Carolyn Dickens, 76, was sitting at her dining room table, struggling to catch her breath as her physician looked on with concern.<\/p>\n
\u201cWhat\u2019s going on with your breathing?\u201d asked Peter Gliatto, director of Mount Sinai\u2019s Visiting Doctors Program.<\/p>\n
\u201cI don\u2019t know,\u201d she answered, so softly it was hard to hear. \u201cGoing from here to the bathroom or the door, I get really winded. I don\u2019t know when it\u2019s going to be my last breath.\u201d<\/p>\n
Dickens, a lung cancer survivor, lives in central Harlem, barely getting by. She has serious lung disease and high blood pressure and suffers regular fainting spells. In the past year, she\u2019s fallen several times and dropped to 85 pounds, a dangerously low weight.<\/p>\n
And she lives alone, without any help \u2014 a highly perilous situation.<\/p>\n
Across the country, about 2 million adults 65 and older 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, since the data is from more than a dozen years ago.<\/p>\n
It\u2019s a population whose numbers far exceed those living in nursing homes \u2014 about 1.2 million \u2014 and yet it receives much less attention from policymakers, legislators, and academics who study aging.<\/p>\n
Consider some eye-opening statistics about completely homebound seniors from a study published in 2020 in JAMA Internal Medicine<\/a>: Nearly 40% have five or more chronic medical conditions, such as heart or lung disease. Almost 30% are believed to have \u201cprobable dementia.\u201d Seventy-seven percent have difficulty with at least one daily task such as bathing or dressing.<\/p>\n Almost 40% live by themselves.<\/p>\n That \u201con my own\u201d status magnifies these individuals\u2019 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.<\/p>\n \u201cPeople who are homebound, like other individuals who are seriously ill, rely on other people for so much,\u201d said Katherine Ornstein, director of the Center for Equity in Aging at the Johns Hopkins School of Nursing. \u201cIf they don\u2019t have someone there with them, they\u2019re at risk of not having food, not having access to health care, not living in a safe environment.\u201d<\/p>\n Research has shown that older homebound adults are less likely to receive regular primary care than other seniors. They\u2019re also more likely to end up in the hospital with medical crises that might have been prevented if someone had been checking on them.<\/p>\n To better understand the experiences of these seniors, I accompanied Gliatto on some home visits in New York City. Mount Sinai\u2019s Visiting Doctors Program, established in 1995, is one of the oldest in the nation. Only 12% of older U.S. adults<\/a> who rarely or never leave home have access to this kind of home-based primary care.<\/p>\n Gliatto and his staff \u2014 seven part-time doctors, three nurse practitioners, two nurses, two social workers, and three administrative staffers \u2014 serve about 1,000 patients in Manhattan each year.<\/p>\n These patients have complicated needs and require high levels of assistance. In recent years, Gliatto has had to cut staff as Mount Sinai has reduced its financial contribution to the program. It doesn\u2019t turn a profit, because reimbursement for services is low and expenses are high.<\/p>\n 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.<\/p>\n 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. \u201cSince the pandemic, it\u2019s been awfully lonely,\u201d she told me.<\/p>\n When I asked who checks in on her, Pettway mentioned her next-door neighbor. There\u2019s no one else she sees regularly.<\/p>\n 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.<\/p>\n \u201cSomeone will be with you, at least for six weeks,\u201d he said. Left unsaid: Afterward, she would be on her own. (The surgery in April went well, Gliatto reported later.)<\/p>\n The doctor listened carefully as Pettway talked about her memory lapses.<\/p>\n \u201cI can remember when I was a year old, but I can\u2019t remember 10 minutes ago,\u201d she said. He told her that he thought she was managing well but that he would arrange testing if there was further evidence of cognitive decline. For now, he said, he\u2019s not particularly worried about her ability to manage on her own.<\/p>\n \t\t\t\t\t<\/p>\n \t\t\t\t\t<\/p>\n Several blocks away, Gliatto visited Dickens, who has lived in her one-bedroom Harlem apartment for 31 years. Dickens told me she hasn\u2019t seen other people regularly since her sister, who used to help her out, 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.<\/p>\n Dickens worked with special-education students for decades in New York City\u2019s public schools. Now she lives on a small pension and Social Security \u2014 too much to qualify for Medicaid. (Medicaid, the program for low-income people, will pay for aides in the home. Medicare, which covers people over age 65, does not.) Like Pettway, she has only a small fixed income, so she can\u2019t afford in-home help.<\/p>\n Every Friday, God\u2019s Love We Deliver, an organization that prepares medically tailored meals for sick people, delivers a week\u2019s 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.<\/p>\n Without the ongoing attention from Gliatto, Dickens doesn\u2019t know what she\u2019d do. \u201cHaving to get up and go out, you know, putting on your clothes, it\u2019s a task,\u201d she said. \u201cAnd I have the fear of falling.\u201d<\/p>\n The next day, Gliatto visited Marianne Gluck Morrison, 73, a former survey researcher for New York City\u2019s personnel department, in her cluttered Greenwich Village apartment. Morrison, who doesn\u2019t have any siblings or children, was widowed in 2010 and has lived alone since.<\/p>\n Morrison said she\u2019d 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.<\/p>\n \u201cI think your problem is with your ear, not your brain,\u201d he told her, describing symptoms of vertigo.<\/p>\n 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 \u2014 help from aides, nurses, and physical therapists \u2014 were due to expire in two weeks.<\/p>\n \u201cI don\u2019t know what I\u2019ll do then, probably just spend a lot of time in bed,\u201d Morrison told me. Among her other medical conditions: congestive heart failure, osteoarthritis, an irregular heartbeat, chronic kidney disease, and depression.<\/p>\n Morrison hasn\u2019t left her apartment since November 2023, when she returned home after a hospitalization and several months at a rehabilitation center. Climbing the three steps that lead up into her apartment building is simply too hard.<\/p>\n \u201cIt\u2019s hard to be by myself so much of the time. It\u2019s lonely,\u201d she told me. \u201cI would love to have people see me in the house. But at this point, because of the clutter, I can\u2019t do it.\u201d<\/p>\n When I asked Morrison who she feels she can count on, she listed Gliatto and a mental health therapist from Henry Street Settlement, a social services organization. She has one close friend she speaks with on the phone most nights.<\/p>\n \u201cThe problem is I\u2019ve lost eight to nine friends in the last 15 years,\u201d she said, sighing heavily. \u201cThey\u2019ve died or moved away.\u201d<\/p>\n Bruce Leff, director of the Center for Transformative Geriatric Research at the Johns Hopkins School of Medicine, is a leading advocate of home-based medical care. \u201cIt\u2019s kind of amazing how people find ways to get by,\u201d he said when I asked him about homebound older adults who live alone. \u201cThere\u2019s a significant degree of frailty and vulnerability, but there is also substantial resilience.\u201d<\/p>\n With the rapid expansion of the aging population in the years ahead, Leff is convinced that more kinds of care will move into the home, everything from rehab services to palliative care to hospital-level services.<\/p>\n \u201cIt will simply be impossible to build enough hospitals and health facilities to meet the demand from an aging population,\u201d he said.<\/p>\n But that will be challenging for homebound older adults who are on their own. Without on-site family caregivers, there may be no one around to help manage this home-based care.<\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\nUSE OUR CONTENT<\/h3>\n