November is National Family Caregiver Month. In his annual presidential proclamation, President Trump noted, “With generous hearts and faithful devotion, they honor the sanctity of life and affirm the inherent value of all human beings. “
When we talk about family caregivers at Benjamin Rose, we mean the network of informal, and unpaid, supports that allow older adults and people with disabilities to live with dignity. Family means many things to different people. It’s not always a blood relative. Friends, neighbors and colleagues are all part of the fabric that allows someone to successfully age in place. Meaningful conversations about family caregivers include all those who are part of that network.
A friend shared the story of visiting the doctor’s office with her ailing father. She sat with him through a series of tests at the hospital, then waiting for the results. When the doctor came in, he confirmed the diagnosis that she and her father feared. And then, he left the room. And left them devastated, alone, afraid. The world changed in that moment for the patient and the caregiver.
Taking part in a caregiver support group, one woman shared the journey of caring for her father as his dementia worsened. When her aunt began to show similar symptoms, family turned to her again. She loved her aunt but was drained by the experience of caring for her dad. Relationships with other family members were strained, and she felt her own resentment that others assumed she would take on these responsibilities. Chronic health conditions require changes in lifelong relationships. It may be the journey of a lifetime, but it should not be a journey we feel we must make alone.
Caregivers bear the responsibilities of their loved ones in addition to their own needs and wants. A caregiver’s role is often in addition to the demands of being an employee, a spouse, a parent or a sibling. Caregivers often don’t acknowledge the significance of their role, or the impact it has on them. They may act out of love, empathy or obligation, but the work can be hard, and may not always be appreciated by the ones in their care.
At Benjamin Rose, we realize that the role of a caregiving may be rewarding, but it is also hard. We draw inspiration from the Japanese concept of kintsugi. In Japan, this technique is used for repairing broken ceramics, filling cracks with gold and rejoining broken pieces. There is beauty and art in the repair. Our work with caregivers helps address the fractures in life, and help make the caregivers’ stories, and those of their loved ones, complete.
Caregiver supports come in many forms. The staff in our Center for Research and Education have developed evidence-based programs that help improve the quality of life for caregivers and those in their care. Organizations across the country use our BRI Care Consultation and SHARE programs to support caregivers in their journey. We partner with employee assistance programs, health plans and care providers to offer resources for family caregivers. We also offer caregiver supports as a direct service through WeCare…because you do. And, through our partnership with the Family Caregiver Alliance, we offer Best Practice Caregiving, an online resource of more than 50 evidence-based programs that are proven to support family caregivers in their roles and improve the health outcomes of those in their care. Through these efforts we support the daily responsibilities of family caregivers, and advocate for greater awareness and inclusion of caregivers in conversations about aging, health care and public policy.
National Family Caregiver Month is a time to honor family caregivers. It should also be a time to examine the work they do, and the impact of their contributions on health care, families and society.