Dancing In The Face Of Death by Susan L. Koen, Ph.D.

After thirty-eight years as business and life partners, Susan Koen and her partner, Barbara, navigated the journey of Barbara’s frontotemporal dementia (FTD) diagnosis for four years. In the face of an unimaginable change to their everyday life, Barbara and Susan made the decision to enter a gene replacement clinical trial together at the Penn FTD Center in order to contribute to the fight for a cure for GRN-FTD. In her new book, Dancing In The Face of Death, Susan Koen details their devotion, courage, and determination to love one another while facing an FTD diagnosis. Through the lens of caregiving, this story offers empathic insights into the hardships of dealing with anticipatory grief, personal agency, and so much more.

Read below for an exclusive highlight Susan has provided Penn FTD Center subscribers, giving us a sneak peek into caregiving through “moving memoirs, unforgettable love stories, and emotionally rich narratives about resilience.”

1. When did you know you wanted to write about Barbara and the life you shared?

   I wrote this memoir at Barbara’s request. One morning, about a month after her official diagnosis, she saw me journaling—a strategy I’ve used throughout my life to work through challenges I’ve encountered. Barbara said, “You should write a book. It would help people.” And with that simple request, this memoir was born.

   
   

2. What was the most challenging part of writing about Barbara and her frontotemporal dementia (FTD) diagnosis?

   There were two difficult parts. First was writing about the day we had Barbara’s diagnosis confirmed by her MRI results. Second was having to write about the times my frustration with the changes in Barbara’s behavior spilled out in negative responses to her. I’m not proud of my behavior in those times, yet I know they had to be included in order to give a full and accurate portrayal of the impact of FTD on families and direct caregivers.

   
   

3. What is one piece of advice you’d give to new caregivers?

   Pace yourselves, and attend to your own health and well-being too. The FTD journey is long, and at times quite difficult. It requires both physical and emotional health, which can only be maintained if you get enough sleep, eat right, and exercise. The tendency is to give all of your care and attention to your loved one but make sure you save some for yourself. Otherwise, your care work won’t be sustainable.

   
   

4. Has writing this story provided any new perspectives on your caregiving journey?

   Writing the last Act of the memoir stymied me at first because I didn’t know what my future held, but in the course of writing this final part of the book I was able to reflect more fully on my role as a caregiver. I finally came to accept that I kept my focus on the right things during my caregiving journey; namely, I gave Barbara full agency in her life, despite her FTD diagnosis, and let her needs and desires guide my caregiver choices.

   
   

5. What do you hope readers will understand after reading this book?

   There are several key takeaways I hope readers gain from my memoir:

   
   

   First is that an FTD diagnosis doesn’t erase the person you love. They are still a person deserving of choices in their lives, and there can still be many beautiful moments shared.

   
   

   Second is that participation in clinical trials is rewarding for both the person with the diagnosis and their care partner. Being a part of research for a cure to FTD makes you feel like something good is coming out of the difficulties this diagnosis creates.

   Third is to give yourself grace if you are a caregiver for a person with dementia. There will be challenging times and no one can navigate those challenges perfectly. Just stay focused on keeping up your personal strength, and on finding connections with your person through it all.

All proceeds from the sale of this book will go towards advancing clinical care and research at the Penn FTD Center. You can purchase Dancing In The Face of Death now from Amazon by clicking the link here. Find more information on the book and Susan Koen by visiting her website here or her LinkedIn account: https://www.linkedin.com/in/susan-koen

You can also follow her on Facebook, Instagram, or X under her handle @susankoenauthor.