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

Thousands of readers responded to the articles in the Dying Broke series on the financial burden of long-term care in the United States. They offered their assessments of the government and market failures that have wiped out the lifelong 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 spouses, elderly parents and grandparents. They expressed their own concerns about aging and the need for help staying at home or in institutions such as nursing homes or residential care centers.

Many suggested changes in U.S. policy, such as expanding government payments for healthcare and allowing more immigrants to stay in the country to meet the 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 the elderly, leaving federal-state Medicaid programs to care for them once they were destitute .

“It is incorrect to say there is no money to pay for elder care,” noted Jim Castrone, 72, a retired financial controller from Placitas, NM. “It is there, in the form of profit that benefits the owners of these facilities.”

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

But other readers pointed to insurance policies that had helped them pay for services despite limitations. And some expressed concerns that Americans were not saving enough and were unprepared to care for themselves as they grew older.

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

Marsha Moyer

What other countries offer

Other countries’ treatment of their elderly citizens was repeatedly mentioned. Readers compared the care they saw older people receiving abroad with treatment in the United States, which spends less on long-term care as a share of gross domestic product than most wealthy countries.

Marsha Moyer, 75, a retired teaching assistant from Memphis, said she worked as a caregiver for her parents in San Diego County for 12 years and for her husband for another six years. While they had benefits, many do not, Ms. Moyer said: “It was a long, lonely job, a sad job, an uphill climb.”

Her sister-in-law’s mother, on the other hand, lived to the age of 103 in the past five years in a “fully funded, beautiful retirement home” in Denmark. “My sister-in-law did not have to choose between her own life, her career and helping her healthy but very old mother,” Ms. Moyer said. ‘She can have both. I had to choose.”

Birgit Rosenberg, 58, a software developer from Southampton, Pennsylvania, said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility amounts to her pittance in Social Security, about $180 a month,” she said. “A friend recently had to put her mother in a nursing home here in the US. Twice during a visit she found her mother on the floor in her room, where she had been for who knows how long.”

Brad and Carol Burns moved from Fort Worth, Texas, to Chapala, Jalisco, Mexico, in 2019, ditching their $650-per-month long-term care policy because care is so much more affordable south of the border. Mr. Burns, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she could afford with her Social Security benefits and an annuity. She is receiving “great” care, he said.

“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is great, all the healthcare here actually. At her home, my mother, they address her as mother or Barbarita, little Barbara.”

Insurance policies discussed

Many, many readers said they could relate to issues with long-term care insurance and its rising costs. Some who have such policies say they provide comfort for a possible worst-case scenario, while others castigate insurers for making it difficult to access benefits.

“They really make you work for the money, and you better have someone available to call them and work on the endless and ever-changing paperwork,” says 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 his mother’s dementia care 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 have to use the benefits, but it makes me feel better to know I have them when I need them,” he wrote. He said he couldn’t make that kind of money by investing himself.

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

Plea for more migrant workers

One solution readers suggested was to increase the number of immigrants entering the country to address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank manager from Woodside, California, said that over time his parents had six caregivers who were immigrants. “There is no silver bullet,” he said, “but one obvious step – hello people – we need more immigrants! Who do you think does the most work?”

Victoria Raab, 67, a retired editor from New York, said many older Americans must use paid help because their adult children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “who work loosely within the margins of labor law.”

“These model populations should be able to transparently fulfill the role of caregiver 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 adults, ” said Ms Raab.

“For too many people, the answer is, ‘How can we hide assets and get the government to pay?’”

Mark Dennen

Federal solutions sought

Others called on the federal government to create a comprehensive national long-term care system, as some other states have done. In the United States, federal and state programs that finance long-term care are available primarily only to the poorest of the poor. For example, for middle-class families, sustainable subsidies for home care are virtually non-existent.

“I am a geriatric nurse in New York and have seen this story time and time again,” said Sarah Romanelli, 31. “My patients are shocked when we look at the options and their costs. Medicaid cannot be the only option to pay for long-term care. “Congress must take action to build a better system for middle-class Americans to finance long-term care,” she said.

John Reeder, 76, a retired federal economist from Arlington, Virginia, called for a single-payer federal system “from birth to elder care, where we all pay and no longer make a profit.”

However, other readers argued that people needed to take more responsibility in preparing for the costs of old age.

Mark Dennen, 69, of West Harwich, Massachusetts, said people should save more instead of expecting taxpayers to bail them out. “For too many people, the answer is, ‘How can we hide assets and get the government to 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/clothes, but we do need long-term care . Choices.”

Questioning life-extending procedures

A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.

Dr. Thomas Thuene, 60, a counselor in Roslindale, Massachusetts, described how a friend’s mother, who had heart failure, was repeatedly sent by ambulance from the aged care facility where she lived to the hospital and back. “There was no dispute with the health care facility,” he said. “But at the moment when all her money was gone, the facility gently nudged my friend to think about end-of-life care for his mother. It appears that financial ruin is baked into the system.”

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

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

Derek Sippel

“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die of heart failure. It takes 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 must stop this cruelty.

“We must 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 was suffering from dementia. “We spend billions of dollars and a lot of heartache treating demented people for pneumonia, urinary tract infections, cancer, things that will sooner or later kill them, without any meaningful benefit,” said Dr. Sullivan. “I wouldn’t want my son to spend his good years and money helping to keep me alive when I don’t even know what’s going on,” he said.

Thoughts about assisted dying

Others went further, stating that they would rather arrange their own death than suffer from a greatly reduced capacity. “My long-term care plan is simple,” said Karen D. Clodfelter, 54, a library assistant from St. Louis. “When the money runs out, I will take myself out of the picture.” Mrs. Clodfelter said she helped care for her mother until her death at age 101. “I have lived to extreme old age,” she said, “and I have no desire to go there.”

Some suggested that assisted death 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 provide assisted living to our fellow Americans, can we at least offer assisted dying? At least some of us would see it as a desirable solution.”