One patient's story: caring for the caregiver

Dixie Coskie is the mother of a child who lived through both a traumatic brain injury and cancer. In this blog post, Dixie writes about the stress that comes from being the primary caregiver of a sick child and the importance of taking care of yourself. Click here to read more of Dixie’s writing, including excerpts from her book, Unthinkable! A Caregiver’s Companion.

Dixie and her son Paul
Dixie and her son, Paul
No one is immune to getting that phone call—the one that tells you something bad has happened to your family. Be it a diagnosis of a life-threatening disease or an involvement in a horrific accident, you never expect it to happen to someone you love. When it does, most of us are totally unprepared for the constant caregiving that follows and how it can impact your life emotionally, spiritually and physically.

I received such a call in 2001 when my 13-year-old son was involved in a bike accident without a helmet. Among many other severe injuries, he incurred traumatic brain injury. Not expected to live, Paul was given last rites. Doctors warned me that if he did survive, his quality of life would be questionable. Finally, Paul woke from a two-month coma. He couldn’t walk, talk or perform the simplest of tasks.

Suddenly, in addition to taking care of the needs of my other seven children, with ages ranging from 6 to 16, I needed to learn medical techniques used in caring for a severely handicapped child. My husband and I worked as a nonstop team, one of us caring for the rest of the household while the other took care of Paul at a rehab hospital an hour from our home. In the shuffle, there was no time for us to take care of our own needs. The caregiving was isolating, demanding and never-ending.

A year after the crash, my son healed enough to be able to return to school in a wheelchair. These were my first moments of reprieve. My mind and body now had time to register what we’d been living through—all the fear, exhaustion and stress—and I collapsed under the strain. The pain shooting through my body was excruciating. My husband and children once again faced the dread of medical uncertainty. I saw a neurologist and endured numerous invasive tests to identify the mystery pain, but results were inconclusive. Possibly I had multiple sclerosis, or bone spurs in my neck or fibromyalgia. I saw a rheumatologist to check for Lyme disease, arthritis and lupus. I was put on a high dose of pain medications, which left me groggy and dizzy. I was desperate to get better and get back to caring for Paul and the rest of my family.

Paul took guitar lessons while receiving treatment at Children's
Paul took guitar lessons while receiving treatment at Children's

A specialist in Boston finally diagnosed my condition: post-traumatic stress syndrome and something called thoracic outlet syndrome. My doctor recommended counseling because she thought I may have been experiencing caregiver burnout. She also recommended physical therapy to help decompress the muscle tension around my shoulders and upper arms, which had become incredibly tight because of all the stress.

After four years of speech, occupational and physical therapy, Paul was walking, talking and taking steps once thought impossible. But then during his junior year of high school, a new and unrelated medical problem surfaced; Paul was diagnosed with leukemia. I knew another enormous fight was in front of us, with lots of procedures and hospital stays.

Paul was scared but bravely prepared himself for another round of long hospital stays and doctor visits. Fortunately for us his primary oncologist at Children’s Hospital Boston, Jennifer Whangbo, MD, PhD, was great and remains a driving force in his recovery. She is not only compassionate, but a very real, knowledgeable and dedicated professional who cares deeply about her patients. She helped Paul and our family in more ways than she knows.

Because of our first catastrophic medical experience I knew this time I needed to take care of myself in order to be able to take care of Paul and my family. I sought out positive people for support. I took breaks from the hospital to exercise, meditate or just have a moment to myself. I realized that asking for help was not a weakness, and when friends asked what they could do, I gave them a list of chores like shopping, carpooling and meal preparation. I rid myself of guilt and acknowledged my strengths. I educated myself on the diagnoses and worked to improve the line of communication with family and friends.

Dr. Whangbo, shown center, was a driving force in Paul's recovery.
Dr. Whangbo, shown center, has been a driving force in Paul's recovery.

Those of us who have had a brush with death, catastrophic injury or illness realize more deeply how fleeting life is. Tell others how much you love them, and tell them often. Try to never take anyone for granted. Choose to react to your situation with a sense of faith, hope, patience, humor, passion and a lot of love. Be realistic about what you can and cannot do and take care of yourself along the way.

  • This article came at just the right time. I have been taking care of my severely sick daughter for almost a year now. It is so true about getting away and making time to exercise, meditate, pray, or just sit alone outside in the fresh air. And ASK FOR HELP– people are more than willing to help out and give you a break.

  • Michelstee6

    wow absolutlutly an amazing story…TY for sharing

  • Happymommyx4

    I know it is not the point of this story, but I’m literally in tears thinking of how often I send my children out without their helmets on to ride their bikes. I’m pulling those helmets out of the garage right now.

    As an Army wife with 5 small children who has gone through countless year-long deployments, I have learned the hard way that asking for help when you need it is not weakness. Weakness is putting on that false picture of super woman strength and pretending help is not needed. No matter the reason, we all need help from time to time. It does indeed take a village to raise a child, and 1 person does not make a village.

  • Marilyn Lash

    Dixie’s courage and perseverance are remarkable and a testimony to a mother’s love. You can read more about how her son’s brain injury affected the entire family in personal accounts by her and her children at http://www.lapublishing.com/blog/2009/brain-injury-family/

  • Ginnym

    Thank you for sharing your story! As a caregiver for my son, I also did not care for my own health and suffered the consequences. I am now back in school to become a medical social worker to use our experiences to assist others with chronic medical conditions adapt to their new lives. Even though I had to learn along the way, I do not want others to have to learn the hard way!

    I am so sorry that your son went through so much! Sharing your story can help so many others! Best wishes as you continue assisting your son and your other children! How did your other children adapt to the challenges?
    Ginny Miller

  • Michael Paul Mason

    This story really demonstrates the essential role that families play in the recovery process. Paul’s progress is a direct result of his mother’s love and determination.

  • Bob Miller

    Family are usually the main ingredient in caregiving regardless of the injury.
    Feel free to repost this on our Stroke caregivers page http://strokecaregivers.com

  • Taking care of oneself while being a caregiver is THE MOST important lesson anyone can ever learn. Your story is so moving and demonstrates to others how quickly burnout can overtake your loving efforts.

    Our organization is dedicated to letting people know about Share The Care – a grassroots caregiving model that teaches your friends, neighbors, and coworkers how to organize a “caregiving family” and maintain their efforts over time. See: http://www.sharethecare.org