I met my Mom and Dad at our local hospital’s emergency room (ER) the other night because she had developed an infection in her arm that was causing her to get septic. For most people a simple cut on a finger would not be a big deal, but my Mom has lymphedema, a result of surgery for breast cancer 13 years ago. She spends much of her time working on her arm to keep the lymph fluid draining to prevent such infections. It’s a daily annoyance for her; I am sure a reminder of her experience with cancer. The same type of cancer that took her mother’s life, the same type my younger sister has had to endure.
I’ve had my fair share of ER experiences over the past nine years, ranging from my husband’s spontaneous intestinal bleed to his numerous unexplained high fevers. I could write the book on how to be an engaged waiting room participant without losing one’s cool. The wait this time wasn’t too bad. There was an air of distraction, I think, because of the ensuing holiday weekend.
What caught my attention wasn’t the anxious child with an apparent ear infection, or the woman who was visibly uncomfortable pacing in the corner, or the teenager in the wheelchair looking despondent, or the woman in pain sitting across from us with tears covering her cheeks. It was the loved ones with their ill family member that held my attention this time.
It was the worn out mother with the child, the hawkish husband with the woman walking in pain, the withdrawn parents of the teenager in the wheelchair, and the anxious parents with the woman crying. It was my Father, with my Mother.
Physical hurt is, for the most part, apparent. It presents with visible signs and symptoms. It gives medical professionals information to work with and visibly objective measures for improvement. Emotional strain, however, is relatively silent, insidious, relentless and nearly impossible to quantify. If left unattended it changes moods, behavior, breaks down communication, strains relationships, isolates, contributes to feelings of anxiety and worry, and causes long-term, often permanent negative physiological changes in the body increasing one’s risk for diabetes, heart disease, and, yes, even cancer.
Three years ago I was asked to present the results of a national survey on American’s views of food and nutrition at a large conference. From the airport to the convention center I found myself riding in a cab with a well-respected colleague and researcher in the field of aging. She asked how my husband was doing and I shared we had just returned from four months away for his bone marrow transplant. She paused, twisted around in her seat and looking straight at me told me I needed to pay attention to my own health. Her words were riveting and those I will never forget. She shared that her research had consistently shown within 18 months of resolution of a loved one’s illness, the primary caregiver typically finds themselves newly diagnosed with their own health problem, often cancer. What she also found was the level of intensity and duration of the loved ones illness, the greater the risk and more severe the caregiver’s ensuing health problems.
Her findings, although unnerving, are not surprising given the short and long-term effects of stress hormones on the body. Our body is designed to experience stress and react to it. Stress can be positive, keeping us alert and ready to avoid danger. However, stress can have negative long-term health effects when a person faces continuous challenges without periods of relief between the challenges. The dangerous thing about high levels of chronic stress is how easily it starts to feel familiar, even normal. You stop noticing its role in your life, even as it takes a heavy toll – affecting your mind, body, and behavior.
There is a lot written for caretakers most in the vein of “take care of yourself first so you are there for your ill loved one.” Sounds good, even true, but the realities are most caretakers don’t have the time or resources to care for themselves in the capacity needed to offset the long-term health consequences of shouldering the emotional strain that comes with constantly picking up the pieces surrounding a sick loved one. If the loved one’s illness is chronic and wrapped in unpredictability, such is often the case with some cancers, it can be nearly impossible to gain emotional relief when the potential for crisis is always lurking.
Many have said there is a silver lining in adversity. I say life becomes draped in a silver cloak when you live with cancer. My cloak – I have had to adjust my approach to life. I now pick my battles. I have learned that I cannot lead the charge on every one of my husband’s health struggles. I am finally accepting that my emotional drain will always be open as long as he is struggling. I am learning how to wait patiently in an ER.
Copyright © 2012 Jeannie Moloo. All Rights Reserved
This is a beautifully written piece, Jeanne, and a cautionary tale for caregivers.
Thank you Lunden.
susan polanco de couet says
Always so well written and inspirational, thank you again for sharing with us. Give you Mom and Dad our best as well. I’ll share your thoughts with Gert and other caregivers. Aloha, Susan
Thank you Susan for reading and posting. I’ll let my parents know. Give my best to Gert.
Jeannie, Another entry that touches the heart.
Thank you Louise for reading and commenting. We could not do this ride without all the support you’ve given us.
Joan Salge Blake says
Oh, Jeannine… This is so insightful. I will be thinking about you and your thoughts all day. Much love, Joan
Thank you Joan. Appreciate your reading and commenting. Hope all is well.
Rita Kleypas says
Jeanne, thank you for taking the time and effort to write this. Your words have alot of wisdom that is very helpful for the rest of us. You are so strong and God will continue to give you strength. You have a lovely family. Tell Nasir hi from me as I think of you both and remember how kind you were to me sharing your apartment that afternoon when I was in a very small time of need.
Thank you Rita!
Chris Rosenbloom says
Wonderful advice. I used to teach Health and Aging and used this quote from Rosalyn Carter, ““There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers”.
So very true Chris. Thank you for sharing.
Jeannie PLEASE write a book! Your insight touches & inspires me every time. I look forward to your blogs. The email link in my inbox feels like an unopened present. 🙂 Thank you for having the strength to share your perspective.
Thank you Amy!