Priority & Perspective in the Face of FTD Caregiving

I recently turned 41 and I’ve been caregiving for both of my parents for the majority of my adult life. Although I officially recognized my role as a caregiver in 2015, about 3 years into my mother’s journey with frontotemporal dementia (FTD), my journey actually started in 2006 when my father suffered his first of 5 strokes and a heart attack. I was a sophomore in college, battling my own physical and mental health issues, and I took off two semesters to “help my dad” while my mom went back to work.

Although I did not identify as a caregiver until a third of the way through my mother’s journey, care has been a consistent part of my life from the day I showed up on the earth. I was born three months prematurely and came with a host of health issues. My early birth meant that I would receive nurses’ care 22 hours per day until I was healthy enough for my parents to become my full-time caregivers and defacto physicians. My mother had to learn how to change my tracheostomy, administer oxygen, and other tasks for which she was not formally trained. Who knew that 27 years later, I would find myself in the same position.

In 2011, my mother began exhibiting confusing behaviors. Rage over my father bringing the wrong type of cheese home from the store, bitterness about fictional family disputes, and no longer practicing her Christian faith – something that guided her for her entire life. My father and I were astonished. We had no idea what was going on, but we knew we had to get her some help.

After three misdiagnoses (ranging from menopause-related depression to early-onset Alzheimer’s disease), we finally connected with a neurologist who diagnosed her with frontotemporal dementia, or FTD. Frontotemporal dementia is the leading cause of the disease under for people under the age of 60 and can be marked by severe mood swings, behavioral changes, and, in my mother’s case, memory loss (though this symptom is rare in people living with FTD).

Were we devastated? Absolutely. Were we also somewhat relieved? Yes. We finally had a name for this thing that ferociously robbed us of the woman we knew as mother and wife, neighbor and friend, parishioner and volunteer. While there is no cure for frontotemporal dementia, there are some treatments that can make some of the behaviors more manageable, and my mother’s neurologist prescribed those medications. And they worked for awhile… until they didn’t. The anger, the wondering, and the fear subtly subsided for a few years, and then came roaring back with fury.

Then, one day, I found myself praying. This wasn’t an unusual act for me, as my mother had passed down her longstanding faith. I was feeling sorry for myself and yelled at God, “This isn’t fair!” Then, as clear as day, I hear in my heart the following words: “You’ll have many opportunities to date, future nights out with friends, and several more jobs before it’s all over. You only get one set of parents.”

I ran to my journal to record those words, tears streaming down my cheeks. Suddenly, it all made sense. The jealousy, the frustration, the fear – it all coalesced into meaning in minutes. That’s not to say that the feelings immediately vanished forever. I still have moments where I feel left out of contemporary life as a caregiver. But rather than turning to anger, I do my best to remind myself that in this case, there are no do-overs. I have one chance to choose to show my parents love through care, and I should not waste it.

Throughout the remainder of my mother’s life, and as I continue to care for my father, I learned to cherish the intimate moments like singing together while I bathed her. I clung to the positive and the lovely until the very end of my mother’s life in 2023, and I am intentional about making memories with my father now as he lives with vascular dementia.

Life may throw us curveballs that cause us to question the fairness of this thing called life. But through my faith practice, and the community of caregivers I’ve been blessed to know on this journey, I am still learning that life isn’t about comparing wounds or wins. It’s about relishing and delighting in the moments that make life worth living. The faintest sign of a smile or the ability to create a sense of safety is vitally more important than anything else in the world in that moment, and the legacy we establish will far outlive us. And that is a reality I can life with.