When I met a 78-year-old female resident at the New York City Upper East Side Nursing Home and Rehabilitation Center two years ago, I was just looking for a friend. At first, Maria* and I hung out mostly to get her out of the nursing home. She was in a wheelchair and needed someone to accompany her outside of the facility. Nearly every week for months, we traded stories, shared food, ran errands, and solved tech problems.
But my role in her life quickly turned to more of an advocate. Nursing home staff treated her better once I consistently showed up. I learned that Maria’s deepest desire was to move back to her apartment nine blocks away. She had lived in her home on the Upper East Side for over 50 years, and understandably, the nursing home—with its rodents, bland food, and grumbling staff that infantilized her—was not the environment in which Maria wanted to live the rest of her life. With no close family nearby, the fulfillment of her desire was impossible without the help of friends.
Maria is not alone in feeling this way. 92% of American older adults would prefer to age in their homes as long as possible, as opposed to an institutional facility.
To respect her dignity and autonomy, I knew I needed to give Maria the opportunity to pursue her strong desire to return home. So, with the help of many friends, Maria and I decided to do everything we could to move her out of the nursing home.
I knew I could not possibly provide the daily care and attention she needed on top of my other responsibilities, so we worked to get her approved for a home health aide. Maria and I navigated the intricacies of eldercare bureaucracy and finally got her approved for five hours a day.
After countless calls and many exchanges with the social worker at the nursing home, we eventually decided on a day to move her back to her home in the spring of 2024. Sadly, we had to repeatedly convince this social worker that Maria, who is confined to a wheelchair, needed a hospital bed in order to live on her own.
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Since last spring, Maria has been living comfortably in her home and developed relationships with her aides—and although she would greatly benefit from more aide hours, she simply can’t afford it. Maria not only needs assistance with her medication, personal care, and physical care in and out of the wheelchair, but also with basic help like running errands, filing paperwork, and feeding her cats.
Maria is fortunate in that her situation is better aligned with how the current, rigid in-home care system is structured. She is covered by Medicaid and Medicare, and because of that, she doesn’t have to pay for her aide to come every day. It can be far worse for those in the middle—those who can’t afford private help, but also don’t qualify for government benefits. This is all the more challenging, particularly in cities like New York City, where older individuals are often aging alone without family. In New York, 35% of women ages 65 and older and 55% of women ages 85 and older live alone. Navigating the bureaucracy and regulations involved in receiving elder care was difficult enough for Maria, a former social worker herself, and me. Imagine those without any help, little financial means, and, as is often the case, declining memory.
Changes in 2013 to federal rules for in-home caregivers only made the caregiving options available for elderly individuals, like Maria, more bureaucratic, standardized, and expensive. This is on top of all the normal challenges that come with aging.
Thankfully, a proposed rule to reverse the 2013 changes would make in-home care—what most seniors desire–-less expensive and more accessible. Americans have until September 2 to advocate for our elders and urge the rule to move forward. This rule would open the door for more affordable and attainable eldercare options without burdensome regulations.
Older individuals need to have the freedom to craft caregiving options that work best for both their caregivers and themselves without fear of infringing on a government-imposed one-size-fits-all option. At the same time, we must preserve safeguards so that both parties are protected and abuse is mitigated. By giving power back to those more directly involved, we will reach more effective eldercare solutions.
The needs of each elderly individual are unique and varied, and span beyond medical and financial to emotional and relational. The needs of caregivers are diverse as well. So it is necessary to create conditions for flexible, community-based eldercare arrangements that address the holistic needs of all involved to flourish.
As Americans on average are getting older and living longer, we need to look to more innovative eldercare options that preserve the dignity of individuals and remove barriers and regulations that stifle creativity. Reversing the 2013 changes is one step in the right direction for all the Marias in the United States—and for the many more whose situations are even more precarious.
*Name has been changed to protect the identity of this individual.
Makenna McCoy is a freelancer in Brooklyn, NY; Coordinator-in-Residence at Do For One, a relationship-building program that brings isolated people into greater community life; Contributor at Here to Honor, a social enterprise that cultivates community around end-of-life learning; and a Contributor at Independent Women.
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