Carolyn Dickens, 76, sat at her dining room table, struggling to catch her breath as doctors watched anxiously.
“How’s your breathing?” asked Peter Guriat, director of Mount Sinai’s Visiting Physician Program.
“I don’t know,” she answered in a voice so quiet it was hard to hear. “I get really nervous when I go to the bathroom or the front door from here. I don’t know when I’m going to take my last breath.”
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Dickens, a lung cancer survivor, barely survives in downtown Harlem. She has severe lung disease and high blood pressure, and regularly suffers from fainting. Over the past year, she has had several falls and her weight has dropped to 85 pounds, making her dangerously underweight.
And she lives alone without anyone’s help, and the situation is extremely dangerous.
Nationwide, approximately 2 million adults aged 65 and older are completely or mostly homebound, and an additional 5.5 million older adults are unable to leave their homes without significant hardship or assistance. This is almost certainly an underestimate, as the data is a dozen years old.
This population far exceeds the number of people living in nursing homes (approximately 1.2 million people), but it has received little attention from policymakers, lawmakers, and academics who study aging.
Consider the eye-opening statistics about fully homebound older adults from a 2020 study published in JAMA Internal Medicine. Nearly 40% have five or more chronic conditions, including heart and lung disease. Almost 30% are considered to have “possible dementia.” 77% have difficulty with at least one daily activity, such as bathing or dressing.
Approximately 40% live alone.
This “on my own” position further magnifies the already considerable vulnerability of these populations, which is especially true for elderly people with illnesses and disabilities who are confined to their homes during the COVID-19 pandemic. This became more apparent when the number doubled.
“Homebound people, like other seriously ill patients, rely on others for many things,” said Katherine Ornstein, director of the Center for Aging Equity at the Johns Hopkins University School of Nursing. “If you don’t have someone with you, you risk not having food, not having access to medical care, not having a safe environment to live in.”
Research shows that homebound older adults are less likely than other older adults to receive regular primary care. They are also more likely to be hospitalized due to a medical crisis that could have been prevented if someone had checked on them.
To better understand the experiences of these seniors, I accompanied Griatt on a home visit in New York City. Mount Sinai’s Visiting Physician Program was established in 1995 and is one of the oldest programs in the country. Only 12% of older Americans who rarely or never leave their homes have access to this type of home-based primary care.
Mr. Griatt and his staff (seven part-time physicians, three nurse practitioners, two nurse practitioners, two social workers, and three administrative staff) serve approximately 1,000 patients each year in Manhattan.
These patients have complex needs and require a high level of support. In recent years, Griatt has been forced to make staff cuts as Mount Sinai reduced its financial contributions to the program. Service reimbursement is low and expenses are high, making it unprofitable.
First, Griatt stopped by to meet Sandra Pettway, 79. She never married or had children and lived alone in a two-bedroom apartment in Harlem for 30 years.
Pettway suffers from severe spinal disease and back pain, as well as type 2 diabetes and depression. She has difficulty moving around and rarely leaves her apartment. “I’ve been so lonely since the pandemic,” she told me.
When asked who was checking on her, Pettway mentioned her next-door neighbor. Besides her, I don’t see anyone else regularly.
Pettway told her doctor that she was becoming increasingly anxious about her upcoming spinal surgery. He reassured her that Medicare would cover home care, aides, and physical therapy services.
“We’ll have someone with us for at least six weeks,” he said. Nothing was said: then she would be alone. (April’s surgery went well, Griatt later reported.)
Doctors listened carefully as Pettway talked about her memory loss.
“I remember when I was one year old, but I can’t remember what happened 10 minutes ago,” she says. He told her that he thought she was coping well, but that if there was further evidence of cognitive decline he would arrange for tests. For now, he said, he’s not particularly concerned about her ability to manage herself.
A few blocks away, Ms. Guriat visited Ms. Dickens, who has lived in a one-bedroom apartment in Harlem for 31 years. Dickens said she hasn’t seen other people regularly since her sister, who helped her, suffered a stroke. Most of the neighbors she knew well have passed away. Her only other immediate family is a niece who lives in the Bronx and whom she sees about once a month.
Dickens has worked with special education students in New York City public schools for decades. She currently lives on a small pension and Social Security, which is too much to qualify for Medicaid. (Medicaid, a program for low-income people, pays for in-home aides; Medicare, which covers people 65 and older, does not.) Like Pettway, she With only a small fixed income, they cannot afford to live. -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, which Dickens reheats in the microwave. She hardly goes out. When I have the energy, I try to do a little cleaning.
Without continued attention from Griat, Dickens has no idea what she would do. “I have to get up and go outside, get dressed and go to work,” she said. “And then there’s the fear of falling.”
The next day, Mr. Griatt visited Marianne Gluck Morrison, 73, a former research fellow with New York City’s Human Resources Department, in her cluttered Greenwich Village apartment. Mr Morrison has no siblings or children, but was widowed in 2010 and has lived alone ever since.
Ms. Morrison said she had been feeling dizzy for the past few weeks, and Mr. Guriat gave her a basic neurological exam and asked her to follow Mr. Morrison’s finger with her eyes and hold it up to her nose. Ta.
“I think your problem is with your ears, not your brain,” he told her, explaining the symptoms of vertigo.
Morrison had been receiving home health care through Medicare for several weeks because she had severe leg injuries related to type 2 diabetes. But those services, provided by aides, nurses and physical therapists, were due to expire in two weeks.
“I don’t know what to do then. I’ll probably spend a lot of time in bed,” Morrison told me. Her other medical conditions include congestive heart failure, osteoarthritis, arrhythmia, chronic kidney disease, and depression.
Mr Morrison was hospitalized in November 2023 and has not left his apartment since returning home after spending several months in a rehabilitation center. Climbing the three flights of stairs to her apartment building is too much work.
“It’s hard to be alone for long periods of time. It’s lonely,” she told me. “I’d like people to see me in the house. But at the moment, we can’t do that because of the chaos.”
When I asked Ms Morrison who she thought she could trust, she named Mr Griatt and a mental health therapist at Henry Street Settlement, a social services organization. She has one best friend who she talks to on the phone almost every night.
“The problem is, I’ve lost eight or nine friends in the last 15 years,” she said with a heavy sigh. “They either died or moved away.”
Bruce Leff, director of the Center for Transformative Geriatrics Research at the Johns Hopkins University School of Medicine, is a leading expert on home health care. “It’s kind of amazing how people find ways to survive,” he said when asked about elderly people who are homebound and living alone. “There is considerable vulnerability and vulnerability, but there is also considerable resilience.”
Lev believes that as the aging population rapidly expands in the coming years, more types of care will be brought into the home, from rehabilitation services to palliative care to hospital-level services.
“It is just not possible to build enough hospitals and medical facilities to meet the demands of an aging population,” he said.
However, this can be difficult for elderly people who are confined to their homes and alone. Without a family caregiver on-site, there may not be anyone around to help manage this home care.
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