Zayden has been home since December 9, 2024. Since then, we’ve worked with four different nursing agencies to secure the 168 hours of weekly nursing coverage he is entitled to. Unfortunately, the best we’ve managed is up to 80 hours of coverage per week for a short time. The remaining care hours have fallen on me, family members, and friends. Thankfully, Zayden has remained relatively stable, with minimal emergencies or complications related to his medical needs.
However, our experience with nurses has been challenging. Some show up for a few shifts and then disappear, ghosting both our family and their employer. Others think their job begins and ends with merely being present—wearing earbuds or scrolling on their phones for most of their shift. We’ve encountered nurses who sleep through their shifts, make misleading claims to agencies before quitting, or try to dictate terms and schedules that don’t suit Zayden’s needs. Some decline the assignment entirely when they learn he doesn’t always sleep through the night. Others accept the job, only to cancel last minute, arrive late, or demand frequent schedule changes, forcing our family to forgo outside employment opportunities.
When nursing agencies identify a potential nurse, I participate in meet-and-greets. Before these meetings, I ensure the agency informs candidates about my expectations, personality, and the unique dynamics of our family. With so much on my plate, I can’t afford to waste time on nurses who might not be a good fit for our household. Similarly, I want to respect the nurse's time if they feel they won’t work well with us. Zayden, though medically stable for the most part, needs attentive care. While his medical needs involve monitoring and basic care, his physical and developmental needs require someone who’s willing to engage with him—playing, stretching his muscles, giving massages, and helping him build essential skills. We need nurses who are resilient, adaptable, and comfortable navigating the complexities of our family life.
Our household is unique, with multiple parent-child and adult-child dynamics to navigate, in addition to extended family relationships. We don’t live in a luxurious mansion. Instead, we call a modest home on five acres—situated in the middle of a field—our home. We live on a tight budget, not out of choice, but because it’s nearly impossible to hold full-time jobs without consistent full-time care for Zayden. Frequent doctor’s appointments for Zayden further complicate employment prospects, as few employers can accommodate such irregular schedules.
I’m realistic enough to understand that not all personalities will align. I know I’m often perceived as blunt, demanding, or even abrasive. I don’t sugarcoat things—I believe in direct communication. At least with me, people always know where they stand. This approach doesn’t change, whether I’m speaking with family, friends, employees, or professionals. Now, back to the issue at hand: nursing care.
I’m deeply disappointed in the State of Florida’s approach to home healthcare. In a hospital setting, the average cost of nursing care is approximately $117 per hour, with nurses receiving $45–$60 of that amount. In stark contrast, home healthcare agencies are reimbursed only $15–$35 per hour. Consequently, nurses in home healthcare face burnout due to low pay, minimal benefits, and limited opportunities for growth or raises. They also don’t get paid if their patient is hospitalized. These nurses shoulder immense responsibility—working solo without the immediate backup of a team or doctor, relying on EMS in emergencies, and often assisting families with little or no medical training.
Some states have introduced family home health aide programs, allowing family members to be paid for caregiving. While this is a step in the right direction, many programs cap compensation at 40 hours per week, which hardly addresses the massive gaps in care caused by the nursing shortage.
These systemic issues make it incredibly difficult to find skilled, committed nurses with a strong work ethic who are willing to provide the quality of care Zayden—and many families like ours—deserve.
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