By Amy Levine

Caregiving, according to a doctor and leader of support services at a large US-based hospital, is “like being prepared for the fire drill at all times. You never know when you’ll have to drop everything, gear up, and GO” (Joelle Vlahakis). The constant sense of emergency or what I previously termed the banality of crisis is something that I theorized in my research with civil movement organizations in South Korea (Levine 2016) and in a blog post about my experiences as the parent of a child with type 1 diabetes, commonly abbreviated to T1D (https://www.thesociologicalreview.com/blog/a-partial-night-in-the-life-of-a-t1d-parent.html). With this new project, I am particularly interested in the language—the analogies, similes, metaphors, and jokes—people use to talk about caregiving. When language is effective it not only captures reality, but also incites pleasure and enables a larger audience to empathize with the specificities of each caregiving experience as well as the broader category of caregiving.

Hélène Mialet is doing some fascinating research on how people with Type 1 diabetes are constituted through the care of others. She is currently re-approaching the concept of the “distributed centred subject” (Mialet 2012) with care of those with type 1 diabetes in mind. Annemarie Mol’s (2008, 2010) redirected focus away from patient choice and toward the pragmatics of “tinkering” in diabetes care is also central to my focus. This work will no doubt inform my own greatly.

The aforementioned American doctor went on to say she presents caregiving in her work as “threading a needle while bike riding…while also speeding downhill in traffic.” A T1D parent likened care to “balancing scales in the middle of a hail storm” (Leslie Lewis). Another T1D mom described it as “walking an intoxicated adult through a glass store in high heels on a wet floor” (Jolene Montgomery). Still another T1D parent wrote to me that care is like “trying to help my kid ride a bike, no training wheels, in traffic, in the rain, blindfolded, running along side him trying to keep him from falling, from crashing, from all the other dangers, 24 hours a day… not being able to keep him from crashing or getting lost, but bandaging his wounds and getting him back up on the bike every time… all the while being judged by parents whose kids have training wheels and no blindfolds” (Karen Elizabeth).

A friend in Canada shared some of the helpful insights she has gotten while caring for her partner with Alzheimer’s disease. According to the handout “Grief in Dementia Caregiving” from the Alzheimer Society of British Columbia, the family caregiver is also the “caregriever” who experiences the “death by a thousand subtractions” as David Shenk described it in his 2001 book, The Forgetting. The same handout disaggregates the “grief soup” of caregiving into, for example, 1) ambiguous grief, which is grieving for the psychological changes related to dementia or the “goodbye without leaving,” 2) chronic sorrow or non-finite grief, which is the constant living loss, 3) anticipatory grief, which is the present reaction to losses that will occur in the future, 4) disenfranchised grief, which is grief that is not socially-validated or publicly acknowledged, and 5) grief for personal losses, which are the activities, relationships, and things that the caregiver has sacrificed in order to give care to a loved one.

The caregiver is advised to respond to this “grief soup” with “grief work,” which is defined as “the intellectual, emotional, physical and spiritual adaptation that is required following any substantial loss or change.” Such work is doing whatever “lets a little bit of air out of your grief balloon at a time” and this is best accomplished by “zigzagging” between restoration, self care, and distraction activities. Restoration activity is meditation, yoga, and art. Self care is nutrition, exercise, and hydration. Finally, distraction is babysitting, volunteering, and doing chores.

As larger numbers of people live longer and with various mental and physical ailments, caregivers—particularly those with mostly inchoate expertise and various citizenship and professional arrangements—will continue to grow in importance. Caregivers are increasingly necessary not only for families, but also for health care professionals, governmental, semi-governmental as well as non-governmental agencies and insurance companies. At the same time, there is little social or legal clarity about their identity and they are mostly invisible on electronic medical records. The caregiver role is often distinct from power of attorney and their expertise is often questioned by various parties, especially health care professionals. Yet they are often called on to do various kinds of caretaking that require high levels of affective, mental, and physical labor. Even as much about their professional identity is undefined, there are many gender dimensions to their identity operating inside families and networks for health care professionals. According to a 2009 report, 65.7 million Americans have served as unpaid caregivers to an adult and/or child. These caregivers are predominantly women with an average age of 48. Care lasts an average of 4.6 years while one-third of people said they provide care for more than 5 years. In addition, one-third of caregivers take care of more than one person.

At the same time, many family caregivers refuse to put their health first, need training, and require family leave and/or specific financial and time considerations. Family caregivers are squarely “pink-collar” with the variety of labor these jobs often entail with correspondingly less monetary renumeration and less acknowledged expertise. Yet as team-centered care emerges as the preferred approach to manage people with multiple conditions, it is increasingly urgent as well as fraught for caregivers to become part of such an expert team. These are some of the dimensions that I will address in my comparative research of family caregivers between Canada and the US.

References

Caregiving in the US: 2009 Executive Summary. National Alliance for Caregiving in Collaboration with the AARP. November 2009. MetLife Foundation.

Grief in Dementia Caregiving. Alzheimer Society British Columbia. March 2016.

Levine, Amy. 2016. South Korean Civil Movement Organisations: Hope, Crisis, and Pragmatism in Democratic Transition. Manchester: Manchester University Press.

Mialet, Hélène. 2012. Hawking Incorporated: Stephen Hawking and the Anthropology of the Knowing Subject. Chicago: University of Chicago Press.

Mol, Annemarie. 2008. The Logic of Care: Health and the Problem of Patient Choice. New York: Routledge.

Mol, Annemarie, Ingunn Moser, and Jeannette Pols, eds. 2010. Care in Practice: On Tinkering in Clinics, Homes and Farms. New York: Columbia University Press.

Photo: Lee Wells/Getty Images (https://www.everydayhealth.com/columns/lynda-shrager-the-organized-caregiver/unpaid-caregivers-need-care-too/)