in banks, but if you have over £85,000 and that bank was to go bust you would not receive the residual amount. So it’s quite important to look at if you are self-funding and definitely from a parent that’s in the south east, yeah.

 

Hannah regrets not advising her mother to take out an LPA for health and welfare as well as finance.

Hannah regrets not advising her mother to take out an LPA for health and welfare as well as finance.

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I think I’m lucky; I think my education and financial background is invaluable. I think approaching things like knowing to get Powers of Attorney; one of the things I regret and which I’m now going to revisit is actually I don’t have, when I did a Power of Attorney for her finances I didn’t take one out for her health. It’s quite a hard thing to suddenly think that you’re responsible for making those decisions; this issue is that now it’s vitally important that I do have a say over that, and although we’ve got great doctors and a great care home I don’t want her to go into hospital. So not having that Power of Attorney I feel I’m in a weakened position, although the family is totally behind us on that basis. But with regards to the financial side of it being able to negotiate just looking after her bank accounts finding the best home for her money it is very difficult and actually it’s time consuming to ensure that you’re trying to get the best and over the last ten years for her savings it’s been really hard, she’s not getting the best return on her money.

 

Hannah was worried about the move but the outcome was good, her mum’s diet and health improved.

Hannah was worried about the move but the outcome was good, her mum’s diet and health improved.

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Mum was in a very bad way she’d fallen two and a half years before that which then had meant that she’d be, literally two weeks after her fall she became bedridden, and although she would sit in a wheelchair she, her mobility was totally gone. She’d also been put on a liquid diet but it wasn’t a very good liquid diet and she’d been suffering from bedsores. So we made the decision to move her and that seemed the best thing to do, although it was with some trepidation, because anecdotally people say that people who move homes in her state don’t normally do it, but we decided to do it. So St John’s Ambulance were fantastic they actually provided the ambulance to be able to move her and I was able to travel with her in the ambulance all the way up; and they were absolutely brilliant, talking to her the whole time, checking her medi- her vitals, etc, and when she arrived at the home she was really made to feel welcome and that was brilliant. What was interesting though was that the new home totally reviewed mum’s diet looked at what she could eat, they tried her back on solid food and for a few weeks we were actually successful, but then she stopped eating solid food so they then put her onto a pureed diet but it was proper food that was reduced to a consistency that was good for her, and her appetite improved considerably. And also bar the, a bedsore on the first week that she was there she hasn’t had a bedsore now for three years; and we do believe that’s because her diet improved considerably. At the old home the doctors had put her on supplements; those were all removed and she was getting all the nutrition that she needed from the food that she was given. And they were brilliant, they got her, they get her up every week so that she still has her hair done which I still think that takes her back to a happy time, because she loved having her hair done once a week. So it’s been considerable, a considerable improvement, and I think she’s defying laws of science at the moment now because she’s doing really well, so, although her weight, her weight is going down she’s still doing well, yeah.

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