Caregiver Activist on Respecting Caregivers as a Policy Solution

Hello, End Well, and happy National Caregivers Month.

I’m sorry to miss the opportunity to be with all of you in person, but I’m grateful to the End Well team for finding a way for me to share some timely thoughts, especially given this year’s conference theme: It’s About Time.

Every day in this country, approximately 10,000 people turn 65, and another 10,000 are born.

Throughout our lives, we rely on the care of others. We depend on parents, family members, and childcare workers. If we have a disability or need support as we age, we may rely on a family caregiver or professional care worker.

Eventually, we all provide care, too.

Care is a fundamental and sacred part of life. Yet it has become harder with each generation as our culture, economy, and needs have changed. More women are in the workforce. Work itself has become less secure. And as we live longer, our need for care has grown significantly.

Meanwhile, the support available to caregivers has not kept pace.

We do not have the systems we need to care for ourselves or the people we love, including at the end of life. What we have instead are 53 million overstretched family caregivers and nearly nine million underpaid professional care workers.

The median annual income for a home healthcare worker in the United States is $23,000. Wages are so low that we struggle to retain even the most dedicated care workers because it is nearly impossible for them to make ends meet.

Things have been difficult for a long time. That is not the timely part.

The timely part is the good news.

In the 25 years that I have been organizing and advocating around these issues, I have never seen an opening for change like the one we have now.

We used to have these conversations at kitchen tables across the country and in rooms like this one. But the issue never seemed to reach the decision-makers responsible for setting our national priorities.

Then COVID turned the quiet crisis we had been managing in the privacy of our homes into one we had to confront as a country.

Care became part of the national conversation. It appeared in the news, within legislative bodies, and throughout the film and television industry.

There are three clear signs that we have entered a generational moment for change.

Five years ago, had I suggested that care would become a centerpiece of the president’s economic agenda, rather than simply a women’s issue or an aging issue, I would have been dismissed as delusional.

Yet that is exactly what happened.

We came within a few votes of securing transformational investments in childcare, aging and disability care at home, and a new national paid leave program. None of those policies were even on the table five years earlier.

After that effort fell short, some people may have assumed the opportunity was over. Then the president signed the most sweeping executive order on care in our nation’s history, directing every federal agency to use its authority to make care more affordable and accessible for families and to make caregiving jobs better jobs.

States have also decided they will not wait for Congress to act.

In July, Washington launched a long-term care benefit. Minnesota passed one of the strongest paid leave laws in the country, helping ensure that every Minnesotan can show up when a loved one needs them most, including at the end of life.

When I step back and consider the largest challenges we face as a nation, from the epidemic of loneliness to entrenched economic inequality and political polarization, they lead me to a fundamental question:

Do we value caring for one another?

Is care truly a societal priority?

I grew up with my grandparents, and each of them played a major role in caring for me. Later, I learned about caregiving through their two very different experiences at the end of life.

At 93, my grandfather needed more assistance than we could find for him at home, despite how hard we searched. Against his wishes, we had to place him in a nursing home.

The facility was understaffed and under-resourced. Each worker was responsible for between 20 and 30 residents, and staff turnover was constant. The food was unrecognizable, and my grandfather shared a room with five strangers.

Even though he was surrounded by five other people, he died alone after only a few months in that dehumanizing environment.

My grandmother had a stroke at 92. Her care team included my mother and two hospice workers who supported her at home. My nine-year-old niece visited her every day.

My grandmother died with loved ones beside her.

It was still difficult, but we were able to move through those final days with some degree of agency and dignity.

These are two different paths, and they represent the crossroads we face as a nation.

We have a generational choice and an opportunity to build a system that protects our dignity from the moment we are born until the moment we die.

We have the opportunity to do what lies at the heart of every healthy society: care for one another.

Langston Hughes once said, “When someone cares for you and cries for you, they can straighten out your soul.”

What if making care the focus of our future is exactly what we need to make both life and death better in this country?

It’s about time.