A Conversation with Janet Cromer on Compassion Fatigue, Stress Resilience, and the New Normal for Family Caregivers
Brain Injury Blog
A Conversation with Janet Cromer
by Barbara Stahura
How did you learn about compassion fatigue? Was it after your husband, Alan, suffered an anoxic brain injury and you became his caregiver?
I had known about compassion fatigue for 25 years before that, as a medical and psychiatric RN. I ran programs to help medical professionals deal with stress. My interest in it goes back to the 1970s, when I trained with Dr. Herbert Benson (author of The Relaxation Response) when information about mind-body medicine began coming out. I also worked with a cancer program for people with cancer and their family caregivers.
When I became Alan’s caregiver, all this knowledge helped, but it didn’t prevent my having compassion fatigue. There is so much trauma for the caregiver. Like trying to have a relationship with a person with a very changed personality, or 24-hour caring for someone who can’t keep himself safe, or where the caregiver gets the brunt of the anger of the person with the brain injury. I did meditation and yoga and saw a therapist occasionally. Alan’s brain injury wasn’t stable, and he also developed dementia and Parkinson’s Disease.
Why did you decide to share what you had learned by writing tip cards for Lash and Associates and facilitating workshops about compassion fatigue?
Compassion fatigue took on a different tone for me after I’d been through it. I co-founded and helped facilitate a large support group for people with brain injury and family caregivers, and I heard just how burned-out and exhausted and depleted the caregivers felt. And how they felt guilty for not being able to always be patient or understanding.
I also belonged to a national group for family caregivers called Wellspouse and found out that caregivers were experiencing hypervigilance and anxiety even months or years after their spouses had died. They were having a post-traumatic reaction that wasn’t being recognized by their doctors. I wanted to raise awareness in the medical community and help prevent compassion fatigue. We do a great service for families if early on we can teach them how to reduce the stress response and evoke the relaxation response as a foundation.
So many family caregivers struggle in isolation, often for a long time, and they experience all kinds of terrible stress. Would you talk about that?
There are lots of risk factors and stressors. “Living loss” is one of the biggest ones. Also called ambiguous loss, it’s a complicated grieving process that happens when a person is still physically a part of the family but is very changed emotionally or cognitively. There are losses of the mutuality in the relationship, and the person with the brain injury might not know the caregiver as an individual any more. Relationships change.
Another stressor is the complex medical care that many family caregivers are now expected to provide at home. This can include giving IV fluids, dressings, respirators, suctioning, and feeding tubes. You’re in over your head, and what do you do if there’s a problem and no one else is around?
Personal safety is another risk. Sometimes a person with a brain injury is violent or verbally abusive. Caregivers are ashamed to talk about it or report it, so keeping it hidden makes it even more stressful. Or perhaps the survivor can’t take the responsibility for rehabilitation or refuses to do therapy, that’s another stress.
And there are what I call “triple-duty caregivers,” who are caring for young children and also have an older child or a spouse with a brain injury, and oh by the way, Mom has dementia so we brought her to live with us. For someone who has their own history of trauma or abuse, that can get stirred up again while caring for another traumatized person. There are lots of big risks for compassion fatigue in all these situations.
What is compassion fatigue?
It’s a form of complete exhaustion that affects the body, mind, and spirit. It results from caring for someone going through severe trauma or illness. It’s a cumulative process, building up over time. It’s beyond burnout, which comes from doing a tough job without enough resources. Compassion fatigue includes burnout along with the responsibility to the relationship you have with the other person. It’s a relational condition and is a result of prolonged exposure to having to be empathic to someone else’s trauma or suffering.
We need to diagnose it in ourselves and admit that something isn’t right. It affects us emotionally, physically, cognitively. Physically, it shows up as hypervigilance, always being alert, perhaps bad dreams about the first time you saw your family member in the ICU or the accident. Headaches and stomach troubles are common. It can also lead to high blood pressure.
There are emotional signals, too. Often humor gets us through a lot. Caregivers might notice they’re losing their sense of humor and becoming more cynical. There’s a feeling that no matter what you do, it’s not enough. People can feel numb and withdrawn, which they think is better than feeling anything. And compassion fatigue affects how we think. There can be trouble focusing or concentrating. So we can’t remember important things, and it gets harder to solve problems. It feels like our brain is totally overloaded.
It affects our behavior too. We’re not as patient or can be sarcastic or mean. The most dangerous symptom is secret behaviors, like drinking, smoking, or eating too much. These work for a little while but lead to problems of their own.
Resilience plays a huge role in how well caregivers fare. What is resilience?
Resilience combines parts of your personality and life experiences with learning new skills to better handle situations and to thrive. If you’re resilient, you can manage stress and change and find a new direction.
How can caregivers and survivors become resilient even if they weren’t before?
First, acknowledge and grieve losses. Remember that the attitude we build and the ways we look at ourselves and our situation can strengthen or weaken us. So one way to become more resilient is to get to know the person you are now, and to take very good care of your body in basic ways. Use deep breathing for relaxation and reversing stress. Explore your feelings with someone you trust. Engage your creativity. This may take a new form, something you haven’t done before, like a new hobby. Or take a class, and try to bring a beginner’s mind to it and have fun. Be very curious about yourself, other people, and the world so that you can reach out and become the best you can be. Make new friendships. Go to a new place. Try a new food. Begin to journal. Enjoy life.
After a brain injury, a family eventually settles into their new normal. How can caregivers adjust for the long haul?
Start by laying down a foundation for your own health and well-being—and believing that you deserve it. Many caregivers have told me that, after a while, others assign them worth only as a caregiver. Even their doctor says, “You must care for yourself so you can care for your husband.” Believe that your worth as an individual human being comes first.
Form a supportive circle of people who understand and encourage one another to pursue their own goals and dreams. Connect in person or online. Be open to new possibilities, and build a positive outlook. Face problems head-on. Facilitate family members growing into new roles. Replenish hope, strength, and joy.
About the author
Her award-winning book, Professor Cromer Learns to Read, is the story of caring for her husband, Alan. She also writes a blog for Psychology Today, and has written a blog and tip cards for Lash & Associates:
December 19, 2012