Old age is generally not a good time for severe emotional shocks. But millions of elderly Americans, along with an equal if not greater number of their (mostly) middle-aged children, are quietly dealing with a particularly brutal one right now, that is fairly invisible and unfolds in painfully slow motion. For the elderly parent, the shock is realizing that as their bodies and minds gradually deteriorate with age, they have wholly insufficient means to afford adequate long-term care for themselves. For their children (if any)—at the exact same time—the grim reality facing many of their parents hits home just as hard, just in a very different fashion.
For those who have yet to face this unpleasantness—and even for those lucky enough to escape it—rest assured it is an eye-opening experience. It comes heavily laden with feelings of guilt, embarrassment, and in some cases outright panic and anger. Depending on the relationship between the parents and their children (assuming there is a relationship), it can stretch and even sever the tight, emotional familial bonds that both probably assumed would last all their lives. Often it arrives with the stunning revelation that for most people there is no one else—no government agency or program, no church, no social support network—to bail you out. In this country, except for those truly impoverished, when this crisis hits, you and your loved ones are essentially on your own.
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Many developed nations have programs in place to alleviate or eliminate the costly burden of long-term care foisted on their elderly populations. The U.S., however, has no such program beyond Medicaid, and Medicaid will generally not cover the cost of facility care unless or until the elderly person’s financial resources have been otherwise completely drained. Likewise, with very limited exceptions, Medicare does not cover the cost of long-term care, either at home, in an assisted living facility, or a nursing home. The cost of such care can easily exceed $100,000 per year in many areas of the country, and long-term care insurance is no longer affordable or even available for most people. Social Security will only cover a pittance of such costs, and for the vast majority of Americans adequate pensions are a thing of the past. That means unless your elderly loved ones are reduced to near poverty, all costs must be borne by them or their relatives (usually that means their children). If they have not saved enough money to afford such facility or in-home care (and most have not) their options, aside from relying on an increasingly fragile and inadequate Medicaid system, are extremely limited.
For a number of reasons the political will necessary to solve this problem has apparently all but vanished from the national conversation. Accordingly, and as reported by Reed Abelson and Jordan Rau, writing for The New York Times, most people in what passes for this country’s “middle class” will inevitably, sooner or later, come face to face with what can amount to a waking nightmare. For some of them, it will literally mean financial ruin. As the nation’s elderly population grows, and most ominously within the coming decades, the consequences of ignoring this problem are going to be devastating.
No parent wants to burden their children with the staggering costs of long-term care. But as people in this country live longer thanks to advances in modern medicine, almost all of them inevitably reach the point where they can no longer live unassisted in their homes. For many elderly folks it starts with simple falls, then more severe falls, and finally catastrophic falls. For others it’s a less dramatic process of cognitive decline, often to the point where they put themselves in physical danger. Or they may simply have a medical condition that otherwise debilitates them and worsens with age. But inevitably there comes a point where a very difficult decision must be made for the elderly loved one(s) to leave their home, and the pleasant myth of spending one’s last years in the embrace of one’s children and grandchildren has to yield to reality.
Abelson and Rau’s report examines the lives of several elderly parents and their children who, unable to afford the cost of long-term care, have attempted to care for their parents at home. As they explain, “Millions of families are facing such daunting life choices—and potential financial ruin—as the escalating costs of in-home care, assisted-living facilities and nursing homes devour the savings and incomes of older Americans and their relatives.”
The lack of affordable long-term care is not a new problem in this country, but the current demographics paint a particularly bleak scenario for the near future. In the U.S. those affected are now mostly the “Baby Boomer” generation, but, as the authors note, By the year 2050 “the population of Americans 65 and older is projected to increase by more than 50 percent, to 86 million, according to census estimates,” while the percentage of those 85 and older will triple. So, this promises to be a snowballing, inexorable crisis affecting Generation X and each successive demographic in due time. And the costs are only getting higher.
As the authors explain:
The United States has no coherent system of long-term care, mostly a patchwork. The private market where a minuscule portion of families buy long-term care insurance has shriveled, reduced over years of giant rate hikes by insurers that had underestimated how much care people would actually use. Labor shortages have left families searching for workers willing to care for their elders in the home. And the cost of a spot in an assisted-living facility has soared to an unaffordable level for most middle-class Americans. They have to run out of money to qualify for nursing home care paid for by the government.
But that “nursing home care paid for by the government” is already in serious jeopardy, mainly because there aren’t enough people to staff those nursing homes. As a result, in states like Pennsylvania (in 2021 the fifth largest state in population for seniors over 65) the waitlist to even be admitted to a nursing home can number as many as 2,000 people “on any given day,” according to Jordan Anderson, reporting for the Pittsburgh Post-Gazette. Often these are for homes far outside the area where the elderly person currently lives. As Anderson observes, the COVID-19 pandemic accelerated the exodus of staff from such facilities, and they have not returned.
For their Times article Abelson and Rau partnered with the Kaiser Family Foundation Health News, interviewing families and facilities that provide long-term care to the elderly. They also reviewed data from the Health and Retirement Study, a panel study known as HRS funded by the federal government that surveys a representative sample of the U.S. population regarding their long-term health care needs. The authors cite HRS data indicating about 8 million Americans over age 65 report “that they had dementia or difficulty with basic daily tasks like bathing and feeding themselves—and nearly three million of them had no assistance at all.” Of course, this is only a fraction of the number of elderly people who will have to face similar difficulties by 2050.
Yet, as the authors emphasize, this country remains woefully unprepared (or unwilling) to address even the current crisis.
The United States devotes a smaller share of its gross domestic product to long-term care than do most other wealthy countries, including Britain, France, Canada, Germany, Sweden and Japan, according to the Organization for Economic Cooperation and Development. The United States lags its international peers in another way: It dedicates far less of its overall health spending toward long-term care.
In fact, as the Times’ authors note, the framework for providing long-term medical care in this country has remained unchanged since the Johnson administration, while the percentage of Americans aged 85 and older has increased sixfold.
Many people live under the illusion that this country sufficiently provides for its elderly through Social Security and Medicare. The reality is that as conditions currently stand, it does not. Medicare—which many people mistakenly believe will cover the cost of long-term care—will only cover very short-term rehabilitation or post-surgery stays in a nursing home or rehab facility. And Medicaid—as discovered by Gay Glenn, a woman interviewed by the Times reporters who placed her mother in a Kansas nursing home—is currently designed to ensure that its participants be divested of all their resources before any care is paid for.
That includes any sums of money or articles of property they might wish to leave for their children. As Glenn bluntly explains to the Times, Medicaid “basically want[s] people to destitute themselves and then you take everything else that they have.” In Glenn’s case, as Abelson and Lau report, Medicaid required her to pay rent to use a rental property owned by her mother, and that money was used to pay for her mother’s care, offsetting some of what Medicaid paid out for that care. She was also required to reimburse Medicaid out of the proceeds from the sale of her mother’s home, well after her mother had died.
The most recent attempt to provide more national funding for elder care was through President Joe Biden’s Build Back Better legislation, which, as the Times authors note, was “to improve wages and working conditions for paid caregivers.” Ironically however, that provision in the legislation was scuttled partly due to the insistence of two Senate Democrats, including (now former) Democratic Arizona Sen. Kyrsten Sinema and soon-to retire West Virginia Sen. Joe Manchin, that its cost be lowered.
Of course, nearly all Republicans oppose any further funding to care for the elderly. Indiana Sen. Mike Braun’s position is typical. He says that the solution is simply for Americans to save more money. As the Times article explains:
[L]eading Republicans in Congress say the federal government cannot be expected to step in more than it already does. Americans need to save for when they will inevitably need care, said Senator Mike Braun of Indiana, the ranking Republican on the aging committee.
“So often people just think it’s just going to work out,” he said. “Too many people get to the point where they’re 65 and then say, ‘I don’t have that much there.’”
Braun’s net worth in 2018, according to Open Secrets, was $136 million, which apparently makes him qualified to comment on what “people just think.”
The authors note that the for-profit assisted living industry continues to reap tremendous profits, even as their facilities are, for the most part, ineligible for any federal funding. They note that half of the assisted living facilities in this country cost a minimum of $54,000 per year, with the cost doubling for dementia-afflicted residents of locked “memory care” units. Those facilities cater almost entirely to fairly well-off Americans (and their families) who are fortunate enough to have retained substantial savings even as their physical and mental conditions begin to seriously fail. Likewise, as the authors note, six to seven hours of specialized home care per day can amount to approximately $60,000 per year, all of which must be paid out of pocket. But even that amount of time spent caring for someone with a severe condition can be insufficient. Because people actually tend to get up in the middle of the night, and that’s often when they fall and injure themselves.
For that reason, Medicaid becomes the default option for four out of five Americans whose status (and presumably their financial savings) can be described as “middle class,” according to Abelson and Rau’s report; however, they also note that “Almost half of upper-middle-class couples with lifetime earnings of more than $4.75 million will also end up on Medicaid.”
And as idyllic an idea of letting elderly parents live at their children’s home may be, the reality is the stress of caring for them is extreme, exponentially so if they suffer from advanced dementia. Realistically the vast majority of people are not equipped, either physically or psychologically, to cope with the constellation of medical conditions that can suddenly arise in providing this kind of home care. It necessitates that the caregiver give up most or all of their personal life in the process, and for people still employed or even raising their own children, for example, that is not a tenable situation. The severe stress of such work—for relatively low wages—is part of the reason that nursing home staffing is in crisis in the first place, as the Times authors point out. Still, as one personal example cited by the authors notes, placing a loved one in a memory care facility for eight years can cost as much as $1 million, all out of pocket.
If you’ve read this far you may have guessed why this subject interests me personally. It’s because like millions of Americans I am still in the process of living through it. My father passed away fairly recently; after many recent orthopedic injuries it was cancer that ultimately took his life. He knew about his condition, but he told no one, including me or my mother. My mom had to be hospitalized herself after a severe fall almost immediately afterward. She is now in assisted living. Both of them had struggled to stay in their home until the very end, and they wouldn’t hear of leaving for an assisted living facility even as it became evident that neither could carry on independently. It wasn’t just pride and autonomy for them: It was the money, and their hope to leave something to their children.
The multimillionaire Republican senator from Indiana would probably have pointed to my father as an example of someone having “saved enough” through his lifetime to finance my mother’s care, but the reality is that my dad was a rarity, among the last of a fading generation of blue-collar, private sector workers that actually received a pension. And had he not passed away when he did, even the limited resources he had stashed away would not have been sufficient to cover both his and my mother’s care. They would have eventually been reduced to selling off everything they owned to qualify for Medicaid, just like millions of other Americans.
In fact, that reality was quite vividly brought home to me very recently as I disposed of his personal papers. On a scribbled piece of yellow note paper, he’d tallied up all his resources and expected death benefits. In the top right hand corner he’d jotted down notes of a phone conversation he’d had with his former employer’s benefits program. Next to their phone number he wrote “SUICIDE NOT A PROBLEM.” That was my dad, ever the practical one. Evidently the benefits administrator answered that specific question to his satisfaction.
Attitudes like Sen. Braun’s and others—that people should just “save more money” to avoid this type of fate—are, of course, clueless and insulting. But they also stem in part from the fact that people in general don’t want to discuss these issues beyond their immediate families. It’s not a pleasant thing to have to admit you had little sense of the likely costs that you would face near the end of your life, and it’s doubly unpleasant when you realize that there is no real recourse other than to rely on your children (again, assuming you have them). So, this problem remains largely invisible, quietly endured by millions until it’s highlighted for a while in The New York Times or other media. And in fact, the Times article at the outset describes several individuals who are facing personal bankruptcy and devastation to their own futures due to the emotional and financial costs of caring for aged parents or relatives. As the article emphasizes, women tend to bear the brunt of these costs.
In the meantime, due primarily to an intransigent Republican-dominated House of Representatives ideologically averse to doing anything to address this issue, proposed legislation like former New York’ Democratic Rep. Thomas Suozzi’s WISH Act, cited by the Times article as one of the few current attempts to provide funding for such long-term care (utilizing a small payroll tax establishing a long-term care trust fund for potential retirees), continue to languish in Congress. Suozzi recently announced he will run to reclaim the seat currently occupied by Republican fraudster George Santos, so if he wins there will be at least one advocate for a concrete (if modest) piece of legislation addressing this crisis.
But ultimately the exorbitant costs of obtaining long-term care for the elderly in this country will be an issue that’s impossible to ignore. Because as this country ages, millions upon millions of Americans (of all political persuasions) are going to be faced with the same crippling and unexpected financial hardships, all within a few very short years.
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