One Patient's Story: Caring for the Caregiver

Dixie Fremont-Smith Coskie, Children's Hospital Boston's Health and Science Blog
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.

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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. They 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.

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.

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.

From Thrive, Children's Hospital Boston's Health and Science Blog. Reprinted with permission.

Posted on BrainLine June 30, 2010.