Marvin and Natalie Albin lived a simple, 20th-century-America success story. The children of European Jewish immigrants, they met in the Bronx, N.Y., as teens, married in their early 20s in 1946, settled in Paramus, N.J., and raised four children. Marvin worked as an independent contractor; Natalie was a homemaker and public school teacher for 28 years. Both worked hard, saved carefully, and were self-sustaining well into retirement.
In 2000, Natalie was diagnosed with lymphoma. Natalie and Marvin’s daughter Fran Cronin, a writer and graduate student living in the Boston area, watched her mother go through years of chemotherapy and other treatments until Natalie could tolerate no more. Medical practitioners kept suggesting additional tests and procedures, Fran says, but with no real hope of giving Natalie more quality time. Natalie resolved to spend her remaining days with loved ones, not doctors, a decision her family supported. Natalie was 78 when she died in December 2004.
After a year alone in the family home, Marvin moved into an apartment. Into his early 80s, he was in good health, still walking 18 holes for his regular golf games with friends. Then, in 2008, weakness and instability in his feet led to a diagnosis of neuropathy. As it progressed, Marvin went from being an active, independent man to having difficulty getting around.
Marvin’s son Steven Albin, who lived closer than Fran and their two other brothers, tried to manage Marvin’s escalating need for assistance. In May 2011, father and son were out to dinner when Marvin fell and was hospitalized for four days as doctors assessed Marvin’s health. Due to difficulty with his balance, doctors would not release Marvin to his apartment. His son Steven determined he could not assume a greater caretaking role -- and, Fran recalls, "I had always said I would love for Dad to be up near me. So my brothers said, ‘Here’s your chance.’"
A single mother raising two teens while studying at Harvard University, Fran already had a lot to manage. But with her father’s hospital release imminent, she says, "We had to scramble. We had to find a facility that could handle the level of care my dad needed, that accepted his Medicare, that had an opening and that was in proximity to where I lived — and all very quickly. When you don’t know anything about any of this, it’s a pretty steep learning curve."
In an article she wrote for CommonHealth, a Web site affiliated with Boston-based WBUR where she is now a contributing writer, Fran described the gauntlet the family had to run. "In moving my father from a New Jersey hospital to a Massachusetts rehab facility and then to assisted living, the question always posed with each transition — prior to discussing need — was about my father’s Medicare coverage," she wrote. "Medicare allowances controlled the length of my father’s hospital stay. They controlled our choice of rehab facility and length of stay. And [they] ensured that Medicare would not support my father’s residence in an assisted living facility."
Before Marvin arrived at the assisted living facility in Cambridge, where he now lives, he transitioned through three other care facilities. "With each move, my father’s records were transferred along with chronic tweaking to his medication protocol and unclear notes made to his chart," Fran wrote. "Invariably, changes would be questioned, a slew of exchanges between the two facilities would ensue; there would be another retrieval of past records, and, also invariably, a bad round of telephone tag. My father’s care remained in limbo until the cloud of confusion cleared."
Several months after helping her father relocate, Fran is still reconstructing in Massachusetts the level of health care support her father had in New Jersey. "Dad has a primary care doctor, a physiatrist, a physical therapy person, an ophthalmologist, a cardiologist, a dermatologist, and a podiatrist" she says. And as soon as she can get the appointment arranged, he’s going to have a neurologist as well. She books and takes him to his medical appointments and oversees the many medications he takes. She is at his assisted living facility almost every day, once showing up just in time to take him to the emergency room after another fall.
Despite his difficulties, Marvin transitioned into his assisted living facility well and has now been there for six months. He is stable, although often expresses frustration with his body not functioning as it once did and his mind not being as sharp. Overall, his health is good and he is surrounded by caring attention and kindness. Mostly, Fran says, she thinks her father is less anxious now that he no longer has to fend for himself: "Before the fall that precipitated his move, he needed to take Ambien every night to sleep." Marvin now sleeps without assistance. It’s also one less medication he has to take daily.
Although her father is stable, Fran says her dad is still dependent on her to run his errands, help him with his assorted doctor appointments, and provide companionship. She says she’s fortunate she has a flexible schedule: "What if I was stuck at an 8-to-5 job every day and I couldn’t say, ‘I have to take my dad to a doctor’s appointment’?" She says it is not lost on her that, even though her father is in an assisted living setting, managing his needs is "more demanding than the care I give to my two children."
She and her brothers continue to do their best to help Marvin navigate the health care system. But increasingly, she says, she sees the system falling short in delivering care to patients, and in supporting and coordinating with caregivers.