The Emotional Load of Caregiving

Bringing Caregivers into the Spotlight

Caregiving is a major part of life in America, but not one that’s portrayed frequently on TV sitcoms or movies—it’s the unpaid labor of love that happens behind the scenes in many families to some degree or another. In fact, unpaid family members and friends provide 83 percent of all long-term care in the US and two thirds of older adults rely exclusively on free care. The estimated economic value of this unpaid care is $470 billion a year.

According to the National Alliance for Caregiving, today 21.3 percent of Americans are caregivers, providing care to an adult or special needs child at some time in the past 12 months. This is an increase from about 18 percent in 2015.

In the United States women carry most of the caregiving load. While men do provide care, women provide more hours and often do the difficult tasks of assisting with toileting and bathing while men tend to handle finances more often. Nearly two-thirds of family caregivers are employed full or part-time.

Of current family caregivers:

  • 30% have provided care for at least 20 hours per week

  • Over half assist with personal care

  • One in five adults are caregivers

  • One in six Americans who are non-caregivers expect to become family caregivers within 2 years

  • 58% are women and 20% are 65 years old or older

  • 37% are caring for a parent or parent-in-law

  • Nearly 10% are providing care to someone with dementia

Even though I have been shaping health policy throughout my career—particularly Medicare and Medicaid policy—I only began working on my book, The Family Caregiver, when the policy began to affect me personally.

My mother had a stroke, then suffered a fall. She eventually developed dementia, and through each stage of her decline, I uncovered new perspectives and elements to caregiving.

As my mother and I navigated the healthcare system together for six years, I found that knowing the system and the laws that shaped it provided an advantage, but it still left me in the dark in some important ways.

In The Family Caregiver, readers will find:

  • Personal accounts and examples of what other families have experienced and how they’ve dealt with the twists and turns of caring for their elderly parents.

  • Helpful checklists and guides to help you evaluate options.

  • Definitions and context for medical and legal terms you need to know to give your parent the best care.

  • Important recommendations for how to take care of yourself, physically and emotionally, so you can continue to be a strong caregiver.

I designed the book to be chock-full of helpful information. Think of it as a curated collection of the things no one tells you—a resource you can dip into when you need guidance, ideas, facts, and the experiences of someone who’s been down the road herself.

If you’re a family caregiver, I tip my hat to you. I hope that my book can make a tough situation slightly easier to navigate.

You Are Not Alone: Universals of Caregiving

No one’s journey through caregiving is the same as the next person’s, but there are common elements. I once asked a friend how he ended up being responsible for his mother. His response was that of the four boys, he had the least emotional baggage with his mother. (He also did not think it was his wife’s job to do it.)

Another friend, whose mother was in an expensive assisted living facility that did not accept Medicaid, said he had not had time to think about the choices, so he went with what was close and available. He hadn’t considered whether she would outlive her funds. Then he started to worry about how long his mother was going to live and whether he would have to move her to a place that accepted Medicaid.

Another friend found that her mother did not want to leave where she lived, so my friend began to figure out how to structure something around keeping her mother at home. Six months later, she suddenly realized she was a family caregiver, 500 miles away from her mother. Her next step was to spend several months wondering whether she should move to be closer to her mother.

One friend thought her mother was fine, but after her father died she began to slowly take over her mother’s finances so her mother wouldn’t write small checks to the many charities that were filling her mother’s mailbox with requests. Yes, that is caregiving, too. Her mother still frequently asks whether she can contribute to the many mailings she receives. My friend travels to California from Washington, DC, two times a year to make sure her mother’s house is being maintained and, as she says, “to just check outside of holidays and other times when I might miss something that means I need to do something else.”

All these people, in different ways, are filling the role of family caregiver. I use the term “family caregiver” in my book to describe these people—whether related by blood or by choice—who serve in a wide variety of capacities to support the health and well-being of an elderly or disabled person.

Although no one can predict a patient’s future, some things are universal about family caregivers, regardless of economics and the patient’s healthcare status:

  • Every family caregiver should have certain legal documents from the patient, in order to act on behalf of the patient—financially as well as for health decisions.

  • All of us—not just the patient—should have documents to express what kind of care we want in different situations, including end of life.

  • Family caregivers need to understand the healthcare system, and the roles played by different parts of the system, so they can understand the realm of what is possible when advocating for the patient.

  • Family caregivers need to know they can ask for help— and whom to ask.

  • Family caregivers need to know how to take care of themselves, physically and emotionally, so they can be caregivers.

  • Early in the process, the prudent family caregiver knows to set up a joint checking account with the loved one. With the caregiver or another trusted person on this joint account, the loved one’s essential bills can continue to be paid.