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  • Bringing the role of caregivers out of the shadows is critical to the health and well-being of an aging U.S. society. Tweet This
  • Remarriage and step-kin may increase the size of the caregiving pool but those connections may also be weaker than biological connections. Tweet This

This fall, as I read through a slew of new reports on elder care and aging, I grieved over the death of Stan Lee. Living until age 95, the prolific creator of iconic superheroes, such as Spiderman, the Fantastic Four, and X-Men, Lee puts a face to the numbers and survey responses. His story of aging and end-of-life care offers several points about how we in the U.S. can adapt to becoming an aging society.

1. We Must Accept that Aging is the New Normal

The Hastings Center released a report this fall featuring over a dozen bioethicists who offer researched insights into what makes a good life in late life. They begin with the common presupposition that citizens like Stan Lee, and others in the over-70 crowd, are the new normal in American society. In the next 20 years, the report notes, “one in five people in the United States will be sixty-five or older.” The key markers of an aging society include:

  • fewer children are born
  • adults live longer
  • more residents are over age 65 than under 15
  • older citizens remain in the workplace longer
  • “aging in place” is the desired norm, and
  • brain diseases, such as Alzheimer’s and dementia, have become a major cause of death due to their association with longevity.

Stan Lee exemplified many of these markers. Lee worked long after the traditional retirement age, making public appearances and promoting movies well into his 90’s. In a video of all his movie cameos, he says, “It is such fun creating characters, writing stories, even doing interviews, even though I can’t hear most of what the guy says to me!”

Lee’s silver-haired cameos point to how to live well, with humor and creativity, in late life. He and his wife of 70 years, Joan, were parents to one daughter (J.C.). As their needs for physical support increased, J.C. stepped up to provide care. However, while he had access to many resources, Lee faced a particularly precarious time during his final year of life.

2. An Aging Society With Fewer Intact Families is at Greater Risk for Incidences of Elder Abuse and Caregiver Abuse

In the Hastings Center Report, scholars Grenier and Phillipson use the concept of precarity as a lens to understand the inherent risk and insecurity of late life. They note how risk arises in two ways. First, late life is, by definition, a time of vulnerability and potential risk because elders deal with the cumulative effects of their environment and choices made over their lifetime. For example, the risk for homelessness and physical suffering increases for those who have lived for decades with social and economic inequality and poor access to routine healthcare.

Second, risk increases based on the constellation of caregivers that surround or abandon an elder. Late life is a time when interdependent relationships, paid and unpaid, multiply. Maximizing capabilities in late life requires the time, skill, and attention of loved ones. Precarity increases when networks of interdependence are weak or non-existent. Historically, a spouse or grown child serves as the primary source of support. However, the face of today’s elder caregiver now includes stepchildren, neighbors, and friends.

In a new report released by the National Academies of the Sciences on the changing demographics of care, Johns Hopkins’ researcher, Agee, writes of how the pool of traditional family caregivers has shrunk. “More baby boomers will reach age 65 without a spouse or adult child to rely on for care” due to the numbers of individuals who are single, divorced, and have few or no children.

Remarriage and step-kin may increase the size of the caregiving pool but those connections may also be weaker than biological connections. Studies already show that divorce and remarriage tend to be associated with “less contact, less support, and poorer quality relationships” among parents and adult children than long-term intact marriages. Adult children feel less obliged to care for elderly stepparents. Agee concludes that “this degree of complexity is likely to grow in the near future,” and that additional research on the precarity of non-kin care will be needed.

For example, Lee’s precarity increased after his spouse died in 2017, leaving his only daughter to manage the diverse network of caregivers needed to keep him home to live as full a life as possible. Lee’s wealth enabled the hiring of help, but his affluence also made him a target of unscrupulous “business partners” who sought to take advantage of his macular degeneration and mobility challenges for their own financial gain. Lee responded with lawsuits.

The first lawsuit filed by Lee declared that a lawyer, a caretaker, and a dealer in memorabilia had insinuated themselves into relationships with his daughter in order to gain control over his assets, property, and money. The claim was later withdrawn, but those employees were dismissed. Later, another lawsuit was filed that described a situation in which Lee’s blood was extracted in order for a business partner to mix the blood with ink to create stamps of Lee’s autograph for him to sell.

Lee’s story shows that abuse of an elder can happen to anyone. In 2018, researchers estimate that 10% of those over the age of 60 will experience some form of abuse. Perhaps those incidences are not as ghoulish as Lee’s, but they are terrible all the same. Sadly, in 2017, only 1-in-24 elders reported this abuse to adult protective services.

Third, risk increases for the caregiver, especially for those who are unrelated or paid. In the Hastings Center report, MIT researcher Osterman highlights the plight of health aides, who tend to be the paid sitters or caregivers for an elder. His interviews with health aides for his book, Who Will Care for Us reveal that the paid caregiver role is often marginalized and not well respected in the medical field. Health aides tend to be poorly trained, paid poverty-level wages, and work long hours doing physically arduous work. Their risk for potential abuse is high because they are privy to the most vulnerable spaces and times for elders: bathing and changing clothes.

Stan Lee, again, serves as a cautionary tale. Allegations of sexual misconduct began in January 2018. He was accused of sexual harassment by the nurses hired to care for him, as well as by a masseuse. Lee denied the allegations and died with lawsuits pending.

Lee’s final year of life was precarious for him and for those hired to care for him. Elder abuse is already underreported and under-studied , and even less has been done to study caregiver abuse. As the pool of caregivers continues to broaden beyond immediate family members, more research will be needed to ensure that an “aging society” does not become an “abusive society.”

3. We Need Caregiving “Superheroes”

Ultimately, caregivers are superheroes. By day, they may look like a co-worker in an adjacent cubicle, a parent at a school meeting, or the widow who lives next door. But when a loved one calls, they transform into chauffeurs, nurses, cooks, counselors, advocates, and cheerleaders. The caregiving life may not be as romantic as Spiderman swinging from the eaves of buildings or Iron Man inventing ingenious tools to aid ordinary citizens in need, but the nail clippers and pill organizers in the caregiving arsenal are just as super. Trimming toenails, as Scott Stanley attests, is an incredibly important task that those in good health might underestimate in its power to prevent falls and skin tears, which can lead to broken hips, infections, and difficult to heal wounds. Caregiving tasks are critical in staving off potential suffering.

Late life is a precarious time. As an aging society, the role of caregiver will be required more and more. For now, caregivers form a league of superheroes often called the “invisible work force.” While they continue to rate their role as highly rewarding, bringing their role out of the shadows will be critical to the health and well-being of an aging U.S. society.

Amy Ziettlow is the author (with Naomi Cahn) of Homeward Bound: Modern Families, Elder Care, and Loss. She serves many families and stepfamilies as pastor of Holy Cross Lutheran Church.