Several years ago, my parents were in town from Rochester, New York, and we visited my sister who lives nearby. While we were all sitting in the living room chatting and catching up, my dad asked for some ice to put in his glass of water. My sister apologized, saying she’d just refilled the ice tray in the freezer so it would be some time before any ice was available.
Five minutes later, he asked for ice again. And again, five minutes after that. At that point my sister and I stopped cold and looked at each other—and then looked at my mom. For some time, she had been flagging that she thought something was wrong with him.
A few weeks later while I was in town visiting them, I ran into my father’s doctor at a family friend’s party. I pulled him aside and told him what had happened and what I feared. He put it bluntly: “I think your dad has Alzheimer’s.”
For a while, my mother served as his sole care provider. Then, on another visit a few months later, I noticed things around the house slipping into disrepair. Lightbulbs were out and not getting replaced. And one day, I saw my dad stuffing things into the cushion of the couch to keep the spring from popping out.
I knew then that we had to do something. I called my brother and sister, and we started discussing it: How do we make sure he is getting the medical care that he needs? What other kinds of support do my parents need? Should we downsize their home? It was overwhelming, and I found myself crying yet knowing I needed to be strong for my mom and dad. I remember thinking, “When did this happen? When did I become the one taking care of my parents instead of my parents taking care of me?” I was in shock and in denial, but I knew I had to become the one responsible for their care and well-being.
So began a series of very difficult conversations with my parents. They made the decision to leave their home of 40 years to move in with me, my husband, and my then–5-year-old daughter. Fortunately, I was able to work remotely and take time off as needed to travel back and forth to Rochester and assist them. Over the holidays, we packed up all of their things and moved them to Maryland.
I was sad, knowing that I was leaving my childhood home, my security. But I also knew that I could no longer deny the changes taking place within my family.
Creating a multigenerational home has been an adjustment. At the same time that I’m now caring for my parents, I also have a young daughter to help care for and raise. The burden of care is falling heavily on family members across the country, and in particular those we affectionately refer to as the “sandwich generation,” (or I like to say, the “panini generation”), the 47 percent of Americans who have minor children in their homes and aging parents. From the early ’90s to the early 2000s, the number of Americans acting as caregivers for parents and children increased at a drastic rate, and the need for more of these dual caregivers will only continue to increase through 2030. As more baby boomers age and their need for care increases, the number of available caregivers is struggling to keep up, not only because Generation X is so much smaller than their parents’ generation, but because they’re trying to juggle caring for their children as well as their aging parents.
My husband and I often feel squeezed in the middle trying to manage the care needs on both ends of the spectrum. My responsibilities have tripled from one child to now three people depending upon me, and I’ve had to figure out how to meet these very different needs. We have had to make many adjustments. Currently, we’re modifying our house by adding stair lifts to adjust to my parent’s physical needs. With my dad’s Alzheimer’s and my mom’s arthritis, they could no longer drive. So we had to teach them how to utilize technology to use car-sharing and taxi apps so they could get around independently. With more people living in the house, things get dirty faster, so we’ve had to hire a housecleaning service. We also have to negotiate everything—from who will do the cooking to which movie we want to watch as a family.
It’s been an emotional challenge for all of us as well. My 7-year-old daughter loves spending time with her grandparents. I feel very lucky that she’s growing up with them, and I’m happy that they’re exposing her to more of our Indian culture and language. But there are times that she only wants quality time with me or my husband, like reading a book to her or playing with her, and feels like she has to fight for our attention. It’s been a learning curve in balancing adequate one-on-one time with her.
Being pulled in both directions can be complicated and overwhelming. Luckily I have a job that offers time off, via a paid leave policy, and control over my schedule. I could not maintain my position or my level of leadership without this flexibility as well as help from those around me. I’m grateful to have options. But most families aren’t as fortunate as they try to navigate their care needs.
The United States is the only developed country that does not guarantee paid family leave. According to Family Values at Work, a mere 14 percent of people working in the private sector have access to paid family leave to welcome a new child, recover from a medical condition, or take care of a sick family member. And more than 37 million people employed in the private sector have no paid sick leave at all.
Often, we talk about the lack of paid leave as a problem for new parents. This means many new moms and dads have to get back to work sooner than they would like, rather than recovering from childbirth or spending time bonding with their new child. Instead, they’re forced to worry about how extended leave might impact their income or position in the workplace.
It also means people across the U.S. don’t have adequate time to deal with serious health conditions or take care of aging or ill family members. Paid family leave, medical leave, and sick days all are critical for working people to have the freedom and flexibility to care for themselves and their families.
Our system for supporting family caregiving as a whole—from child care to long-term care—is broken. While the fight continues at the federal level, more states are recognizing the urgent need for more flexible approaches to juggling work and care. This July, Hawaii Gov. David Ige signed a bill (HB 607) establishing a landmark program to assist families with their caregiving responsibilities, elder care included.
The novel Kupuna Caregivers Program (named after the Hawaiian term for elder or grandparent) will offer relief for those struggling to juggle work and family. It will provide up to $70 per day to help cover the various costs of long-term care. The program’s goal is to keep more people in the workforce while also providing quality care for aging family members because no one should have to choose between their retirement security and caring for their parents as they age. It also fixes one of Medicare’s shortcomings for working families, as the social insurance program does not reimburse most long-term care costs outside of a nursing facility.
Washington state is considering a similar bill. Also this year, advocates in Maine and Michigan are launching state-level family care initiatives that would be financed by creating a state tax on income above $118,000, to be shared between employer and employee.
Programs like these aren’t just important in providing working people a better balance while they juggle work and family, but keeping them in the workforce at all. A report from the Brookings Institute and the Hamilton Project finds the cost of care to blame for a steady drop in the number of adults who are employed or looking for a job. More than 70 percent of those surveyed in their study said that caregiving kept them out of the workforce. Too often caregivers, who predominantly are women, have to leave their jobs because the burden of family care is not affordable or sustainable. And they often neglect their own health and personal needs.
My journey has been tough and beautiful all at once. Having my parents move in with us has been a tremendous relief, and lifted emotional burdens that were manifesting in my own health and well-being due to stress and worry. My husband, parents, and even my daughter have created what I call a “Team of Us,” an internal family care team where we each play different support roles. As we care for my parents, they take care of us in various ways as well, picking up my daughter from school and caring for her when my husband and I travel. My daughter also pours her own love into our family dynamic. I’m very fortunate to have support from all sides. Our arrangement has made me appreciate the real struggles families and care providers are facing. It has inspired me to help build and grow a national movement of families and care providers for paid leave, a crucial first step to so many others the U.S. must take to truly value caregiving relationships and to address the needs of millions of families.