Carolyn Dickens, 76, sat at her dining room table, struggling to breathe as her doctor looked on with concern.
“What’s wrong with your breathing?” asked Peter Gliatto, director of Mount Sinai’s Visiting Doctors Program.
“I don’t know,” he replied, so softly it was hard to hear. “Going from here to the bathroom or the door, I’m terrible. I don’t know when my last breath will be.’
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Dickens, a lung cancer survivor, lives in central Harlem, barely making ends meet. He has severe lung disease and high blood pressure and suffers from periodic dizziness. In the past year, he has collapsed several times and is down to a dangerously low weight of 85 pounds.
And he lives alone, without any help, a very dangerous situation.
Nationwide, about 2 million adults over age 65 are completely or mostly at home, and an additional 5.5 million seniors can only get out with great difficulty or assistance. This is almost certainly an undercount, as the data is from more than a dozen years ago.
This is a population that far outnumbers those living in nursing homes – about 1.2 million – and yet receives less attention from policymakers, legislators and academics who study aging.
Consider statistics on the elderly who are completely homebound from a study published in 2020. JAMA Internal Medicine: Almost 40% have five or more chronic diseases, such as heart or lung diseases. Almost 30% think they have “possible dementia”. Seventy-seven percent have difficulty with at least one daily task, such as bathing or dressing.
Almost 40% live on their own.
This “on my own” situation already greatly increases the vulnerability of these people, something that was very evident during the outbreak of covid-19, when the number of sick and disabled people confined to their homes doubled.
“Homebound people, like other seriously ill people, rely on other people 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 anyone with them, they risk not having food, not having health care, not living in a safe environment.”
Research has shown that adults with older adults at home are less likely to receive regular primary care than other older adults. You’re also more likely to end up in the hospital with medical crises that could have been avoided if someone had checked.
To better understand the experiences of these seniors, I accompanied Gliatto on a series of home visits in New York. Mount Sinai’s Visiting Physician Program, established in 1995, is one of the nation’s oldest. It’s only 12% of US adults those who rarely or never leave their homes have access to this type of primary home care.
Gliatto and his staff — seven part-time physicians, three nurse practitioners, two nurse practitioners, two social workers and three administrative staff — serve about 1,000 patients in Manhattan each year.
These patients have complicated needs and require a high level of support. In recent years, Gliatto has had to cut staff as Mount Sinai reduced its financial contribution to the program. It does not make a profit because the reimbursement for services is small and the expenses are high.
First, Gliatto stopped to see Sandra Pettway, 79, who has never married or had children and has lived on her own for 30 years in a two-bedroom Harlem apartment.
Pettway has severe spinal problems and back pain, as well as type 2 diabetes and depression. He has difficulty getting around and rarely leaves his apartment. “Since the pandemic, it’s been incredibly lonely,” she told me.
When I asked who checks, Pettway mentioned the next door neighbor. There is no one else he sees regularly.
Pettway told the doctor that he was becoming increasingly apprehensive about a spinal surgery. He was assured that Medicare would cover home nursing care, aides and physical therapy services.
“Someone will be with you for at least six weeks,” he said. It goes without saying: Then he would be on his own. (April’s surgery went well, Gliatto later reported).
The doctor listened intently as Pettway talked about his memory lapses.
“I remember when I was one year old, but I don’t remember 10 minutes ago,” he said. He told her he thought she was managing well, but would schedule tests if there was further evidence of cognitive decline. For now, he said, he’s not particularly worried about his ability to manage on his own.
A few blocks away, Gliatto visited Dickens, who has lived in his one-bedroom Harlem apartment for 31 years. Dickens told me that he hasn’t seen another person regularly since his sister, who was helping him, had a stroke. Most of the neighbors he knew well have died. His only other close relative is a niece from the Bronx who he sees once a month.
Dickens worked with special education students for decades in New York public schools. He now lives on a small pension and Social Security, too much for Medicaid. (Medicaid, a program for low-income people, will pay for home aides. Medicare, which covers people 65 and older, will not.) Like Pettway, she has only a small fixed income, so she can’t afford it. – Home help.
Every Friday, God’s Love We Deliver, an organization that prepares medical meals for patients, serves frozen breakfasts and dinners that Dickens reheats in the microwave for a week. He hardly ever goes out. When he has the energy, he tries to do some cleaning.
Without Gliatto’s constant attention, Dickens doesn’t know what he would do. “Having to get up and go out, you know, get dressed, it’s a task,” she said. “And I’m afraid of falling.”
The next day, Gliatto visited 73-year-old Marianne Gluck Morrison, a former survey researcher for the New York City Department of Labor, in her ramshackle Greenwich Village apartment. Morrison, who has no siblings or children, was widowed in 2010 and has lived alone ever since.
Morrison said she had been dizzy for the past few weeks, and Gliatto did a basic neurological exam, asking her to follow her fingers to her eyes and touch her fingers to her nose.
“I think your problem is your ear, not your brain,” he told her, describing the symptoms of vertigo.
With severe foot injuries related to type 2 diabetes, Morrison had been receiving home health care through Medicare for several weeks. But those services – support from aides, nurses and physiotherapists – were to expire in two weeks.
“I don’t know what I’m going to do then, probably spend a lot of time in bed,” Morrison told me. His other medical conditions include congestive heart failure, osteoarthritis, irregular heartbeat, chronic kidney disease and depression.
Morrison hasn’t left her apartment since November 2023, when she returned home to a rehabilitation center after several months in the hospital. Climbing the three flights of stairs leading up to his apartment building is very difficult.
“It’s hard to be alone for so long. It’s lonely,” he told me. “I would like people to see it at home. But at the moment, because of the confusion, I can’t do it.’
When I asked Morrison who she felt she could confide in, she listed Gliatto and a mental health therapist at the Henry Street Settlement’s social services agency. He has a close friend that he talks to on the phone most nights.
“The problem is that I’ve lost eight to nine friends in the last 15 years,” he said with a heavy sigh. “They’re dead or gone.”
Bruce Leff, director of the Center for Transformative Geriatrics Research at the Johns Hopkins School of Medicine, is a leading advocate for home medical care. “It’s amazing how people find ways to get by,” she said when I asked about seniors living alone at home. “There is a high degree of vulnerability and vulnerability, but there is also a high degree of resilience.”
With the rapid expansion of the aging population in the coming years, Leff is confident that more types of care will move into the home, everything from rehabilitation services to palliative care to hospital-level services.
“It will be impossible to build enough hospitals and health facilities to meet the demand of an aging population,” he said.
But that will be a challenge for senior citizens who are on their own. Without family caregivers, there may be no one to help manage this household care.
KFF Health Newsformerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism on health issues and is one of the leading program operators. KFF — Independent source for health policy research, polling and journalism.
