OPINION — The wafting smell of cleaning supplies and a lack of ventilation was overpowering as I walked through the nursing home door. I could feel the anxiety I shared with my parents and my uncle as we approached my great-aunt’s room. I love my great-aunt dearly, as does my whole family. But after her dementia prevented her from living on her own, the only care option within our family’s means was a nursing home covered by Medicaid. As we walked back to our car, my uncle turned to me and said, “When the time comes, I don’t ever want to be in one of these places.”
Seeing a loved one suffering from an illness such as dementia is stressful. But the anxiety I felt visiting my great-aunt last fall wasn’t only about her condition. I was haunted by the fact that a nursing home was her only option and that many Americans won’t get the care they need because our policies don’t support family caregiving.
This caregiving challenge resulted from a wonderful achievement: longer life spans for Americans. Both the total number and the proportion of older Americans has grown dramatically. But not all are living vibrant, independent lives well past the age of 65. More than a million Americans are in nursing homes like my great-aunt, and millions more need help with daily activities.
Plenty of nursing homes are nurturing places filled with hard-working people looking out for those in their charge. Then there are home-health aides, who provide essential services for many who want to live in their own homes. But these options aren’t for everyone. Many older Americans not only want to stay home, they also want to receive at least some of their care from a family member. And let’s not forget the families who want to take care of their children and relatives with disabilities. A failure to meet caregiving needs is not the result of a lack of commitment from loved ones.
The barrier to family members giving home health care is resources. Ironically, we pay strangers to take care of our family, but we have to forgo income by quitting our jobs, cutting back our work hours or taking leaves of absence if we want to do it ourselves. It’s an impossible choice.
Governments should direct resources based on people’s needs, helping them live good lives and contribute to their communities. No one would question the contributions of family caregivers, but government policy often ignores their efforts.
One policy that could direct resources to family caregivers is the Earned Income Tax Credit. The EITC was designed to reward working families and individuals and to ensure that everyone meets their needs. Unfortunately, it does not count caregiving as real work. A bill recently introduced by Wisconsin Democratic Rep. Gwen Moore would fix this flaw by allowing those who take care of an aging loved one, a child or a relative with disabilities to qualify for the credit.
Preparing for caregiving starts long before we face the nursing home door. Before parents buy a crib. Before you need to adapt your home to make it accessible for your loved one with a disability. Millions of Americans already confront impossible choices between working a job to provide enough for themselves or working as a family caregiver. Moore’s bill would help those parents, guardians and caregivers who want to help their loved ones live a dignified life in the comfort of their own homes.
Evan Preston is the director of the New Economy Program at the Federation of State Public Interest Research Groups, or U.S. PIRG. The program’s Work for Wellbeing campaign advocates an expansion of the earned income tax credit to include unpaid caregivers.