Saturday 28 August 2021

PTSD in Caregiving - When Little Things Feel Life-Threatening

One day when I was 17, I happened to be home alone with my father. As a result of three strokes a year earlier, Dad was paralysed on his right side and had lost his speech. On this particular day, I remember in vivid detail walking down the hall into the living room. I recall feeling immobilized by fear. Dad was shaking and his mouth was open, his head pulled to one side. I thought I was witnessing another final stroke that would kill him. Later that day, the hospital confirmed that it wasn't a stroke Dad had suffered, it was a seizure. 

Fast-forward to September, 1990. It was the very first day of my son Nicholas' preschool and I remember sitting at the kitchen table with a newspaper and coffee, savouring the deliciousness of my first respite from total care in two years (Nicholas has severe CP and is medically complex). The telephone rang. It was the preschool director who said, "Nick has had a seizure and is on his way to the hospital - he is not responsive." I remember thinking, "Nick will die or he will suffer further brain damage that will change him from the son I know and love into someone I don't recognize." Bursting through the ER sliding doors at the children's hospital, I could hear him crying. "Oh thank God", I thought, "he's OK." 

But I was not OK. For years after that, when the telephone rang, my throat constricted and my heart raced. The telephone became an ever-present omen of some deadly threat. Every single ring made me check that everyone in my family was safe even if Nicholas was in my arms and Natalie and my husband Jim were horsing around in the next room. 

Presentation slide based on my experience

And that's not the only mind game that played out in my head. "Nicholas was OK after his seizure so it wasn't really a big deal - I am just over-reacting and being silly", I said to myself. I also thought that with so much "practice" in helping Nicholas survive traumatic medical events, I should be strong and stoic. I should be able to react in a clinical way because I had normalized trauma in mothering him. Man, was I wrong. With each medical emergency, I got worse at handling the "small" stuff. Soon enough, every test, every needle prick, and certainly every surgery felt like doomsday. 

But I never thought of my emotional response to mothering a complex child as PTSD. I thought only soldiers or paramedics had that - until a conversation I had with my friend Dr. Pat McGrath, a psychologist and researcher in the area of childhood disability and family. Pat was telling me that a grant application he'd written for PTSD in adults had been turned down. When he described the symptoms he wanted to treat and evaluate, they sounded very familiar. So I suggested that he investigate the syndrome in parents of children with complex care needs. The rest is history, so to speak. 

I am a parent partner on Pat's Life Beyond Trauma research study. We tested an online coaching narrative exposure treatment program on parents of children with disabilities who had PTSD symptoms. The data from the study is not available yet, but throughout the evolution of the study, we have learned a lot about the last after-effects of traumatic events in the lives of caregivers.

Very recently, Pat and I presented the study to a group of caregiving parents in a webinar series called "Luke's Legacy Family Research Rounds" hosted by bereaved Mom, Rachel Martens. If you are a caregiver and have experienced traumatic events in your life including in your caring role, I encourage you to listen to our presentation and the group discussion we had afterwards HERE. If you believe that you suffer from PTSD, share this information with your GP or therapist. 

No comments: