Yes, It’s Traumatic

My first conversation about PTSD and family caregivers took place with a family caregiver in a chat room eight years ago. The family caregiver shared stories of caring for her husband and the critical medical episodes he experienced that she witnessed over the years. The memories of these episodes -- the helplessness as she watched his seizures, the minutes that felt like hours as she waited for the EMTs -- haunted her.

Almost six years ago, I watched my mom take a terrible fall. She wasn’t feeling well but refused our requests to drive her home. “I’m fine,” she kept insisting. I stood at the front door, watching her walk to her car and then watching her fall on to the concrete. She hit her head and lost consciousness. The blood, the confusion, the broken tooth -- it was awful. I couldn’t sleep for weeks, haunted by my thoughts, “What if I hadn’t watched her leave? What if she had fallen outside the house and laid there for hours because we didn’t know?"

About three years ago, I stood in the exam room of my dad’s oncologist's office. I had been fighting to clear up my dad’s horrible rash around his stoma. (He lost his bladder to bladder cancer in 2015 and wears a bag, attached to his abdomen, to collect his urine.) I had asked for help from 12 different nurses and tried everything I could. I thought I had cleared up the rash but it returned. The oncologist’s team responded to the rash with what felt like a 911 drill. They asked my dad abut the care he was receiving, called in the ostomy nurse who lectured me about keeping the skin healthy. The small exam room got smaller and smaller and smaller. A few months after that visit, my dad’s general practitioner referred him to an ostomy nurse who finally helped us with a solution that worked. His oncologist wanted us to change my dad’s bag every five days. Marina, the new nurse, suggested we change the bag every two days. That simple change made all the difference. The rash around my dad’s stoma wan’t about my care but about the instructions we received from his health care team. The shame I felt in that exam room still feels raw.

So many family caregivers go through the wringer trying to get an appropriate, timely diagnosis. So many family caregivers, especially BIPOC family caregivers, are dismissed by the health care system. One of our Certified Caregiving Consultants (CCC) recently shared the story of trying to get a diagnosis and then related support services for her daughter. The doctor would not diagnose her daughter which meant her daughter couldn’t receive the help she needed. The CCC had a co-worker who also had a child with similar challenges. That co-worker had a completely different experience with the very same doctor. The doctor gave the co-worker’s daughter a diagnosis and referred the child to support services for which insurance paid. Without a diagnosis, the CCC had to pay for services out of pocket for her daughter. Trauma happens when we lose trust in the health care system and its promise to provide quality, accessible care.

Trauma during a caregiving experience is also about what we lose. One of our CCC training participants recently shared what it was like when she learned about her husband’s accident. She received a call at work and then immediately left to go to the hospital. She never returned to her work, a career she loved. In one second, she left one life to enter a completely different one.

A Forbes article recently explored the topic of PTSD during a caregiving experience. It’s such an important topic because it can lead to better help and support for family caregivers during and after caregiving ends. When our caregiving experience ends, we need time to recover from our trauma experiences. To recover, we need support that helps us heal.

So many of us have had conversations about PTSD over the years including during our regular chats on Twitter. Let’s get together again and share our experiences. Join me for a conversation on Twitter about the trauma we experience during a caregiving experience on Tuesday, Sept. 8, at 1 p.m. ET (Noon CT, 10 a.m. PT). Follow our hashtag: #HealingChat.