11/26: Former FCA Staff Member Monique Parrish on Honoring and Supporting Caregivers

November 26, 2015

Listening to caregiver stories week after week changed me. I heard and felt the deep heartache experienced by women and men caring for loved ones with Alzheimer’s disease. Their tales were touching, and humbling, and at times very funny. Fortunately for everyone, laughter was never off the table. That was vital. As the facilitator of a support group for caregivers, I discovered that the zigzagging and sometimes overwhelmingly taxing caregiver journey is occasionally relieved, if only for a moment, when caregivers find a safe place to laugh. Finding levity in the absurd and silly, whether in themselves or their situations (although never at the expense of their loved one) proved an unexpected but healthy release.

After two years of biweekly support group meetings, I left the group with a heavy heart. The next step in my life’s journey was pursuing graduate work, with a focus on caregiving. But I took away a critical lesson. I learned how important community is for people, for caregivers. Getting out of the house, learning about a loved one’s disease, sharing tips for getting through the day, and feeling connected, helped sustain these women and men. Community, I realized, is key for many caregivers. It reduces loneliness and isolation, and offers solace when times are hard.

In 2001, I received my doctorate in public health (I wrote my dissertation on caregivers—The Public Health Implications of Female Breast Cancer Patients Age 60 and Older Caring for Others). Months after graduation, I took a position with Family Caregiver Alliance (FCA) in San Francisco, the flagship of California’s eleven Caregiver Resource Centers. As a state and national leader in caregiver support services, policy, research, and program innovation, being hired by FCA for a caregiver devotee was akin to getting a coveted position at NASA for an aspiring astronaut. I was thrilled.

What made my new position of project manager of the Statewide Resources Consultant division of FCA even sweeter was the work. I worked with all of the state’s Caregiver Resource Centers to support staff trainings, improve the state’s caregiver data collection and reporting system, and enhance the delivery of caregiver programs and services. I additionally had the opportunity to travel to each Caregiver Resource Center (the Centers are spread throughout California from San Diego to Chico) and meet with staff. At every center, I was stunned by the staff’s passion and commitment to making caregivers’ lives matter. It was grace itself.

After just two years at FCA, the call of my three children entering adolescence (at roughly the same time), led to the difficult decision to leave the agency and launch a part-time health care consulting practice from my home. Like with the caregiver support group, however, I left my wonderful job at FCA with another incredible life lesson. I learned that sometimes an important and necessary complement to building and sustaining community is advocacy. While FCA supports community in many forms, through its online and in-person education, training, and support programs, it also advocates for caregivers. And it takes this role seriously.

During my tenure at FCA, the agency advocated for California’s Paid Family Leave program and for more funds for the state’s caregiver resource centers. When I think of the staff’s absolute devotion to caregivers, I cannot help but think of the oft-repeated tag line from the movie, Galaxy Quest, “Never give up, never surrender.” Indeed FCA never gives up and it never surrenders. Today, FCA continues to provide caregivers with a community and a voice. I am proud to be a staff alumna.

My children are grown now and for the past several years I have worked on projects ranging from promoting palliative care for patients and families served by California’s public hospital systems (the center of the state’s critical safety-net health care system), to improving care transitions for patients moving from one health care setting to another, to helping nonprofits improve services for older adults and persons with disabilities. In all of this work, addressing the needs of caregivers is central to implementing comprehensive and successful health and social service programs. This has been a key insight for me. It helps me to continue to listen to and advocate for caregivers.

With an aging state rich in diversity, and one likely to experience dramatic increases in chronic health conditions (including Alzheimer’s disease), many California caregivers can expect to care for loved ones with serious illnesses or disabilities for longer periods of time. The time is right for California to move caregivers and caregiving to the top of the state’s To Do List. Honoring and supporting caregivers is about honoring people and community. It’s what I have learned in my career; it’s what I now know is most important.

— Monique Parrish, DrPH, MPH, LCSW, Founder and
Director of LifeCourse Strategies