Sarita Gupta is the co-director of Caring Across Generations, a national movement aimed at transforming the way we care in this country, and executive director of Jobs With Justice. She is a nationally recognized expert on the economic, labor and political issues affecting working people across all industries, particularly women and people employed in low-wage sectors, and on issues related to home care. As a member of the “sandwich generation,” Sarita is grappling with and can speak to the care issues facing more and more Americans, balancing caring for young children with caring for aging parents.
What is your care story?
For three years, I’ve watched my father battle Alzheimer’s. He and my mom, who are both in their seventies, moved in with my husband, my daughter and I this year after it became too difficult for them to live alone. For now, my family is still able to care for my dad at home without additional hired assistance. My mom cares for my dad while I’m at work, and my brother, sister and I have shared the responsibilities of the selling of their home, handling their finances, attending to their medical needs, and other legal matters. But I know we’ll eventually turn to home care for him, especially as my mom ages.
There’s no question that being a part of the “sandwich generation” is hard. Sometimes it feels like one full-time job on top of another. At the same time, I am grateful for the moments of joy and togetherness this new chapter has brought to all of our lives.
What do you wish you had known about caregiving before you started caring for your loved one?
I wish I had known how complex, confusing and maze-like the process can be, and how little support there is for families like mine.
Unless you’re either very poor or very rich, it’s next to impossible to afford long-term care. Contrary to what most people assume, Medicare doesn’t pay for costs like home care, assisted living or nursing homes. While Medicaid pays for long-term care, you need to be below the poverty line in order to qualify. The out-of-pocket costs, if paid out of pocket, are staggering: the average cost of a private room in a nursing home is quickly approaching $100,000 per year, and home care, while certainly more affordable, still costs tens of thousands per year.
The journey of figuring all of this out,–what you qualify for, what you don’t, what the options are – it can be taxing.
What made you become an advocate for family caregivers?
Millions of families like mine are dealing with the complicated and expensive prospect of securing needed care for loved ones as they age or live with disability. And we’re on the fortunate end of the spectrum. At the same time, I’ve heard countless stories from home-care providers about their low wages, long hours, grueling work, and the harmful work environments.
Fundamentally, caregiving, which is an issue that affects so many people, shouldn’t be so hard. People are leaving jobs, getting sick themselves, and experiencing this as a private crisis behind closed doors, when in reality, it’s a failing of our society and our policies. The good news is that with the Baby Boomer generation aging, it presents a tremendous opportunity to acknowledge that this is a collective issue – and we can create collective solutions if we organize.
What are the problems facing home care providers?
Despite the critical work they do, the median income of a home care provider is around $20,000 a year—which is unsustainable for anyone raising a family. Care providers are paid so little that half of them qualify for programs like Medicaid and food stamps. These men and women rarely receive paid vacation or sick days, and many are subject to termination without notice or severance pay. Primarily women, care providers often do not earn enough to care for their own loved ones.
What would improve the lives of caregivers and those they care for?
The country is crying out for a new holistic, affordable and accessible system – a reimagining of long-term care — that meets the needs of individuals wherever they are in the care continuum, and regardless of whether they are a recipient or provider, paid or unpaid. Long-term, I believe, along with all those who have joined Caring Across Generations, believe this must involve the creation of a new care infrastructure at the federal level, where all people have access to the quality, dignified care and support of their choice; where to provide and sustain quality care, we have a strong, qualified workforce that is respected and protected; and as a society and culture, we respect, protect and value care work.
But to get there, we need to come together as a unified movement. That means all of us – aging Americans, people with disabilities, family caregivers, home care workers, and all the millions more touched by this issue – recognize that we all have a stake in speaking up, working from our common interest and mobilizing a caring majority. A concrete first step would be to raise wages for professional caregivers, so that in real terms we are saying, yes this is dignified work, and it deserves to be valued as such.
What do you see as the future of family caregivers and the eldercare workforce?
It will only grow. And we know that family caregivers cannot do it all on their own. I think any distance between family caregivers and the eldercare workforce will decrease in the coming years, because both will be vital members of any care team. And I do believe that is what it will take to care for our growing aging population – real care teams made up of family members, friends, neighbors, professional caregivers, health care professionals, etc. – working more closely together as part of a care regimen that really does put the person – and not available dollars – at the center.
What is your care story?
For three years, I’ve watched my father battle Alzheimer’s. He and my mom, who are both in their seventies, moved in with my husband, my daughter and I this year after it became too difficult for them to live alone. For now, my family is still able to care for my dad at home without additional hired assistance. My mom cares for my dad while I’m at work, and my brother, sister and I have shared the responsibilities of the selling of their home, handling their finances, attending to their medical needs, and other legal matters. But I know we’ll eventually turn to home care for him, especially as my mom ages.
There’s no question that being a part of the “sandwich generation” is hard. Sometimes it feels like one full-time job on top of another. At the same time, I am grateful for the moments of joy and togetherness this new chapter has brought to all of our lives.
What do you wish you had known about caregiving before you started caring for your loved one?
I wish I had known how complex, confusing and maze-like the process can be, and how little support there is for families like mine.
Unless you’re either very poor or very rich, it’s next to impossible to afford long-term care. Contrary to what most people assume, Medicare doesn’t pay for costs like home care, assisted living or nursing homes. While Medicaid pays for long-term care, you need to be below the poverty line in order to qualify. The out-of-pocket costs, if paid out of pocket, are staggering: the average cost of a private room in a nursing home is quickly approaching $100,000 per year, and home care, while certainly more affordable, still costs tens of thousands per year.
The journey of figuring all of this out,–what you qualify for, what you don’t, what the options are – it can be taxing.
What made you become an advocate for family caregivers?
Millions of families like mine are dealing with the complicated and expensive prospect of securing needed care for loved ones as they age or live with disability. And we’re on the fortunate end of the spectrum. At the same time, I’ve heard countless stories from home-care providers about their low wages, long hours, grueling work, and the harmful work environments.
Fundamentally, caregiving, which is an issue that affects so many people, shouldn’t be so hard. People are leaving jobs, getting sick themselves, and experiencing this as a private crisis behind closed doors, when in reality, it’s a failing of our society and our policies. The good news is that with the Baby Boomer generation aging, it presents a tremendous opportunity to acknowledge that this is a collective issue – and we can create collective solutions if we organize.
What are the problems facing home care providers?
Despite the critical work they do, the median income of a home care provider is around $20,000 a year—which is unsustainable for anyone raising a family. Care providers are paid so little that half of them qualify for programs like Medicaid and food stamps. These men and women rarely receive paid vacation or sick days, and many are subject to termination without notice or severance pay. Primarily women, care providers often do not earn enough to care for their own loved ones.
What would improve the lives of caregivers and those they care for?
The country is crying out for a new holistic, affordable and accessible system – a reimagining of long-term care — that meets the needs of individuals wherever they are in the care continuum, and regardless of whether they are a recipient or provider, paid or unpaid. Long-term, I believe, along with all those who have joined Caring Across Generations, believe this must involve the creation of a new care infrastructure at the federal level, where all people have access to the quality, dignified care and support of their choice; where to provide and sustain quality care, we have a strong, qualified workforce that is respected and protected; and as a society and culture, we respect, protect and value care work.
But to get there, we need to come together as a unified movement. That means all of us – aging Americans, people with disabilities, family caregivers, home care workers, and all the millions more touched by this issue – recognize that we all have a stake in speaking up, working from our common interest and mobilizing a caring majority. A concrete first step would be to raise wages for professional caregivers, so that in real terms we are saying, yes this is dignified work, and it deserves to be valued as such.
What do you see as the future of family caregivers and the eldercare workforce?
It will only grow. And we know that family caregivers cannot do it all on their own. I think any distance between family caregivers and the eldercare workforce will decrease in the coming years, because both will be vital members of any care team. And I do believe that is what it will take to care for our growing aging population – real care teams made up of family members, friends, neighbors, professional caregivers, health care professionals, etc. – working more closely together as part of a care regimen that really does put the person – and not available dollars – at the center.