Magdalena Macias, University of San Francisco
What does it feel like to lose and grieve a person who is still alive? How do you show gratitude for their presence while navigating your well-being? How do you learn to live with the "what ifs"? These are questions I have grappled with since my dad was diagnosed with Frontotemporal Dementia (FTD). What initially appeared like a bipolar or depressive disorder transformed into a progressive disease that gradually led to behavioral, motor, and speech impairments. Before his official diagnosis, someone always had to be home with my dad due to his persistent urge to wander away from home. I distinctly recall a day when only he and I were in the house. We were sitting side by side at the kitchen table. I assisted him by picking up his food with the spoon and placing it in his hand. I watched him slowly bring the spoon to his mouth and swallow. It felt like we sat there for hours before he stood up and headed towards the front door. Instinctively, I rushed to the door to stand guard. I knew it would take my dad longer than usual to get there since he was growing increasingly weak. When he reached the door, he was determined to leave, so he approached me with all his remaining strength and attempted to move me out of his way. I questioned why he needed to go out and pleaded for him to return to the kitchen. He briefly calmed down before changing his course and heading toward the back door. I raced to the back door in a continued attempt to make him understand why leaving wasn't a good idea. This lasted for almost fifteen minutes until I stopped him in the kitchen during one of my sprints. By that moment, I had become overwhelmingly frustrated. As my dad held onto my hands for balance, I swung my arms downward and stated, "I don't care. Do whatever you want." Then, I turned my back to him and ran to my room. Before completely turning the corner down the hallway, I looked back and saw my dad on the floor with faint tears streaming down his face. I wish I could say that I rushed toward him, helped him up, and wrapped my arms around his waist, emphasizing how much I love him. That remains a "what-if" in my mind. Back then, I was young and had no understanding of what was happening to my dad. Now, as a senior in college, I know that my dad was going through an unimaginable battle. I could not even begin to comprehend his thoughts and emotions as his life was slowly and gradually slipping away.
He is a prisoner of his mind, and I said goodbye to the person I once knew and remembered. Moments like these remind me of the new relationship I've had to develop with my dad. Ever since my dad lost his ability to speak and walk, not a day goes by that I don't wonder what is happening inside his mind. Sometimes, while he lies in bed or on his recliner, I talk to him, aware that a response is improbable. Still, his dark brown eyes convey much of what I believe he wishes to say aloud. My dad's illness has driven me to find a calling in medicine, to give answers to all the young girls with uncertainty and bewilderment about what is happening to their loved ones.
It's also helping me find my voice as an advocate for my dad and the 6.7 million Americans living with dementia, as well as the 11 million unpaid family caregivers who care for them. Much progress has been made in Alzheimer's and related dementia (ADRD) research in recent years. This is largely due to Congress passing the National Alzheimer's Project Act (NAPA) a decade ago, which created a National Plan to address ADRD. The three primary objectives of the National Plan are to find a way to prevent and effectively treat ADRD by 2025, to improve clinical care for ADRD, and to expand support for people with ADRD and their caregivers. Unfortunately, little progress has been made on the third goal, and authority for the National Plan is set to expire in 2025.
November is National Family Caregivers Month, and my family has witnessed firsthand the urgent need for increased support of caregivers providing care for loved ones with Alzheimer's or related dementia. The efforts and needs of primary caregivers should never go unnoticed, so please join me in urging your local representative to cosponsor the NAPA Reauthorization Act (HR 619) to renew and strengthen our national commitment to the fight against dementia and to improve support for people with dementia and their caregivers.
About the Author: My name is Magdalena Macias, and I am a senior at the University of San Francisco. I want to share my dad's story and the many ways his illness has changed our lives. I firmly believe that physicians play a vital role in advocating for patients and their families, as well as guiding them through such difficult diagnoses. Currently, I am conducting research at UCSF as a student intern in a lab that studies Frontotemporal Dementia. This experience has given me a profound and impactful perspective on my future work as a physician-scientist within my community. My goal is to contribute to this field through advocacy, research, and compassionate care.
About the Work: I am honored to write and share a piece of my family's journey. I intend to increase awareness of a national commitment to fighting dementia and to advocate for enhanced support for patients and their families. I hope that, through this effort, we can gain a deeper understanding all the while collectively providing a more compassionate and supportive care system for patients and their loved ones. Furthermore, I aspire to bring change within the Latinx community; tackling complex and difficult topics such as this one by promoting awareness, education, as well as culturally competent care. Above all, I want to give a voice to the extraordinary human being and role model that my dad is!
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