Homebound seniors with health problems often have trouble getting care

Carolyn Dickens, 76, was sitting at her dining room table, struggling to catch her breath as her physician looked on with concern.

“What’s going on with your breathing?” asked Peter Gliatto, director of Mount Sinai’s Visiting Doctors Program.

“I don’t know,” she answered, so softly it was hard to hear. “Going from here to the bathroom or the door, I get really winded. I don’t know when it’s going to be my last breath.”

Dickens, a lung cancer survivor, lives in central Harlem. She has serious lung disease and high blood pressure and suffers regular fainting spells. In the past year, she has fallen several times and dropped to 85 pounds, a dangerously low weight.

And she lives alone, without any help – a highly perilous situation.

Across the country, nearly 2 million adults older than 65 are completely or mostly homebound, while an additional 5.5 million seniors can get out only with significant difficulty or assistance. This is almost surely an undercount, as the data is from more than a dozen years ago.

It’s a population whose numbers far exceed those living in nursing homes – about 1.2 million – yet it receives much less attention from policymakers, legislators and academics who study aging.

Consider some eye-opening statistics about completely homebound seniors from a 2020 study in JAMA Internal Medicine: Nearly 40% have five or more chronic medical conditions, such as heart or lung disease. Almost 30% are believed to have “probable dementia.” Seventy-seven percent have difficulty with at least one daily task such as bathing or dressing.

Almost 40% live by themselves.

That “on my own” status magnifies these individuals’ already considerable vulnerability, something that became acutely obvious during the COVID-19 outbreak, when the number of sick and disabled seniors confined to their homes doubled.

“People who are homebound, like other individuals who are seriously ill, rely on other people for so much,” said Katherine Ornstein, director of the Center for Equity in Aging at the Johns Hopkins School of Nursing. “If they don’t have someone there with them, they’re at risk of not having food, not having access to health care, not living in a safe environment.”

Research has shown that older homebound adults are less likely to receive regular primary care than other seniors. They’re also more likely to end up in the hospital with medical crises that might have been prevented if someone had been checking on them.

To better understand the experiences of these seniors, I accompanied Gliatto on some home visits in New York City. Mount Sinai’s Visiting Doctors Program, established in 1995, is one of the oldest in the nation. Only 12% of older U.S. adults who rarely or never leave home have access to this kind of home-based primary care.

Gliatto and his staff – seven part-time doctors, three nurse practitioners, two nurses, two social workers and three administrative staffers – serve about 1,000 patients in Manhattan each year.

First, Gliatto stopped in to see Sandra Pettway, 79, who never married or had children and has lived by herself in a two-bedroom Harlem apartment for 30 years.

Pettway has severe spinal problems and back pain, as well as Type 2 diabetes and depression. She has difficulty moving around and rarely leaves her apartment. “Since the pandemic, it’s been awfully lonely,” she told me.

When I asked who checks in on her, Pettway mentioned her next-door neighbor. There’s no one else she sees regularly.

Pettway told the doctor she was increasingly apprehensive about an upcoming spinal surgery. He reassured her that Medicare would cover in-home nursing care, aides and physical therapy services.

“Someone will be with you, at least for six weeks,” he said. Left unsaid: Afterward, she would be on her own. (The surgery went well, Gliatto reported later.)

Several blocks away, Gliatto visited Dickens, who has lived in her one-bedroom Harlem apartment for 31 years.

Dickens told me she hasn’t seen other people regularly since her sister, who used to help her, had a stroke. Most of the neighbors she knew well have died. Her only other close relative is a niece in the Bronx whom she sees about once a month.

Dickens worked with special education students for decades in New York City’s public schools. Now she lives on a small pension and Social Security – too much to qualify for Medicaid. (Medicaid, which serves low-income people, will pay for aides in the home. Medicare, which covers people older than 65, does not.) Like Pettway, she has only a small fixed income, so she can’t afford in-home help.

Every Friday, God’s Love We Deliver, an organization that prepares medically tailored meals for sick people, delivers a week’s worth of frozen breakfasts and dinners that Dickens reheats in the microwave. She almost never goes out. When she has energy, she tries to do a bit of cleaning.

Without the ongoing attention from Gliatto, Dickens doesn’t know what she’d do. “Having to get up and go out, you know, putting on your clothes, it’s a task,” she said. “And I have the fear of falling.”

The next day, Gliatto visited Marianne Gluck Morrison, 73, a former survey researcher for New York City’s personnel department, in her cluttered Greenwich Village apartment. Morrison, who doesn’t have any siblings or children, was widowed in 2010 and has lived alone since.

Morrison said she’d been feeling dizzy over the past few weeks, and Gliatto gave her a basic neurological exam, asking her to follow his fingers with her eyes and touch her fingers to her nose.

“I think your problem is with your ear, not your brain,” he told her, describing symptoms of vertigo.

Because she had severe wounds on her feet related to Type 2 diabetes, Morrison had been getting home health care for several weeks through Medicare. But those services – help from aides, nurses and physical therapists – were due to expire in two weeks.

“I don’t know what I’ll do then, probably just spend a lot of time in bed,” said Morrison, who also has congestive heart failure, chronic kidney disease and depression.

Morrison hasn’t left her apartment since November 2023, when she returned home after a hospitalization and several months at a rehabilitation center. “It’s hard to be by myself so much of the time,” she told me.

Still, she endures. “It’s kind of amazing how people find ways to get by,” Bruce Leff, director of the Center for Transformative Geriatric Research at the Johns Hopkins School of Medicine, said when I asked about homebound older adults who live alone. “There’s a significant degree of frailty and vulnerability, but there is also substantial resilience.”

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