Suddenly, my care partner support groups are devoting a lot of conversation to “compassion fatigue.”
Compassion Fatigue is the care partner’s Post Traumatic Stress Disorder; the response to overwhelming stress caused by the difficulty of a task, especially when we are cut off from resources and respite, as we have been during this time of COVID.
Compassion fatigue is characterized by physical and emotional exhaustion, feelings of inadequacy, self-contempt, weight loss or gain, headaches, a reduced ability to concentrate, and even the loss of empathy for the loved ones who require our care.
The phenomenon was first recognized among medical workers in Vietnam, and the term “compassion fatigue” was coined in 1992 by Carla Joinson who observed and wrote about compassion fatigue and nurses’ experience with it.
But unlike battle fatigue, compassion fatigue can bring a unique burden of guilt and self-loathing. “How can I become fed-up with caring for someone I love? There must be something wrong with me; something lacking in my basic moral character or sense of humanity!” Asking ourselves these questions, we plunge ourselves into a downward negative spiral taking us to a place where we are no use to ourselves or the loved ones we are caring for.
The first step in dealing with compassion fatigue is to understand it and recognize when and why it appears. No, you are not a bad person. You are experiencing a predictable, common, and well documented phenomenon. What you are feeling may be frightening and awful, but it is normal. Be kind to yourself.
Do not conclude, “I must not be caring enough. I’ll just have to try harder and do more of what I’m doing.” To the contrary, it is time for a break from what you’ve been doing. Again and again, your support group has talked about the things you need to do to take care of yourself. Now is the time to stop just talking about those things, and start doing them. Ask for some help. This is necessary to your survival.
Find support that can help you get away from your task and your person for a while. You may need more than just an hour here and there, but some days away from being a care partner.
Write a journal about yourself and your feelings. Writing your thoughts and feelings can improve your perspective, help you realize how hard you’ve worked, and justify what you are feeling. Exercise. Adopt a healthier diet. Document your self-care behaviors in your journal. Get a lot of rest. Do not self-medicate.
There is a lot of information about compassion fatigue on the internet. Let me suggest https://www.aafp.org/fpm/2000/0400/p39.html.
You are not alone. I doubt that I know many care partners who are NOT experiencing compassion fatigue to some extent during this difficult time in our lives. The important thing is to prevent progress into a danger zone!
Until next time remember: “We all deserve the Best”
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Dear awesome Debbie and Ed,
I went to your workshop yesterday and was so enlightened. As a nurse of 25 years I am a testament to not having received any training, besides medicinal, for the treatment of dementia. My mother who is in very early stages of Dementia (I think) has changed considerably and I have been living with her. It is all so confusing and heartbreaking. I already need times of respite as living in an “altered reality” does a number on one’s patience and compassion. My mother just bought one of those robo kitties you were showing us yesterday and loves it! Although she is certinly a long way away from what you were describing yesterday I see the early manifestations of many symptoms you described and I am so thankful for your support and knowledge. Renstar Medical Research (that you recommended) is also a group of compassion and knowledgeable people. I pray for you and the organization as you continue to educate the public and caregivers in this most important compassion care partnering. Grateful!
Wendy, Thank you. Just keep learning and finding new tools to help in this journey of dementia. Keep in touch.