Who Takes Care of the Caregivers?

Host: We have been talking about caregiving throughout the day. It has been threaded through many of the conversations, but this feels like a moment to explore it more deeply.

Both of you bring lived experience and a deep understanding of the systems that must come together to create change.

Sarita, I would like to begin with you. Why does caregiving matter so much at this particular moment?

Sarita Gupta: Caregiving matters because our nation’s care needs are exploding.

As we have discussed throughout the day, we are experiencing unprecedented demographic shifts. We are in the middle of an elder boom. People are living approximately 20 years longer than when our social safety net was first established, and chronic illnesses are becoming more common.

That means the need for elder care is growing.

At the same time, the first wave of millennials is beginning to have children. When we consider the full spectrum of care, we have an increasing need for both elder care and childcare.

We also know that 80 to 90 percent of older Americans would prefer to age at home. The demand for home-based care is therefore growing dramatically.

The question we face is: Who are the people on the front lines providing dignified care in the home?

What do unpaid family caregivers and the paid caregiving workforce need to help the people we love live, age, die, and end well?

Host: Beautifully put.

Another demographic shift is the large number of young and middle-aged people who are unemployed. Caregiving could provide meaningful work for many people if we created those jobs in a structured and dignified way.

Sarita: Exactly. Care jobs are the jobs of the future.

Yet care work is deeply undervalued in our society. Paid caregivers are predominantly women, particularly women of color and immigrants.

These are physically and emotionally demanding jobs, but the average worker earns poverty wages, approximately nine dollars an hour or $13,000 a year. Around 30 percent rely on public assistance for food security.

We also fail to recognize that home-care workers are daughters and mothers themselves. They are often unable to support their own families or care for themselves.

We have an opportunity to shape these jobs into stable, family-sustaining careers for the future.

Host: Our mutual friend Ai-jen Poo wrote a book called The Age of Dignity. Her wisdom has been foundational to this conversation.

I would like you to talk about the movement itself. You have worked with Jobs With Justice and Caring Across Generations, a coalition of approximately 200 organizations.

Who is involved, and what are you fighting for?

Sarita: Caring Across Generations is a movement of families, caregivers, people with disabilities, and older Americans working to transform how we care in this country.

We want every family to have affordable and accessible options that allow the people they love to age with dignity.

That requires a care infrastructure.

When we talk about infrastructure, we usually mean roads, highways, and bridges in the physical world, or the internet in the digital world.

We believe this country also needs an infrastructure for care because care makes all other work possible. It is essential to our economy.

We are fighting for a system that creates more affordable and accessible options for families, offers meaningful support to unpaid family caregivers, and strengthens and expands the paid caregiving workforce.

This work is also deeply personal to me.

I am a working family caregiver in the sandwich generation. My father, a retired physician, was diagnosed with Alzheimer’s five years ago. My mother has chronic arthritis.

About three years ago, they moved into my home.

Host: You invited them. You make it sound as though they simply arrived with their bags.

Sarita: That is true.

As we have discussed the importance of talking about the end of life, we also need to have conversations about care. What do our parents want? What do they need? What do we want and need?

It is a relief to have them in my home rather than hundreds of miles away.

At the same time, I have a seven-year-old daughter. My husband and I often feel sandwiched between the care needs at both ends of the spectrum.

Sometimes we call ourselves the panini generation because we feel pressed in the middle.

I do this work professionally, and I still find it extremely difficult to navigate the support my father needs, my mother needs, my daughter needs, my husband needs, and I need.

I cannot imagine how difficult it is for working people who do not understand these systems, who have unpredictable schedules, who do not earn salaries that allow them to pay for care, or who lack meaningful support.

That experience drove me to help build this movement and to recognize the interdependence between family caregivers and the paid workforce.

Host: Thank you for bringing it to such a personal level.

In my last book, I reported on multigenerational housing. The research suggests that people living in multigenerational homes are often happier and report a higher quality of life.

The headlines tend to focus on “boomerang children” or lazy adult children living in their parents’ basements. But for many people, multigenerational living works extremely well. In some ways, it is a return to how families once lived.

Cynthia, this is a perfect point to bring you into the conversation.

Through the Alameda County Care Alliance, you support people like Sarita who are managing extensive caregiving responsibilities.

How does the alliance work, and why did you create it?

Reverend Cynthia Carter Perrilliat: The Alameda County Care Alliance is a faith- and community-based organization.

We partner with healthcare systems, academic institutions, and public health organizations. Through that collaborative approach, we work to meet the needs of people living with serious or advanced illnesses and the caregivers supporting them.

We have heard repeatedly today about the need for connection. This movement is where the rubber meets the road because caregivers are struggling.

Sarita described her experience caring for her parents. I have also cared for my father.

We train care navigators within churches and other faith communities.

Imagine a community health worker based inside a trusted faith organization. That person is trained to discuss advance care planning, POLST forms, and other important issues. They also help families identify and access resources.

The healthcare system does important work, but imagine having more boots on the ground and more people available to help caregivers care for themselves.

Host: Let us try a quick exercise.

How many people in this room have cared for someone who was dying?

That is a large number.

How many of you felt adequately supported in that role?

Perhaps three hands.

Your work is clearly needed.

What are the greatest needs caregivers describe to you?

Cynthia: Respite support is the first and most urgent need.

Caregivers need a break. They need someone to care for them and recognize that they may want to go to a movie, have their hair done, take a breath, or simply spend some time alone.

Helping caregivers access respite is essential.

We also focus on the person receiving care.

Our trained navigators may accompany someone to a doctor’s appointment. That supports the patient while giving the family caregiver an opportunity to rest and do something that replenishes their mind, body, and spirit.

A holistic approach is extremely important. Our movement addresses physical, emotional, spiritual, and psychosocial needs through collaborative relationships.

When someone wants prayer or meditation that reflects their spiritual practice, we honor that.

We now receive referrals directly from healthcare systems. Kaiser Permanente Community Benefit is our lead funder, and we receive referrals from Kaiser, Alameda Health System, Highland Hospital, and community clinics.

The idea is spreading that faith communities contain valuable resources.

We meet people wherever they are, regardless of their spiritual beliefs or whether they have any spiritual practice at all.

Host: Help us understand the model a little more. It is relatively new and highly innovative, and I imagine it could be replicated elsewhere.

Are the navigators paid?

Cynthia: They are, and we are very proud of that.

Sarita spoke beautifully about how poorly caregivers are often compensated. Care navigators are caregivers, too.

Some of our navigators work full time, while most work part time. Paying them demonstrates that we value their labor, their knowledge, and their ability to connect people with care.

We also see significant loneliness and isolation in underserved communities.

We now serve people in Alameda and Contra Costa counties. Many people living with advanced illness, as well as their caregivers, feel profoundly alone.

That is why we train not only care navigators but also pastors and other spiritual leaders. They learn about advance care planning, advance directives, POLST forms, and other essential subjects.

There is a reservoir of people within faith communities who are ready and willing to help.

We also speak the language of the people we serve.

Research consistently shows that people prefer to receive care at home, particularly near the end of life.

We help them discuss questions such as who they would like to appoint as a healthcare agent.

Many people tell us they would like to have these conversations in a doctor’s office or hospital but feel rushed or unheard. Sometimes patients and clinicians seem to be speaking entirely different languages.

Our model allows us to sit inside someone’s home, listen carefully, and help them ask the questions that matter to them.

Listening is essential.

Host: Like the work we heard about earlier on Chicago’s South Side, this is about meeting people where they are rather than expecting them to arrive already knowing which questions to ask.

In your model, a trusted navigator may meet someone through their church and help them understand the healthcare system.

Many of the people you serve have legitimate reasons to distrust that system. People of color, women, low-income communities, and people experiencing poverty have often been failed by healthcare institutions.

How do you think about trust?

Cynthia: Trust is absolutely crucial.

We know the history of disparities and mistreatment within many communities.

Fortunately, many people still have a great deal of trust in their faith communities. They may trust a rabbi, imam, pastor, priest, or another spiritual leader.

That makes faith leaders important participants in this conversation.

We also meet people in the comfort of their homes.

Our program usually involves five in-person visits and additional phone conversations over six months. Because loneliness and isolation are so common, we sometimes extend that period according to someone’s needs.

Within faith communities, we can also create what we call a soft handoff.

When a navigator needs to move on and support someone else, another organization, ministry, or volunteer within the congregation can continue providing care.

We train navigators, pastors, spiritual leaders, and a group of volunteers we call care ministers.

Supporting people well requires many people who are prepared to pass the baton and remain present.

Trust is central to all of it, and we are receiving an incredible response.

Host: Sarita, one of the challenges and opportunities you face is that caregiving does not fit a traditional organizing model.

An organizer may know how to organize workers against a single abusive employer. Caregiving is a much more complicated and dynamic system.

As someone who employs a caregiver for my children, I consider Betsy part of my family, and I hope she considers me part of hers.

Your work asks how we organize without identifying one obvious villain. How do we help everyone recognize that they have something to gain from changing how our culture values, compensates, and dignifies care?

Sarita: That is an important question.

We need organizing, but we also need cultural change.

I feel at home in this space because, along with talking about how we end well, we must talk about how we age well and what that requires.

The adversary is not always a single employer. I would argue that the adversary is a mentality of scarcity embedded in our systems.

When we operate from scarcity, we pit the needs of different groups against one another.

In long-term care, the interests of patients and families have often been positioned against the interests of the workforce.

We want to disrupt that.

We need an entirely new system that values caregiving and the relationships at the heart of it.

We reject scarcity and embrace abundance.

When we operate from abundance, we can bring people together to develop creative and generative solutions.

Our approach is to engage people’s hearts and minds, connect with their hopes and aspirations, and organize from a place of love and well-being.

In practical terms, that means creating multistakeholder coalitions.

In Maine, for example, we have brought together people from across the state to advance an effort for universal home care for older adults and people with disabilities.

A central part of that proposal is the creation of a trust governed by representatives of home-care workers, family caregivers, employers, and the state.

Together, they would help design the system, set wages and labor standards, establish caregiving standards, and define quality care.

Host: Is the strategy to prove this model in Maine and other states, then replicate it elsewhere? Are there also federal policies we should watch?

Sarita: We are pursuing both.

The federal level is difficult right now, but states are on the front lines.

In Hawaii, we recently won the Kupuna Caregivers Program, which provides financial assistance to working family caregivers. It helps them support the people they love without being forced to leave the workforce.

States are showing us what is possible.

Host: Why did it work in Hawaii? What can other places learn from that effort?

Sarita: We brought people together in communities across the state and listened to what they needed.

We realized that we could not address the need for a larger, better-compensated paid workforce without also recognizing that many working people are unpaid family caregivers who are struggling.

We brought multiple stakeholders together and talked about the value of care and what it means to value older people.

We combined cultural change with policy work and generated the energy needed to move the proposal forward.

We are learning how important it is to bring people together and make care part of the public conversation.

Care is usually treated as a private matter.

People feel personally burdened or believe they have failed because they cannot meet every need within their family, so they remain silent.

We create spaces where people can share their caregiving stories and recognize that others are struggling with similar challenges.

Together, they can begin developing public solutions.

Host: That reminds me of something you said when we spoke, Cynthia. Many people do not even realize they are caregivers because the work is so invisible.

I spent today moving through the neighborhood, picking up my one-year-old and bringing my four-year-old here. At some point, I realized, “I suppose I am a caregiver.”

It does not always occur to us because our culture values productivity, deliverables, and other forms of work more than the regular and sacred act of caring for someone.

Why is it important for people to recognize themselves as caregivers?

Could you also talk about how your organization honors caregiving through awards and other forms of recognition?

Cynthia: Caregiving is one of the most selfless acts we can imagine.

People often respond to the love, concern, and compassion once given to them by their parents, grandparents, aunts, or other relatives. There is a deeply human response at the heart of it.

That brings me joy because we are all in this together.

Regardless of our ethnicity, upbringing, socioeconomic background, or any other difference, we are human beings. We all share that.

Caregivers often believe no one notices them, hears them, or cares about what they are experiencing.

One of the things we are most proud of is our annual Caregiver Recognition Celebration.

We bring together our care navigators, pastors, care ministers, and volunteers. We also invite caregivers from throughout the community, regardless of whether they participate in our program.

They are unsung heroes and sheroes.

We greet them at their cars and help them inside because caregivers often give so much that their own health declines. Tragically, some die before the person for whom they are caring.

We lift them up, celebrate them, and help them understand how important they are.

We have also drawn on the musical resources within our faith communities.

We partner with approximately 14 churches whose singers, choirs, praise leaders, and worship teams come together as the One Voice Mass Choir.

They rehearse and perform at our annual celebration.

This year, we produced a CD called Courage for Caregivers: You Are Not Alone. We give it to caregivers for free. When others purchase it, the proceeds allow us to produce more copies and continue giving them away.

We also offer intensive caregiver support groups through partnerships with the Center for Elders’ Independence, the Family Caregiver Alliance, and other organizations already doing strong work in the community.

I have worked in hospice since the early 1990s, when my father needed hospice care.

One thing I have learned is that caregivers need to be heard.

We may gather eight or ten caregivers with a speaker prepared to discuss self-care or another topic they requested.

But inevitably, the caregivers need to say, “I am tired. I am angry.”

They want to talk about their own experiences and hear how other people are managing similar challenges.

Often, they simply want to sit in a circle with other caregivers and know that someone is listening.

Host: We have discussed technology and science throughout the day. Sometimes we need to redesign complex systems.

Other times, the most powerful technology is the simplest one in the world: Put a group of people in a circle and ask what they need from one another and how they can help.

Sarita, how can the people in this room support your work?

We can begin by making sure our own houses are in order. Are we compensating the caregivers we employ fairly? Are we providing health insurance and other basic forms of dignity?

Beyond that, how can we support Caring Across Generations?

Sarita: First, we must recognize both the paid workforce and the networks of unpaid family caregivers who make care possible.

We call them care squads.

As Cynthia described the navigators, pastors, frontline workers, family members, and paid caregivers surrounding an individual, she was describing a care squad.

How do we recognize and value the work everyone within that group performs?

We also need to think creatively about integrating home-care workers into the broader healthcare system.

What is the relationship between home-based care and the medical setting when someone needs to be hospitalized?

Home-care workers often tell us, “No one ever asks what the person I care for wants, but I know what they want.”

They spend every day with that person.

We need to redesign our systems to recognize their knowledge.

Host: I want to add something as a white woman on this stage speaking to an audience with many white people.

This conversation is also about race.

The story white Americans often tell about family life is that we have a house with a white picket fence, 2.5 children, and handle everything ourselves until someone enters a professional setting such as a hospital.

The people performing much of the caregiving remain invisible.

They may work inside our homes, and we may have relationships with them, but we rarely speak about them publicly.

I once posted a photograph of Betsy, our childcare provider, on Facebook. Someone responded that they had never seen anyone publicly share a picture of their childcare provider.

That struck me as strange.

There is a major racial component to this conversation. We need to confront the stories white America tells about who performs care and why those people remain unseen.

Sarita: We need to tell a more honest story and acknowledge the wisdom of the people caring for someone every day.

We must also advocate for a stronger caregiving workforce.

Racial inequality, gender inequality, and the exploitation of immigrant workers are embedded in the design of our current system.

The people performing this work are undervalued and made invisible.

Home-care jobs are projected to grow by approximately 30 percent over the next 10 to 12 years.

We have an opportunity to shape those jobs now by improving compensation, professionalizing the workforce, providing training, and establishing meaningful career ladders.

We can accomplish those things when we work together.

We also have many larger policy ideas.

I mentioned universal home care and long-term care. We are also exploring the idea of family care funds.

How might we create systems that support families across the entire continuum, from childcare and paid leave to elder care?

Paid family and medical leave is especially important.

It is remarkable that the United States remains one of the only countries without a national paid family and medical leave program.

When we speak with people about elder care, many tell us they also need childcare and greater support at work.

We are considering how a range of family-care policies can be woven together.

We invite everyone here to help us develop these ideas and determine how to support the paid workforce alongside working and unpaid family caregivers.

Host: Cynthia, I would like to close by asking you about organ donation.

When we spoke, I was moved by a story you shared.

There are deep and longstanding differences in this country in how people are treated based on race, class, gender, and other factors.

Yet you described a moment when organ donation connected people who seemed to have nothing demographically in common. It became a moment of healing and openness.

Would you share that story?

Cynthia: I would be happy to.

I had the privilege of serving as a business development manager for the California Transplant Donor Network in Northern California.

When we think about life, humanity, and the things all of us share, we often take them for granted.

I remember a white man living in San Francisco’s Nob Hill neighborhood who desperately needed a heart transplant.

A Latino family lived in what is often called deep East Oakland. They had limited financial resources but tremendous generosity and heart.

Their beloved young son was tragically killed in a car accident. His family decided to donate his organs.

His heart was a match for the older man in San Francisco.

The recipient had lived a wealthy but isolated life. His family was honest that he felt uncomfortable around people of color because he had very little experience with them.

Yet this young Latino man extended his life by giving him the ultimate gift: his heart.

When we think about where we live, our economic circumstances, our status, or our skin color, the great equalizer is that all of us want to live.

We can support one another through some of life’s most difficult moments.

That is an opportunity to embrace community on every level.

Witnessing it firsthand was transformative for me.

Host: Thank you, Cynthia.

You are both personal heroes of abundance, and I am certain many people here share my gratitude for everything you have taught us today.