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The Caregiving Challenge

“Mama…” said the small five year old voice from the backseat, “Mama, do you love Boppi more than me?”

Cover of Ai-Jen Poo's book, "The Age of Dignity"I was headed to the airport to fly to Omaha − again. It was the fall that Coleman was starting kindergarten, and it was a bumpy ride − the kind of time when you just need your mom. I fought back tears and tried to fill the space with words about love being really big − big enough for everyone, not about less for my baby than for my father. But to my five year old I was simply leaving − again.

My dad (“Boppi” to the grandsons) had suffered a major stroke that summer. He was totally paralyzed on his right side, rehabbing to regain speech and unable to walk on his own. Mom, who had just retired from 30 years of teaching, was thrust into the role of primary caregiver. A year later we discovered mom’s brain tumor, and suddenly the strongest woman we had ever known was in her own real trouble, incapable of basic functions, unrecognizable to us and no longer able to be responsible for dad. My sisters − Jennifer a nurse, Susie, a lawyer − and I commenced weekly calls to coordinate the schedule and the million decisions and details that needed tending. Like a lot of families, our situation was made more challenging by the fact that only one of us lived in the same state as our parents. And the burden on our local sister was especially intense.

Let me be clear: I wouldn’t trade anything for the hours spent caring for my parents. Looking into my Dad’s eyes as he practiced forming words to speak again, I tried to emulate the same patience he showed when teaching us three tiny girls “Silent Night” so we could sing for our grandparents. Walking with Mom as she took first tentative steps in the hospital, I remembered how she had taught me to walk, to run, to love the mountains. We were blessed with parents who truly treasured and sacrificed for us. “Holy” feels like the right word to describe the responsibility I felt now that they were dependent on us. Somehow I would teach this to Coleman − love really is this big.

Even with an incredible network of extended family, parish members and family friends, we simply could not do it alone. We needed professional home care workers at the house − so that we could be at our jobs and care for our own kids, with the peace of mind of knowing our parents were safe from falls, missed meals or meds, or a burner left hot on the stove. I knew that what we paid the agency was not at all what those workers were taking home as wages. For a time our parents were both in a nursing home, where they relied on an amazing crew of mostly African immigrant workers (I don’t think either of my parents had ever before met any African immigrants). They were kind and attentive; but since they didn’t have a union, they probably made nothing more than minimum wage. I remember one young woman who helped Dad as a home care worker − she actually came on her own time to visit him at the nursing home. They had made a connection, and she wanted to make sure he was doing ok.

Maxwell family

The Maxwell family, 1970

The bond between my dad and this worker is what Ai-Jen Poo and Sarita Gupta, two of the most innovative workers’ rights advocates of our time, are trying to lift up with the new national movement they are building called Caring Across Generations. They’re trying to change the culture around caregiving – nurturing connections between young and old, affirming that an aging population is a blessing, recognizing the imperative of investing in a skilled caregiving workforce.

They are demonstrating the transformational power of millions of personal stories, stories like mine. My ability to care for my parents, and for my son, is intimately linked to the labor of others.

Caregiving is hard and important work, and we need to fairly compensate the largely female workforce caring for us and our loved ones. Secretary Tom Perez tells the story of meeting a woman who left her calling as a home care worker for a job in fast food − because it pays better. This is just one of the many reasons that the Labor Department’s historic new rule extending minimum wage and overtime protections for home care workers is long overdue.

But we need to do more than just provide basic labor standards. Home care workers need and deserve not just a higher floor but a higher ceiling. We need to create incentives and build career ladders in order to attract talent to an occupation that will be in greater demand than ever as the Baby Boomers reach their golden years. In her book, “The Age of Dignity,” Ai-Jen Poo notes that the number of people who will require long-term care is expected to skyrocket in the coming decades, from 12 million to 27 million by 2050. How are we going to fill the need for skilled caregivers when the median wage is barely $20,000 per year? My sister Jennifer, the health care professional, talks about how we need to build a culture of empathy where  policies that are fair and respectful to frontline workers leads to fair and respectful care for our loved ones.

And we need policy solutions that enable families to care for their loved ones. As we explain in the new DOL report, “The Cost of Doing Nothing,” our failure to enact a sane paid family and medical leave policy is leaving millions of families on their own at some of the toughest times in our lives. Both of my sisters suffered real loss of income in order to make time for our parents; I was the only one of us whose employer had a leave policy that enabled me to juggle my responsibilities without a cut in pay. When you face new responsibilities and expenses associated with a family health crisis − or with the miracle of welcoming home a new baby − the last thing you need is stress about your own paycheck. Countries around the world have figured out how to ensure that their people never have to choose between the families they love and the paychecks they need. We CAN do better; that’s why President Obama and Secretary Perez issued a Labor Day call to action this year: it’s time to lead on leave.

I love Ai-Jen’s comparison of the caregiving challenge to President Eisenhower’s investment in the federal highway system. We need a new infrastructure for caregiving. We need new policy that is responsive to the needs of 21st-century working families. We need to put people to work in good home care jobs providing compassionate services that sustain workers and their families. We need systems that real people can navigate, as well as the space for innovation and creativity in sustainable new models for home-based care.

Many of us have been called the “sandwich generation,” a term I’ve truly come to hate. A sandwich sounds so innocuous − something nice to have for lunch. It doesn’t do justice to the awful, wrenching moments when I felt stretched between my son, my parents and my job − feeling every day that I was failing the people I loved most. But we can transform these challenges into opportunities. We can be the Caregiving Generation − the ones who figure this out − so that no one is going it alone, so that we ALL can cherish our little ones, honor our elders, pursue our own careers, and respect the workers who make rich lives of work and family possible.

Mary Beth Maxwell is the principal deputy assistant secretary for policy at the U.S. Department of Labor and a senior adviser to Secretary Perez.

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Comments (2)

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  1. Judy Woodruff says:

    Ms. Maxwell makes very good points that have been a reality for millions of families throughout the US for some time. Finally, when it is affecting the lawmakers and not just the every day people, it is getting some serious attention. In the US, we do a terrible job of caring for those who can not care for themselves – our children, our elderly, our mentally ill, and developmentally chanllenged.

  2. JANET MILLER says:

    I took care of my Mom for 12 years. My 4 siblings lived out of town. She lived with me from 2003 until 2010 when she had a second stroke which left her with the inability to talk or swallow. With a heavy heart, I had to move my Mom into a nursing home. I was there everyday, and I wonder what would have happened had I not. Caring for an elderly parent is all consuming, and stressful mostly due to the nursing home corporations, administrative staff, and the lack of compassion in most nurses, and the working conditions and low pay for the hardest working staff: Certified Nursing Assistants. To some of them it was just a job, some of them had to work 2 jobs to live, some loved the work they did regardless of the pay, some were so compassionate, some I asked to be removed from my mom’s floor, some loved me, some hated me. It was a hard, stressful job for me, I can only imagine how hard the job is hour after hour, day after day. We need to find a way to adequately compensate a profession which must have compassion and the ability to take care of our elderly.