THE HIGH COST OF CARING:
Family Caregiver Compassion Fatigue
“What are we doing here? I want to go home,” insisted my 95 year-old father-in-law, Jack.
“We are home, Daddy,” replied Jack’s daughter, Rachel.
“This is where we live.”
Jack has lived with his children almost five years. For two of those years Rachel was also caregiver for her mom, Ann who was convinced she was being held hostage. She too, desperately longed to go home.
“Will these people let us sleep in their house tonight?” Jack continued as Rachel began the task of helping her dad out of the van.
“Yes, Daddy, they will let us sleep here tonight. This is my house.” Jack continued to protest as he shuffled up the walkway with the aid of his walker.
As Rachel led Jack into his bedroom, she asked “Daddy, are these your clothes in the closet? Look, there’s Mama’s picture on the dresser.” “Oh yeah, I guess this is my room. I guess I can sleep here tonight,” Jack acquiesced.
“Okay, Daddy, let’s get that pull-up changed and get you into bed.”
“No, I don’t need to change my pull-up. It’s just a little wet,” argued Jack.
“No, Daddy, you can’t sleep in wet clothes.”
“Well, okay but put that wet one over on the dresser. It will dry so I can wear it in the morning.” The ever frugal Jack was a child of the Great Depression.
Rachel finally got her father in bed, put his C-Pap mask on his face, adjusted the covers and with a sigh and then turned off the light. “Good night, Rachel, I love you,” was his nightly bedtime benediction.
Rachel then went to the bedroom next door to repeat this scenario once again. You see, she also has a special needs son, Andrew, who is 22 years-old and is unable to talk, walk and is dependent for all of his needs. His parents bathe, change, feed and love him 24/7.
My brother and sister-in-law pastor a church and manage a local Christian radio station. The demographic of their South Florida church is mainly retirees who often need caregiving during their hospitalizations and rehab activities. Rachel and Jonathan do funerals: lots of them.
Just as my family has found themselves in difficult caregiver roles, they join over 90 million family caregivers in the United States. Over the past 5 years these caregivers have provided 37 billion hours of unpaid care. As baby boomers are aging, there are 10,000 Americans who are turning 65 every day. For the first time in US history, there are more than 50 million seniors.*
So, how does the family caregiver cope with the non-stop demands of caring for a dependent adult? What are some common signs of compassion fatigue and burnout?
COMMON SIGNS OF COMPASSION FATIGUE
Feeling irritable, depressed, isolated and without hope
Changes in health of caregiver. Neglect of health and wellness.
Emotional and physical exhaustion. Sleep deprivation.
Excessive use of alcohol or drugs.
Difficulty juggling a career and caregiving.
Jack has been recently enrolled in an adult day care program near his daughter’s home. He attends the program three days per week, giving his children 21 hours of respite care. Jack is also a hospice patient and has enjoyed going to respite care in a nearby nursing facility. He doesn’t like to bathe but is more cooperative with his hospice CNA than with family. Rachel and Jonathan were recently able to take a two-week vacation because of respite services and family assistance. Rachel now has found some relief and is deeply grateful for local support.
SELF CARE SUGGESTIONS FOR CAREGIVERS
Applaud your own efforts. You ARE a good caregiver.
Carve out “ME time”. Take a long bath.
Utilize local senior programs.
Join a support group.
Focus on your own health and well-being.
On an airplane, instructions are given that in the event of a sudden loss of cabin pressure, an oxygen mask will descend in front of you. The first rule is to put your mask on, then assist anyone who may need your help. Caregivers need to implement self-care in the midst of the demands of providing care for another. When your needs are taken care of, the person for whom you care will also benefit.
*AGING IN PLACE, “Caregiver Burnout,” June 2019
*THE STATE OF CAREGIVING, Angela Stringfellow, 2018
Local resources include Leeza’s Care Connection, 201 St Andrews Rd, Columbia, S.C. 803.888.7525
BIO: Carol Rinehart has finally found what she wants to be when she grows up! She is passionate about working with families who are struggling with the terminal illnesses of their loved ones. Carol recently presented a workshop at the Carolinas Center for Hospice and Palliative Care Caring Conference on professional caregiver fatigue. Carol is a volunteer at Lexington Medical Center as an Associate Chaplain. She has been married to the love of her life, David for 43 years, has a Heidi and Tyler and a grand-dog, Sadie. Carol is a Hospice Chaplain and Bereavement Coordinator for PruittHealth Hospice located in Columbia, S.C.