Caring for others

Angellica Bell:  Welcome to Rewirement from Legal & General. I'm Angellica Bell, and this is the podcast where we share colourful stories of retirement from people who are doing it their own way and loving later life. This is our last episode of the series, and I wanted to cover a really big topic for many of us. As we age our bodies and minds change, and that can mean we have different needs. Today, we're going to hear how you can plan for that financially and mentally and make sure the support systems you need are in place for the "in case".

We'll also hear some advice from one newlywed couple on how they're looking forward to enjoying the happily ever after whilst living a full life, despite the limitations a disability might bring. And as always, the experts will be on hand to tackle some of the questions and issues you might have around living independently and managing care in later life.

I'll be chatting to Legal & General's Sam Roberts and Andrew Parfery from the care matching service, Care Sourcer My first story is from the incredible Feyi. Feyi is one of the sandwich generation who have their own retirement on the horizon whilst caring for a parent. Although Feyi's daughter is grown up and independent, Feyi's also thinking ahead of how she can leave her a secure legacy and make sure her own care needs are covered. Let's talk about your business.

It's called Black Dementia Company, and it was set up from personal experience with having to look after your mother. So, tell people who are listening about that.

Feyi: My mother was diagnosed with dementia in 2019, but prior to that, I and my siblings started noticing some changes and we did feel that there was something wrong there. Even with all that, she's always enjoyed puzzles, Scrabble, Sudoku, everything, everything that you can think of, all those mind tasks, mind games.

Well, over the first lockdown, I spent a considerable length of time with her anyway and I noticed that things weren't, as I thought they were, even say in February, 2020. So, sometimes I'll, " Let's play Scrabble." She might then say, " Oh, what do we do with this? What do I do with this?" I thought, " Okay, yeah." Or the crosswords that I used to buy, the crossword books and word search and all that, seemed to become more and more of a challenge for her.

So I thought, " Okay, I know that there are quite a few organizations that sell products for people with dementia. So, let me just do a search and see." None of the shops that I found had anything that was specific to my mother's background, which is from Trinidad. I say that, my mother's from Trinidad, but she went to university in Canada. She's lived in Nigeria, in America.

So, she's had quite mixed exposure to different things. So I thought, " Right, okay. There's nothing out there. Let me try and make my own." So I started writing my little quizzes and trying to do crosswords and things like that. I thought, " Clearly, I'm sure that there is at least one other person out there who's facing the same challenge as I am, and so I'll just do something, put it on eBay, or anything else." I wasn't even thinking about a business, but then once I started, I said to myself, " Well, why don't I just do it properly and incorporate the company, set up a business, put some things out there and see what the response would be?" I guess the rest is history.

Angellica Bell: Well, exactly. And we know from research that that subconscious is so powerful for people with dementia and you have to tap into things that relate to them, that they remember from when they were growing up, or music. We know how music is so powerful and emotive, so I'm really glad that this business is thriving. So, what you're thinking and what you're hoping is that your business will fund your own retirement?

Feyi: So I am in a final salary pension, well, I was in a final, final salary pension scheme, and then I think I've got like two other pensions. I would like the business, The Black Dementia Company to exist. I mean, as I've said before, my hope is that it exists long after me. It lives beyond my lifespan, but the hope is that it exists on its own, so that I can then step back, obviously continue to create if the need is there, but also just to enjoy life and savour the years really, that's what I would say my future is. As soon as I'm able to, I will detach from employment, focus on work, let it fund itself and find time for myself.

Angellica Bell:  So, I just wanted to go back to you being a solo carer. Do you have any concerns with that and with your business as well, and work, and life? And helping your mom, has that made you view retirement differently?

Feyi: Gosh, yeah, definitely to answer your last question, yes. Yes, yes, yes. I mean, I've always, just by my nature and I suppose everything else, I'm the last, we're four girls, I'm the fourth, but I've always been the one doing my mother's shopping, things like that anyway. So, I think I naturally flowed into this carer role, but certainly now, I appreciate more than ever the need to prepare for your retirement, for your older years, because there will come a time I will have to ask for external help and I'll have to think about how what that looks like.

Then also again, well, as you brought it up, Angellica, thankfully, but as we've more or less alluded to in this conversation, once my role as a carer perhaps slows down or stops, then I've got all these extra years. I mean, I do hopefully, but you know what I mean? I do know the after look after myself, even now as a carer because the time is coming when, myself, me as a person, the demand to be physically at different places will grow. I have a daughter who I also ... I mean, she is concerned that I spend time looking after myself as well.

Angellica Bell:  What is wonderful about you Feyi is that to give of yourself, give everything of yourself to care for a family member, you have to be a selfless kind- hearted person, and that's what makes you wonderful and your story wonderful.

That's why I wanted to ensure that you are being looked after yourself, but what advice would you give to somebody else who knows they have to maybe ... Or who's considering actually, looking after somebody they love or they know, and becoming a full- time carer? Are there certain things you'd say, " Actually think about that. Think about this."

Feyi: Carve out time. Which to be fair, I try to do. I do yoga, I like to meditate and all that, and I cover it out. It's either going to be very early in the morning or late at night, just know that what you're doing, whatever you do is a bonus and it's okay, it's okay. I cry sometimes. I hate dementia. Obviously I don't hate my loved one, but I hate dementia. That doesn't make you a bad person. But if you can just not translate that to the care that you're giving, then you're winning.

Angellica Bell:  Really good advice. Also as well, making sure, like you've said, that your finances are in order so that whatever eventuality might happen, you're prepared.

Feyi: Start now, carve something out, take a little bit out to put something away for later. One thing that the pandemic or lockdown has taught me, and from a few other people that I've spoken to, it seems that it's basically the same in different ways, is that a lot of things, we thought we needed, physical things, your clothes and eyebrow plucking. A lot of things we needed before the lockdown, we found that we can make do.

Angellica Bell:  Feyi's got some great ideas for retirement, from living somewhere warm or near relatives, to traveling and pursuing her artistic projects. But first she's out to challenge misconceptions about dementia and make a difference to people's happiness with her business.

You know what? Talking to Feyi made me quite emotional. It's a situation that any of us could find ourselves in, caring for a parent or child or doing both, whilst also trying to work out our own futures. The way Feyi has set out to make such an enormous difference in other people's lives too is incredible. I hope if you're in a similar situation, you can find strength in knowing there are others like you, who don't have all the answers and are just doing their best. There are loads of resources to support you. You can find out more on the website and check out more about The Black Dementia Company in the show notes or at legalandgeneral. com forward/ retirement.

 Next, we meet newlyweds, Heather and Alan for their take on staying independent in later life with different needs. They may be in their 70s, but that hasn't stopped them planning a life together. Alan's partially sighted and they met three years ago on a holiday organized through a tour company called Traveleyes, which offers independent trips for people who are blind, by partnering them with people who are sighted. Heather and Alan, I need to say congratulations to you. I haven't said that yet, have I? That's exciting you got married, how was it?

Heather: It was lovely. It was lovely.

Alan: Yes it was.

Angellica Bell:  Now, you're both in your 70s, which is an amazing time to find love. Tell me about how you met.

Heather: Well, it's purely by chance really, because I was doing Nordic walking. I had arranged to go on a Nordic walking holiday to Swaziland, which was subsequently cancelled. And about three months later, I got a phone call from the girl who organizes the Swaziland bit to say, " Would I think of going to Swaziland as a sighted guide with a group of visually impaired people?"

And before I went on it again, purely by chance, I lived down in end of nowhere. There was a thing on our Facebook page that guide dogs were looking for a My Guide to guide a blind gentleman around where I live. So, I got in touch with them and I started walking with Brian before I went on the holiday. So I had some experience of what it was like. So, that's how I ended up on the holiday, walking the Camino de Santiago, where we met.

Alan: My first wife died in September of 2013 and we actually had a villa out in Majorca, which I used to go out to for several weeks at a time after she died. My eyesight started going just as she was dying, unfortunately. After five or so years, it became obvious it was difficult for me to live in that house in my own, because it was a bit away from the nearest supermarket. I had to stop driving, eventually had to stop cycling, which was my leisure pursuit. My girl said, " Well, dad, we'll just have to sell the house."

So I sold it in 2017, and that was really the end of my overseas days at the time. But I happened to go to a Christmas lunch at the church and I was sitting next to a guy who said ... he'd just come back from Kerala with a group of visually impaired people on a Traveleyes walking holiday and he said I should try it.

So I booked a weekend in Bilbao just to see what it was like. And a bit like Heather, just signed up for the Camino walk, which oddly was something that I always fancied doing, not for any religious reasons, but it was just one of those kind of Everest challenges. So, that's where we met exactly three years ago on the 28th of me, 2018, in the romantic setting of the Premier Inn in Gatwick North, that's where we first met.

Angellica Bell:  It's got to start somewhere. So, I want to ask you about finding love later in life because a lot of people think that's done, they're not interested in it, or they just think it won't happen. Is it something that you thought was a possibility or you just go with the flow with life and see what presents itself to you?

Alan: Well, since I retired on health grounds at the age of 49. So since then, I've gone with the flow and then with losing my sight, you don't have much choice but to go with the flow.

Heather: Alan lives in Glasgow and I live in Swanage in Dorset, 417 miles apart. So when we did start getting together, it was a rather lot of flights back and forth. So we would start off by doing a few weeks in each place, a few weeks on our own. As Alan's sight got worse, we spent more and more time together.

Alan: Really, we were thrown together as it were, by the COVID- 19 pandemic. We reckoned, if we survived that 24 hours a day for almost a year, we could survive anything, I think.

Heather: Yes, this is despite the fact that his first words were, " I do not want to live with anyone or get married again." So I said, " Well, that's fine because neither do I," because at the time I wasn't intending on getting involved with anybody. So look what happened, three years later.

Angellica Bell:  Three years later, you've both gone back on your words. What was it, Alan, that made you change your mind?

Heather: Well, we just decided it was the right thing to do. You know, people change, times change.

Alan: It just seemed the sensible thing to do, really, just move together, if you like.

Angellica Bell:  To get a base together where you can grow, get married, and start another chapter of your life. And Alan, I want to talk about you and the changes in your life because many people can forget to think about their changing support needs as they get older, but as a partially sighted person, do you think you've been more aware of this?

Alan: Yeah, so look, comes gradually. As I say, when I started losing my sight in May, 2013, was the first time I noticed it, when my peripheral vision was just a bit dodgy. It probably took two to three years before it really had an impact, had to start relying on other people to do things. My daughters both live in Glasgow, but I have six grandchildren as well. Yeah, it does become limiting in the sense that you can't just jump in a car and drive somewhere. I cooked for myself and cooked quite well, I thought for myself. I didn't have ready meals or anything like that, but that became more and more difficult.

Angellica Bell:  But it seems Alan, that you still tried to hold onto your independence for as long as possible. Even when you first got diagnosed, you said that you still wanted to do things and you want to do that for as long as possible really?

Alan: Well, I think Heather will tell you, yes, I try and be a bit too independent sometimes. But up until recently, I've managed to be fairly independent. I could go out walking on my own. If I had to go to the doctor or a bit of shopping, it's more difficult now, there's no question about that.

Angellica Bell:  Well Heather, how do you support each other with your different needs? How does it work?

Heather: I guide him everywhere. I am his eyes, so I will tell him there's a curb, there's car coming, we've got to wait to cross and things like that. But about the home, if you're talking about cooking. If he's going to cook something, I would get everything out and lay it out for him.

I would put oil in the pan, but he can do mostly the rest himself. I think the most important thing is I have to make sure I put things back where they came from, rather than putting them somewhere else or leaving them out, which is not always easy. Or I'll have to tell him if I've left a cupboard open, or a door open or something, or something on the floor so he doesn't fall over it, because he can't see it and I have to be more aware of that. I think that's probably the main thing. And we have to plan a bit more, yes.

Angellica Bell:  So what is your plan for later in life? If you do need more care or support, do you plan to continue living as independently as you do now? Or do you have an idea of how things could be, or you might be open to other options?

Heather: Well, we've just moved to a new flat and it's a brand new flat. It's a second floor flat, but there is a lift. So, we did make sure there was a lift. We do stairs whenever possible, but there is a lift.

And because we're in Glasgow, Alan's family are all round. So his daughter, his elder daughter, is very helpful. She'll do shopping for us, come round. And one of the boys drives, one of her boys drives, and he'll come round and do things for us. We have another grandson who's very good at doing things for us. We're not planning particularly for if one of us has to have more care, we're just going to carry on and see how it goes really, rather hoping we can cope.

Alan: I can manage the flat at the moment and I'm sure on my own, I can probably manage it, but I might need more support in terms of day- to- day living and cleaning and washing and so on and so forth. We've got some up- market equipment in the kitchen, none of which blind person friendly, it's all black. Some of it, there's no bleepers that tell you when you've pressed the button. Induction hob I think I'm getting the hang of, I can put one hob on, one ring on, but that's all so far.

Angellica Bell:  Alan, what advice would you give somebody in your situation if they're looking to relocate?

Alan: I think just make the kind of decisions you would in a normal. Look at what your circumstances are and what you can do independently, what you need help with, where your facilities are, shopping and so on, where your leisure pursuits are. So it's a question of making sure that all of these things that you're used to on a day- to- day or week- to- week basis are still conveniently to hand.

Don't want to go out in the limb and then suddenly find that you can't go from your house to a leisure activity simply because you can't see. But yeah, I think just stay where you're comfortable staying, where you know what you're doing, where everything is familiar to you. That would be the best advice I would give anyone.

Angellica Bell:  Now what about financial planning? What were your thoughts and how did you go about it, to make a comfortable life for yourselves together before moving forward?

Heather: Well, I don't have a brilliant pension, but I sold my house some years ago and bought a cheaper house, so I released some capital. Until a while ago, I was involved in a business where I got some income from it. I probably have more capital value than Alan does, but he has a good pension. So, together we work-

Alan: It's worked for us quite well.

Heather: ... very well together. We discuss our money, what we've got, where it's going, there's no secrets, there's no problems.

Alan: It works quite well, to be honest.

Angellica Bell:  Do you know what? You just seem so relaxed, you're in that honeymoon period where you know what you want and you're happy, and you're about to move into a new place. I wish you all the best. Thank you so much for talking to me and congratulations once again.

As always, I'm so inspired by our brilliant guests, from Feyi's wish to help dementia sufferers in the black community while securing a happy future, to how Heather and Alan were united through their shared love of adventure and have formed a lifelong partnership from that supportive relationship. Huge congratulations to them on their wedding and new life together.

Now, let's get some practical ideas and suggestions for how you can also plan ahead and make sure you're ready for what might be around the corner both financially and mentally. Joining me is Legal & General's Sam Roberts and Care Sourcer's Andrew Parfery. Sam, caring for your needs and the needs of others in life is a huge part of reality for so many people in the UK. So why isn't it a bigger part of planning?

Sam Roberts: Yeah, that's a great question, Angellica. I think it's because it's such a complicated topic. So if you think about one's future, two things are happening. One is our retirements are going to look completely different to our parents' retirement. The structure of our pensions, moving from defined benefit to defined contribution. The time at which our pension will kick in is getting later.

We're all living longer, but we're not necessarily living healthier. In fact, the number of years of life lived with poor quality of life is increasing, alongside our length of life. And the number of chronic conditions that we have as we get older is becoming more and more of an issue. So, I think picturing the future is sometimes quite tricky because all of these variables are changing. That's the one thing.

And then the other thing is trying to understand what you will need at the time that you need care is also pretty tricky because you think you need to design what you need based on what your function is at that time. So for example, you may need something as little as a fall monitor, to figure out if you take a tumble, or an alarm to call somebody if you need help, all the way through from ... or you may need home modifications, a wet room downstairs or a bathroom downstairs, or more handrails, or you may need somebody to come for a couple of hours, or you may even need to move into residential care.

So, what we've ended up finding when we spoke to our customers about this is that 1. 3 million people every year in this country do investigate care, but it almost always happens at a time of crisis, either in Feyi's situation where a relative is thinking about their parents and thinking about, " I'm wondering what the future will hold. Maybe I need somebody to come in for a couple of days a week," or the individual thinking about it for themselves. It's at that time of crisis that people need simple information, advice that they can get, and it all in one place.

Angellica Bell:  Exactly. Well, Andrew, let's talk about Care Sourcer. Why did you want to start this?

Andrew Parfery: Well, about five years ago, I was running my family's home care business. So that's a company that would employ care workers, train them, and then schedule them to go to perhaps your mother or your father's own house if they required care and support in the home. That family business had been going for about 20 years. My dad was a social worker prior to starting it, and he'd cared for tens of thousands of people through that business' 20 years, but he became very unwell and he was admitted to hospital. Unfortunately he was given seven days left to live while in hospital, so this all happened very quickly.

The first thing we did obviously, was speak to the social worker at the local authority and ask if they could put some home care in place for him to be able to go home and be cared for at home for the last seven days of his life and they couldn't find a home care provider. They had no availability from anybody.

So, we were fortunate enough that we could taxi care workers that worked for us through from a different local authority area to where he lived, and so we could get him home. That meant that my mum felt comfortable, caring and supporting him and he was able to come back to where he wanted to be. But it struck me at that point, that for many people, they have no option and no choice. It's not easy to find care, especially in that sort of traumatic, emergency situation.

Really what it said to me is that he would have died in hospital unfortunately, had we not been fortunate to have that business. So it was really at that point about how many other people are going through this negative experience, how can we help them? And that really led us on to starting Care Sourcer, which is really there to help people understand what they need when it comes to support and care, to help them find it, importantly in a very short period of time and explain to them what their different options are, because you don't have to necessarily go into a care home.

And then also to think about how to fund that, because care can be extremely expensive and the earlier you start to think about that, the more that you can do to plan for those costs.

Angellica Bell:  So basically, through personal experience and a real understanding, it was almost meant to be that you would take this on. Can you explain what a care matching service is?

Andrew Parfery: Yeah, well I would describe it a bit like a hotel concierge. So, our Care Concierge service is really there to help you understand what different care options there are if you need care and support, and then to help you find those that have availability.

So, if you wanted to jump on a flight, you would go onto a website and you'd understand which planes had free seats on them that you might want to book to a certain destination, but there's nothing so transparent and clear when it comes to care and care services. So, the first thing we would do is obviously understand that individual's needs and requirements. And the first step might not actually be a care and support service, it might be something like a assisted bit of technology to alert somebody if you have a fall, or it could be some support to stay on top of the garden, or to assist with bills and shopping.

But when it comes to more acute care, there are generally three main commonly known forms of care. One would be in a residential setting, in a care home, as an example. One would be in your own home.

Actually, two thirds of people are not in care homes, they're in their own home and a care worker would come to their home perhaps twice a day, seven days a week as an example. The third option, which is not very well known about is live- in care, where somebody actually would come and live in your home and that might be for somebody who needs a bit more support than someone coming in for an hour or twice a day, but is not yet at the stage where they feel they need to be in a residential setting to receive that round the clock care.

Angellica Bell:  Sam, there's lots of talk in the news about the care funding crisis. How do we pay for these long lives with declining health as well as you talked about?

Sam Roberts: Yeah, thanks Angellica. There's, I mean, possibly two ways that I would start to think about this. So the first is, for each individual to get some sense of how much they think that they would need. And a couple of things to think about on that. So the first one is to understand your local authority will only cover care costs in some cases, so don't rely on that as the ultimate backup plan.

The second is to think about where you live in the country, because care costs are quite significantly different in different parts of the country. So for example, a residential care home in Islington in North London is significantly more expensive than one in North Wales, for example, so that's the second thing, is try to understand your care costs in the area where you are likely to receive care.

And one of the ways of going about that is going online and looking at care costs calculator. So we have one for Legal & General on our retirement web pages, but there will be others. And they allow you to add in things such as the type of care you need, where you live, and they will give some advice on whether you're eligible for local authority, how much you could expect to pay for the sort of care that you want. So that's the first thing, understanding what the need is, then you will know how far you're falling short currently.

The second thing is, assuming that you're not one of the folks who are covered by local authority care, whether it's home care or residential, there are a couple of ways you can think about affording it. So, the first is savings, traditional. The second is something called an immediate needs annuity, which is where you put a lump sum payment into an annuity and then that pays a care provider for your care until you no longer need that care. So, we see it typically used in people moving into residential care and that care is paid at a fixed amount for as long as you need it. So, that's an immediate needs annuity, the second option.

The third option would be something like a lifetime mortgage or an equity release mortgage, where you convert some of the value that is in your house into cash, either a lump sum of cash or a small amount that is released. We typically see people using that more for home adaptations, like if they need the railings, the downstairs bathroom, et cetera, we talked about before, or sometimes for care in the home. So a couple of hours of help, of care in the home. So, that's option three.

Then option four is obviously downsizing or moving house. So those are the ways we think about it. First of all, understand the need. Second, potential source of income if you are a self- funder. Again, as Andrew was saying, we work together with Care Sourcer, there's a free telephone line for you to talk to a care specialist, just to talk through some of these options, because sometimes people just need somebody who's done this many, many times before to bounce ideas off.

Angellica Bell:  Now, what I'd like to know next is what does the future hold? We all know AI is in use already. What else is out there?

Sam Roberts: Yeah, so I think maybe two different angles. So on care, I think we're seeing quite a lot of innovation, the kind of work had Andrew and his team are doing with Care Sourcer. There's quite a bit of innovation on finding care, on monitoring care, and we're seeing lots, lots, lots more home care.

So the NHS did a big push over the last 18 months with COVID, where we've seen lots more people seeing doctors through Zoom, or Teams, or whatever. Lots more home monitoring for conditions, lots more people in clinical trials from the home. So, I think those are the things, those trends are here to stay, that a lot more of our care will be delivered online.

For years I've, I don't know, probably Andrew's the same, have been watching the world of robotics to see if there will be much to come on the care front. But I think the consensus is that's a decade or so away. So that's on care, which is really help with activities of daily living.

Then on the health side, I think we are going through an unbelievably exciting revolution in the way we provide healthcare. So we're moving from a society that has treated illness to one that's trying to predict and prevent illness and then personalize treatment.

So this is where you'll see genetics coming into play, where you'll see artificial intelligence that can read images, where you'll see more home monitoring as well as personalized therapies, where one medicine is made for one person. I think lots of innovation. When you're going through a renaissance like this, it's very hard to see where it will land. But my guess is that there'll be much more prediction, much more prevention, much more personalization in the years to come.

Angellica Bell:  I really do hope that's given some food for thoughts and perhaps prompted you to reflect on your own later life. If you are caring for a loved one, try and ensure you make provision for your own needs, whatever they may be, both now as a carer and in your retirement years. We've mentioned loads of resources there and if you want to do some further reading, you can. Check them out in the show notes for this episode at legalandgeneral.com/retirement.

I'm Angellica Bell and I've loved meeting incredible people and sharing their stories across the series. I do hope you've been as inspired as I have to look to the future with excitement, feel empowered with great information and support to help you plan and thanks to you for listening. If this has helped you in your future planning, please share the podcast with a friend and let's help everyone start a retirement revolution.