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Huntington’s Disease: Care Partner’s Guide Compassion Fatigue

What is compassion fatigue?

“ As witnesses and healers, we cannot help taking on the emotional pain of those we are privileged to know and care for. We collect bits and pieces of their trauma by exposure to their lives.

We have pictures in our minds and intense feelings in our bodies at the end of the day. Those who are strongly empathetic may be most at risk. We feel for those who are hurt by life’s events: challenges, life threatening illness, impending death, sudden/traumatic death, and bereavement.

We do not just witness in the abstract, it is personal. We actually experience the pain vicariously. Consequently, it affects us psychologically.

Hence, we are at risk of compassion fatigue.”  

– Sherry E. Showalter, PhD, LCSW, BCD

Compassion fatigue is a form of secondary traumatic stress associated with caregiving/care-partner roles. It is a combination of physical, emotional, and spiritual exhaustion resulting from repetitive, empathic responses to the suffering of others.  Compassion fatigue is commonly experienced by nurses, physicians, and other healthcare professionals. However, family members taking on a care-partner role may also develop this condition.

Why does compassion fatigue matter?

Compassion fatigue matters for the millions of caregivers, care partners, family members, health care professionals, and emergency service workers who provide constant, empathetic care to those affected by illness, trauma, loss, and impending death. The symptoms of compassion fatigue have the potential to disrupt and devastate families, careers, and lives. Research has shown that the symptoms of compassion fatigue are very responsive to treatment once recognized and actively addressed. With targeted intervention, those with compassion fatigue can experience profound transformations and personal empowerment. This allows individuals to improve their care for others while finding positive balance in their own lives.

How does compassion fatigue develop?

Figure 1: Compassion Fatigue Process (Retrieved from https://openi.nlm.nih.gov/detailedresult.php?img=PMC3170786_NRP2011-408024.001&req=4)

 

Compassion fatigue is caused by repeated empathic connection to people who are suffering intense pain or adversity. Over a long period of exposure, care partners will closely identify with the patient/family member/person they are caring for  and ultimately come to absorb the suffering of those they care for. Figley (2002) proposed a model to describe how compassion fatigue develops:

  • Compassion fatigue results from a combination of:
    • Compassion stress
    • Extended exposure to suffering
    • A sense of responsibility for the care of the individual who is suffering
    • Traumatic memories
    • Associated reactions, such as depression and anxiety

What are the symptoms?

Physical:

  • Headaches
  • Digestive problems: diarrhea, constipation, upset stomach
  • Muscle tension
  • Sleep disturbances: inability to sleep, insomnia, too much sleep, nightmares
  • Fatigue
  • Cardiac symptoms: chest pain/pressure, palpitations, tachycardia

Emotional:

  • Sadness and grief
  • Mood swings
  • Restlessness
  • Irritability
  • Oversensitivity
  • Anxiety
  • Excessive use of substances: nicotine, alcohol, illicit drugs
  • Depression
  • Anger and resentment
  • Loss of objectivity
  • Memory issues
  • Poor concentration, focus, and judgment
  • Decreased intimacy
  • Detachment

Work-related:

  • Avoidance or dread of working with certain patients
  • Reduced ability to feel empathy towards patients or families
  • Frequent use of sick days
  • Lack of joyfulness

What is the difference between compassion fatigue and burnout?

Many studies refer to “family burnout” when describing interpersonal relationships such as family caregiving. However, there is an important distinction between compassion fatigue and burnout. Burnout is physical or mental exhaustion caused by stress, a more general term that does not include the elements of empathy that define compassion fatigue. While burnout is cumulative and tends to follow a predictable course, compassion fatigue can be more complex, as it results from intense, extended empathic care for people experiencing pain or suffering. Burnout can be experienced in all professions, whereas only individuals in caregiving/care-partner positions experience compassion fatigue.

What research has been conducted on compassion fatigue experienced by family caregivers?  

The majority of literature on compassion fatigue is centered around nurses, physicians, and healthcare professionals. However, more research is emerging on family caregivers who experience this condition. Perry, Dalton, and Edwards (2010) from Athabasca University published a study suggesting that compassion fatigue among family care partners  may parallel the conditions experienced by professional caregivers. Their study focused on five family caregivers in long term care in Canada. The researchers discovered that caregivers were unable to disengage from their caregiver role to  find balance and rest when needed, no matter how difficult it was or how high the cost.

They found two themes that emerged among the family care partners: role engulfment and enveloping sadness.

  • Role engulfment

For many family members, the care partner role appeared to engulf their lives. One participant stated: “I think maybe I am here too much. I have no other parts to my life.”

Some participants worried about their family member/loved one   almost continually. Caregiving had an overwhelming effect on the social aspect of their lives. Some struggled to maintain other relationships while fulfilling caregiving responsibilities. One participant spoke about the conflicts between assisting with care and social relationships: “Now I do what I can for her but I feel torn between my other responsibilities and her. I don’t feel like I am doing a great job of anything. I don’t feel like I have a social life at all.”

The physical health of the family care partners was also affected. Many neglected self-care, and participants noted a decline in their own physical health as a result of the intensity of their care partner role.

The study revealed that participants were seemed engulfed by their commitment and responsibility to ensure quality care for their loved ones.

  • Enveloping sadness

Participants of the study also expressed a sense of loss, and some described the loss in terms of losing their relative as the person they once were. One participant, whose mother had progressive dementia, described: “I have lost my mom, who was more than a mom to me – she was a really good friend. Now she doesn’t even know who I am.” Another participant cried as she spoke: “I really wish I could have my old husband back. Even though we had our spats it was still better than this.”

Sadness close to despair accompanied these expressions of loss. Several participants reported feeling sad and crying in response to their care partner experiences. Several expressed sadness caused by perceptions that their relative may be suffering due to unmet care needs.

When participants of the study lost hope for a better future for their relative or themselves, their sadness was magnified. One participant noted: “It is the same everyday – nothing changes in my life. I see what I have to look forward to for the next years and I don’t see much hope of anything good happening.”

Researchers of this study described how this sense of loss and hopelessness appeared to have created an enveloping sadness and a heavy heart in family members.

How is compassion fatigue treated? 

Compassion fatigue can be prevented or effectively addressed in family caregivers.

The first step for intervention is to seek available resources. Supportive counseling is key, and it can be helpful to find someone to speak to who understands compassion fatigue and is a good listener. A professional counselor or therapist can be an invaluable resource, as they can listen without making judgments, while offering informed solutions to overcome this condition.

Developing positive self-care strategies and healthy rituals is crucial for a care partner’s well being. Healthy rituals are activities performed on a regular basis that replenish personal energy levels and enhance feelings of well being.

As caregivers tend to the needs of others, they often neglect their own needs. It is important to identify strategies that promote physical, emotional, and spiritual well being. This includes adequate rest, nutrition, hydration, sleep, and exercise. Overcoming compassion fatigue requires genuine self-reflection and attention to the issue.  

As published by Dr. Sherry E. Showalter, a Certified Traumatologist and Compassion Fatigue Specialist, below is a compassion fatigue “Do List” and “Do Not List”:

This is a CF “Do List”:

  • Spend some quiet time: learning mindfulness is an excellent way to connect with you and achieve inner balance. Be still.
  • Recharge, renew daily: a regular exercise program, a walk, prayer, meditation, committing to eat better, and feed your spirit and soul.
  • Have one meaningful conversation each day: time with family, friends, or a spiritual advisor.
  • Understand that your pain is normal, the work you do is intense.
  • Get enough, restful sleep.
  • Develop and nurture interests outside of your work arena.
  • Take some time off (yes I dared to say it).
  • Identify what is really important to you. Take one thing at a time.
  • Laugh out loud.
  • Follow a familiar routine.
  • Maintain a healthy, regular diet.
  • Create a safe place to escape into your imagination.
  • Expect to be upset by upsetting events.
  • Find a good therapist.
  • Honor yourself.

And now for the “Do Not List”:

  • Blame others.
  • Ignore the problem.
  • Look for a new job, buy a new car, get a divorce, have an affair.
  • Complain to coworkers.
  • Hire a lawyer.
  • Work harder and longer.
  • Self-medicate.
  • Neglect your own needs, interests, and desires.
  • Reduce leisure activities.
  • Have unrealistic expectations.
  • Look for easy answers.

What are some resources available to family caregivers?

National Family Caregiving Association (NFCA) – A non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

10400 Connecticut Avenue Suite 500

Kensington, MD 20985

202-454-3970

Website: www.thefamilycaregiver.org

E-mail:  info@caregiveraction.org

 

National Alliance for Caregiving A non-profit coalition of national organizations focused on improving the lives of family caregivers

4720 Montgomery Lane, Suite 205

Bethesda, MD 20814

(301) 718-8444

Website: http://www.caregiving.org/

E-mail: info@caregiving.org

 

Rosalynn Carter Institute for Caregiving – An institute focused on helping caregivers coping with chronic illness and disability across the lifespan

Georgia Southwestern State University

800 GSW State University Dr.

Americus, Georgia 31709

(229) 928-1234

Website: www.rosalynncarter.org

 

Further Reading on Compassion Fatigue:  

http://www.compassionfatigue.org/index.html

http://www.aafp.org/fpm/2000/0400/p39.html

https://www.stress.org/military/for-practitionersleaders/compassion-fatigue/

http://journals.sagepub.com/doi/pdf/10.1177/1049909109354096

 

Works Cited:

http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-16-2011/No1-Jan-2011/Compassion-Fatigue-A-Nurses-Primer.html

http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-16-2011/No1-Jan-2011/Compassion-Fatigue-and-Double-Duty-Caregiving.html

Day JR, Anderson RA, Davis LL. Compassion Fatigue in Adult Daughter Caregivers of a Parent with Dementia. Issues in mental health nursing. 2014;35(10):796-804. doi:10.3109/01612840.2014.917133.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4683933/  

Figley, C.R. (2002). Compassion fatigue as secondary traumatic stress disorder: An overview. In C.R. Figley (Ed.). Compassion fatigue: Coping with secondary traumatic stress disorder in those who treat the traumatized (pp. 1-20). New York, NY: Brunner-Mazel.

Perry, B., Dalton, J.E., & Edwards, M. (2010). Family caregivers’ compassion fatigue in long-term facilities. Nursing Older People, 22(4), 26-31.

Showalter SE. Compassion Fatigue: What Is It? Why Does It Matter? Recognizing the Symptoms, Acknowledging the Impact, Developing the Tools to Prevent Compassion Fatigue, and Strengthen the Professional Already Suffering From the Effects. American Journal of Hospice and Palliative Medicine. 2010;27(4):239-242. doi:10.1177/1049909109354096.