How to prepare for the care economy

Getting older can be difficult not just for the individual but also for the loved ones and family that help support them. Can a loved get by on their own? Do they need extra support? How do you balance autonomy and safety? These are questions thousands of people are asking themselves probably right now. And the infrastructure to make sure we’re safe and supported in older age is shaky, to say the least.

A new book, “The Measure of Our Age: Navigating Care, Safety, Money, and Meaning Later in Life,” may help give some answers. The author, M.T. Connolly, a lawyer and elder rights advocate aims to be a guide people through the process of making these difficult decisions, whether they’re planning for their own future, or that of a loved one. She recently joined Marketplace’s David Brancaccio to discuss.

David Brancaccio: As I look at the book, life when we get older can be tougher than many of us think, right? But let’s start with the joys. What don’t enough people realize about the good part of that phase of life?

M.T. Connelly: I think the first thing that we don’t really appreciate is that we’ve accomplished this extraordinary thing, which is to lengthen lives. In 1900, we lived an average of 38 years. And by 2000, our lives had been extended to an average of 78 years. And so that alone is this extraordinary accomplishment. But we sometimes underestimate both how hard it can be and how good it can be, as you pointed out. And that was actually one of the most surprising things to me from my research, because I had started off doing work in aging on sort of the bleaker side of things. But as I did the research for this book, what had started out as a them issue became an us issue and a me issue. People in my life age, I was aging — obviously, we’re all always aging — but it became more personal. And I began to also realize that because of our negative views of aging, you know, it’s associated with a lot of fear and shame and denial, we miss out on the good parts.

Brancaccio: And if we don’t have the resources, or the support, or the safety networks, and we end up living a hollow life alone, those are not really the joys — extra years in that condition aren’t. But if we think about it in a different way, you argue in the book, the good bits of aging can stay with us a lot longer.

Connolly: That’s exactly right. What I learned was that things like staying connected with the people in your life, and especially with the people you love, and having activity that means something to you — having a purpose in your life. Those are really powerful antidotes to all kinds of stuff, and means that we’re healthier, healthier, both in mind and body. And then there’s also another aspect of aging that I think we underestimate, which is the power of creativity and curiosity. It’s a whole chapter of life, where there’s really an opportunity for expanded consciousness and imagination and doing creative work that we also miss out on. And one other thing that I was surprised by was the power of awe, you know, the night sky, or the Grand Canyon. There’s a whole science of awe emerging about how something vast that straddles the boundary of pleasure and fear really can stretch our consciousness and change us in very powerful and positive ways.

Brancaccio: So we started big picture — almost metaphysical. Let’s get a little bit more practical. You know what supports a lot of us in older age? What you call the “shadow care” industry. These are people who are not getting paid, but are spending a lot of hours helping us.

Connolly: That’s right. And one of the things that’s happening is that as we live longer and deeper into old age, a lot more of us are going to need care. And what a lot of Americans aren’t aware of is that Medicare and most health insurance plans don’t cover long-term care. And most people want to age at home and get care at home. And so what that means is that we rely primarily on family caregivers. And it’s an astonishing number of them. Approximately 40 million family caregivers are providing a significant amount of care, with an estimated value of about $500 billion a year. And, similarly, an estimated cost to them in lost income of $500 billion a year. And so one thing that really surprised me was just how invisible the work of those caregivers is, even though it’s critical to the economy, it’s critical to health and well being of millions and millions of people. And I came out of my research for this book thinking we really need to help caregivers much more than we do and that we don’t have sufficient social support for them. A lot of people end up caregiving very suddenly, it comes as a surprise or it’s born of some crisis and they’re not really prepared for it.

Brancaccio: Well, we have that 40 million people who are in this shadow care industry, if you want to call it that. This isn’t looking in on dad or mom on a Sunday. The definition of someone who’s a caregiver in that 40 million statistic is someone who’s really investing a lot of time.

Connolly: About 24 hours a week, yes. It’s really significant. One other thing about caregiving is that it ends up being too much of a solo activity, when really it should be a team sport. A lot of caregivers feel very much alone in the work. And, you know, it’s important that we value it more and help caregivers more.

Brancaccio: Yeah, I mean, it really does have to get thought out. I was talking to a physician not too long ago, and they always talk about there’s often a kid who’s doing most of the caregiving and the other kid who lives three timezones away is the one with the biggest, deepest, sharpest opinions about mom or dad’s care, right. But they’re not actually doing the work, and this is the sort of thing that needs a, you know, family meeting, let’s organize this.

Connolly: That’s exactly right. One of the things that’s critical is for us to think about and prepare for aging much sooner than we do. And then to have those conversations as families and in our relationships to say, “Okay, what’s expected of whom, and what’s fair in terms of the allocation?” I was one of those siblings who was 1,000 miles away. And my sister was the lead caregiver and my brother was her chief deputy. And I really came to appreciate just how hard that work was, and tried not to be the person with really big opinions from 1,000 miles away, because they were on the front lines. And they did an incredible job, which was a gift, not only to my parents, but also to the rest of us siblings. You know, I mean, how we care is how we love.

Brancaccio: Now, I just want to restate something important that people misunderstand that you already weighed in on: Medicare does not tend to pay long-term care, unless you’re in recuperation mode after a medical event.

Connolly: Medicare does not cover long-term care, except for in certain specific rehab contexts. Generally, after, you know, as you’re rehabilitating after an acute care event.

Brancaccio: So if you don’t have a broken hip, you’re living along, but you can’t live alone. Medicare is not going to pay for that in these United States.

Connolly: That’s correct. And the other way this shakes out that really was kind of a revelation to me, as I learned more about it, was that if you have cancer, and you’re getting chemo, or if you fall and have a broken hip, Medicare will cover a lot of the care for those conditions. If you have Alzheimer’s or some other kind of dementia, and you need more custodial care, or more help around the house to make sure you’re not leaving the gas on or something like that, Medicare doesn’t cover that. And so families are really pretty much on their own for cognitive incapacity kinds of care, which is a very significant issue in terms of caregiving.

Brancaccio: Once upon a time, people who had foresight would take out long-term care insurance, but the economics of that is out of whack — it’s expensive.

Connolly: It’s very expensive. Not many people have it and was one of the parts of the Affordable Care Act that was repealed. What we need is a better social support system for people living deep into old age, other than just for the acute care events of old age. There’s a tremendous amount of money going into old age care of various sorts. But what we haven’t done is think about how best to allocate those funds so that they’re best spent improving quality of life and quality of care for the intended beneficiaries.

Brancaccio: Yeah, I mean, nursing homes get a lot of the money from people who live there, they also get, you’ve seen estimates, maybe $100 billion a year from taxpayers, but you think not enough transparency about where that money destined for nursing homes really goes?

Connolly: We don’t know how much of the $100 billion in taxpayer dollars that nursing homes receive, actually go to caring for and the benefit of residents. We should know that as consumers and as taxpayers.

Brancaccio: And then it’s your sense that we know maybe even less about money going into the assisted living companies, even more so than nursing homes?

Connolly: That’s correct. Nursing homes are regulated at the federal level, and they have to submit a lot of data and you can measure apples to apples to the extent that the data that are submitted are accurate, then you can compare one facility to another. But with assisted living, that’s regulated at the state level, and it’s very different from state to state and often from assisted living facility to assisted living facility. So they operate under different rules. And we don’t collect any sort of uniform data about their quality, so that consumers can say, “Oh, at place A, they’ve have a great track record on this versus place B where the track record isn’t so good.” So it makes it very difficult for consumers. And one thing that comes as a huge surprise to consumers is that they can be kicked out. They can buy into an assisted living facility and then be kicked out for various factors.

One other thing that I’ll say is that even people with a lot of education and a lot of resources find navigating old age really complicated, whether it be care, or facilities, or the financial issues, or the navigating of autonomy or safety interests. And we need to give people better guidance to do that, because everybody’s aging all the time, everywhere. And all of us have aging happening in our families. And so people need more help with it. And we need to talk about it more,

Brancaccio: You write about the tension between protecting older people and their right to their own autonomy — safety versus autonomy. You take both very seriously. But they’re in a kind of tension, in some sense, right?

Connolly: That’s exactly right. You know, there’s a wonderful saying that we want safety for the people we love, but autonomy for ourselves. And it’s really true, and you can kind of feel it with the people you love. You want them to be safe. You know, my dad, we really wanted him to have a life alert. And he was like, “That’s not gonna stop me from falling.” And, you know, he had a point. The interests are really significant. And, you know, research suggests that overriding older people’s rights to make them safer can actually undermine wellbeing and safety. Most people are familiar with the question of, “If an older person is not a safe driver anymore, when do you take away the keys?” That’s a kind of common conversation. But we’re not having conversations about issues like, if somebody wants to live alone at home, and is really unsafe there, what’s the right thing to do? Or if someone has a new romantic partner that doesn’t seem to have their best intentions in mind, and maybe even is taking their money, what’s the right thing to do if it brings the older person joy? When should family or society intervene in that kind of a situation? Those are really complicated ethical and philosophical questions, that again, we don’t provide either families or policymakers enough guidance on.

Brancaccio: I mean, it’s been said, if you test cognitively fine, in a sense, you have a right to be stupid with your own money, but maybe with limits, right? Because it could affect your medium term wellbeing if the money’s run out for your own care, because you decided at age 89, that that charming 39 year old needs a lot of gifts from you.

Connolly: Right. And the question is, when’s the right time to intervene? Because all of us have the right to make stupid decisions throughout our lives and the government, and often our families, are not intervening in those bad decisions. So at what point is there a duty to intervene, or is there a right to intervene, in an older person’s life? Who presumptively has the capacity, at least legally, to keep making decisions for themselves? So it’s a really complicated question. And as you alluded to, if you’re giving away all them money to that cute 39 year old, suddenly, you might not have enough money to pay for care, you might lose your house, you might lose everything you own. And these kinds of issues also divide families, because often family members have very different views of them, which is another reason to communicate about these kinds of issues early on. Because that way an older person can say, “Oh, if I start making decisions like that, that are going to lead to a worse quality of life and me having fewer choices about what I do, where I live, what kinds of care I can purchase, etc. Then please intervene.” If we have these conversations earlier than that gives us an opportunity to say, “Oh, I know what mom or dad would want under these circumstances.” But if we don’t have the conversations, then often your families are flying blind and trying to guess.