Compassion FatigueThe Consequences of Caring,and Caring for the Caregiver

Presented by

Larry Moody, P.E., BSCE (retired)

Don’t get hung up on the words

Burnout, vicarious suffering, compassion fatigue and various other terms have all been used to describe fundamentally the same phenomenon.

There are no adequate definitions to distinguish the arguably fine points to differentiate between any of them.

My goals for you today are…• To help you understand the signs and

symptoms of Compassion Fatigue (“CF”).

• To help you learn some of the things you can do to intervene on your own behalf.

• To help you to become aware of the behaviors to avoid that are counterproductive for you, the individuals you care for, and your broader relationships.

Raising a child or living with a spouse with an Autism Spectrum Disorder (“ASD”) can be an incredibly rewarding experience.

But it is also an equally incredibly challenging, often difficult and frustrating experience.

You have an opportunity to make an enormous difference in his or her life.

If… If you can learn to cope and care for yourself.

What I’ll talk about may at times seem selfish, but it truly is in everyone’s best interests in the long run, and it’s the long run that really matters.

EmpathyEmpathy is often described as an intellectual identification with or

vicariously experiencing the feelings, thoughts, or attitudes of

another person.

CompassionCompassion, however, is better

thought of as empathy along with feelings of love, hope and caring for another person, including a desire to

alleviate their struggles.

Compassion

Compassion can provide those we care about with a sense that they are not facing the world alone.

But when our compassion is stretched too thinly, we may become limited in how we are able to care for others, and ultimately, how we care, or fail to care, for ourselves.

The History of CFIn 1992, Carla Johnson introduced the term

“compassion fatigue” to the medical community. She used it to describe a specific type of burnout experienced by nurses working in an emergency department.

Jeanne Maiden further defined CF as “a state of emotional, physical, social and spiritual exhaustion leaving the individual fatigued, overwhelmed, helpless and hopeless about ones situation or life, causing a pervasive decline in the person’s desire, ability and energy to feel and care for others.”

Compassion FatigueCaring for one or more persons with an

ASD can significantly impact those who provide the care.

My definition of compassion fatigue is: “A deep awareness of the perceived suffering of another, coupled with the unrelenting and unrequited desire to relieve it.” …

…The feeling of being lost on a never-ending journey with someone you care for and about.

Signs and Symptoms

Think of CF as another spectrum disorder with signs and symptoms that may, or may not, be presenting in any specific individual…

• Trouble concentrating, confusion• Headaches, body aches• Lower quality of care-

giving, loss of hope• Lower quality of self-

care, loss of hope

• Weight loss or gain• Deteriorating relationships

both at work and at home• Neglecting responsibilities• Unwarranted

sarcasm• Cynicism

Signs and Symptoms (continued)

• Anger, overly critical• Lower sense of personal

accomplishments• Resentment• Difficulty sleeping• Nightmares• Lack of energy• Cutting back on your

own leisure activities

• Feeling tired & run down• Increased alcohol intake

or substance abuse• Withdrawal from family

or friends• Diminished quality

and/or quantity of work• Desire to quit• Depression, despair

If you want to take the best possible care of your charge with an ASD, you must first take the best possible care of yourself, or you may find yourself and your other relationships in such a downward spiral that it can be difficult to recover from. However, it’s never to late to improve!

Self-Care Interventions• Establish boundaries with others.• Communicate with family and friends, expressing your

needs. • Recognize your triggers.• Learn to say “No!”• Spread the load, become your

charge’s CEO.• Take some time off from caregiving to enjoy your hobbies

and personal interests.• Exercise, yoga, meditation.• Honor yourself and what you do for others.• Nurture what counts in your life.

Self-Care Interventions (continued)

• Do something nice for yourself when you get up in the morning… Listen to your favorite music while you get dressed Think of the fun things you’ll do together today Pick one thing you love to do and put it somewhere on

your schedule for today• Make a list of what you are grateful for.• Understand that what you do, or don’t do, may be

painful for you, and don’t blame yourself for having emotional reactions.

• Take a shower and either sing or cry… Let it out!

Behaviors to Avoid Don’t ignore the problems. Don’t blame yourself, others or the system. Don’t complain to colleagues or co-workers. Don’t make any significant life changes. (…Big “D”) Don’t eliminate your time spent with friends or

reduce time with other family members… In other words: Don’t neglect your relationships!

Behaviors to Avoid (continued)

Don’t look to increase your work load away from home, nor should you work more hours.

Don’t self-medicate. (alcohol or illegal drugs) Eliminate self-deprecating statements. Even though it is your charge who has the

diagnosis, it is important to acknowledge that autism affects the whole family.

When change is needed, motivation is key…

Now it’s time for some…