“When my 89-year-old mother was diagnosed with a rare form of cancer and relocated from Alabama to be near me in North Carolina, I quickly realized I was at a loss about area resources and support to help her. I felt overwhelmed by her new diagnosis. Mom and I had entered a ‘new world’ for which we were ill-prepared. And, I realized we need information and resources, not just support and a community,” says Frances Saus Hall.
According to MetLife, there are 10 million adult-child caregivers in the United States – a number that has risen by 300 percent in the past 15 years. The value of the services informal (unpaid) caregivers provide is estimated at more than $350 billion annually. The impact of adult-child caregiving on the individual, family, community and our nation are staggering, and the trends and impacts are predicted to continue increasing for the next 20 years.
Often, caregivers don’t consider themselves as caregivers. They simply do what needs to be done. However, recognizing other adult-children / adult-child caregivers faced similar struggles in trying to care well for their parents, Hall launched Adult Children of Aging Parentshttp (ACAPcommunity) in 2012 as a Hickory, NC community-based program to provide information, resources, support and community for adult-children who are, often, primary caregivers for their parents. Program attendance grew rapidly, and support and community among participants emerged.
Dr. Jane McVicker Everson began attending early ACAP programs, quickly saw its value, and soon partnered with Hall to expand ACAP. Everson was caring for her parents who lived in northern Virginia. Within a few months of Everson’s beginning to attend ACAP, her father had a stroke, requiring hospitalization, rehab and a variety of difficult decisions. When he passed after several months, Everson’s mother found herself in their large home without her life partner and several hundred miles from either of their adult children. She decided to move near her daughter, selling the family home of 40+ years and relocating to an unfamiliar area. Like so many adult-child caregivers, Everson has experienced long-distance caregiving, requiring periodic travel of hundreds of miles to provide support for parents, the uncertainty of helping make critical decisions, losing one parent and helping the other adjust to a new reality and “up close” caregiving that includes serving as a parent’s only means of transportation.
Each caregiving situation is unique, and all caregiving situations are similar.
Envisioning a national scope for the nonprofit, Hall and Everson birthed ACAPcommunity, a nationally-unique effort designed to help adult-child caregivers become more effective in their caregiving role while lessening the impact on the caregiver while also helping her/him begin to prepare for her/his own elder years.
They conducted a national survey of adult-child caregivers and professionals to determine strongest needs and most pressing concerns. As a result of the survey, Hall and Everson developed an educational curriculum of 24 programs, organized into six modules that offer evidence-based information and resources relative to issues of aging and adult-child caregiving.
Each month, local chapters present a 90-minute program in which content-area experts address a wide variety of age-related and caregiving issues. Typically, 30-35 adult-child and other family members and professionals attend the monthly programs, although attendance ranges from 25-70. In addition, Hall and Everson have recorded, to date, 25 audio podcasts, conversational interviews with content experts that have been heard by more than 4,300 times by caregivers in 48 states and 45 countries and launched a second ACAP chapter in Pennsylvania with plans to start new chapters biennially.
Later this year, the second annual ACAPcommunity conference will be offered, anticipating 100 caregivers and professionals to discuss common issues facing the group. “Balancing the Juggling Act” will be held in Hickory, North Carolina on November 5, 2016.
As adult-child caregivers, themselves, Hall and Everson understand both the joys and challenges of caring for an aging parent while balancing family, work, community activities and caring for themselves. Like many adult-child caregivers, most of whom are women, Hall and Everson have put their professional careers on hold to care for parents. They are passionate about ACAPcommunity’s mission — To provide information, resources, support and community for adult-children as we care for our aging parents and for ourselves. In sum, ACAPcommunity is designed to help adult-child caregivers most effectively care for their aging parents as well as to help caregivers begin to prepare for their own aging.
Everson states, “Personally, Frances has accompanied me as I journey with my aging parents – offering a listening ear, a hug, a referral to a professional caregiver, an introduction to a fellow adult-child caregiver with similar challenges, or most frequently, a simple but powerful reminder of the precious time we spend with family. Professionally, she inspired me to make a career change – leaving a university position to work side-by-side with her as she transforms her vision for ACAPcommunity into an innovative and well-respected nonprofit organization. I honestly don’t think I could physically or emotionally provide informed and compassionate care for my parents and take care of myself without Frances and ACAPcommunity.”