Carolyn Dickens, 76, sat at her dining room table, struggling to catch her breath 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,” she replied so softly it was hard to hear. “When I go from here to the bathroom or the door, I really get out of breath. I don’t know when it will be my last breath.”
Dickens, a lung cancer survivor, lives in downtown Harlem and is barely making ends meet. She has severe lung disease and high blood pressure and faints regularly. Over the past year she has fallen several times and lost up to 35 kilos, a dangerously low weight.
And she lives alone, without any help – an extremely dangerous situation.
Nationwide, approximately 2 million adults age 65 and older are completely or mostly homebound, while another 5.5 million seniors can only get out with significant effort or assistance. This is almost certainly an undercount, as the data is from more than twelve years ago.
It’s a population whose numbers far outnumber those in nursing homes — about 1.2 million — and yet it receives far less attention from policymakers, lawmakers and academics researching aging.
Consider some startling statistics about completely homebound seniors from a study published in 2020 in JAMA Internal Medicine: Nearly 40% have five or more chronic medical conditions, such as heart or lung disease. It is believed that almost 30% have ‘probable dementia’. Seventy-seven percent have difficulty with at least one daily task, such as bathing or dressing.
Almost 40% live on their own.
That “on my own” status increases the already significant vulnerability of these individuals, something that became abundantly clear during the Covid-19 outbreak, when the number of sick and disabled seniors confined to their homes doubled.
“People who are homebound, like other people who are seriously ill, depend 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 anyone there with them, they run the risk of not having food, not having access to health care and 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 are also more likely to end up in the hospital with medical crises that could have been prevented if someone had checked on them.
To better understand the experiences of these seniors, I accompanied Gliatto on several home visits in New York City. Founded in 1995, Mount Sinai’s Visiting Doctors Program is one of the oldest in the country. Only 12% of older American adults who rarely or never leave home have access to this type of primary care at home.
Gliatto and his staff – seven part-time physicians, three nurses, two nurses, two social workers and three administrative staffers – serve approximately 1,000 patients in Manhattan each year.
These patients have complex needs and require a high level of assistance. In recent years, Gliatto has had to cut staff as Mount Sinai has reduced its financial contribution to the program. No profit is made because the compensation for services is low and the costs are high.
First, Gliatto stopped by Sandra Pettway, 79, who has never married, had no children and has lived alone in a two-bedroom apartment in Harlem for 30 years.
Pettway has serious spinal problems and back pain, as well as type 2 diabetes and depression. She has difficulty moving and rarely leaves her apartment. “It’s been terribly lonely since the pandemic,” she told me.
When I asked who checked her in, Pettway mentioned her neighbor. There is no one else who sees them regularly.
Pettway told the doctor that she was becoming increasingly anxious about upcoming spinal surgery. He assured her that Medicare would cover nursing care, aides and in-home physical therapy.
“Someone will be with you, at least for six weeks,” he said. Left unsaid: after that she would be on her own. (The April operation went well, Gliatto later reported.)
The doctor listened intently as Pettway talked about her memory loss.
“I can remember when I was a year old, but I can’t remember when I was 10 minutes ago,” she said. He told her he thought she was doing well, but that he would arrange tests if there was further evidence of cognitive decline. At this point, he said, he’s not really worried about her ability to make it on her own.
A few blocks away, Gliatto visited Dickens, who has lived in her one-bedroom apartment in Harlem for 31 years. Dickens told me that she has not seen other people regularly since her sister, who was helping her, had a stroke. Most of the neighbors she knew well have passed away. Her only other close relative is a niece in the Bronx, whom she sees about once a month.
Dickens worked for decades with special education students in New York City public schools. Now she lives on a small pension and Social Security – too much to qualify for Medicaid. (Medicaid, the program for low-income people, pays for home aids. Medicare, which covers people over age 65, does not.) Like Pettway, she has only a small fixed income, so she can’t afford afford -domestic 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 heats up in the microwave. She hardly ever goes out. When she has energy, she tries to clean a little.
Without Gliatto’s constant attention, Dickens doesn’t know what she would do. “Getting up and going outside, you know, putting on your clothes, that’s a task,” she said. “And I have a fear of falling.”
The next day, Gliatto visited Marianne Gluck Morrison, 73, a former investigative researcher for New York City’s human resources department, at her cluttered Greenwich Village apartment. Morrison, who has no siblings or children, was widowed in 2010 and has lived alone since then.
Morrison said she had been feeling dizzy for 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 the symptoms of dizziness.
Because she had severe wounds on her feet related to type 2 diabetes, Morrison had been receiving home care through Medicare for several weeks. But those services — help from aides, nurses and physical therapists — were set to expire in two weeks.
“I don’t know what I’ll do then, I’ll probably just spend a lot of time in bed,” Morrison told me. Among her other medical conditions: congestive heart failure, osteoarthritis, an irregular heartbeat, chronic kidney disease and depression.
Morrison has not left her apartment since November 2023, when she returned home after a hospital stay and several months in a rehabilitation center. Climbing the three steps leading to her apartment building is just too difficult.
“It’s hard to be alone so much. It’s lonely,” she told me. “I would like people to see me in the house. But right now I can’t do that because of the mess.”
When I asked Morrison who she thinks she can count on, she named Gliatto and a mental health therapist from Henry Street Settlement, a social service organization. She has a good friend with whom she speaks on the phone most evenings.
“The problem is, I’ve lost eight or nine friends in the last fifteen years,” she said with a heavy sigh. “They died or moved away.”
Bruce Leff, director of the Center for Transformative Geriatric Research at Johns Hopkins School of Medicine, is a leading advocate of home-based medical care. “It’s kind of amazing how people find ways to make ends meet,” he said when I asked him about homebound older adults who live alone. “There is a significant degree of fragility and vulnerability, but there is also significant resilience.”
With the rapid growth of the aging population in the coming years, Leff is convinced that more and more types of care will move into the home, from rehabilitation services to palliative care to hospital-level services.
“It will simply be impossible to build enough hospitals and health facilities to meet the demands of an aging population,” he said.
But that will be a challenge for homebound older adults who are on their own. Without family caregivers on site, there may be no one around to help manage this home care.
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