Documenting Caregiver Experiences

A Q&A with anthropologist Rebecca Berman, PhD, who interviewed dozens of caregivers about what it’s like to care for a loved one

For our recent cover story, “Once Upon a Caregiver”, we partnered with AgeGuide and AgeOptions, two Chicagoland Area Agencies on Aging, to share stories from caregivers — their challenges, triumphs, and daily insights. Evanston-based anthropologist Rebecca Berman, PhD, spoke with nearly 30 caregivers about their experiences, asking each person about how they became a caregiver, how they find resources, and what they wish society better understood.

Here, we interview the interviewer. Berman shares her own background and takeaways from her in-depth conversations with caregivers, as well as the ways their words have impacted her life.

Caregiving Magazine: What compelled you to explore caregivers’ experiences?

Rebecca Berman: Since the early 1980s, I have been doing research and program evaluation to document, explore and better understand the experiences of older adults and the family members, spouses, and friends who care for them. After retiring in 2022, I was asked by the Illinois Family Caregiver Coalition to collect stories from caregivers. Although I was busy doing more for my father, who lived six hours away, I felt like continuing to learn from the experiences of other caregivers would be meaningful.

Caregiving: What is your background, in terms of education, profession, and area of interest?

RB: After I worked as a nursing assistant in two nursing homes, I went to grad school. In an ethnographic field experience program at Northwestern University, I volunteered in a senior center and participated in local life in a remote northern area of the Navajo Nation, where many families lived without electricity or running water. Shortly after completing my doctoral research on the cultural meaning of interdepartmental meetings, I worked on an ethnographic study to understand how people experience aging in five culturally diverse Chicago-area neighborhoods. I also taught in a graduate program in gerontology at Northeastern Illinois University, where I encountered many students who were caring for others. Together these experiences inspired me to continue a career as a community-based qualitative researcher in the field of aging. My focus was to gather useful and compelling information that can inform the design and implementation of programs to provide support and meaningful lives for older adults and those who care for them.

Caregiving: How did you find the caregivers you interviewed for this piece?

RB: I interviewed 27 caregivers, 26 of whom agreed to share their story with the Illinois Family Caregiver Coalition. The caregivers were clients of Area Agencies on Aging (AAA) in Illinois. Staff from the AAAs and the service providers in those areas were instrumental in reaching out to caregivers to get their permission for me to call. It often took multiple calls for me to be able to reach each caregiver, because their lives and schedules were extremely demanding. All interviews were conducted by phone, with the exception of one person who was interviewed by video conferencing. I took detailed notes, sometimes reading them back to the caregiver so that they could confirm that I accurately conveyed their words and perspectives. I then wrote a story that summarized their interview and mailed or emailed a draft to each caregiver so they would have an opportunity to review and make any needed changes.

Caregiving: Did you notice any themes or similarities as you conducted the interviews?

RB: At the most basic level, the stories reinforced what many of us already know — that caring for another adult requires considerable mental energy, physical energy, time, and resources. Caregiving demands whatever strength and fortitude the caregiver can give. Not everyone has the capacity to give in the same way.

These stories also highlight the way in which caregivers’ lives change over time, often in dramatic ways. Many caregivers reprioritized the very core of their lives and lifestyles. They relocated to new places, travelled across states to provide what their loved one needed, ended careers, changed jobs, orchestrated care from a distance, missed family events, discontinued social activities, took on new roles, connected with other caregivers, and negotiated family relationships.

The work of care can put caregivers at risk for poor physical and mental health; most of the caregivers interviewed recognized their needs for breaks and self-care. Some caregivers were overwhelmed or at risk of harm but had few if any alternatives for getting institutional or paid care for their loved one.

The stories also teach us about how the experience of caregiving itself changes over time, as the needs of their loved ones shift. Caregivers often had to shift their expectations of their loved one and those around them.

Although caregiving can be a shared experience, these stories also demonstrate that both the individual and context matter. Caregivers had different personal preferences for how to provide “good” care and to what degree they sought out social connections or support. Yet, the setting in which people live also impacted the availability of family and friends or how hard it was to access services. Caregivers frequently talked about the difficulty of finding useful information, resources, or services they were eligible for and overcoming barriers in the systems that provide such resources.

Caregiving: What do you hope we, as a society, learn from these caregivers’ experiences?

RB: The caregivers in these stories repeatedly mentioned that society needs to make it easier to find appropriate information, resources, and services. These stories also allude to the financial impact of caregiving; some caregivers must sacrifice their own financial well-being in order to care for someone else. But it is not just about getting information and services. Caregivers in these stories frequently mentioned the value of talking to someone, often a service provider or social worker, who understands their situation or [of sharing] stories with other caregivers. Most believe that until someone has this experience themselves, they don’t really understand how demanding and important care work really is. They feel both paid and family caregivers need more appreciation.

Caregiving: What do you hope other caregivers take away from these stories?

RB: As many of the caregivers in this project said, there was a point which they learned they were not alone in the experience of caregiving. This happened when they were able to find at least one person — a service provider, neighbor, family member, or friend — who had both empathy and knowledge about resources. The stories tell caregivers that it may take a great deal of effort to get there, but don’t give up. Keep searching for the people who can listen to your story and the resources or programs that fit your needs so that you can provide or arrange the care you prefer for your loved one.

Caregiving: Do you have any personal experience with caregiving?

RB: My mother was diagnosed with Parkinson’s Disease when I was in college. My father became her full-time caregiver after she suffered a brain bleed during surgery. He eventually recognized that he could no longer safely care for my mother at home and placed her in a skilled nursing facility, where he visited daily. I came when I could to support his role. He continued to live in their house, which was in a small college town in a rural area with no family nearby. I had been making six-hour drives for several years and with increased frequency. I stayed in close contact with neighbors and others who were helping him. Earlier this year, my father was asked to retire from his volunteer job at a nursing home. He lost his ability to drive and had difficulty maintaining his home, but he refused to accept help. I had long, sometimes difficult conversations with my dad until he was ready to leave the home he built and moved to an assisted living apartment in a retirement community near one of my brothers. I am able to visit my dad more frequently and have recently been designated his financial power of attorney. His needs are changing day by day, and thanks to the caregiving stories I have heard over the years, I am hoping I can be ready, emotionally, for what might lie ahead.

Caregiving: How did you feel getting to know the caregivers featured here?

RB: Honestly, I had so much on my plate in my own family, I didn’t have much time to process. One part of me was relieved that I had this project out the door, but I was also grateful that it was timed in a way that I could remind myself of the role of caring I was increasingly taking part in.