by Kirsten Jewell

My sister Kara was a nurse, wife, mother, sister, daughter, and friend in the prime of her life, when FTD – the cruelest disease you’ve never heard of – stole that life from her. Kara had just become a mother for the first time when we started to notice big changes in her behavior. Initially, we chalked it up to being a tired new mom, who had endured several traumatic events during her pregnancy, including losing our 16-year-old cousin in a car accident and our grandfather six weeks later.

However, following a long road of visits to psychiatrists, medications, and even a three-month hospitalization, my sister landed at Mayo Clinic, where my parents were handed a diagnosis none of us were ready for – frontotemporal degeneration. Before then, we had never heard of FTD, and were certainly not expecting that my young and otherwise healthy sister would be diagnosed with dementia.

In the two years since her diagnosis, my sister has rapidly declined. Kara was a vibrant, smart 29-year-old when she received her diagnosis. Now, at 31, she is almost completely non-verbal and incontinent, has issues swallowing, and requires 24/7 care provided by my wonderful parents.

Kara’s life was stripped of so much potential, and while the loss and grief seem like too much to bear sometimes, when I look at my sister, I realize I still have so much to be thankful for. Kara has a childlike innocence, and the way she giggles is contagious. She has a swing in the yard that brings her joy, and she still gets to see her son grow and play. Kara gets to watch her favorite shows, eat her favorite foods, and participate in family functions and traditions. She has such a sweet soul, and we feel lucky to experience these times with her.

The rare occasions when she talks are a much-needed treat for our family. Not long ago, Kara broke her silence and told me that she loved me. While I hadn’t heard those words in such a long time, it made me realize that my sister is still in there somewhere, and still experiences moments of love and joy.

It feels important to remind others on this journey that although this path is often lonely and dark, we can still find glimmers of light and hope. Whether a kiss on the cheek, a smile, a laugh, or even a very rare “I love you,” these are the moments as caregivers and family members of people living with FTD that we must hold on to and cherish. And in turn, these moments fuel our desire to honor our loved ones by working together to increase awareness of FTD, help bring about earlier diagnosis, and build a future free of FTD.