When was the last time you cared for another person? When was the last time someone cared for you?
The answer to those questions likely depends on your definition of “care.”
Does care mean feeding an infant? Does it mean helping someone with a disability get dressed? Does it mean holding someone when they’re scared? Does it mean checking in with a coworker to see how they’re feeling? Does it mean holding the door for a stranger? Does it mean quitting your job to tend to your elderly father?
The answer is yes. Care means all of the above and then some.
Caregiver feeding an infant with a bottle, holding a plush lion toy.
Care is something everyone needs at every life stage. This is especially true at the beginning and end of life, though some people with disabilities might need care throughout their lives. Caring for another person is a beautiful thing. It can also be incredibly hard work, taking a toll physically, emotionally, and mentally.
Earlier this year, PBS aired a documentary titled Caregiving, produced by actor Bradley Cooper and narrated by actor Uzo Aduba, that pulled the curtain back on how precarious the caregiving situation is in the United States.
For one thing, having health insurance does not mean long term care will be covered. In fact, it probably isn’t.
Of the two health insurance programs offered by the government, Medicare, which is for people over the age of 65 and people with disabilities, does not cover long-term caregiving. Medicaid, which is for people with low incomes, does cover some long-term caregiving. That said, many people have incomes or assets that are too high to qualify for Medicaid, but not enough to afford the cost of long-term care. Private health insurance often does not cover long-term care, though people can buy long term care insurance if they can afford it.
“The cost of caregiving is unbelievably high for many, many people and, very honestly, completely unaffordable for most,” Paul Irving, Senior Advisor, Milken Institute, says in Caregiving.
This is why so much caregiving work is done by family members, usually women. The work is most often unpaid. According to Caregiving, “Ten states including Missouri and North Carolina, compensate family caregivers. And thirteen states and the District of Columbia have paid family and medical leave programs.” Michigan is not one of these states.
Part of the reason the responsibility of caregiving has shifted to individuals is due to the fact that people with disabilities are no longer routinely institutionalized. Institutionalization has a sordid history, rife with abuse and dehumanization.
In the 1970’s, the Independent Living (IL) movement began, in part, as a rejection of institutionalization. IL advocates wanted people with disabilities to be able to live in and be a part of their communities and to receive the supports necessary for them to do so. The IL movement brought about major changes in disability rights, including the Americans With Disabilities Act in 1990.
In the 1980s and 1990s, many institutions housing people with disabilities were closed. But no provisions for care were made.
“The system that existed of institutionalizing people was dismantled, and it was not replaced,” Josh Carter of the Rosalynn Carter Institute says in Caregiving. “It was not replaced with institutionalized care or any government supported care. It was replaced by family members.”
Younger man in glasses talks to an elderly man in a wheelchair outdoors.
And that is where things remain today. Caregiving is lauded as a selfless act, but there exists very little in the way of support for the people who do the work. That includes unpaid family members as well as employees in the caregiving industry, such as home health aides. Despite the astronomical cost of professional caregiving, these jobs, which are often filled by Black women, pay very little.
Caregiving features stories of an adult daughter who had to quit her job to take care of her father with Alzheimer's, of the mother of a daughter with cerebral palsy who can’t bear to think about what will happen to her child after she and her husband are no longer alive to take care of her, of a ninth grader who is a caregiver to his mother who has multiple sclerosis, and more.
While there is love and joy in all of their stories, there is also so much hardship and suffering.
“Care is not a nice-to-have, it’s an essential,” says Ai-jen Poo, president of the National Domestic Workers Alliance. “The people we love are at stake.”
Despite this, caregivers in the U.S. are largely on their own.
In a country that claims to value and cherish families, it should not be this hard for people to take care of the people they love. We need, ultimately, to take care of our caregivers.