Carolyn Dickens, 76, was sitting at her dining room table, gasping for air while her doctor watched her anxiously.
What’s causing your breathing problems? Peter Gliatto, the head of the Visiting Doctors Program at Mount Sinai, was questioned.
She said, “I don’t know,” in a voice that was difficult to hear. I get pretty tired going from here to the entrance or the bathroom. I’m not sure when my time on earth will end.
Dickens, who survived lung cancer, struggles to make ends meet while residing in central Harlem. She has high blood pressure, severe lung illness, and frequent episodes of fainting. She has fallen multiple times in the last year, resulting in a dangerously low weight of 85 pounds.
Additionally, she lives in a very dangerous situation—alone and without assistance.
About 2 million persons 65 and older are entirely or primarily confined to their homes nationwide, and another 5.5 million are able to leave only with considerable need or difficulty. Given that the data dates back more than a dozen years, this is most likely an undercount.
It is a group that is significantly larger than the 1.2 million people who reside in nursing homes, yet politicians, lawmakers, and aging researchers pay much less attention to it.
Here are some startling findings from a 2020 study that was published in JAMA Internal Medicine on seniors who are totally homebound: Almost 40% suffer from five or more chronic illnesses, including lung or heart disease. It is estimated that about 30% have probable dementia. Seventy-seven percent struggle with at least one everyday action, including getting dressed or taking a shower.
Nearly 40% of people live alone.
That, in my opinion, exacerbates these people’s already significant vulnerability, which was made abundantly clear during the COVID-19 pandemic when the number of elderly people who were confined to their homes due to illness and disability doubled.
Homebound patients, notably those with severe illnesses, depend heavily on others, according to Katherine Ornstein, head of the Johns Hopkins School of Nursing’s Center for Equity in Aging. They risk going without food, not having access to medical treatment, and not living in a safe environment if they are alone.
Compared to other elders, older homebound persons are less likely to obtain routine primary care, according to research. They also have a higher chance of experiencing medical emergencies that may have been avoided if someone had been keeping an eye on them.
I went with Gliatto on a few house visits in New York City to have a deeper understanding of these elders’ perspectives. One of the earliest visiting doctor programs in the country was started at Mount Sinai in 1995.This type of home-based primary care is only available to 12% of older persons in the United States who rarely or never leave their homes.
About 1,000 patients are served annually in Manhattan by Gliatto and his crew, which consists of seven part-time physicians, three nurse practitioners, two nurses, two social workers, and three administrative staff members.
These patients need a lot of help because their needs are complex. As Mount Sinai has decreased its funding for the program, Gliatto has had to lay off employees in recent years. Because costs are high and service reimbursement is minimal, it doesn’t make a profit.
Gliatto first visited 79-year-old Sandra Pettway, who has lived alone in a two-bedroom apartment in Harlem for 30 years and has never married or had children.
Pettway suffers from melancholy, Type 2 diabetes, and excruciating back and spine pain. She rarely leaves her apartment since she has trouble getting about. She told me it’s been incredibly lonely since the outbreak.
Pettway highlighted her next-door neighbor when I inquired who comes to see how she’s doing. She doesn’t see anyone else on a regular basis.
Pettway confided in the physician that she was growing more and more anxious about a planned spine operation. He promised her that Medicare would pay for physical therapy, assistants, and in-home nursing care.
“At least for six weeks, someone will be with you,” he continued. Unspoken: She would then be left alone. (Gliatto later stated that the procedure in April went well.)
When Pettway described her memory problems, the doctor listened intently.
She remarked, “I can recall when I was a year old, but I can’t remember ten minutes ago.” Although he believed she was functioning well, he informed her that if there was any additional indication of cognitive decline, he would set up tests. He stated that he is not now overly concerned about her capacity to handle things independently.
Gliatto went to see Dickens, who had spent 31 years living in her one-bedroom flat in Harlem, a few blocks away. Dickens told me that since her sister, who used to assist her, suffered a stroke, she hasn’t seen other people on a regular basis. The majority of her close neighbors have passed away. She only visits her niece in the Bronx once a month, who is her only other close relative.
Dickens spent decades working with special education pupils in the public schools in New York City. She currently makes too much money from Social Security and a meager pension to be eligible for Medicaid. Medicaid, which is a program for those with low incomes, will cover the cost of domestic help. Medicare, which provides coverage for individuals over 65, does not. She cannot afford in-home support since, like Pettway, she only has a little fixed income.
Dickens reheats a week’s supply of frozen breakfasts and dinners that are delivered every Friday by God’s Love We Deliver, a company that makes medically customized meals for ailing patients. She hardly ever leaves the house. She tries to clean a little when she has energy.
Dickens is unsure of what she would do without Gliatto’s constant attention. She added, “You know, getting up and going out, putting on your clothes, is a task.” In addition, I’m afraid of falling.
The following day, Gliatto paid a visit to the messy apartment of Marianne Gluck Morrison, 73, a former survey researcher for the personnel department of New York City. Morrison was widowed in 2010 and has lived alone ever since. He has no siblings or children.
Gliatto asked Morrison to follow his fingers with her eyes and touch her fingers to her nose as part of a basic neurological examination after she reported feeling lightheaded for a few weeks.
He described vertigo symptoms and said, “I think your problem is with your ear, not your brain.”
Morrison had been receiving home health care through Medicare for a few weeks due to severe lesions on her foot caused by Type 2 diabetes. However, the assistance provided by aides, nurses, and physical therapists was about to expire in two weeks.
Morrison told me, “I’m not sure what I’ll do then, probably just spend a lot of time in bed.” She also suffers from depression, osteoarthritis, congestive heart failure, irregular heartbeat, and chronic kidney disease.
Since November 2023, when she returned home following a hospital stay and several months at a rehabilitation facility, Morrison has not left her apartment. It’s just too difficult to climb the three steps that lead up to her apartment building.
Being alone so much of the time is difficult. She told me it’s lonely. Having others see me in the house would be wonderful. But I can’t do it right now due to the clutter.
Morrison mentioned Gliatto and a mental health therapist from Henry Street Settlement, a social services agency, when I asked her who she feels she can rely on. Most nights, she talks on the phone with one close buddy.
With a heavy sigh, she stated, “The problem is I’ve lost eight to nine friends in the last fifteen years.” They have either moved away or died.
Bruce Leff is a prominent supporter of home-based healthcare and the director of the Johns Hopkins School of Medicine’s Center for Transformative Geriatric Research. When I asked him about homebound older individuals who live alone, he remarked, “It’s kind of amazing how people find ways to get by.” Although there is a great deal of vulnerability and fragility, there is also a great deal of resilience.
Leff believes that additional types of care, ranging from hospital-level services to palliative care and rehabilitation services, will be provided in homes due to the aging population’s significant growth in the coming years.
“Building enough hospitals and health facilities to meet the demand from an aging population will just not be possible,” he warned.
However, that will be difficult for independent older persons who are homebound. There might not be anyone available to assist in managing this home-based care if there are no family caregivers present.
One of KFF’s main operational initiatives is KFF Health News, a nationwide newsroom that specializes in in-depth reporting on health-related topics.the impartial resource for journalism, polling, and health policy research. The Washington Post also carried this article. Republishing it is free of charge.
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