Stacy is a full-time teacher, wife, and mother, who is also a full-time caregiver for her 88-year-old father and his second wife who live in Illinois, and for her 83-year-old mother who lives in Pennsylvania. Because Stacy lives in Indianapolis, she is also a member of what we call the “sandwich generation on wheels,” or a long-distance caregiver.
Stacy’s father recently had a heart attack. She wanted to drop everything to go help, but she could not find someone to cover her classroom with such short notice. Then, a few weeks later, Stacy’s mother slipped on the ice, breaking her hip. A neighbor drove her to the emergency room and waited with her; Stacy was with her fifth-graders and didn’t find out about her mother’s accident until her lunch break. She wanted to head to Pennsylvania right away, but she was on carpool duty for her two teenaged daughters that evening because her husband was out of town.
Stacy’s husband and her two daughters need her. But Stacy’s parents and stepmother need her, too. Like many adult caregivers, Stacy is sandwiched between the needs of both the older and younger generations of her family. How, Stacy wonders, can she manage to be in four places at once: her classroom, her minivan, her father’s hospital room, and her mother’s physical therapy session?
Stacy is not alone. As a recent Congressional report noted, 68% of those retiring had a child living within 10 miles of them in 1994, but 20 years later, that number has decreased to 55%. More than one in ten family caregivers live at least an hour away from the person for whom they are caring. While there are sources of advice for long-distance caregivers, ranging from AARP to the Mayo Clinic, our field experience and work in elder law (Naomi) and faith communities (Amy) has taught us that it is helpful for family caregivers to define the "sandwich" layers they face in order to proactively plan for what role they can and should play.
Layer 1: The Older Generation
First, clarify who in your older generation depends on you in some way. List your parents, stepparents, in-laws, grandparents, aunts or uncles, etc. In conversation with them, formalize your caregiving role. This is particularly important in stepfamily situations, as we have noted in previous posts (see here or here, for example). Willingness and ability to care must be taken into consideration. For example, Stacy is willing to care for her parents, but distance limits her ability. However, what about her stepmother? Stacy may not be willing to care for her, even if distance were not a factor. Conversely, some families may include half-siblings (the biological child of a stepparent) or stepsiblings who may be willing and able to do more of the caregiving, but clear divisions of labor and expectations for communication can help blended families avoid conflicts. Deciding in advance on caretaking roles (such as who pays for things, who is consulted in making medical decisions, who drives dad to the ER, etc.) can help make the process less stressful for families.
Additionally, a care recipient can assign a power of attorney and/or medical power of attorney, and complete a living will that will formalize expectations for care. For example, a POLST form can be completed with a physician. This form remains in the medical file and communicates the wishes of the care recipient as regards to end-of-life treatment. The POLST form is especially helpful if the long-distance caregiver is the only person who can legally make decisions for the care recipient.
Then, acknowledge that by living at a distance, you cannot be available 24/7 to everyone, in person. Determine your trigger points for travel. For scheduled procedures, is there an acuity level that must be met before you fly or drive to be present? A major surgery? Yes. A physical therapy appointment? No. For emergencies, what is a reasonable expectation for arriving? Next, plan for how you will manage planned or emergency travel. We know this sounds a little advice column-y, but it’s good to be prepared for that 2 A.M. phone call that requires you to drive several hundred miles.
When you cannot be physically present, consider how you will stay connected and whether technology may help. Entire industries are developing applications that connect to smart homes, surveillance cameras, and interactive devices, such as Google’s Alexa, to meet the needs of elders and their family caregivers. Personal health monitors, as well as smart home technology, can monitor for falls and track weight gains and losses, play a favorite television show, or adjust thermostats, and thus contribute to the safety, entertainment, and comfort of older or ill adults. Already, senior-living residences have considered adopting “Addison,” a robot caregiver, who rewards residents when they meet goals, monitors changes in movement, and talks to the residents with screens strategically placed around the apartment or room. Technology can help connect when a loved one lives at a distance.
Layer 2: Your Job
Full- or part-time employment adds another layer of complexity for the long-distance caregiver to manage. Does your employer provide paid leave for family care? If so, learn what the eligibility requirements are and what the wage-replacement percentage is. If your employer does not provide paid leave, do you reside in one of the six states or District of Colombia that provide access to paid family leave? If not, is your employer covered by the federal Family Medical Leave Act? Although there are some restrictions (only employers with more than 50 employees are mandated to provide leave, only employee’s who meet a certain threshold of hours worked in the previous year, and uncompensated leave may not be feasible), the federal FMLA benefit does offer job protection for up to 12 weeks of leave.
In addition to extended leave, what type of intermittent leave is available? Can you use sick leave to care for a loved one? Some states, such as Illinois, have enacted laws where an employee can use accrued sick leave days to care for a relative. Who are the colleagues who will cover for you when you are out? Are there ways that you can plan ahead to lessen the burden of your absence on your co-workers?
Layer 3: Your Spouse and Children
What role do you play in your immediate family? Communicating with your spouse and your children about your goals for this season of life is critical. Acknowledging how you will be dividing your time, and why, will help them feel engaged and involved. You will need their moral support in your role as caregiver. If you carpool, cook, clean, etc. in your home, who will pick up those tasks in your absence? If you must miss semi-major life events (school assemblies, work parties), how will you compensate for not being there?
The role of family caregiver is complex, potentially overwhelming, and yet routinely ranked as “highly meaningful.” Many of us, like Stacy, will answer the call to be a long-distance caregiver but worry about how to be in several places at once. Staying connected at a distance can be done—and done well—when expectations are clearly defined with every layer of the sandwich.
Naomi Cahn is the Harold H. Greene Professor of Law at George Washington University Law School. Amy Ziettlow serves as pastor of Holy Cross Lutheran Church. They are the co-authors of, Homeward Bound: Modern Families, Elder Care, & Loss (Oxford University Press 2017).