‘Financial ruin is built into the system’: Readers debate the costs of long-term care

Thousands of readers reacted to articles in the Dying Broke series about the financial burden of long-term care in the United States. They offered their assessments of the government and market failures that have depleted the life savings of so many American families. And some offered possible solutions.

In more than 4,200 comments, readers of all ages shared their struggles caring for their spouses, aging parents, and grandparents. They expressed their own anxiety about growing older and needing help staying at home or in institutions such as nursing homes or assisted living centers.

Many suggested changes in U.S. policy, such as expanding government payments for health care and allowing more immigrants to remain in the country to help meet demand for workers. Some even said they would rather end their lives than become a financial burden on their children.

Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for draining the financial resources of seniors, leaving federal and state Medicaid programs to take care of them once they were out. in destitution.

“It’s incorrect to say the money isn’t there to pay for elder care,” said Jim Castrone, 72, a retired financial controller from Placitas, New Mexico. “It is there, in the form of profits that accrue to the owners of these facilities.”

“It is a system of transferring wealth from the middle class and the poor to the owners of for-profit health care, including hospitals and long-term care facilities described in this article, supported by the government,” he added.

But other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some expressed concern that Americans were not saving enough and were not prepared to care for themselves as they aged.

“It was a long and lonely job, a sad job, an uphill road.”

Marisa Moyer

The treatment other countries give to their older citizens was repeatedly mentioned. Readers compared the care they saw seniors receiving in foreign countries with treatment in the United States, which spends less on long-term care as a share of its gross domestic product than most wealthy nations.

Marsha Moyer, 75, a retired teaching assistant from Memphis, said she spent 12 years caring for her parents in San Diego County and another six for her husband. While they had advantages that many do not have, Ella Moyer said, “it was a long, lonely job, a sad job, an uphill road.”

In contrast, her sister-in-law’s mother lived until she was 103 in a “beautiful, fully funded nursing home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career and helping her healthy but very elderly mother,” Ms. Moyer said. “She could have both. I had to choose.”

Birgit Rosenberg, 58, a software developer from Southampton, Pennsylvania, said her mother suffered from terminal dementia and had been in a nursing home in Germany for more than two years. “The cost of her absolutely excellent care in a happy, clean facility is her Social Security pittance, about $180 a month,” she said. “A friend recently had to put her mother in a nursing home here in the US. Twice, when she was visiting, she found her mother on the floor of her room, where “I had been there for who knows how long.”

Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, and got rid of their $650-a-month long-term care policy because care is much more affordable south of the border. Burns, 63, a retired pharmaceutical researcher, said his mother lived a few miles away in a memory care facility that costs $2,050 a month, something he can afford with his Social Security payments and an annuity. She is receiving “incredible” care, he said.

“As a reminder, most people in Mexico cannot afford the care we consider affordable and that makes me sad,” he said. “But the care they give us is incredible, all the medical care here, in fact. In her, my mother’s, house, they call her Mama or Barbarita, Barbara.”

Many, many readers said they could relate to the problems with long-term care insurance policies and their rising costs. Some who have such policies said they provided solace for the possible worst-case scenario, while others criticized insurers for making it difficult to access benefits.

“They really make you work for the money, and you better have someone available who can call them and work through the endless, ever-changing paperwork,” said Janet Blanding, 62, a technical writer from Fancy Gap, Virginia.

Derek Sippel, 47, a registered nurse from Naples, Florida, cited the $11,000 monthly cost of nursing home care for his mother’s dementia as the reason he bought a policy. He said he pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefits, but it makes me feel better knowing I have them if I need them,” he wrote. He said he couldn’t make that amount of money investing on his own.

“It’s the risk you run with any type of insurance,” he said. “I don’t want to be a burden to anyone.”

One solution readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired banking executive from Woodside, California, said that over time, his parents had six caregivers who were immigrants. “There is no magic formula,” he said, “but an obvious step: Hello people: we need more immigrants! Who do you think does most of this work?

Victoria Raab, 67, a retired editor from New York, said many older Americans must turn to paid help because their older children live far away. Her parents and some of her classmates depend on immigrants from the Philippines and Eritrea, she said, “who work freely within the margins of labor regulations.”

“These exemplary populations should be able to transparently perform caregiver roles in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers with their skills and positive cultural attitudes toward older people,” said Ms. Raab

“For many, the answer is: ‘How can we hide assets and make the government pay?’”

Mark Dennen

Others called for the federal government to create a comprehensive national long-term care system, as other countries have done. In the United States, federal and state programs that fund long-term care are primarily available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are virtually nonexistent.

“I’m a geriatric nurse in New York and I’ve seen this story over and over again,” said Sarah Romanelli, 31. “My patients are surprised when we review the options and their costs. Medicaid cannot be the only option to pay for long-term care. “Congress must act to establish a better system for middle-class Americans to fund long-term care,” she said.

John Reeder, 76, a retired federal economist from Arlington, Virginia, called for a federal single-payer system “from birth to senior care, where we all pay and profit-making is eliminated.”

Other readers, however, argued that people needed to take more responsibility by preparing to face the expenses of old age.

Mark Dennen, 69, of West Harwich, Massachusetts, said people should save more instead of waiting for taxpayers to bail them out. “For many, the answer is, ‘How can we hide assets and make the government pay?’ That’s just another way of saying, ‘How can I get someone else to pay my bills?’” he said, adding, “We don’t need the latest phone, car or clothing, but we will need long-term care. Options.”

Several readers condemned the country’s medical culture for promoting expensive surgeries and other procedures that do little to improve the quality of the few years people have left.

Dr. Thomas Thuene, 60, a consultant in Roslindale, Massachusetts, described how a friend’s mother who had heart failure was repeatedly sent from the nursing home where she lived to the hospital and back by ambulance. “You couldn’t argue with the spotlight,” she said. “However, the moment she ran out of all the money, the center gently advised my friend to think about caring for her mother at the end of life. It seems that financial ruin is built into the system.”

Joan Chambers, 69, an architectural draftsman from Southold, New York, said that during a hospitalization in a cardiac unit she observed many patients “bedridden with empty eyes,” waiting for stent and pacemaker implantations.

“I don’t want to be a burden to anyone.”

Derek Sippel

“I realized at that moment that we are not patients, we are commodities,” he said. “Most of us will die of heart failure. It will take courage for a family member to refuse a “simple” procedure that will keep a loved one’s heart beating for a few more years, but we have to stop this cruelty.

“We have to remember that while we are grateful to our healthcare professionals, they are not our friends, they are our employees and we can say no.”

One doctor, Dr. James D. Sullivan, 64, of Cataumet, Massachusetts, said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of headaches, treating people with dementia from pneumonia, urinary tract infections, cancers, things that will kill them sooner or later, without any significant benefit,” Dr. Sullivan said. “I wouldn’t want my son to spend his good years and his money helping me stay alive if I don’t even know what’s going on,” he said.

Others went further and stated that they would rather arrange their own deaths than suffer greatly diminished capacity. “My long-term care plan is simple,” said Karen D. Clodfelter, 65, a library assistant from St. Louis. “When the money runs out, I will retire from the scene.” Clodfelter said she helped care for her mother until her death at age 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”

Some suggested that assisted dying should be a more widely available option in a country that cares so poorly for its elderly. Meridee Wendell, 76, of Sunnyvale, California, said, “If we can’t offer assisted living services to our fellow Americans, could we at least offer assisted dying? “At least some of us would see it as a desirable solution.”