As a Licensed Clinical Social Worker (LCSW), I’ve spent years immersed in the complexities of medical and mental health care. Abstract concepts like levels of care—primary, secondary, tertiary—are part of the daily vernacular in this profession. But when these abstractions collide with personal experience, the academic fades, and what remains is something more visceral: hope.
Navigating the gray areas of clinical decision-making is one of the most challenging aspects of this work. Care that is too aggressive can overwhelm an already fragile patient, while care that is too conservative risks missing crucial windows for intervention. Finding that balance is an art as much as a science—and as I’ve learned, sometimes it takes every ounce of persistence to secure the right level of care.
This is the story of how I fought for my father’s life, not just as his son, but as someone who knows how the system works—and how it often fails.
Recognizing the First Signs
Five years ago, I noticed the subtle signs that my father’s memory was slipping. His forgetfulness wasn’t alarming at first—memory lapses were always part of his personality—but something had shifted. The rate of decline felt disproportionate to the natural aging process.
I trusted my instincts. I diagnosed his dementia before any doctor had.
Despite my father’s initial resistance, I finally convinced him to see a neurologist. A full diagnostic workup confirmed what I already knew—early-stage dementia. The years that followed were slow-moving. He continued to drive, garden, and live independently. But we both knew that the clock was ticking.
The Day Everything Changed
One month ago, my father and mother were visiting my home, bringing breakfast as they often did. I received a call from my mother as they arrived:
“Max, you have to come downstairs.”
I imagined they were in a rush. Instead, I found my father clinging to a pole near the entrance to my building, shaking and unable to walk. His voice trembled. Something was wrong—something that no longer fit the predictable pattern of his dementia.
Within hours, he went from gardening and driving to being unable to stand.
Entering the Medical Maze
We bypassed his primary care physician. He couldn’t walk, and without assistive devices, getting him to a clinic wasn’t an option. We opted for the Emergency Room.
After one week in the hospital, there was no diagnosis. He left weaker but was referred to inpatient rehabilitation.
For four days after rehab, my father seemed stable—until he bottomed out completely. He couldn’t speak clearly. He couldn’t walk. His confusion was so severe that he repeatedly attempted to stand, forgetting his inability to do so.
I called the ambulance.
After another hospital stay, the diagnosis was Parkinson’s disease. A label of convenience, it seemed. It didn’t explain the sudden acceleration of symptoms, and as a family, we were left with more questions than answers.
The Tipping Point
Rehab followed again, but this time with minimal improvement. We installed stair lifts and hospital beds at home, rotating shifts with health aides to prevent falls. My father no longer remembered he couldn’t walk.
It was obvious—this wasn’t Parkinson’s.
His primary neurologist agreed. One month after his return home, she told us bluntly:
“He’s much worse. We need to move to tertiary care.”
The Last Stop for Hope
At this point, a higher level of care wasn’t just a medical term—it was survival.
We drove to New York-Presbyterian Hospital, armed with referral papers, neurologist notes, and the weight of knowing this was the last chance to halt the downward spiral. I wheeled him to the ER and shouted for help.
The diagnosis that emerged: rapidly progressing dementia, obscured by atypical symptoms.
What I’ve Learned
For years, I understood levels of care as academic models. Now, I see them for what they truly are—steps along a path toward hope.Each level represents a new chance, a different lens, a possibility of more time.
•Primary care offers the familiar and the routine. It catches the low-hanging fruit but isn’t equipped for complexity.
•Secondary care steps in when the path veers into unfamiliar territory. ER visits, hospital stays, and rehab facilities stabilize but rarely uncover the full picture.
•Tertiary care is where the rare and severe find attention—where specialized knowledge becomes the difference between deterioration and recovery.
Why It Matters
I share this story not just to highlight the gaps in care but to emphasize one critical point:
If you believe there’s more to uncover, don’t stop searching.
Systems are fallible. Diagnoses can be wrong. And sometimes, persistence is the only thing standing between a loved one and the care they deserve.
For those navigating complex medical journeys—trust your instincts, push for the right level of care, and never forget that every step holds the possibility of hope.
Author Info:
Max E. Guttman
Max E. Guttman is the owner of Mindful Living LCSW, PLLC, a private mental health practice in Yonkers, New York.
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