Eight years ago, I unexpectedly joined the other 38 million unpaid caregivers in the United States. The AARP estimates that 11.5 percent of the U.S. population are caring for family members in 2023. We are many, and somehow, we are still grossly overlooked and under supported in nearly every way.
My daughter, Eden, now in second grade, was born with a rare genetic deletion—so rare it does not have a name. She lives on a feeding tube, endures various chronic medical challenges, cognitive impairment, severe autism, and requires around-the-clock care. The genetic testing I completed during pregnancy had not indicated any atypical trajectory.
The level of care that Eden, our second child, needed jolted my husband and I into sleepless nights, exhaustion, and ongoing uncertainty about the future. Because of her autism, it is hard for my daughter to go places—even the library generally ends poorly because of her tendency to bop unsuspecting bystanders with her tiny fist or drop to the floor insect style on her back and thrash. Coupled with her medical issues, I have often felt like a shut-in over the past almost-decade since she was born—I have missed countless social gatherings, activities and events for my other child, and even everyday outings like going to the grocery store as a family. Our house looks and runs like a very loving, slightly disorganized hospital, complete with the syringes, nebulizers, and medications to prove it.
Over the years, I have discovered that what makes life manageable is to spend time with others and take breaks from the demands of someone else's needs. Yet, this is difficult to access because of the shortage of personal care attendants (PCA) and home health care workers. Increasing wages significantly for these paid care providers would likely draw more workers, which could offer caregivers a chance to rest and pursue work, community, and family duties. Right now, PCA wages are usually determined by each state (and generally accessed through county services). Some states reimburse more than others, but the wages are too low for the kind of skilled care that people with disabilities and medical challenges require. Salary.com lists the average PCA wage as $16/hour, which is also around the starting wage that the McDonald's advertises near my home in Minnesota.
The state of Minnesota, thankfully, plans to increase the PCA wage from $15.25 to $20/hour by 2025, which is a step in the right direction, but not enough given that full-time work at this wage (for a family of four) would result in an annual salary roughly only $10,000 over the federal poverty level. When wages are this low, unless the family has the ability to pay privately for workers or has family who will pitch in, it is nearly impossible to manage the demands of caregiving for close loved ones. Especially those who require 24-7 care, like my daughter and countless others.
If personal care attendants and home health care workers were more abundant and accessible, it would provide relief for caregivers who suffer from fatigue and burnout as well as improve the mental health outcomes for everyone in the family. It may also allow loved ones to live at home longer since family members would have more energy and resources to sustain their care. Additionally, this change would better support the paid workers who provide a profoundly valuable service and often struggle financially due to the paltry wages.
Families who provide care would also benefit greatly from fiscal support; this could be a stabilizing force for many. My husband and I have missed countless hours of work due to the myriad of medical appointments, the days and weeks my daughter is unable to attend school due to illness, and other unexpected care needs, such as when a paid caregiver cancels last minute. My husband is currently on an unpaid leave of absence from his full-time job as an educator because we were unable to sustain both of our careers alongside our heavy caregiving responsibilities. I know that these challenges are commonplace among our peers, yet we are fortunate since we have the resources and help from family to make this adjustment, at least for the short-term. Most Americans do not have that economic privilege.
The former first lady Rosalynn Carter, who understood how impactful caregiving is on our entire society and therefore spent her life as an advocate, said, "There are only four kinds of people in the world––those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." As a society, we must provide for the people who need us most. This includes those who offer devoted, essential care.
Emma Nadler lives in Minnesota and is psychotherapist and the author of The Unlikely Village of Eden: A Memoir (2023).
The views expressed in this article are the writer's own.
Uncommon Knowledge
Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.
Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.
