America’s Caregiving Crisis: A Growing Disaster

Hidden along the sidelines of our daily cultural dialogue in the United States is a looming crisis that we don’t really talk much about: caregiving for people who are not children (i.e., the elderly and people with disabilities or illnesses). Adult caregiving has always been something of an open secret—the lurking world of nursing facilities, assisted living, home health care, group homes, and more—but a world that largely gets ignored or minimized in pop culture, entertainment, policy discussions, etc. This world reared its ugly head during the pandemic, as vulnerable people in crowded care facilities tended to by people of less affluent socioeconomic status who had no choice but to keep working became gasoline fuel for COVID-19. The largest proportion of pandemic deaths remains from this segment of society, one that may still be falling prey to the now minimized and ignored virus.

Aside from how we are still handling COVID-19, adult caregiving is also destined to grow in prominence as an issue due to what some have termed the “silver tsunami,” the inevitable aging of our population—in particular, the large volume of the baby boomer generation who are now mostly in their 60s and 70s. As youthful and active as many boomers still try to act (as seen on the recent “Golden Bachelor”), aging does not discriminate when it comes to illnesses and health, even with our advances in medical and self-care. And, aside from aging-related illnesses, there remain large cadres of people with disabilities, cancer, autism, mental illness, and others who cannot live fully independently. Some mid-life people are even caught up in becoming a “sandwich generation,” where they must simultaneously care for children and ailing parents.

A Fragmented System

Caretaking and caregiving are deceptively soft and friendly terms for what in reality is a very stressful, expensive, and time-consuming process that remains fragmented and confusing as a system in our country. This fragmentation reflects our general attitude toward anyone with vulnerability or special needs (with the prominent exception of the Americans with Disabilities Act, but even that seemed geared toward allowing more people to work than anything else). We have improving social services and social nets for childrearing and children with special needs (again to reflect the needs of the parental workforce)…but what of those who simply cannot work period? What about those who are, through no fault of their own, wholly dependent on the care of others?

Right now, there are some care provisions for the elderly and disabled who usually fall under Medicare, and those who have Medicaid. But the services they cover can be limited or confusing and subject to complex rules and gaps that are difficult to navigate, such as the differences between skilled nursing care and standard caregiving for activities of daily living (sometimes called custodial care). Medicare notably does not cover custodial caregiving services and only covers skilled nursing care for a limited time (e.g., up to 3 months).

Many elderly or disabled who require longer-term care may have to engage in mandatory spend-downs that drain their life savings just to qualify for those services via Medicaid. The agencies that provide such care are also numerous and sometimes confusing and unclear with regard to their quality of care, transparency, training, finances, and more; many people often choose to simply pay out-of-pocket and go private with hiring help, which can lead to its own lack of accountability and scheduling issues and more.

Private long-term-care insurance programs have been an option as well, but in recent years have become insolvent or nearly useless (with ever-increasing premiums and smaller/more obstructed payouts, with even the federal long-term care program now on hold); these programs are failing because the ever-increasing expenses of caregiving are unsustainable without a larger pool of people paying into the system (like with government-mandated programs found in other countries like Japan, Holland, and many more).

Minimal Open Dialogue About the Crisis

With the plethora of information thanks to social media and the internet, it still feels like open dialogue and discussion of the caregiving crisis is minimal in relation to the scope of that crisis. Other than the impossible logistics and financing of such care, there is also a lack of awareness of the mental toll of caregiving on caregivers, both family members who must do it directly and those who perform it as a work role (who are often underpaid).

There are at least some brief recent pieces in mainstream media on this major stressor; the New York Times published a recent article by Catherine Pearson (Nov. 9, 2023) on “The Quiet Rage of Caregivers” that discusses the often abrupt and tragic change in lifestyle and drain on all resources that taking care of a sick family member or friend can entail. The article notes that “around 53 million Americans are caregivers for a family member or friend with a health issue or disability, and nearly a third spend 20 or more hours a week in that role.” Many, like stay-at-home mothers, provide unpaid labor for what becomes long-term home care, but unlike the underlying optimism and joy of childrearing, caregivers for the ill cope with the additional strain and deep grief and sadness of watching their loved one decline or eventually pass away. There is also, like with childrearing, the impossible dilemma of wanting to provide constant care out of love, but then coping with the exhaustion and emotional fallout of the situation. This dilemma and the guilt that results then leads to no acceptable outlets to express any related anger or frustration.

Family or spousal caregivers of people who are severely ill or disabled often cannot have the freedom to engage in their own social lives anymore, as their loved one’s condition can be unpredictable and prone to sudden emergencies, or they cannot risk exposure to outside viruses that can be deadly if the loved ones are immunocompromised. They may also have to leave or lose their jobs because the burdens of caregiving cannot align with workplace commitments or locations, which causes a vicious cycle of declining finances and resources or health insurance that could help. According to a Yahoo Finance article by Serah Louis, one in three Americans have had to leave their jobs due to adult caregiving issues.

Initiatives to Aid Caregivers

There are some growing initiatives to acknowledge and aid caregivers and realize the crucial role they fulfill in an otherwise gap-ridden social net. The VA has a formal caregiver support program for family members who care for veterans with disabilities, which provides support groups, training, and even tax-free stipends for some who qualify based on the degree of labor involved for their loved one. Some state Medicaid programs or long-term care insurance policies also provide caregiver stipends. There are a few websites like care.com that provide vetted access to paid private caregivers.

But, overall, there needs to be greater awareness and acknowledgment of what is becoming a major and common life-changing phase for many families in our country, and more government-level and employer-level support for policies and funding that support adult caregiving at all levels and acknowledge all its complexities and financial and mental burdens in a more centralized, systematic, user-friendly fashion. As a society, we cannot simply ignore and brush over the reality of illness, disability, and death as part of our lives. We need to face it head-on in order to aid so many who need that help desperately right now.