As her parents aged, 35-year-old Renee King found herself spending most days working a full-time job and most nights commuting 40 minutes to check in on her parents in Mount Vernon, New York. So much time spent on the road was exhausting and often grueling. Then, more than a year ago, everything changed. Her mother, who has amyotrophic lateral sclerosis (ALS), needed to be moved to a nursing home and her ailing, alcoholic father was now alone. So, King made a decision: She would move in and become the full-time caregiver her parents needed.
The return to the family home cut down on the 40-minute commute, but her day-to-day life changed completely. Her daily caregiving responsibilities vary from doctor visits, lawyer meetings, Medicaid applications, managing family finances, grocery runs, making meals for her dad, and visiting her mom in the nursing home. “I care for my parents 24/7,” King says. Between long hours caring for her parents, King was trying to get her own business off the ground and working as a freelancer to bring in income. Work—and her income—often had to take a backburner to her responsibilities at home.
Her finances also changed dramatically. She estimates she spends about $600 to $700 a month out of pocket for caregiving costs, everything from groceries to cleaning services to medical supplies. As a freelancer with irregular income, covering all those unexpected costs on the fly is stressful enough, but there’s also the future to think about. Most of King’s discretionary income now goes toward helping her parents. Bigger tasks like saving for her own retirement have mostly been put on hold. It is a reality that’s kept her up at night more than once. “One of my biggest fears is the negative impact caregiving will have on my long-term financial health … my lifetime earning potential, my retirement savings, my chances of owning property …,” she says.
For many of us, there comes a day when you switch roles with your parents. As they age and decline you become the caregiver. It’s an emotional, taxing time. Caregivers must juggle those responsibilities while managing their careers and families. Some quit their jobs, reduce work hours, or make other life-changing sacrifices.
Making that transition isn’t easy and it can be financially challenging, particularly for minority groups. According to AARP’s Family Caregiving and Out-of-Pocket Costs: 2016 Report, 78 percent of family caregivers incur an average $7,000 annually in out-of-pocket expenses as a result of caregiving. Hispanic women are devoting, on average, nearly 47 percent of their annual income to caregiving and African-American women like King are, on average, devoting more than 40 percent of their annual incomes. In contrast, white caregivers—both male and female combined—spend approximately 14 percent of their annual income on caregiving expenses.
While most of the expense goes toward medical costs and housing, according to AARP, the costs of caring for an aging parent can feel endless. For King, the biggest surprises—and often biggest financial hurdles—came from the seemingly small tasks. Putting food on the table for both her aging parents, buying them new clothing, and even the cost of gas to drive them to and from their appointments all added up fast.
Stories from the caregiving front
Nicole Rochester, M.D., was the primary caregiver to her father for three years before his death in 2013. He suffered from dementia, diabetes, heart disease, and other ailments. At the time she was a medical director for a community hospital-based pediatric hospitalist program, a full-time practicing pediatric hospitalist, and an assistant professor of pediatrics, responsible for teaching medical students and pediatric residents.
While many POC, especially women, find themselves struggling to keep up with the costs of caregiving, Rochester was lucky: Her work enabled her to provide for her father, filling in gaps in his small retirement savings. But Rochester didn’t have it easy either. Balancing a heavy workload with her caregiving responsibilities was hard enough, but she also had two daughters, 10 and 15-years-old, to raise when her father took ill. Finding time for her own family as well as for her father was challenging, to say the least.
“Juggling my family and caring for my dad was very difficult. I never wanted my kids to feel as if I was too busy for them, but it was also important for me to make sure they understood their grandfather needed me,” she says.
Rochester, unlike many caregivers, also had help from her two sisters and a supportive husband. “We divided our responsibilities according to our unique ‘superpowers.’ My oldest sister managed his home, my middle sister managed his finances, and I oversaw his health care,” she says. Each sister took turns checking in on dad, spending time with him, and seeing to his everyday needs. Still, Rochester estimates she spent 14 to 20 hours a week providing care for her father. And the physical and emotional challenges still took a toll. She recalls long days of working beyond her eight hours and heading straight to check on her father. “I often felt I was being pulled in multiple directions and wished I could clone myself,” she says.
Sharing the wisdom
Caregiving is an experience nothing quite prepares you for. “Witnessing my mom’s decline is the hardest thing for me. She loved traveling the world. She would talk to anyone and everyone. She never missed the opportunity to dance to a good reggae beat. To see her quality of life reduced to being confined to a nursing home bed relying on a vent to breathe, it kills me,” says King.
For new caregivers, learning the ropes and balancing new responsibilities is a challenge, especially for families who do not have large retirement funds to fall back on. Many adult children find themselves occurring out-of-pocket expenses they weren’t expecting and feeling awash in a sea of confusing bills and medical jargon. It is something King and Rochester know all too well. Since their experiences, both women have created tools and communities to help other caregivers. King founded TechUrElders when her mother was diagnosed with ALS. “I was doing basic tasks for her when she lost the use of her arms. She needed a lawyer, a health advocate, paperwork filled out, and financial support. I became her decision maker for medical care and support for my dad who was overwhelmed with the emotional and physical labor of the disease,” says King.
TechUrElders originally started as a blog where she shared tools she’d found with other caregivers, but soon King realized she’d need to scale up if she wanted to help more families.
TechUrElders is now the parent company for a chatbot called Elda that launched in 2019. Elda uses artificial intelligence to pair you with technologies like apps, wearables, sensors, and other devices you can use to help you care for your elder loved ones.
After three years of caring for her dad, Rochester left clinical medicine to launch Your GPS Doc, a health advocacy and consulting company. “We had numerous frustrating encounters with the health care system. I was blown away by the complexity and the unnecessary barriers family caregivers face while caring for loved ones. On many occasions, my dad received the care he needed only because of my background, knowledge, and influence as a physician. I felt that was unfair and knew that patients were suffering because of knowledge gaps.”
Through Your GPS Doc, Rochester works one-on-one with clients to help them navigate all aspects of the health care system. She also promotes promote health literacy by conducting workshops to help those with chronic illnesses and their family caregivers understand key topics related to their medical care and how to advocate for themselves in health care settings.
Caring for an elderly parent isn’t easy for anyone, especially if your finances and life balance are stretched a little too thin. One thing Rochester tries to impart is the importance of self-care. “Self-care is where I fell short. I was so incredibly busy, and I did not consistently take time to care for myself. I regret that, as I know I would have been a better caregiver if I had made more of an effort to keep my ‘cup’ full,” she says.
For King, the secret to managing it all is managing your expectations of yourself. “Do your best. Know that your ‘best’ changes daily. Some days you will rock caregiving, and some days you will completely suck. Regardless, you’re still doing your best that is all you have to do,” she says.
In the end, taking time for yourself, managing your finances as best as possible, and seeking out help—whether that be through a friend, a sibling, or a chatbot—can get anyone through the challenges ahead.