Readers on the cost of long-term care

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

In more than 4,200 comments, readers shared their struggles in caring for spouses, older parents, and grandparents. They expressed concerns about aging themselves and needing help staying at home or in institutions such as nursing homes or assisted living facilities.

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

Many readers blamed the largely for-profit nature of American medicine and the long-term care industry for draining the financial resources of the elderly, leaving the federal-state Medicaid programs to care for them when they were in need.

“It’s not right to say the money isn’t there to pay for senior care,” commented Jim Castro, 72, a retired financial controller in Plaquita, New Mexico. “It’s there, in the form of profits that accrue to the owners of these facilities.”

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

Other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some expressed concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.

What other nations provide

The treatment of other countries towards their senior citizens was mentioned repeatedly. Readers contrasted the care seniors have seen 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 in Memphis, Tennessee, said she spent 12 years as a caregiver for her parents in San Diego County and another six for her husband. Although they had advantages that many don’t, Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”

Instead, her sister-in-law’s mother lived to be 103 in a “fully funded, wonderful nursing home” in Denmark for the last five years of her life. “My sister-in-law didn’t have to choose between her life, her career and helping her healthy but very old mother,” Moyer said. “He could have both. I had to choose.”

Birgit Rosenberg, 58, a software developer in 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 of her absolutely excellent care in a happy, clean facility is her paltry Social Security, about $180 a month,” he said. “A friend recently had to put her mother in a nursing home here in the US twice, when she visited 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, in 2019 to Chapala, Jalisco, Mexico, giving up their $650-a-month long-term care policy because care is much more affordable south of the border. Bradt, 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 he can afford with Social Security payments and an annuity. He is receiving “amazing” care, she said.

“As a reminder, most people in Mexico cannot afford the care that we consider affordable, and that saddens me,” he said. “But their care for us is amazing, all the health care, here, actually. At her house, they call her mom or Barbarita, little Barbara.”

Discussion on insurance policies

Many, many readers said they could relate to problems with long-term care insurance policies and their rising costs. Some who hold such policies said they provided comfort for a 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 and ever-changing paperwork,” said Janet Blanding, 62, a technical writer in Fancy Gap, Virginia.

Derek Sippel, 47, a registered nurse in Naples, Fla., cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought the policy. It pays about $195 a month with a lifetime benefit of $350,000. “I may never have to use the benefit[s]but it makes me feel better knowing I have it if I need it,” he said in his comment, adding that he couldn’t have made that kind of money investing on his own.

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

Pleas for more migrant workers

One solution readers suggested 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 bank executive in Woodside, Calif., said over time, his parents had six caregivers who were immigrants. “There’s no magic bullet,” he said, “but an obvious step — hey, people — we need more immigrants! Who do you think is doing most of this work?”

Victoria Raab, 67, a retired copy editor in New York, said many older Americans have to use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margin of labor regulations.”

“These model populations should be able to take on caretaker roles in exchange for citizenship because they are an obvious and invaluable asset in a difficult profession that lacks American workers of their skills and positive cultural attitudes toward older people,” he said. Raab.

Corrections were requested from the Federation

Other readers have called for the federal government to create a comprehensive, national long-term care system, as some other countries have done. In the United States, federal and state programs that fund long-term care are mostly available only to the very poor. For middle-class families, ongoing subsidies for home care, for example, are pretty much non-existent.

“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 shocked when we look at the options and the costs. Medicaid cannot be the only option to pay for long-term care. Congress must act to create a better system for middle-class Americans to financing long-term care.”

John Reeder, 76, a retired federal economist in Arlington, Virginia, called for a single-payer federal system “from birth to senior care where we all pay and win [is] was removed.”

Other readers, however, argued that people should take more responsibility in preparing for the expenses of old age.

Mark Dennen, 69, of West Harwich, Mass., said people should save more instead of waiting for taxpayers to bail them out. “For too 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/clothes, but we will need long-term care. Choices .”

Questioning the value of life-prolonging procedures

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

Thomas Thuene, 60, a counselor in Boston’s Roslindale neighborhood, 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. “There was no dispute with the care unit,” he said. “However, once all her money was gone, the facility gently nudged my friend to consider his mother’s end-of-life care. It seems the financial disaster has bubbled up in the system.”

Joan Chambers, 69, an architectural editor in Southold, N.Y., said that during a hospital stay in a cardiac unit she noticed many of her colleagues “staring in bed with empty eyes,” waiting for stents and pacemakers to be implanted.

“I realized right then and there that we are not patients, we are a commodity,” 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 must stop this cruelty.

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

One doctor, James Sullivan, 64, of Cataumet, a neighborhood in Bourne, Mass., said he planned to refuse hospitalization and other emergency measures if he suffered from dementia. “We’re spending billions of dollars and a lot of heartache treating people with dementia for pneumonia, urinary tract infections, cancers, things that will kill them sooner or later, with no real benefit,” Sullivan said. “I wouldn’t want my son to spend his good years and money helping to keep me alive if I don’t even know what’s going on,” she said.

Consider “assisted dying”

Others went further, stating that they would rather care for their own deaths than suffer with greatly diminished capacity. “My long-term care plan is simple,” said Karen Clodfelter, 54, a library assistant in St. Louis. “When the money runs out, I’ll take myself out of the picture.” Clodfelter said she helped care for her mother until she died at 101. “I have seen old age,” he said, “and I do not care to go there.”

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