November is National Family Caregiver Month as recognized by Mental Health America:
“This is definitely NOT a partnership!” said the woman with tired-looking eyes when I casually referred to her and her mother as ‘care partners’ during a meeting for family caregivers of older adults. My desire to use what I thought was contemporary lingo highlighting the mutual benefits of caring relationships rang untrue to her in describing the sleepless nights, interrupted work routines, and financial concerns that have been part of the decade she has cared for her mother with Alzheimer’s disease. “There are rewards to caring for my mother,” she went on to explain “but we are not equal partners in keeping her safe and happy. I am definitely the giver, the caregiver”.
The voice of this caregiver resonates even now, three years after she adamantly corrected my language. She is, according to the Family Caregiving Alliance, one of more than 34.2 million people providing care annually to adults over the age of 50 in the United States, nearly half of whom are caring for someone with dementia. Like many of the more wealthy and industrialized nations in the world, the U.S. is experiencing the convergence of an increasing aged population and longer life chronology, leading to an average of 20 years in which people typically live with some form of chronic disease or disability. Aging and caregiving are inextricably linked in our society.
So why did I feel the need to use the term “care partners” in this group that was discussing supports for family members and friends providing frontline assistance to significant others? And why do care recipients, academics, and human service agencies at times argue for language that moves beyond the unidirectional ring of caregiver? Other English-speaking countries have adopted the term carer as opposed to caregiver in describing people who provide assistance without pay. As even my spell check reminds me, however, carer is not a term that is readily accepted in U.S. lingo. Yet it reduced to some extent the tug of war between terminology that honors the physical, emotional, and economic work being done by family and friends, and language that does not position the person who needs care into a dependent role, always positioned as the receiver.
Language is powerful. Employing terms such as care partner may serve as one tool to dislodge the typically utilitarian attitude of U.S. healthcare toward those who provide care, moving away from expectations for compliance toward opportunities for collaboration. And yet, that activist stance may not be one recognized by those to whom it is applied, particularly since the majority of people providing care don’t even refer to themselves as caregivers until they come into contact with healthcare or service organizations who assign that label. What do they call themselves?
Gordon, Benner & Noddings (1996) argued that caring for another human being is a need fundamental to human existence, and caregiving the enactment of that need. Caring, care partnering, caregiving – are all terms that indicate a relationship to another human being; those relationships, particularly in the context of eldercare, often reflect longstanding relationships that functioned under other labels. We may never land on one term that fully encompasses all that this relationship entails. For this month, however, the UNC Partnerships in Aging (PiAP) invites you to consider different perspectives on caring relationships and the contexts that support or hinder them. We continue next week with a focus on PiAP partner The Marian Cheek Jackson Center and their efforts to sustain elders in the Northside community of Chapel Hill…..another exemplar of wAGING change.
(Gordon, S., Benner, P. E., & Noddings, N. (1996). Caregiving: Readings in knowledge, practice, ethics, and politics. Philadelphia: University of Pennsylvania Press.)
2020 Womack, J.L. Professor: UNC-CH Division of Occupational Science & Occupational Therapy, Department of Allied Health Sciences