The Wounded Seagull by Jules Breton || Original public domain image from Saint Louis Art Museum

"The simple act of caring is heroic."
~ Edward Albert, Caregiver to his father living with Alzheimer's Disease

I provide care to a variety of caregivers in my private practice and in my work at a regional hospital in the Piedmont. From spouses to adult children to nurses and oncologists, the level of care provided to one struggling with a serious health condition can take an existential toll on all involved.

Caregiving is an heroic act … that needs more recognition and support.

Compassion fatigue is a combination of psychological and physiological responses to the duties and responsibilities felt by caregiving professionals and non-professionals. In this blog series, I explore the emotional life of a caregiver and offer tips on how to walk the noble road alongside a loved one while maintaining one’s personal mental and physical health.

Compassion Fatigue Defined

There are over 53 million unpaid family caregivers in America taking care of a loved one. Without medical training, loved ones are being called upon to dress wounds, provide nourishment through feeding tubes, attend to a loved one’s toiletries and hygiene, manage medications, and more.

Figley (1995) defined compassion fatigue as:

exhaustion, anger and irritability, negative coping behaviours including alcohol and drug abuse, reduced ability to feel sympathy and empathy, a diminished sense of enjoyment or satisfaction with work, increased absenteeism, and an impaired ability to make decisions and care for patients and/or clients.

Originally developed to identify the psychological, behavioral, and physical experiences of a professional caregiver, it is also now used to describe the lived experience of non-professional caregivers such as spouses, adult children, siblings, and others.

“The Noblest of Human Endeavors”

That is how Aaron Blight, EdD describes the act of caregiving in his handbook, When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative (2020). Being called upon to take care of a loved one—and rising to the occasion—is a noble act requiring compassion, empathy, sympathy, love, endurance, and often a relationship where one human begins and another ends.

This symbiotic relationship can open our minds and hearts to greater self-awareness, new-found respect for life and death, and an existential questioning of all we once thought to be true. Most often the notion of stepping into a caregiver’s role is beyond the periphery of our consciousness. Until a spouse suffers a stroke, a mother is diagnosed with cancer, or a father exhibits signs of early onset dementia, we rarely focus on a possible future of innumerable hospital visits, retrofitting a home to be more accessible, or experiencing the fear of leaving a loved one alone in the home to run to the pharmacy.

The Road Not Taken

Landscape from Mors by Fridolin Johansen || Original public domain image from Statens Museum for Kunst

When it comes to a caregiver’s calling, the words of Robert Frost come to mind:

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

In becoming a caregiver for the first time, you have embarked on a road that may be unfamiliar to you. Even if you have been a caregiver to a loved one in the past, each caregiving experience is unique. You may utilize the new skills you honed, but, unless it is the same debilitating illness, new skills will likely be required.

New Roles

As you both enter into this new relationship of caregiver/care-receiver, your primary relationship (e.g., spouse/spouse; parent/child; sibling/sibling) may also change. During this transition, communication can help establish responsibilities, boundaries, expectations, and needs. In other words, communication is key.

One of the biggest challenges for the care-receiver is relinquishing tasks that she/he/they had been doing independently up until they no longer could. Asking for help can be difficult. Accepting the need for help can be even difficult.

Another big challenge for the care-receiver is accepting that her/his/their body may not be working they way it did before. When working with care-receivers, I often hear the words, “I feel my body has betrayed me.” What once were the simplest of tasks—walking to the kitchen for a glass of water, swallowing food, tracking a conversation between 2 or more people—may feel monumental. These changes can greatly impact a care-receiver’s self-confidence and mood.

Understanding how your loved one’s illness impacts their new worldview can aid you in defining your new role as caregiver.

As Blight suggests, you may suddenly find yourself juggling a multitude of tasks and roles, with balls dropping:

Each time a ball drops, you pick it up and carry on with the act. If you felt as if your life was a juggling act before caregiving, you may struggle with the realization that you’ve suddenly got even more balls in the air. You may feel like a failure and want to give up with every dropped ball, but you hesitate to express this feeling, much less to act upon it, because, after all, your loved one really needs you. Or course, your employer needs you, too. So do your friends. So do your other family members.

Defining your caregiving role is perhaps the most important task before you. Journaling is an evidence-based practice that provides you an opportunity to put on paper the thoughts, fears, self-doubts, and other—possibly unwelcome emotions—such as anger and regret.

The Benefits of Journaling

I encourage many of my clients to keep a journal due to its wonderful mental health benefits:

Reduces stress (serves as a holding space for all the things you are trying to juggle)
Manages anxiety (e.g., reduces those ruminating thoughts at 3:30 am)
Manages depressive symptoms (expressing one’s feelings can foster self-reflection and validation)
Sets priorities, establishes goals, tracks progress (boosts self-efficacy and self-confidence)
Recognizes negative patterns of thinking and allows one to reframe life situations.

While there are no rules to journaling, there are different types of journaling that can be helpful:

Stream of Consciousness: Set a timer for 5 minutes. Imagine your thoughts are fluid like a stream, and your thoughts are like fall leaves falling onto the stream and floating toward you. Write freely whatever comes to mind with no intention of editing for grammar, spelling, punctuation.

Bullet List: Pour a warm beverage, open our journal or laptop and begin to develop a bulleted list of all the things that make you a kind and compassionate caregiver. Another day, you may write a bulleted list of all the juggling roles you are maintaining. And another day, you may jot down a bulleted list of all the things that you have learned about yourself in your new role as caregiver.

Gratitude Journal: Take five minutes each day to note what you are grateful for. It can be the smallest of things, such as “I am grateful for the chipmunk that visited me on my porch this morning” to “I am grateful I was able to take a walk.”

Letter Journal: Write supportive letters to yourself from the voices of others who have been your champions in life. This may include a parent, a teacher, a coach, a neighbor, a spiritual leader, or even your loved one.

Writing Prompts: Consider writing in response to these questions: 1) How have our roles changed since we embarked on this new path? 2) What steps can I take to ensure I do not lose myself in my caregiving role? 3) Who needs to know about my new role, and how shall I explain it to them?

The internet is a treasure trove for journal writing prompts! Here is one website that offers good prompts for caregivers.

Providing Counseling to Helpers & Healers

Whether you are a physical or mental health provider having survived the impacts of COVID-19 on our healthcare system or one of the millions of unpaid family caregivers in America taking care of a loved one, I am here to support your well-being, validate your emotional exhaustion, and provide evidence-based techniques to reduce distress, burnout, and compassion fatigue in a confidential setting. Learn more about my work with helpers and healers here.

Lisa A. Rainwater, PhD, MA (couns), LCMHC, CCMHC, CGP, CT is the owner of Rainwater Counseling in Winston-Salem, North Carolina, where she provides depth psychotherapy and relational attachment and grief counseling to individuals and couples. She earned a master’s in German Studies from the University of Oregon; a master’s in Counseling from Wake Forest University; and a doctorate in German and Scandinavian Studies from the University of Wisconsin-Madison. Lisa is a Certified Thanatologist through the Association of Death Education and Counseling and is seeking certification in Grief Therapy as Meaning Reconstruction at the Portland Institute for Loss and Transition. She is currently enrolled in a year-long program, Jungian and Post-Jungian Clinical Concepts, at the Centre of Applied Jungian Studies.

Notes

Cocker, F., & Joss, N. (2016). Compassion Fatigue among Healthcare, Emergency and Community Service Workers: A Systematic Review. International journal of environmental research and public health, 13(6), 618. https://doi.org/10.3390/ijerph13060618

Entering the Role of Caregiver, Lightly