Part II: The Long Arc of Caregiving for Eleanor Neil

This is the 2nd part in a 3 part story. To read part one click here.

The home health aide noticed it first: Ms. Neil’s* listlessness and her elevated temperature. Something wasn’t right.  

She also had pain in her belly and needed to use the restroom every few minutes. For someone living with chronic kidney disease, the risk of a severe urinary tract infection (UTI) was not abstract. Left untreated, it could lead to sepsis and become life-threatening. 

The message reached her team at Project Guardianship quickly. 

“And just as quickly,” the case manager recalled, “we knew this wasn’t going to be simple.” 

Ms. Neil refused care. 

She insisted she was fine. She did not want to see a doctor. She did not want to leave her apartment. 

On its face, it might have sounded like a disagreement over medical judgment. But the team understood that something deeper was at play. 

Two years before, Ms. Neil had experienced a distressing medical situation. It left a mark—not only on her memory, but on her willingness to engage with any form of healthcare. Since then, she hadn’t ventured out at all. 

“She wasn’t just saying no to a doctor’s visit,” the attorney said. “She was protecting herself from something that felt frightening and out of her control.” 

The PG team knew they couldn’t mandate Ms. Neil to comply with medical treatment, nor would they want to.  

“Forcing the issue might have addressed the infection,” the attorney added. “But it would have come at a cost—to her trust, to her sense of autonomy, and to any future ability to engage her in care.” 

Instead, they slowed down. 

“A lot of this work is about tolerating urgency without abandoning your principles,” the case manager said. 

What followed was not a single intervention, but a sustained effort: hours of phone calls, visits, conversations. The team validated Ms. Neil’s fears, answered her questions, and offered reassurance without pressure. They returned, again and again, with the same message: you have a choice, and we are here to support you. 

“It wasn’t linear,” the case manager said. “Some days felt like progress. Some days felt like starting over.” 

Gradually, something shifted. 

With her symptoms increasing, Ms. Neil consented to a visit from a nurse practitioner. The team arranged for an advanced in-home UTI test to identify the bacteria or virus causing the infection and start her on the right combination of antibiotics, reducing the need for immediate hospitalization. 

Each step was small. Each step mattered. 

And then came a larger one. 

With encouragement from her home health aide—and real-time support from the PG team—Ms. Neil left her apartment and went to a nearby clinic for further diagnostic evaluation to keep her chronic kidney disease in check. 

“It was a huge moment for her,” the case manager said. “Not just medically. Psychologically.” 

From there, the trajectory began to change. Ms. Neil started engaging with medical care more consistently. She began leaving her apartment more regularly—first for appointments, then for short outings. 

The team adapted alongside her. 

The staff attorney joined calls with her doctors, ensuring Ms. Neil could ask questions and feel heard. “We wanted her to know she had an advocate,” the attorney said. “That she wasn’t navigating those systems alone.” 

At the same time, the financial side of her care evolved. 

“In the beginning, it was about stabilization,” said the finance associate. “Organizing accounts, paying bills, putting basic safeguards in place.” 

But as Ms. Neil’s world expanded, so did the complexity of managing it. 

“My role became more hands-on,” he explained. 

“Monitoring for unusual activity, maintaining updated budgets, making sure we could sustain her private care while keeping her within Medicaid eligibility.” 

Just as importantly, engaging with her own finances was grounding for Ms. Neil. 

“It helps her feel more in control,” another team member added. 

Control, for Ms. Neil, was not a small thing. It was central to her identity, to her fears, and to her progress. 

By the following year, she was leaving her apartment regularly. She was engaged with care. She was, in many ways, moving forward. 

But forward does not always mean stable. 

And for Ms. Neil, the next shift would bring a different kind of challenge—one that required the team to rethink, once again, what support could look like. 

Stay tuned for Part 3....

At its core, Project Guardianship is a caregiver. This May, please take a moment to honor a caregiver who has impacted your life or the life of a person close to you with a gift of any amount to Project Guardianship. Honorees receive a letter of recognition and a permanent place on our virtual Honor Wall. Honor a Caregiver here.