My friend Jolene Philo is a seasoned caregiver. She’s my “go-to” friend when I feel like I can’t go on. Jolene is writing a book focused on helping caregivers live more fully and abundantly while juggling their many demands. To cover the topic well she put together a very short questionnaire, and the response was enormous. So much so that I asked Jolene if I could share it with you. Our desire is to provide exactly what you need, and the only way to know is to ask. Today you will find a link that directs you to Jolene’s questionnaire. Would you please take a few moments to help us learn about your needs? We are reading every response carefully and putting together a work that will be life-changing. Thank you very much for your participation. Jolene and I look forward to helping each one of you navigate life with hope and joy. Thank you for helping us help you! Colleen
Stress and Compassion Fatigue in Caregiving Families
By Jolene Philo
Stress. Compassion fatigue. Both are words for a condition common in caregiving families. They are also words parents raising children with special needs and disabilities hesitate to utter.
People will think, they say to themselves, I don’t love my child if I admit how stressed I am.
I know what parents are thinking because I was one stressed mama for 4 years after my son was born in 1982. His life-threatening condition at birth required multiple surgeries and procedures for him and years of sleep deprivation and worry for my husband and me.
Over the years I’ve come to realize that while our caregiving duties as new parents of a very sick little boy were not normal, our mental, physical, and emotional response to the situation was. To put it another way, our response to an abnormal situation was perfectly normal.
When I repeat those words to caregiving parents, I can see the tension and guilt leave their bodies. Their shoulders relax, they breathe a sigh of relief, and many begin to cry. We then talk about practical ways to relieve some of their stress. After we part, the Holy Spirit presses the same desire on my heart. Write a book about stress and compassion fatigue in caregiving families.
After several false starts sidetracked by other book projects and life events—like an earlier-than-expected move and the arrivals of four grandbabies in five years, my schedule recently opened up, and I sense God saying, Now. Do it now.
On January 3, 2019 I created a short survey about stress and compassion fatigue in caregiving families to gauge interest and need for the book idea. The response to the survey has been enthusiastic. Within a week of posting the survey on the Different Dream website, almost 500 people had completed it. Less than two weeks later, the number rose to nearly 1,300.
While the response to the survey has been enthusiastic, the statistics have been eye opening.
- 98% of participants say their caregiving duties add stress to their lives.
- 80% say their caregiving duties cause sleep deprivation on a regular basis.
- 91% say stress has negatively impacted their mental health.
- 92% say stress has negatively impacted their physical health.
- Overwhelming demands and isolation are the two greatest causes of the additional stress.
The statistics are heartbreaking and confirm that the responses of these caregivers are a normal response to their abnormal situation.
The survey will be open until the end of January, 2019. If you would like to participate (it takes about three minutes), go directly to the survey or visit Are You a Stressed Caregiver and Special Needs Parent? at the Different Dream website for more information.
Your anonymous responses will be used to convince a publisher of the need for a book designed to support, encourage, and provide practical resources for stressed parents. Thanks in advance for being part of the solution!
You can leave a comment by clicking here.
About Jolene Philo
Jolene Philo is the parent of a child born with a life-threatening medical condition and the daughter of a disabled father. During her 25 years as an elementary educator, many students with special needs and disabilities were integrated into her classroom. She’s the author of several books for caregiving families and special needs ministry leaders and hosts a blog about parenting children with disabilities at www.DifferentDream.com. She speaks at conferences around the country. The book she is co-authoring with Dr. Gary Chapman about the five love languages for special needs families will be released in August of 2019. Jolene and her husband live in a multi-generational household in central Iowa.