The Carters’ Legacy and the Work Ahead

In Part I, we explored storytelling as a tool to heal division. Now, we turn to a harder truth: even visionaries like Jimmy and Rosalynn Carter couldn’t fully dismantle systemic challenges in caregiving.

In 1987, the Carters founded The Rosalynn Carter Institute for Caregivers, recognizing the quiet labor of millions—often women—caring for loved ones. Rosalynn’s book, Helping Yourself Help Others, centered on the caregiver’s experience, not just the patient’s diagnosis. Decades later, her words remain strikingly relevant:

“Caregivers are the invisible frontline… ignored at great risk to our health care system, our economy, and our communities.”

Why? Because stories like mine—stories of institutional neglect—are still too often unheard.

A Moment of Clarity in a Nursing Home

In 2010, I walked into my 93-year-old mother’s nursing home room at noon, as I had done every day since her admission just a few weeks earlier. What I witnessed still unsettles me: three male employees—including a maintenance technician in street clothes—compromising her privacy. My mother, living with dementia, sat vulnerable and disoriented. I paused. Then I acted.

What I did:

  • Filed a verbal report immediately.
  • Documented the incident meticulously for my siblings, anticipating questions.
  • Advocated for accountability.

What followed:

  • The social worker immediately shifted the blame: “It was her fault. She asked for it.”
  • The CEO’s “investigation” involved interviewing the men as a group.  Their names were redacted in the one-paragraph report – and they were sent back to work, reportedly laughing.
  • I was never consulted – even after notifying the CEO that I needed to be included in his “investigation.” No apology. No resolution.

This wasn’t just oversight—it was systemic disregard. The message? Women’s voices—particularly caregivers’ voices—are too easily dismissed.

It's the primary caregiver who is the one to tell the story. One of the things that goes along with empathy is to listen to what caregivers say... We tend to thiink of empathy in relation to emotions and feelings but... to share knowledge is an act of empathy.

Cindy Weinstein, PhD, Vice Provost, California Institute of Technology

Validation Through Research

For years, I carried this weight alone—until 2021, when I reconnected with gerontologist Carol Farran, a former colleague and a recipient of the Rosalynn Carter Leadership Award. Her research on hope and hopelessness in caregiving had guided me years prior. When I shared my story, her response was grounding:

“Your truth matters. This wasn’t your fault.”

Her kindness echoed the “justice rolling down like waters” I’d longed for (Amos 5:21). Yet Carol’s support couldn’t erase what Kate Swaffer’s Dementia Justice Report confirms: “Many people aren’t believed when they raise care concerns.”

My experience isn’t rare. It’s a reflection of how systems sideline women.

Eldercare’s Unseen Struggles

Why was my mother blamed?

  • Systemic biases: Caregiving is often undervalued as “women’s work,” marginalizing both providers and recipients.
  • Institutional priorities: Facilities often cut corners (e.g., minimal staff training) to reduce costs.
  • Cultural dismissal: As Kate Swaffer’s research notes, elder neglect persists because “older people are seen as less deserving of agency.”

The aftermath for me:

  • I paused my doctoral studies to continue providing care for my mother full-time.
  • We brought her home, where she flourished—walking unaided, smiling, declaring, “This is good!” in her kitchen.
  • I faced a difficult choice: Challenge a broken system or protect my well-being? I chose the latter. Now, I reflect on what might have been.

The Ripple Effect of Silence

The 2024 election magnified these fractures. Former President Biden’s warning—“It’s going to be up to us to stand watch”—feels urgent as Medicare/Medicaid cuts threaten. Consider:

  • Strained staff in under-resourced facilities.
  • Insufficient training on dignity-centered care.
  • Residents and families being left unheard.

This isn’t hypothetical. It’s unfolding—and the most vulnerable bear the cost.

A Call to Lift Every Voice

Sheryl Sandberg, former Facebook COO, once noted: “We need women’s voices heard and heeded, not overlooked.”

Let’s act on this:

  1. Advocate for accountability: Support policies like Kate Swaffer’s push for elder care reparations.
  2. Protect essential funding: Oppose Medicaid and Medicare cuts. Share stories with lawmakers.
  3. Amplify platforms like ABeautifulVoice.org, where truth fosters connection.
Part of our collective story is how to meaningfully hold grief and hope, acknowledging what cannot be changed and still envisioning all that can. - Carrie Newcomer, singer, songwriter, and author

Carrie Newcomer, singer, songwriter, and author

Who Will Speak for the Nightingale?

As I write this, Deborah Henson-Conant’s haunting lyrics echo:

“Who will sing for the Nightingale when she sleeps alone in the sun?”

We will. By sharing our stories—raw, unflinching, and true—we become the Nightingale’s chorus. We honor the Carters’ legacy, confront misogyny’s corrosive legacy, and rebuild systems that value dignity over profit.

The 2024 election’s scars run deep, but our stories can heal them. Let’s sing louder.

_____________

Disclaimer: This is my personal experience. It is shared for awareness and advocacy.

Blog Author:

Susan Troyer is author and curator of ABeautifulVoice.org.

 

Blog Co-Author: 

Image of Zuley, A Content Writer and Author

Zulekha Ali (“Zuley”) is a freelance writer with a commitment to delivering informative and impactful content to enrich readers’ understanding and empower them to make informed decisions.