Sarita  [9:36] Five years ago my father was diagnosed with Alzheimer’s. And it was a serious shock to my family when we realized that what seemed like just bouts of forgetfulness, it was actually signs of a much more serious disease. [10:00]

Meet Sarita Gupta. When Sarita’s father was first diagnosed with Alzheimers, her mother became his sole care provider. But her mother was dealing with her own challenge, she has osteoarthritis, a painful disease that severely limits her mobility. Sarita went back to her family home to spend time with her parents, that’s when she knew something had to change.

Sarita [10:21] And I realized that my mom was incredibly overwhelmed by all of the changes in her life, particularly that she was really managing like the loss of my father as the person she knew, both grieving and really having a hard time accepting the limitations that my father was expressing at the time. And so everything was overwhelming, I went home and I remember never seeing my childhood home in a state of disrepair. [11:01] 

MUSIC

Welcome to The Shape of Care, a podcast that explores the world of caregiving. In this series, we hear stories from caregivers and the people they care for, and from experts and activists. There are so many of us doing this work, but we’re not talking to each other. We’re just trying to keep it together. This podcast is a platform for that conversation. Hopefully, one that helps people feel less alone. I’m your host, Mindy Fried. 

Sarita Gupta got together with her mom and dad to come up with a plan. And as they talked, it became clear that the best option was for her parents to move in with her. It’s now been four years that they’ve lived together in a multi-generational home. Sarita’s parents live downstairs, and she and her husband and their 8 year old daughter live upstairs. 

Sarita [12:01] And so my husband and I are certainly in the sandwich generation, but often we refer to it as the “panini generation,” because we quite literally feel squeezed in the middle of the caregiving responsibilities and needs of my daughter and my parents. Best way to describe that is, I’m going to share a quick story. There was this day when we went to a nearby regional park. It was a beautiful day outside, the sun was shining, so we went out and my husband and I were in the car and my husband said “I’ll go park the car, let’s just drop your parents and, Suraiya my daughter, off.” So we got out of the car, my parents got out, my daughter got out, and my daughter, in that moment, saw the playground and she ran to the playground and my parents were just orienting themselves to the park and walking very slowly and I was running after my daughter, while also looking back at my parents saying “stay here, sit at this bench, I’ll be right back.” And that feeling of being just torn apart and not knowing which way to go, is really what it feels like when you’re in the sandwich generation as a family caregiver. You’re pulled in so many directions all at once that it can be quite overwhelming and it can also be a really beautiful thing. [13:28]

Living together has worked out for everyone.

Sarita [13:36] Frankly they take care of me too, as much as I care for them. They take care of my daughter and my daughter is really learning what it means to live in a cross-generational caring family. [13:50]

Sarita’s experience inspired her to co-create a national organization called Caring Across Generations. It aims to transform how we care for people, across the age spectrum. To make caring for families affordable and sustainable at every stage of life, including child care, long-term care for elders, and paid family and medical leave. Ai-jen Poo co-directs Caring Across Generations with Sarita. She’s also the Executive Director of the National Domestic Workers Alliance.

Ai-jen [:32] My story, in terms of how I got involved in this work, is that, one, I’ve spent the last two decades or so working with the workforce that we count on to take care of our families: the women who take care of our children as nannies and who take care of our parents and grandparents and loved ones with disabilities as home care workers. The way that I’ve been working with them is really around improving the quality of their jobs. [1:03]

Just like Sarita, Ai-jen understands these issues on a personal level.

Ai-jen [1:35] I was raised by my grandparents and had early experiences where they, after raising us and our parents, actually needed care themselves, in order to live independently and then ultimately to live with any kind of dignity. [1:55]

Ai-jen’s grandfather was put into a nursing home later in his life, against his wishes. She  was shocked when she visited him.

Ai-jen [4:17] What I saw was him sharing a room with about a half a dozen other people, and for some reason the light in that room didn’t work, so it was flickering and also mostly dark and half the people in the room were completely comatose and unmoving, completely still. And then the other half were just in extreme forms of discomfort and suffering and pain. [4:42]

Her grandfather was terrified. And he begged her to get him out of there.

Ai-jen  [5:06] And so I think I’ll never quite forget the feeling and the image of seeing him, somebody who was a hero to me my whole life, in that position of vulnerability and suffering. He, he deserves, everyone deserves, so much better. [5:27]

Ai-jen’s grandfather stayed in the nursing home until he died. Many years have passed and Ai-jen’s grandmother needs care. But her situation is different. Her grandmother still lives in her own home, even though she’s become more frail and has trouble walking. She can stay there because of the support of two homecare workers.

Ai-jen [6:19] Mrs. Lee and Mrs. Sun make sure that she has nutritious meals, she’s Chinese so her cultural, food and nutrition, diet all these things about her way of life that Mrs. Lee and Mrs. Sun are able to maintain are so important. And she’s able to stay in the very same apartment that she shared with my grandfather for many years in a Chinese retirement community that’s across the street from a Chinese grocery. So there’s just a way in which she’s able to have a sense of familiarity and connection and community and culture, there’s a thread between the life that she’s known and the life that she has today that is so important, I think her sense of dignity and well-being. [7:20]

These two home care workers – Mrs Lee and Mrs Sun – have helped Ai-jen’s grandmother maintain the quality of her life. She gets out to see friends. She eats food she likes, she goes to church regularly. And she never misses Bible study. 

MUSICAL BUTTON – SILVER LANYARD (SAVED)

Medicaid is the largest funder of nursing homes. Most states allow most states allow Medicaid funding to support home care, as well. This is working well for Ai-jen’s grandmother. According to the American Association of Retired Persons, it’s more cost-effective for people to stay in their own homes. It’s also what most people want. According to the Pew Research Center, baby boomers are reaching retirement age at a rate of 10,000 every day. That’s 4 million people turning 65 every year. And this generation is living longer than ever before – that leads to an even greater need for home care services. 

Ai-jen [15:25] Advances in technology and healthcare have just allowed for us to extend our life span by 20 years or so since the 1930’s. So we’ve almost added a generation, so much so that my grandmother’s generation of 85 and older is the fastest growing demographic in our country. [15:50]

At the same time, millennials are turning 35 and they’re having families of their own at a rate of 4 million babies every year.

Aijen [16:08] So, on both ends of the generational spectrum, we have a huge need for care and on the elder care side, in particular, there are all kinds of health care needs and other supports that are necessary that just don’t exist for this additional 20 years of life that we’ve added onto our reality in this country, including our caregiving infrastructure and support. [16:36]

Sarita [31:15] In Hawaii, we met a woman named Moya Gray. 

Again, Sarita Gupta. 

Sarita [31:17] – Moya’s husband was in a disastrous bicycle accident that left him with quadriplegia and Moya was forced to make a really tough decision between placing her husband in a nursing home, hiring caregivers or dropping out of the workforce. Moya ended up initially leaving her job to care for her husband full time for a while. [31:37] Moya had a child in college, and one in high school and shortly after her husband’s accident, her mother suffered a severe stroke resulting in need for 24 hour care. So, she then eventually had to come back into the workforce because she became the sole breadwinner and really lacked the kind it lacked the kind of supports that she needed in order to manage, both what her husband needed her mom needed let alone be able to pay for and support her children. 

Sarita says she’s heard so many stories like Moya’s. People who are juggling multiple demands – facing financial burdens and emotional upheaval, with inadequate supports. 

Ai-jen: [16:37] We really don’t have a plan for how we’re going to support this large and growing older population to live well, to live with dignity, to live in a way that is integrated with the rest of our culture and economic life in this country. [16:55]

Ai-Jen says this is a crisis and an opportunity. She calls it a crisis-tunity. People are struggling with how they’re going to afford and manage care for their parents as they get older. In her book, Age of Dignity, Ai-jen talks about a caring majority. But creating public policies that address the universal need for care will take work. Getting access to care depends on how much money we have: wealthy people can pay for care, low-income people can access Medicaid, if they manage to navigate the system. And then there’s everybody in the middle, working poor and middle class people. 

Ai-jen [41:51] Because we don’t have any assistance with long term care in this country, people are impoverishing themselves, depleting all of their assets so that they can’t transfer any wealth to future generations, in order to get on Medicaid and afford care. We’ve really backed working class people into a corner. And then on top of that, we have all of these people in the middle, who are not eligible for Medicaid and cannot afford to pay out of pocket for care. And it is a huge slice of the middle, so many people that you run into every day who are working hard to make a living and take care of their families and all of a sudden are crushed by this enormous expense of care for their aging parents or relatives, and there really are not good options for them. [43:00] 

I asked Ai-jen, who’s taking care of older people when they become frail? 

Ai-jen [22:28] It’s 92 percent women and disproportionately women of color and immigrant women who do this work. About a third of the home care workforce is foreign born and it’s always been women of color who’ve done this work historically. And, the annual median income for a home care worker is $13,000 dollars per year.

Ai-jen says it’s hard to imagine where in this country you can support yourself and pay the bills, let alone raise a family on only $13,000 a year. And homecare work is the fastest growing occupation in our workforce. This is because of the huge demand for care, as people live longer. 

Ai-jen [24:20] So we know that we’re going to need this workforce and it’s really time to invest in them as part of the solution for the future. [24:12]

When don’t invest in caregiving in this country, we put a lot at stake. 

Ai-jen [25:13] Morally, the fact that the people that we’re counting on to take care of our loved ones can’t take care of their own families on the wages that they earn, that is to me one of the most fundamental and profound moral crises in our country. So there’s the moral question, but then there’s also the practical matter which is the fact that American families need caregivers. And we end up losing some of our very best caregivers to fast food and retail, because the wages are so low, because we have not invested in these jobs for their worth and because people simply cannot make a living. [26:02] 

So, it makes economic sense to shift our priorities: away from taking care of people in institutions and instead, providing services so they can stay in their own homes. A group of Harvard economists says there’s about a trillion dollars worth of waste in our healthcare system every year. A lot of this waste is concentrated around end of life care, because our elders are not receiving good preventive care.

Aij-en  [27:33] The amount of wages that we would need to increase worker salaries by, in order to make these living wage jobs, gets wasted in two days of institutionalization of an elder whose medication was mismanaged or who didn’t get the right care when they got home, after having a stroke or having a fall that could be avoided by really good, well-trained, sustainable home care workforce. [28:15]

MIT’s Paul Osterman explored these issues in his book, Who will care for us. He recommends an expanded role for home care workers. Make them part of the medical care team, elevate their status and increase their pay. He says this expanded role would lead to more respect for care workers. It would also free up professionals who are currently doing this work. And the bottom line, families would save money. 

Ai-jen [39:45] When 70 percent of the American workforce makes less than $50,000 per year [40:05] and the average cost of a private room in a nursing home is more than $90,000 per year, these numbers are simply not adding up. And that’s why we’re talking about a public investment in kind of a reimagining of our caregiving programs to be much more universal and accessible, much more flexible, really modernized to fit the realities of 21st century families. [40:57] 

MUSIC

Some people have asked me whether they should purchase long-term care insurance. Like any insurance plan, long term care insurance requires that you pay a monthly premium throughout your lifetime. Then later in life, when you need medical or residential care, this insurance is supposed to cover that cost. But it doesn’t always work out that way. I asked Ai-jen what she would advise people. She says if you can afford it, go for it, but know that it’s a flawed product. 

Ai-jen [43:19] It doesn’t often cover what you need when you need it. Very few people can afford it. On top of all their other living expenses and many insurers are seeing that and trying to get out of the long term care insurance market because they’re actually seeing that it’s not working as a market product. We need the government to step in and we need to come to the table together as citizens to say “how do we pool our resources and reimagine how we finance caregiving in this country.” [44:00]

Ai-jen says we need what she calls a “care grid.”

Ai-jen [59:28] – We think we need to put the systems in place to bring good care options to every home in America. We need to think of it as infrastructure, because it is a big project. And, when we make that investment, ultimately, it pays off in all of these ways, both in terms of supporting a quality of life and also economic benefits, right, supporting the productivity of working family caregivers, so many ways in which it’s a win, win, win, but it does require that initial investment in building out a system, that actually reflects the needs of the day. [1:00:01] 

And she raises another important issue. It’s critical to think about how care workers may be vulnerable when they work in someone’s home. 

Ai-jen [45:39] If you think about what it took for this country to finally acknowledge that domestic violence was an issue, right. It took generations of women’s rights advocates and domestic violence advocates to really turn the country’s attention to actually acknowledging that yes, domestic violence is a reality. Now, think about the fact that this workforce goes to work every day in our private homes, and you could go into any neighborhood or any apartment building and not know which homes are also workplaces, there’s no list anywhere, they’re not registered. It’s all essentially invisible. And so, then you’re in a home and you’re really the only employee, right, so there’s no water cooler, there’s no lunch room, there’s certainly no HR Department, and just the incredible power imbalance that that creates, just makes it almost like a Wild West-type environment, where you never quite know what you’re going to get. [46:45]

And sometimes this power imbalance leads to serious abuse. Her organization, the National Domestic Workers Alliance, handle cases of rape and sexual assault, and cases of what she calls, “modern-day slavery”. 

Ai-jen [47:06] There’s just an incredible amount of vulnerability in that environment where the imbalance of power and the isolation is so stark. And that is why it’s so important that we, as a culture, overcorrect for recognizing that this work force is a workforce that needs protections and needs to be valued and recognized, both for the fact that it is real work like any other, and for the particular vulnerabilities that come with working in isolated environments like the private home. [47:48] 

I’m inspired by the story of my colleague, Natalicia Tracy. She came to the US when she was 17 to be a nanny for a couple with two children. At the time, she only had an 8th grade education and she didn’t speak any English. She was working 16-hour days taking care of the children and the household chores. And for this, she was paid $25 per month. That’s $300 for the entire year. Her bedroom was the porch, and there was no heat. The couple didn’t allow her to call home, and they didn’t allow her to receive mail. On her own, she finally discovered a program that helped her learn English and get her GED. And once she spoke some English, she was able to find a new job, which allowed her to leave this situation. Natalicia went on to complete her GED, then her Associate’s Degree, then a BA and a Master’s, and finally a Ph.D. in Sociology. She’s now Executive Director of the Brazilian worker center in Boston. 

Natalicia is now an activist on domestic workers rights. She told me, “I suffered by myself. Now I’m encountering people in the same situation. It’s happening all around. I thought it was me being an outlier. I had no understanding of the complex underlying social issues. This was labor trafficking.”

MUSIC

Do you have a caregiving story to share? A question about navigating the care system? We’d love to hear from you. Our phone number is: 6-1-7-600-87-90, that’s 6-1-7-6-0-0-8-7-9-0 OR e-mail us: at contact@theshapeofcare-dot-org. We’ll try to get the answers and include them in Episode 6 of the series.

You can learn more about this series: connect with us on Facebook, Twitter and Instagram @the-shape-of-care. You can find out more about the people we’ve interviewed, read The Shape of Care Blog and see lots of caregiving resources at the-shape-of-care-dot-org. This project has been a labor of love, with the support of friends and family. If you like what you’re hearing, please support The Shape of Care financially at the-shape-of-care-dot-org.

MUSIC 

Next time on The Shape of Care: 

Rick promo clip [1:51] When I was growing up I made deliveries of food to the commissary at an institution for people with developmental disabilities, it was a state institution that became relatively well known as a result of a court case, Willowbrook Developmental Center, and I never forgot how bad the conditions of the place were, how brutally people were treated, who were residents. [2:13]

The Shape of Care is produced at Whiskey Lane Productions in West Roxbury, Massachusetts. Helen Barrington is the Executive Producer; the mix engineer is James Donahue; and our assistant producer is Alex Birch. Special thanks to podcast advisor, Lisa Mullins. Sarah Wasko created our logo, Kate Krosschell developed our marketing plan, and Maggie Taylor is our marketing consultant. Our theme music is “Break Out” written by Josh Rosen. He performs his composition on piano, with Stan Strickland on sax and percussion. Other music in this episode is by Blue Dot Sessions. I’m the create of this podcast, Mindy Fried. See you next week!

Theme Music, ends cold or fades out