by Wendy Gilker
I have been caring for my profoundly handicapped daughter, Bree, for almost 34 ½ years now. Some people say it’s not Post Traumatic Stress disorder (PTSD) that I’m experiencing. Others tell me that, because I’m her mother it’s not a job, but my responsibility to take care of her.
As I look back in retrospect on these years, I am amazed that I am even still on this planet and the only reason I am here is because of my beautiful little daughter.
My daughter fought to be here
She was two weeks overdue, and she was literally dying inside of me. The embolic fluid had turned green, she was totally wrapped up in the embolic cord and the Placenta was turning to calcium. Then when the C-Section was performed, it took her 20 minutes to breathe on her own.
Within 2 months, we were told that our daughter had a syndrome call 4 P- or Wolfs-Hirschhorn Syndrome. It was not genetic, as both Walter and I were tested. It was just what it was.
All these years later, I fight to keep balance.
I put up a good front, yet behind that front I have dealt with 6 years of migraines so intense I can’t stand up, yet I still find a way to care for my daughter. In the last three years I have broken both arms, one foot, and now have issues with muscles in my neck. Within one month, I experienced the death of a family member, broke my arm, and then a fire in my home. My daughter and I had to move out of the apartment we’ve shared for 20 years.
I have dealt with my daughter being sexually abused and the nightmares that followed as I recovered from trusting people who were not trustworthy.
Every time an ambulance passes, I find myself there, reliving the time I rode in one with my daughter in respiratory distress, arriving at the hospital thinking she had already died.
Years of isolation, rejection, poverty, and loneliness are normal when one is a caregiver. Fear and anxiety, nervousness, irritability, sadness, feelings of isolation, guilt, changes in sleep, crying spells that catch you off guard, emotional numbness, nightmares, shock, muscle tension, and inability to stop thinking about traumatic events are normal for my experience. Yet these symptoms were not found in articles about the stress of Caregiving. They are all from articles about PTSD.
PTSD can be triggered by an event that feels unpredictable and uncontrollable. My daughter’s birth was unpredictable and uncontrollable. The doctors told me that my daughter would be lucky to live to 5 years. They said she would have seizures that would take over her life even with medication. They said she would never interact or respond. They said that they would not hospitalize her yet. Am I traumatized? Hell YES.
PTSD is a disorder that can develop following a traumatic event that threatens your safety or makes you feel helpless. I felt totally helpless, hopeless, and terrified. I go down the list of symptoms like a checklist. These symptoms must have lasted for more than a month to be considered PTSD. Well, it has been 34 ½ years.
Managing Caregiver PTSD
That is now my full time priority next to my daughter’s well-being. It is a journey. How do I cope?
I manage by eating a plant based diet (macrobiotic & raw), daily meditation, TRE, walks, yoga classes, and gym workouts, spending time with dogs, reading, music. Spending time in nature is essential for me. It is a lonely path, yet I know what my purpose is here and I will do whatever it takes to fulfill that purpose.