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What You Don't Know About Caregiver Burden Can Hurt You

1 in 5 Americans is struggling to care for a loved one at home. Are you next?

Key points

  • Family caregivers are struggling financially, psychologically, and medically. The stress of COVID has made it much worse.
  • There is a surprising and shocking lack of awareness of the caregiver crisis in healthcare, the workplace, and at home.
  • A bill in Congress known as the Build Back Better plan would support caregivers with $150 billion if passed.
Source: Josh Appel, Common Use
Family member providing care
Source: Josh Appel, Common Use

This is a critical moment for family caregivers in our country. As I write this, legislators in Washington are determining whether to provide funding support for the one in five Americans struggling to care for sick or disabled loved ones at home. It’s not looking good. Despite wide bipartisan support in communities for providing relief to caregivers, the funding amount proposed in the bill has already been whittled down to $150 billion from $440 billion.

I recently produced a short documentary called Caregiver: A Love Story, which chronicles the travails of Rick Tash as he struggled to keep up with the increasing needs of his dying wife at home over the last nine weeks of her life. We see him deteriorate in parallel with her, growing more harried and exhausted as she became increasingly immobilized and unresponsive. While he had the support of an excellent hospice, it was not enough to help him run the marathon of caregiving.

What is alarming is that I didn’t understand the magnitude of this issue until I embedded with their family to make a film. If I—a palliative care physician who discharges patients home with new caregivers every day—didn’t know, who else doesn’t?

Family caregiver burden is an invisible crisis that will devastate our nation if we don’t solve it soon. With almost no national, state, or local funding allotted to support them, more than thirty percent of family caregivers use up their savings on caregiving tasks. This is not surprising, as caregivers must support every detail of another person’s life without extra income, support or training. And most working caregivers’ earning potential is compromised as they struggle to keep up with their day jobs.

This crisis is escalating rapidly. With approximately 10,000 Baby Boomers turning 65 every day, more people are at home needing support for age-related chronic illness and disabilities. Yet, at the same time, there are fewer caregivers available as the average American family is smaller and more geographically dispersed than ever before.

Professional caregiving support is out of reach for most, as it is expensive and hard to find. We see the burden of family caregiving increasingly falling on the shoulders of fewer and fewer people. Their duties are often grisly and difficult, such as toileting and bathing patients who can no longer clean themselves. Additionally, sixty percent of caregivers are now performing tasks that doctors and nurses used to do, like managing complex medications, giving injections, and taking care of wounds.

Caregivers must also deal with appointments, patient transportation, and navigating a maze of insurance benefits. It is a socially fraught and physically exhausting role. In a tragic paradox, if the care recipient were in a hospital or institution, most of these tasks would be done by trained healthcare providers and covered by insurance or Medicaid. Yet, at home, most Americans don’t receive coverage or communal support for these duties.

In the film, Rick burned through most of his savings, became physically ill, and experienced high levels of stress, isolation, and depression. Yet Rick—a white man with a supportive community and financial reserves—was one of the lucky ones. Caregiving disproportionately affects women and minorities whose lives can be upended for decades from their work burden.

Every American has a stake in fixing this problem, regardless of politics, race, or financial means. We will all want to be able to care for a loved one in need, and none of us should have to sacrifice our health and finances to do it. COVID-19 has shown us that any one of us could be thrust abruptly into this role and that we are one pandemic away from a systemic breakdown.

So what can we do? On a personal and family level, start by planning when a loved one will require care at home. Who will be available to help? And what jobs will they perform? In our communities, we must acknowledge and raise awareness about the huge contribution that family caregivers make to support the vulnerable while organizing ways to take on tasks that free up the caregiver.

But this will never be enough to meet the challenge. It will require a national strategy. In this country, when national catastrophes strike, our legislators declare states of emergency and authorize immediate funding and physical protection for those affected. When so many are in need of caregiving support right now, why do we rely on family ties and volunteers? The biggest lever we have to address the family caregiver burden right now is in Congress, where active conversations and debates will determine whether we have the political will to fund this essential workforce.

It’s time to treat the family caregiver burden like the national emergency that it is. Our politicians have the power to do that right now. And we must hold them to it.

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