Caregiving can be traumatic

In 1997, I took a two-year leave of absence from my position as a School Social Worker. This decision was driven, not by my desire to leave, but by a consideration for my spouse, who wanted to move near his family in Florida. In my mind, this move was going to be temporary. 

To make a long story as short as possible, the gist of what happened was when our decision was made to move, I had been involved in a research project to validate intervention protocol for children who had experienced a trauma and/or significant loss. My participation involved following the interventions provided with four selected children, who had recently gone through a significant trauma, which was affecting them emotionally, socially, academically and/or behaviorally. Of course, the parents had to agree and participate in the process. Teachers also provided feedback.

This experience sparked my desire to write a helping children’s book. The book, Brave Bart: A Story for traumatized and Grieving Children has also been used with adults. I share this, because when I wrote this book, I had no idea that soon after its release, I became a near and long-distance caregiver for family members. This book remains in circulation today, 21 years after it was published.

In October of 1999, just over one year after Brave Bart’s publication, my father suffered a stroke in another state. How I found out, was by a phone call home to check on my parents, as I knew that they were not doing well. My own traumatic experience was set into motion with this first call to action to help a family member in need. This first call to action was not my last. I ended up helping my father, mother, aunt, uncle and brother between 1999 and 2014. 

Not all caregiving is traumatic, but for many, if not all of us, helping others in need can have some very difficult and traumatic times, or the entire experience may be laden with stress, trauma, grief, etc. One very important piece to help someone who has experienced something traumatic, is to acknowledge their bravery in the face of what happened to them—whatever that might be. As I experienced my own caregiving trauma, I recognized that many of my reactions I experienced, were trauma based. It is important to note that what may be traumatic for one, may not be for another. Can you think of a time that some part of your caregiving was traumatic? I am pretty sure that many of you will answer yes. The question remains, what have I done to get help for myself?  

Back when I started my caregiving, there wasn’t an online support group for caregivers, such as Caregivers Space Community. I knew I needed support, but because I was traveling to be with my family members in need, I wasn’t sure how to find the time. Fortunately, I learned about a Life Coach, who helped me via telephone sessions. I could talk to my life coach anywhere, in my car, in a hospital parking lot, or back home for one of my breaks to take care of my life until the next trip up to Michigan or down to Florida.  For my first of four charges, I did not have a coach. But for my brother, who was dying of an aggressive cancer, I finally reached out for help. 

Watching my family members suffer, and/or not be able to communicate due to strokes, loss of independence due to dementia, experience tremendous pain, and in general have their lives change dramatically before my eyes was certainly traumatic for me. The most traumatic experience was sitting with my brother when he died. And, even though I do not regret being with him, the sights, sounds, and inability to help him, stayed with me for quite some time. I saw the moments of his struggle to breathe play over and over in my head, as it did with my last moments with my mother as well.

Knowing we are not alone can be very comforting. I am grateful for the tremendous support I received from the hospice people that helped my family leave this world with dignity. And, I am glad that I was there for all but two of my five family members whom I helped, as they took their final breaths. 

There are different types of trauma and common reactions to all. We all have a different story to tell, which leads to support for one another. Although no two experiences are alike, we share common feelings. Knowledge about trauma and loss did not shield me from my own trauma; however, it did help me realize that it was okay to find help for myself. Not always easy, but always very important. What type of help we reach out for is personal and in the end the right thing to do. 

Caroline Sheppard, MSW, recently published a book focusing on her long distance caregiving experiences with five family members spanning a fourteen-year period. She hopes her stories and experiences can help others facing caregiving from both far and near, by sharing difficult yet rewarding lessons learned. She became a caregiver while on a leave of absence. She soon found her life and priorities so changed that she never went back to work. Caroline has been a social worker for her adult working life, with a specialty in families, children and schools and has been certified as a trauma and loss specialist. She has written three children’s books: “Brave Bart,” a story for grieving and traumatized children (which is still in print), “Shadow Moves,” a story for difficult and traumatic moves and “Brave Bart and The Bully.” Two of these were illustrated by her brother who sadly passed away before the third book was completed. She was also his long distance caregiver.

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