Live long and flounder: An aging expert on the looming crisis of our longer lifespans

First, the good news. As author, MacArthur Fellowship recipient and founding head of DOJ's Elder Justice Initiative M. T. Connolly writes in her new book, "For millions of people, there has never been a better time to be old."

Over the past century, we have expanded our average lifespans by an incredible thirty years, and we've done it with astonishing advancements in medications and other interventions to improve our health and mobility. 

Now, here comes the really bad part. Our collective aging is wildly outpacing our social, financial, medical and caretaking abilities. In "The Measure of Our Age: Navigating Care, Safety, Money, and Meaning Later in Life," Connolly lays out some stark statistics. In a little over a decade, we will have more people in this country over the age of 65 than under the age of 18. People eighty-five and older are "the fastest growing segment of the US population." Half of them require financial assistance, and three quarters of them have some form of disability.

Already, 41.8 million Americans "provide an average of twenty-four hours of 'informal' or unpaid care every week for a person fifty and older." And while the challenges for individual elders and their caregivers are immense, socially, we are simply shrugging our shoulders and pretending this isn't happening. But the book is not a doom and gloom report. Rather, it's a practical guide to facing an ignored dilemma in order to manage the elder care of our loved ones' and ourselves, laying out how we can as a culture change the narrative before it's too late.

Despite what Elon Musk has warned, the idea that "low birth rates is a much big­ger risk to civ­i­liza­tion than global warm­ing," is false. But it is true that our rapidly graying population and willful ageism is creating a crisis that's only going to accelerate in the next few years, even in spite of a slipping average lifespan in the U.S. (Additionally, the risk anthropogenic climate change poses to civilization cannot be overstated.) Throw in the deeply complicated burdens of caregiving — often fraught with profound financial strain, painful isolation and at times, intergenerational abuse — and it becomes clear, aging poses significant problems on multiple fronts.

Having experienced the illnesses and deaths of my stepfather, mother and mother-in-law — and a father living with dementia — over the past three years, I've learned firsthand the brutal toll of growing old in America. So I was grateful to talk via video chat recently with M. T. Connolly about what we don't understand regarding the tradeoffs of our longer lives, why we're wildly ill-equipped to manage our aging population and what still gives her hope as we all face the prospect of growing older. 

This conversation has been edited and condensed for clarity.

You open this book with some statistics that shocked me. The numbers are staggering, in terms of how much longer we are living, how few resources we have and what we're in for, as a country. Talk to me a little bit about some of the things maybe that surprised you, even as an expert.

Those numbers totally inform how hard caregiving is, and how much harder it's going to be. I was really shocked also. I had been working in the field for a long time, and mostly seeing what was going wrong, but then started making the connections between these really common issues of aging, like care and money and balancing autonomy and safety.

I was seeing at the Department of Justice the really negative outcomes, things have their roots in very common problems. Then as I started to do the research, like you, I was gobsmacked. I knew that people 85 and older were the fastest growing part of the population, but that that number is going to almost triple from 2019 to 2050 is pretty amazing. The baby boom, we ain't no babies anymore. It's an aging boom. The outer edge of the baby boomers are already turning 75. By 2030, one in five Americans is going to be 65 and older. That's an astonishing shift in terms of the demographics. 

You have that, and you have the fact that about three out of four people 85 and older have some kind of functional disability, and many are going to need care. Then the question is, where does all that care come from? One thing that comes as a big surprise to many people is that Medicare does not cover long term care. The CLASS Act, which was the part of the Affordable Care Act that covered Long Term Care, was repealed. Most private health insurance plans don't cover long term care.

People are really on their own in terms of how to figure this out if they are not people of significant means. Even if you have significant means, often you're on your own because people don't want to go to nursing homes. They don't want to go to residential care. Other things are going on there, largely because we don't have a system that we want to rely on. 

The numbers that you throw out about the number of people who are caring for their parents and the number of hours that they are spending per week doing it — my spouse and I both did it and I am still shocked. Talk to me about what it looks like on the other side for the for the caregivers, because a lot of people my age and younger don't know what they're in for.

One thing that really struck me is how alone people are in this, because we don't talk about it. And care should be a team sport. When I was raising my kids, I had my village and it was collective. When you're trying to decide what schools or what teams or what activities, you go to the neighborhood cabinet. We don't have that with aging. People are so alone, and get increasingly isolated.

Vivek Murthy, the current Surgeon General, has talked a lot about loneliness and isolation, including of older people. But we don't talk about how alone caregivers are, too. There isn't the concrete support people need about how to how to provide care. 

For example, dementia is a tremendously complex illness. We need to understand what it what it means to have dementia, how many different manifestations and the caregiver relationship. What if you're estranged? What if this is a really fraught relationship? What should the expectations be? I think we're making a lot of assumptions as a society, that come as a complete surprise to caregivers. That was another set of data that I found shocking, that for so many, they didn't anticipate becoming a caregiver. They didn't plan for it. Sometimes they don't even call themselves a caregiver. But suddenly, somebody ends up in an ER, and there's a call like, "Okay, come get Mom."

This is aligned with something else you talk about, that people don't understand the heterogenous nature of being old. We have certain benchmarks for children. We don't have them for the elderly. Everybody's mom is different. Everybody's grandma is different. Tell me why we don't have a system that is prepared for that.

We can trace it back to our ageism. We haven't caught up with our longevity in all kinds of different ways. One huge way is culturally. We want to get old, but we don't want to be old. We feel all this fear and bias and disgust and denial about getting old. That doesn't really serve us all that well, culturally, because that gets into our institutions. Then it is reflected back at us, that resistance to even contemplating aging. We need to be able to contemplate what it means to age, both the hard and the good stuff, in order to really grapple with it on a policy level. Then we take it into ourselves. 

We know that we shouldn't be feeling racism, sexism, bias about gay people. We know that in a visceral sort of way. We don't feel that way about aging. We feel like it's okay to be horrified about and feel all this animus about aging. It's a double whammy, it's a problem culturally, because it means we don't have the institutions we need and the support we need. And for us personally, it's actually devastating. 

Becca Levy, an epidemiologist, has done research suggesting that the people who hold the most ageist views live seven and a half years shorter than the people who hold the most positive views about aging. The age-centered bias is tremendously complicated for health systems too, which Levy estimates costs us $63 billion in excess annual spending. If we take the negative stuff into ourselves, it's like a toxin. It makes us sick, and makes us less healthy in mind and body. It makes us resistant to looking at aging. Then we have systems that are wholly unprepared, notwithstanding this enormous train that's barreling down the tracks toward all of us.

I have three kids who are young adults themselves. One thing that was sort of wonderful for me was to see that it resonated for them. I'm talking to younger people about it and lot of them are worried about their parents who are caregivers, because they see the stress of it. They see how arduous it is. And then the parents think, "I want to protect my kids from this." They're terrified about inflicting that on their kids. So I hold hope.

We need a language to be able to talk about it. We need to be able to demand better of policymakers, and lawmakers and arbiters of culture to say, "No, we have to talk about this and we can't be so alone in it." 

We think of the big bad as being these institutions and homes and care facilities and a lot of them are terrible. But you also talk about the abuses that are perpetuated by individuals and family members — whether it's financial, physical or emotional. Why do we need better systems in place to circumvent those kinds of traps?

The broken systems make it worse and there's never an excuse for abuse or neglect or exploitation. There's never an excuse, but I think it's really important to also pay attention to how the broken systems exacerbate it. With that as a backdrop, we don't really have support for caregivers. 

Our mental health system is also pretty broken, as is our drug treatment system. If you look at that combination, a lot of older people are supporting younger relatives — kids, grandkids, nieces, nephews, whatever — who they've supported for a long time, because they love them, even though there's a mental health issue or developmental disability issue or drug issue. Then, as the older person ages deeper into old age, and sometimes into frailty, sometimes the tables turn, and they need care. But they want to stay at home, they feel loyal to the younger person they've been trying to support, and suddenly it shifts so that the younger person falls into the position of being a caregiver. That can work for a little while. But as the care needs mount, it's often a recipe for disaster. 

I think we haven't recognized it. We don't have good data on it. We don't talk about it. I get the reluctance to talk about it, because we want to say, caregivers should be hallowed. And also, a lot of people aren't equipped to provide decent care. Part of it is that social pressure to say, "Okay, now you have to be the caregiver," because there are very few options that are affordable. That pressure can be really insidious, and really counterproductive in terms of health and well-being. People need to perceive that they have choices, and that they have support so that they're not so alone.

I feel like we should have an organization sort of like AA or NA. We should have Caregivers Anonymous as a very robust structure, because it's so complicated, and people derive real benefit from talking to one another. Forty-one million people [are caregivers]. That's more than the population of California. There are an awful lot of people in the workforce who are caregiving, and struggling with caregiving. 

We need a much better system of long term supports and services or home and community-based services. We need a more robust suite of options in the community, so that people who are trying to do caregiving have release valves and options so that they're not carrying the whole thing themselves. [We need] respite care and education and readily available groups. There are places, AARP, Family Caregiver Alliance, Caring Across Generations, trying to shine a light on caregiving. But as a broad cultural matter we're not getting traction yet. 

You spend the second half of the book talking about some of the the options we have. How can we make it better, as individuals, and collectively, looking at our parents future's looking at our own futures? I don't want my kids to spend their childbearing years like this. How do we change it?

I describe this book as a declaration of interdependence. We have this illusion of independence that really harms us. It's an illusion, it's not true at all. In any phase of life, it's not true. 

How I came to look at it is that we need things at all levels, from the level of culture to systems to community to consciousness. At the cultural level, I really think we need to be less tolerant of ageism. We need to say, okay, this is a bargain we struck. We want to live longer, that's an extraordinary thing. It's an extraordinary victory. Now we have to deal with the consequences of that. 

We have to build the systems that we need. In terms of the systems we need, there's better support for caregivers. There are better options, like long term services and supports. There's having a better long term residential system that people aren't terrified to use, which means better stewardship over the funds, better accountability and doing what we know works. These nursing homes, and CCRCs get more than $100 billion dollars in taxpayer money a year. We don't actually have a great understanding of how those monies are spent, and we don't even know who owns some of those places.

Culturally and overall, we've fallen into a trap as a society where we think we can just keep eviscerating services and it's going to be fine. In fact, what happens is that problems flow downstream, so that cops and prosecutors deal with them. We have this crisis and violence driven response system. Then we say, "Oh, God, look at all the problems!" when we never really got out ahead of them. We have a pretty decent sense of what we need to do to alleviate some of these issues, and we don't do it. Then we're shocked that there are bad outcomes. 

As a culture, we need to be less reactive and more proactive. We also need to do that in our own lives and families. We need to start having the hard conversations. We need to have them way earlier. We need to say okay, what do I want my old age to look like? What's important to me? How much money do I have? How do I want to allocate it?

Generally, there's someone in the family maybe who's better at helping with money, and maybe somebody who's better at fighting with insurance companies and somebody who's better at maybe arranging caregiving or dealing with parents. How do we want to allocate that? What's important to us is tremendously important. We have the social structures and what's called choice architecture that takes us to retirement. But we don't have much for this prolonged, late chapter of life to help us through 20, 30 years. 

There's no template of how to really live a meaningful life yourself as an older person of value and service and connection. And there's very little conversation about how the generation below then plans for and prepares for being in conversation of care. 

Right, and not wipe out the entire generational wealth, which is even more urgent in families of color. Women and people of color bear the brunt. 

All that said, I was really surprised and hopeful by writing the last chapter of the book. Talking with you gives me hope, because I think there's a cohort of us who are realizing that we have to figure out how to talk about these issues in a public way.That's really my biggest hope for this book. There are no silver bullets, but there are better approaches and there are ways to talk about it.

Steve Cole of UCLA says we have a lot of unrealized control over how we spend our time which is how we spend our lives. Where we put our attention is how we experience existence. We do have a good amount of control about that. What I was really struck by is not only that there's some really concrete ways to make sure that we can focus on the things that matter most to us, and not get lost in all the noise of life. To say, "Okay, what matters to me?" In terms of what matters to most people, connection.

It's two pronged: people you love, and taking care of those relationships, which requires work and intentionality and thoughtfulness and communication. And then, also just being with other people, in our book clubs and community gardens, just being in the world. Isolation and loneliness are really bad for our health. Having ways to spend our time that have purpose for us. Here too the data are pretty robust. 

I think we miss that old age can be this period where we explore and have expanding consciousness and try new things, and really think about sort of the big mysteries of the universe in a way that is both scary and really exciting and kind of wonderful. There's this notion of creativity and play, and thinking beyond the usual boundaries that we often restrict ourselves to and sometimes we don't feel like we have time to move beyond them. It's really a question of flipping things to say, "How do I want to use In my my precious time?"

We shouldn't be giving up on people. There's still human potential, we just have to kind of redefine it a little bit. Anthropologists talk about us, as Homo narrans — that we are narrating humans. How we tell the story of our lives is how we experience our place in the world, and how we define our existence and make meaning of the hard things that happen. It's true individually, but it's also true collectively. How we tell stories with other people is how we create a shared understanding of the world and shared sense of meaning in it — and also exploration of new ways of thinking and different approaches. I found all of that extraordinarily hopeful. Because that's something we all have control over, no matter how screwed up our systems are.