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Care for the caregiver

The prompt for this blog post involves recalling an experience of being sick and using this experience to explore the concepts of health care communication ethics. For this post, I suggest that serving as a long-term caregiver for the chronically or terminally ill is itself a chronic illness. According to the U.S. Department of Health and Human Services (2012), “caregiver stress” affects about 75% of those responsible for the long-term care of another. Symptoms include physical, emotional, and financial strain.  I’ve been in caregiver mode nearly nonstop for the last six years, including serving as a “midwife to death” for my mom after her long bout with cancer. In that time I’ve been treated for thyroid disease, adrenal exhaustion, injuries to the foot and leg, insomnia, anxiety, bruxism, and a list of other health concerns. And yet, as a caregiver, I’ve received care, and my experience receiving care as a caregiver has been one of my most powerful experiences of the elements of health care communication ethics.

Image courtesy of jesadaphorn / FreeDigitalPhotos.net.

Image courtesy of jesadaphorn / FreeDigitalPhotos.net.

In exploring this communication ethic, I’ll begin with an overview of the elements of the approach, and then illustrate with my own experience receiving care as a caregiver.

Given the variety of communication ethics we’ve considered so far, it’s not surprising to find at least one ethic that represents many ethics in one. Health care communication ethics “can contain aspects of public/private, interpersonal, organizational, intercultural and business and professional communication ethics” (Pupchek, 2014) and includes “a broad domain of health care…ranging from physical to mental to social” (Arnett, Harden-Fritz, & Bell, 2009, p. 192). This ethic “protects and promotes the good of responsive hope and the good of care for the Other in meeting moments of robust health, normal difficulties, the tragic, and the inevitable (p. 191). In this context, “health” and “care” have expanded meanings beyond their common usage in Western culture.

Image courtesy of Stuart Miles / FreeDigitalPhotos.net.

Image courtesy of Stuart Miles / FreeDigitalPhotos.net.

The “health” of health care involves “the interplay of communicative responses to conditions of mind, body, and soul, from beginning to end of a life” (Arnett et al., 2009, p. 192). Health, in this sense, is not about a so-called quality, as in “good health” or “poor health”; rather, health can (and will) include “vigor, its lack, and the inevitability of death” (p.194). The health care ethic isn’t about “fixing” illness; it is about “our response to that which needs us” (p. 195).  And that response involves care.

Image courtesy of Stuart Miles / FreeDigitalPhotos.net.

Image courtesy of Stuart Miles / FreeDigitalPhotos.net.

The “care” of health care in this context “is the communicative action or practice that links to the good of responsiveness to the Other” (Arnett et al., 2009, p. 199). Care facilitates the response of one human to another, and “offers meaning the doing of human assistance” (p. 199). Baker-Ohler (2005) uses the term “labor of care” to describe the connection of care to human identity (as cited in Arnet et al., 2009, p. 200). “Labor is a necessity;…care is a necessity of the human condition” (p. 200). Labor of care is fueled by the “why” of the individual in the health care communicative act. Each will have her own “why,” but this “why” will allow for “an ongoing labor of care—tenacious to the end, carried in the human face” (p. 208).

Image courtesy of Stuart Miles / FreeDigitalPhotos.net.

Image courtesy of Stuart Miles / FreeDigitalPhotos.net.

In my experience receiving care while giving care, the most frequent communicative response of care from others was, “What can I do to help?” My most common response was: “I don’t know.” The challenge for the caregiver and for anyone experiencing chronic illness is the need for help without having the ability to articulate that need. While I appreciated just the offer of help, a welcome expression of care, the most valuable help came from those who didn’t wait for me to figure out what I needed—they just started doing. When my mom was put in home-based hospice, two dear friends, one whose family had been through the home hospice experience with the death of her father, put together a Care Calendar and shared it with friends that they knew we had in common. They knew me well enough to know the basic circumstances of the situation, and they only asked me to provide a few pertinent details and schedule preferences. After that, they set up everything. Other friends just starting showing up with food (so much food that over a year later I still had food gifts in my freezer). My Facebook page was filled with prayers and well-wishes. I didn’t have the energy to communicate, so my friends communicated for me. Another dear friend helped me figure out how to choose a funeral home, something that I had no experience with whatsoever. She made all the phone calls and presented me with the top two choices.

Image courtesy of Stuart Miles / FreeDigitalPhotos.net.

Image courtesy of Stuart Miles / FreeDigitalPhotos.net.

What were the “whys” of my friends who engaged in a labor of care on my behalf? Some of them had been recipients of care from me personally. Others, like the friend who set up the Care Calendar, had received care in similar circumstances and were “paying it forward.” Still others were near strangers to me, and I will never know their particular “whys.” I do know, however, that I was fortunate to be surrounded by people (mostly women) with huge hearts, who sought to provide “an antidote for [my] moment of loss,” women of “tenacious hope” and tenacious spirit (Arnett et al., 2009, p. 203), who ignored my “I don’t know” and did anyway.

Image courtesy of stockimages / FreeDigitalPhotos.net.

Image courtesy of stockimages / FreeDigitalPhotos.net.

The dialogic communication ethic is based on “listening without demand,” responding to the historical moment and what shows up (Arnett et al., 2009, p. 205). In the case of my experience receiving care, those who gave care to me engaged in the dialogic principles of listening, attentiveness, and negotiation.  While it would have been far more helpful for me to be specific in listing my needs, my circle of friends listened and didn’t demand more response than I could give. They were attentive to the needs of the moment and adapted to those needs as the situation worsened. They knew that my mother was facing her “final freedom” (Frankl, 1967, as cited in Arnett et al., 2009, p. 194), and they negotiated the dialogue around hope. There were no “right” things to say or do. Just the saying and doing allowed for the emergent experience of care for me and my family, an experience that brought comfort to me and my family.

Image courtesy of Dan / FreeDigitalPhotos.net.

Image courtesy of Dan / FreeDigitalPhotos.net.

After I finished this response, I saw my neighbor standing with a big gray ball of fur in his arms, rocking back and forth in the warmth of the early evening. I recognized his beloved cat in his arms, a cat who is just shy of its 20th birthday. My neighbor told me that the cat is near death, and that he (the neighbor) has learned to give the cat IV fluids to help its passing be more gentle. The cat loved to sit on the porch in the evening, so my neighbor had brought the cat outside to enjoy one more evening. Did the cat understand this labor of care it was receiving? Probably not. But did it mean something to my neighbor as the doer of care and to me as the observer of care? Absolutely. Seeing this I was reminded of the notion of “a response of a tenacious sense of care” as a marker of what makes us human. Watching a man cradle his dying cat felt like a very human experience to me.

 

Question: Have you ever asked a caregiver what you could do to help only to hear, “I don’t know” as the answer? How did you respond? How did you extend care?

 

Arnett, R.C., Harden Fritz, J.M., & Bell, L.M. (2009). Communication Ethics Literacy: Dialogue and Difference. Los Angeles, California: SAGE Publications, Inc.

U.S. Department of Health and Human Services, Office on Women’s Health. (2012). Caregiver stress factsheet.  Retrieved from http://www.womenshealth.gov/publications/our-publications/fact-sheet/caregiver-stress.html#c

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6 Comments

  1. Dawn Parra says:

    What a great blog post, Angela. I especially enjoyed the story about your neighbor caring for their cat…yes, very human indeed.

    Thanks for sharing.

    • Thanks, Dawn. I was really struck by the scene with my neighbor as an illustration of how care is tied to human identity and that labor of care is driven by a variety of “whys.” In his case, the face of the Other wasn’t a human but was a living thing. I see this as the illustration of the idea that care is not driven solely by the need of the one receiving the care but is also motivated by the heart of the giver.

  2. leapupchek says:

    Powerful post, Angela. I appreciate the interesting turn you made in your interpretation of the prompt. You provided a compelling balance of sharing your experience and illuminating it with theory. Nice job!

    • Thanks, Dr. P. In contemplating the prompt, I realized that my greatest need for care as well as my most compelling experience receiving care was in my role as caregiver. Arnett et al. (2009) compared “conversation that helps us find our way to health again” to “a ladder, permitting us to climb one step at a time from the abyss” (p. 200). I would extend this comparison to the entire experience of caregiving–there are those on the rungs above who have received care who reach down to the ones below to extend care, and this process extends as we climb the ladder of life. That is certainly what I have experienced so far.

  3. wendiamm says:

    What an amazing way your friends helped! I used to ask people what they needed, but now “just do it”. I sincerely appreciate the acts of kindness people have shown my family and I over the years when things have been difficult, and want to show this kindness to others. The story about your neighbor’s cat made me cry because it reminded me of the days prior to my 19 year old cat dying. I did the same kinds of things he did with trying to bring comfort and happiness, and will likely do it again when the time comes for my current pets.

    Thank you for sharing the caregiver perspective!

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