The Coming Crisis: Helping Families Care for Their Aging Parents

by Brian E. Eck

It began with a fall–well, several falls actually. My mother, an active senior citizen living independently in a retirement community in the Chicago area, fell while gardening. She suffered a subdural bleed that required holes burred into her skull to relieve the pressure. Though identified as a fall-risk patient, she fell an additional five times while in the hospital. The next bur hole procedure nicked her brain and rendered her unstable on her left side. That’s when we moved my mom to California and began the journey of caring for an aging parent.

Such a life-changing event turns out to be a common tale. As my wife and I dove into the process of communicating with health care providers and making financial decisions, we discovered we were not alone. Many of our friends faced the same challenges, and we realized we were but a few of the millions of Americans struggling to deal with this complicated stage of life as our parents get older. As of 2011, baby boomers began to turn 65 at a rate of 10,000 a day, and the Alzheimer’s Association estimates the number of persons living with Alzheimer’s dementia will triple by 2040.

The families of this aging population serve as the primary source for both financial and caregiving support. Most of these untrained, unpaid, and unsung helpers suffer physically, emotionally, and professionally during the caring process and are overwhelmed by the enormity of the task. As a clinical psychologist married to a nurse, I felt well equipped to navigate the territory, yet we still encountered many difficult questions: How do we respect our aging parents’ personhood? How do we affirm their decisions? How do we deal with conflicting agendas of other family members while dealing with financial issues and medical decisions? In essence, how do we help our parents finish well?

Based on my own experience, the experiences of families in my clinical practice, and the needs of families from my church, I focused my sabbatical on researching the literature and interventions for family hardiness, resilience, and well being. From this, I developed a set of workshops to support families as they cope with caring for aging parents.

These workshops, designed for use with small groups in a therapist’s office or in churches’ adult or family ministry programs, enable families to go through a process of developing internal strengths and durability, a sense of control over life events, and meaningfulness in the face of adversity.

The seven-session program starts with an examination of the biblical perspective of families and marriages and an exploration of our feelings about these relationships. As we discuss what it means to honor our mother and father, we find various interpretations that can lead to conflict. This session shows us what God intended for these relationships and sets the foundation for the rest of the process.

Session two helps families identify red flags that indicate areas of need and concern. Checklists regarding hygiene, housekeeping, and physical and mental abilities clarify these areas for the whole family as well as health care providers. We also talk about what level of care is good enough, when it is appropriate to say no, and when and how to set healthy boundaries. Session three focuses on goal setting, problem solving, and good communication strategies. In session four, the decision-making process begins. Everyone wants to do the right thing, but what is the right thing? No single solution fits every family. We assist with identifying key issues, the competent parent’s wishes, and strategies for avoiding conflict, including how to hold and moderate a family meeting. Session five offers a basic education about health care resources and agencies, how to evaluate and select a facility, how to work with hospitals, and how to handle transitions. We also cover important end-of-life issues such as wills, trusts, and advanced directives, urging families to have these discussions before they are needed.

Session six explores spiritual issues and focuses as much on the caregiver as on the aging parent. The final session culminates with a debriefing and the formulation of individual plans of action for each family member.

These workshops, piloted several times in local churches, allow participants to build faith, hope, acceptance, and the foundations of resilience and successful coping. But they represent only a fraction of the solution that ultimately requires expertise from multiple fields to fully address the myriad challenges.

Several APU faculty members formed an interdisciplinary group to support and facilitate research on aging and the support of family caregivers. Leading the group, Adria Navarro, Ph.D., a gerontologist in the Department of Social Work, researches health and aging, and examines Church-based programs and services that improve the quality of life for vulnerable older adults. Julia Pusztai, MN, RNC, director of APU’s Neighborhood Wellness Center (NWC), conducts research on living with the losses and gains of aging. Along with APU’s senior Community Health Nursing students, she also works with the Azusa Senior Center and NWC, offering Azusa seniors free drop-in and ask-a-nurse services, including screenings and risk assessments, health and wellness education, and counseling regarding disease management and medication compliance.

Navarro and her social work colleague Barbara Johnson, MSW, LCSW, presented two workshops sponsored by APU’s Office of Human Resources that assist APU faculty and staff who care for aging parents, and other members of the group presented their research at Common Day of Learning on March 6, 2013. Statistics clearly show that this research and its applications in community- and Church-based programs will soon become a top national priority.

According to the President’s Council on Bioethics, “We are entering an unprecedented phase of our history—indeed, of human history—featuring a new age structure of society, longer and more vigorous old age for millions, new modes of dwindling and dying, and a likely shortage of available caregivers.” Whether triggered by a fall like my mom’s or by other physical or mental concerns, this inevitable life stage calls for more than love and good intentions. People need information and practical resources. I hope that my research, workshops, and pending workbook will serve as a complement to the efforts of my colleagues in the Church and academia as we seek ways for families and their elderly loved ones to journey through the aging process together with confidence and dignity. ##Aging America As of January 1, 2011, 10,000 people turn 65 each day.

The trend will continue for the next 20 years. Alliance for Aging Research The population over age 65 will double by 2040, and those over 80 will quadruple. Alliance for Aging Research By age 65, 8 percent of the population develops Alzheimer’s disease; 60 percent have it by age 85. Alzheimer’s Association The number of persons living with Alzheimer’s dementia is estimated to triple by 2040. National Care Planning Council Families or other private resources pay for 83 percent of elder care; 71 percent of all care takes place in the home. National Care Planning Council Approximately 20 percent of U.S. residents provide an average of 19 hours per week caring for adults aged 50 or higher. If paid, these services would exceed all current Medicaid expenditures. National Alliance for Care Giving In 2010, families providing Alzheimer’s and dementia care in California provided 1.6 billion hours of unpaid care at a value of $19.8 billion and paid an additional $7.9 billion in health care costs for themselves. More than 60 percent report high levels of stress, and more than a third report symptoms of depression.

Alzheimer’s Association Overwhelming numbers of family caregivers report that their caregiving activities negatively impact their work lives, requiring them to take time off, take a leave of absence, go from full- to part-time employment, take a less-demanding job, turn down a promotion, give up working entirely, or perform less efficiently and face possible dismissal.

Originally published in the Spring '13 issue of APU Life. Download the PDF or view all issues.