Living longer should be a gift. Why doesn’t it feel that way?
Update: 2024-09-05
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Every day, 10,000 people turn 65 in America. With unpaid family members bearing the brunt of the work and an already-stressed care workforce, the U.S. faces huge challenges to support the elderly. Labor organizer and author Ai-jen Poo talks to Apple News In Conversation host Shumita Basu about how America can give everyone a chance to have the aging experience they deserve.
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Transcript
00:00:00
This is Inconversation from Apple News.
00:00:06
I'm Shemetha Basu.
00:00:08
Today, how to make aging better in America.
00:00:14
Recently on this show, we've been bringing you the voices of experts who are thinking about how to fix big problems in this country.
00:00:31
We heard as reclines ideas on how to fix politics, Emily Oster's proposals to help working parents mark fitment suggestions on how to make our food system better.
00:00:41
Today, we're turning to an issue that impacts or will eventually impact almost every single person in this country, aging.
00:00:49
I took care of my father who had dementia.
00:00:52
I take care of my 83-year-old mother.
00:00:55
I live in Boyton Beach, Florida.
00:00:58
I moved down here three years ago to help take care of my father.
00:01:01
I live in New Mexico.
00:01:03
I fly to San Francisco on a regular basis to arrange my mom's care.
00:01:08
I saw firsthand how demanding it is to care for someone.
00:01:13
Care is incredibly expensive.
00:01:15
It costs 262,800 dollars to take care of somebody 24 hours a day, 7 days a week, at $30 hour.
00:01:26
It is very overwhelming for someone like me.
00:01:28
Very difficult when you have not had to get services your whole life and all of a sudden you need help and you don't know where to go, what's the answer?
00:01:38
Those are just some of the calls we got when we asked listeners to tell us about their experiences as they've gotten older or had to care for in aging loved one.
00:01:47
Multiply these stories by millions and you'll start to get an idea of the challenges ahead.
00:01:52
The U.S.
00:01:53
Census estimates that by the year 2030, 20% of our population will be over 65 and that number is going to continue to climb as advancements in medicine and technology allow people to live longer than ever.
00:02:07
The reality of living longer is actually a blessing but it's really challenging unnecessarily so right now because we have not done the work to prepare,
00:02:20
to be able to support a dignified quality of life as we live longer.
00:02:26
That's I Jen Poo.
00:02:28
She spent a lot of time thinking about and advocating for the care economy.
00:02:33
She's the president of the National Domestic Workers Alliance, the executive director of caring across generations, and the author of the book Age of Dignity, preparing for the elder boom in a changing America.
00:02:45
I Jen's book came out almost a decade ago in 2015 but she says many of the same problems still exist and she's got new ideas on how we can be better prepared to meet the moment.
00:02:58
Every single day we have 10,000 people turning 65 in America, a person every eight seconds turned 65.
00:03:13
So in this country we've essentially added an entire generation onto our lifespan and the question is how will we adapt our culture, our systems and our policies to support it.
00:03:21
We have yet to do that and it's creating a lot of pressure on us because this growing aging population is truly significant and transformative for all of us.
00:03:33
Can you say a dignified quality of life to find that for us?
00:03:37
What do you mean by that?
00:03:39
Well, I love the way a tool go one day writes about it in his book Being Mortal.
00:03:44
He talks about being the author of our own story for as long as possible.
00:03:49
And that is really how I think about it.
00:03:52
When I think about dignity, I think about the ability to live a life on your own terms and to feel a sense of agency and belonging to feel connected to the people you love,
00:04:11
a community and to be able to contribute in meaningful ways.
00:04:18
So tell me as we're having this conversation, I mean, how worried do we need to feel about what might be facing our parents soon,
00:04:29
what we will someday face ourselves, when it comes to getting the care that many of us end up needing toward the ends of our lives?
00:04:37
Right.
00:04:38
Well, I think at some point all of us will need care and we have our entire lives.
00:04:44
We've just not really thought about it.
00:04:47
Former First Lady Rosalind Carter famously once said that there are only four kinds of people in the world, people who are caregivers or will be and people who need care or will need care.
00:05:00
And I love that way of thinking about it because oftentimes all of us are more than one of those identities at any given moment.
00:05:07
And it really is about how we support and recognize that really important role of caregiving in our society.
00:05:16
Right now, we have 53 million family caregivers who are caring for aging or disabled loved ones.
00:05:25
And most of them are providing that care on top of working full time.
00:05:29
Right.
00:05:30
And they're not being paid for that care work.
00:05:32
It's unpaid family care, exactly, exactly.
00:05:36
And depending on who you ask, that unpaid care is worth almost a trillion dollars per year.
00:05:43
And then you also have about nine million professional care workers who work across child care and direct care.
00:05:52
If we were to just count direct care for older adults and people with disabilities, we have about six million professional care workers whose job it is to get up every day and care for our aging loved ones and our disabled loved ones.
00:06:07
And that work, unfortunately, has been so profoundly undervalued that we have such a hard time retaining and attracting workers into this field of care.
00:06:19
Just for a moment on the subject of who is doing this work, long term care, give us a sense of who this is, paying a picture for us of who's doing this work in America right now.
00:06:31
Yeah.
00:06:32
So more than 80% of direct care workers are women.
00:06:37
And it's disproportionately women of color.
00:06:41
The statistic in terms of home care workers, 33% of the workforce is foreign born.
00:06:49
So there are high numbers of immigrants doing this work.
00:06:52
And in fact, it's difficult to imagine how we would care for each other and the people we love in this country without a really strong immigrant workforce.
00:07:03
Many people come to direct care because they cared for their own loved one and then got drawn into a community in a world of care that they became very invested in.
00:07:15
And it is also an occupation that because the wages are so low, the turnover rates are quite high.
00:07:23
So we have a 26% turnover rate in home care today.
00:07:27
And I know so many care workers who really see it as a calling, like they do this work for no other reason, but that they really believe in it.
00:07:38
And a lot of times, many of them are forced to get jobs in retail or fast food because they pay a lot more these days than professional care work.
00:07:47
The annual median income of a home care worker in the US today is $23,000 per year.
00:07:55
Try to imagine paying for housing food transportation for yourself and your family on $23,000 per year.
00:08:04
And that's just we're just talking about paid labor.
00:08:06
That's right.
00:08:07
We mentioned earlier, all the unpaid labor.
00:08:10
Huge amounts of unpaid labor happening and increasing numbers of men as unpaid family caregivers, 36% of family caregivers today are men.
00:08:22
Because of our cultural norms around masculinity and care, it's often harder for men to seek out support to ask for help.
00:08:31
And so it can be a particularly isolating experience for men.
00:08:36
But yes, we have a huge number of overstretched working family caregivers holding care together for so many families.
00:08:45
And 11 million of those family caregivers are what we call the sandwich generation.
00:08:52
That metaphor of a sandwich I've stopped using because it feels too gentle for the dynamic.
00:08:57
Feels more like a panini when you're dealing with caring for young children at the same time as aging parents and loved ones.
00:09:06
It really is such a pressure cooker.
00:09:09
And oftentimes at the height of earning pressure on the part of working age adults.
00:09:16
And so 11 million of us in that sandwich is also a big part of how we're caring in this country.
00:09:24
And then we mentioned the professional care workforce as well.
00:09:28
There's a social scientist named Jessica Kalarka, who is famously quoted for saying other countries have a safety net and the U.S.
00:09:36
has women.
00:09:36
Sure.
00:09:37
I've heard that one.
00:09:38
Because of just the disproportionate amount of care that women hold as unpaid caregivers and also in the professional care workforce.
00:09:49
If you're getting older here in the U.S.
00:09:51
and you need some kind of long-term care, there are two main options.
00:09:55
One is to be able to stay in your home and get the support you need there.
00:09:59
An overwhelming majority of people say this is their preferred option.
00:10:03
The other is to go to a nursing home or assisted living facility.
00:10:07
Really the schedule is not on your terms in a nursing home setting.
00:10:12
You eat when they tell you you eat.
00:10:15
You get time in the sun if you're lucky when they tell you that you have time in the sun.
00:10:22
You go to the bathroom and get bathed when they tell you.
00:10:26
And it's the stripping away of a sense of agency and independence in that context is what a lot of people talk about as the hardest.
00:10:40
But aging at home is hard in other ways.
00:10:43
Loneliness and isolation are big risks, both for aging people and their caregivers.
00:10:49
And in many communities, especially in rural areas, it can be hard or even impossible to find affordable home care.
00:10:56
Our listeners told us just how challenging it's been for them.
00:10:59
Here's Nelson in New York City talking about the support he needs taking care of his father.
00:11:04
I take care of my 71 year old father about two and a half years ago.
00:11:10
He had a fall and because he was on blood, the nurse, he had bleeding in his brain, the state has only allotted him 20 hours of care, even though he requires round the clock care.
00:11:23
He lives with me.
00:11:24
So I do all his shopping, I book all his appointments, I take him to therapy and pretty much everything.
00:11:33
But the state seems to think that 20 hours is enough because they base it off of mobility and not any other mitigating factors.
00:11:43
Another listener, Amy, who called for Massachusetts told us how difficult it is to figure out how to access the right programs.
00:11:50
What I've been grappling with for the past month is the mass health application and it is such a complicated program and being a working mother of two responsible for my mom's well-being,
00:12:06
not just this application.
00:12:08
It is overwhelming and I ended up having to pay a law firm $12,000 to help me put this application together because I could not split myself enough ways to get it done.
00:12:26
This is such a huge problem impacting so many people, but Igen says this is solvable.
00:12:32
These are all challenges that we actually know how to address.
00:12:35
There are volumes of solutions and it really is about the political will, the vision, the determination to turn towards these challenges as opposed to denying them.
00:12:50
On the top of her list of solutions is getting home-based care to more people and making sure that the people working in this field are paid a fair wage.
00:12:59
One way to do that she argues would be to expand Medicaid.
00:13:03
Medicaid is the government's health coverage for people with low incomes.
00:13:07
The way it works now is you can get home-based care through Medicaid but eligibility varies by state and at any given time the wait list has as many as 700,000 people and can last as long as three years.
00:13:20
Now there's a bill in Congress that Igen wants to see passed that would expand Medicaid.
00:13:26
Its advocates call it the Better Care Better Jobs Act.
00:13:29
So it makes an investment in Medicaid, home and community-based services that will address the waiting lists, the hundreds of thousands of people who are waiting for care who are currently eligible and it will allow us to raise wages for the care workforce and that is both urgent and long term so essential to our ability to care for our aging loved ones in this country.
00:13:55
Without a workforce there are no services.
00:13:58
These two questions of access and workforce have been kind of treated separately in our policies over the years but there's just no way of making sure that people can get access to care if there's no one in place to be able to support that care.
00:14:16
And so this bill is about investing in the kind of workforce and infrastructure programs that will really help to build out the foundation for home and community-based care and communities around the country.
00:14:30
So what's its current status in Congress?
00:14:34
So a version of it passed in the House two years ago and we are really anxious to bring it back again in the next Congress and it had a huge amount of support.
00:14:46
I think the entire Democratic caucus supported it and I think what's interesting about Medicaid home and community-based services is in the American Rescue Plan which was the kind of big rescue and relief bill that Congress and President Biden and Vice President Harris ushered through to kind of stabilize our economy coming out of the pandemic.
00:15:09
There was a big investment to stabilize those services for people who rely on them currently and there was a fear that Republican-controlled states would not take up that funding and it would end up becoming very partisan and just the opposite was true.
00:15:27
All 50 states took that funding and have used it more than half of states have used it towards wage enhancements for the workforce and I think that's such a good sign.
00:15:41
That's the other thing.
00:15:42
These policies are not partisan and I think when you really break it down people understand that this is precisely the role of government is to complement what we are giving and contributing to society.
00:15:58
I guess I would say that's probably the only friction point that I've observed as things like this have played out on the political level at least, a disagreement over not that people should be cared for and that workers should be paid but a disagreement about the role of government I suppose and all of it and the pushback you often hear to funding programs like this and services like this is well where should the money really be coming from?
00:16:26
What's the counter-argument to that?
00:16:27
Well, we're currently paying huge amounts of money for care in incredibly costly and inefficient in effective ways.
00:16:37
For example, the cost of home and community-based care is a third of the cost of institution-based care and it's where most people prefer to age.
00:16:49
Is it really a third of the cost?
00:16:51
Why?
00:16:52
Yes, and that's why governors are such supporters of Medicaid home and community-based services and want to really build out that infrastructure is because a huge amount of governors state budgets go towards the Medicaid program and most of it goes towards a very expensive institution-based care.
00:17:13
Expanding Medicaid would help more people with low incomes access home-based care but that leaves out the many others who aren't eligible for Medicaid who still can't afford the high costs of long-term care.
00:17:26
Now you might think that Medicare, the federal health insurance program for people over the age of 65, would cover at least some long-term care services.
00:17:35
For things like someone to help you bathe or manage medication and doctor's visits, but Medicare doesn't offer any of these benefits and this comes as a surprise to many people.
00:17:45
A recent survey from the Healthcare Research Group, KFF says 45% of seniors incorrectly assume that Medicare would pay for their care if they had a long-term illness or disability.
00:17:57
So if you need long-term care, you have to either completely deplete your assets to be eligible for Medicaid or pay out of pocket for very expensive long-term care insurance in the private market,
00:18:11
which only 1 in 10 Americans can afford, or you just pay out a pocket for it in an average room, private room in a nursing home, the average cost of a private room in a nursing home is about $100,000 per year.
00:18:25
And 60% of Americans earn less than $60,000 per year, so the numbers don't really add up.
00:18:33
Igen argues that we should redesign Medicare to cover long-term costs.
00:18:38
I think that Medicare is as popular as it is as a program because it really works and because people spend their lives contributing to it and see it as a benefit that they've earned.
00:18:53
And long-term care is really just an extension of health and well-being as we age.
00:19:01
Ultimately, I believe that social insurance is the perfect mechanism for something like long-term care.
00:19:09
Social insurance works best when there's a large risk pool.
00:19:15
And at least 27 million of us are going to need long-term care by the year 2050.
00:19:21
And my big idea is this idea of what I call universal family care, which is the idea that we would have one social insurance program that we all contribute to,
00:19:33
that we can all benefit from that would help us pay for child care, paid family and medical leave when we need to leave the workforce to care for ourselves or a loved one,
00:19:45
and aging in disability care, long-term care.
00:19:49
And that would truly generate the biggest risk pool in history.
00:19:54
Really speaking to the Penini Press group that you were talking about, too.
00:19:58
It's really looking at our families and our communities as intergenerational units that will need different kinds of care at different times.
00:20:08
But in the meantime, Medicare should have a new benefit to support long-term care.
00:20:14
Let's turn to your next idea, which I really, really love and feel so doable, like just do it tomorrow kind of doable, create more care centers that offer both older adult and young child care in the same place.
00:20:30
Most of all, does this exist, do we have this right now, I mean, what would this look like?
00:20:35
It does exist.
00:20:36
I first heard about it a decade ago in Hawaii where they had created adult day care centers in conjunction with child care centers in the island of Oahu.
00:20:49
And I think they have it grown to have more facilities like that.
00:20:53
And I just met at a child care innovation summit last month, I just met another non-profit organizational leader who is building similar intergenerational day care facilities in California and in other states around the country.
00:21:09
So I think you might have your wish, which is that this might be spreading.
00:21:13
Oh, wow.
00:21:14
It makes me really happy to hear.
00:21:15
I mean, it feels like, I don't know, it feels like a no-brainer in some ways, right?
00:21:20
So these are things that we need, I just see so much to-way benefit there.
00:21:24
Oh, my mom is, she just turned 76 and she cares for my niece, who's nine,
00:21:35
and the amount of joy.
00:21:38
So my niece obviously goes to school, but then after school she has kung fu classes and other programs that she's a part of, and my mom affectionately calls herself grandma Uber and taking her to her activities,
00:21:55
but the joy that my mom has of being embedded in a part of my niece's life in the way that she is, is like a whole new level of joy that I am seeing in her for the first time in her life.
00:22:11
And I'm seeing how my niece is also so impacted by having my mom in her life in such a consistent and profound way.
00:22:19
My mom always brags about how my niece tells her to be careful when she's walking down the steps and how she's actually taking care of her too.
00:22:29
And that intergenerational interdependence is exactly what is best in our lives that we need to nurture and invest in,
00:22:39
and I think it will do wonders for our quality of life as we live longer.
00:22:45
It's so, so sweet.
00:22:46
I, um, I spent many years as a kid.
00:22:51
My mom used to take me, I must have been maybe eight or nine years old when we started.
00:22:55
Used to take me and my brother to a local nursing home, and we went to the same nursing home for maybe seven or eight years straight.
00:23:01
Oh, you did this, this is amazing.
00:23:04
It was, you know, I guess I should really ask my mom exactly why she did it.
00:23:08
I think I know why she did it.
00:23:09
We didn't have a lot of...
00:23:10
Why do you think?
00:23:11
We didn't have my grandparents here in this country, we didn't have a lot of elder family.
00:23:18
And I think maybe on some level, she just felt like all of our youthy goodness was sort of being wasted and not being fully enjoyed by elder folks and also,
00:23:28
I mean, the benefit went the other way too, right?
00:23:31
So I just, anyway, this one really feels so doable and it excites me to hear you say that there are more places now where this is being explored as a real option.
00:23:41
It's happening.
00:23:42
It's really happening.
00:23:43
And, and the idea that we would be talking about care more holistically and intergenerational is also a big breakthrough of this time and care was never,
00:23:56
ever meant to be an individual endeavor.
00:24:00
It was always meant to be something that involved family, friends, neighbors, workers, community.
00:24:08
And some of the most powerful models are exactly what you describe.
00:24:14
You going to these nursing homes with your siblings and your mom.
00:24:18
I, Jen, are there other big ideas that you have seen work, maybe even in other countries and in places around our country here that you think,
00:24:29
wow, if we could scale this up and scale this across America, it would solve a lot of issues.
00:24:35
So last September, I went to Bogota, Columbia to visit this incredible new program that they've established there called care blocks.
00:24:47
And what it is is they surveyed all of the unpaid family caregivers in the city of Bogota.
00:24:54
They're about 1.2 million of them and mostly vast majority women who really struggle with having access to jobs and opportunity in education,
00:25:07
all kinds of economic and other challenges because of their caregiving responsibilities and because of the fact that they don't have time or the ability to leave the person in their care in order to pursue these opportunities.
00:25:24
And so they developed this program that concentrates access to all kinds of services that caregivers need in their communities.
00:25:34
So within a 15 minute walking radius, you essentially go and you can bring the person who you're caring for, an older adult, a person with a disability,
00:25:44
even a child.
00:25:45
And that person will get care in the care blocks.
00:25:49
You bring your laundry and you drop it off and someone does your laundry for you.
00:25:54
And then you can sign up for a yoga class.
00:25:57
I watched an aquatic dance class where I watched 70 caregivers living their best life in an aquatic dance class in the pool.
00:26:06
You can sign up for therapy, you can get a doctor's visit, but then there's all kinds of classes in terms of financial literacy, GED, computer literacy and job placement and coaching.
00:26:22
And so it's just a place of opportunity that is concentrated in the neighborhoods where caregivers live.
00:26:31
I just, it's been almost 10 years since you wrote the age of dignity.
00:26:38
You wrote, let's remember, people getting older is not a crisis.
00:26:41
It's a blessing.
00:26:42
We're living longer.
00:26:43
The question is how we should live.
00:26:46
That's right.
00:26:47
That's exactly right, I've been talking about these issues for almost two decades now.
00:26:54
And I really feel like we have momentum toward solutions in a way that is unprecedented.
00:27:02
And we have more champions at the policy level.
00:27:06
Caregivers are in motion as an identity, really owning that identity.
00:27:13
The fact that we have caregiver influencers on TikTok who have millions of followers who are just caring out loud and that is magnetizing millions of people,
00:27:25
we are all breaking out of the isolation of what it has been like to care in a society that doesn't value it.
00:27:34
And that feels so hopeful to me.
00:27:37
I can feel what a pleasure to talk to you.
00:27:40
Thank you.
00:27:41
Igen Poo is the president of the National Domestic Workers Alliance and the Executive Director of Caring Across Generations.
00:27:51
You can find her book, The Age of Dignity, Preparing for the Elder Boom in a Changing America on Apple Books.
00:27:58
We'll include a link to it on our show notes page.
00:28:01
And thank you to our listeners who sent us their stories about caregiving and aging.
00:28:05
We heard from so many of you, and we really appreciate it.
00:28:07
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