The diagnosis of Behavioral Variant Frontotemporal Dementia (BVFTD) Stage 2 for my wife Kimberly in October 2022 marked a profound turning point. This condition has greatly altered the essence of our lives, erasing the vibrant connection between soul mates, lovers, and friends, and with it, our shared dreams, humor, and the meaningful existence we once knew. Most heartbreakingly, it has stolen the future we envisioned for our retirement.

Kimberly, as I knew her, is no longer present. What remains is a semblance of the person she once was, now with the innocence of a child, trapped within a body that can no longer harbor her spirit. Despite her cheerful insistence that “I’m doing great,” the stark reality is that the disorder ravaging her brain has stripped her of the ability to function as the adult she once was. Simple tasks that come naturally to us are insurmountable obstacles for her.

The most poignant expression of her struggle is when she says, “My head hurts and I don’t know why,” a distressing testament to the internal changes and the physical shrinkage of her brain.

Crucially, BVFTD is not confined to the narratives of old age. It strikes with indiscriminate precision, affecting individuals in the prime of their lives and challenging the misconception that dementia is solely a disease of the elderly. This revelation underscores the urgency and the broad spectrum of impact, emphasizing the need for awareness and support across all ages.

This journey is made even more challenging by the widespread misunderstanding of BVFTD. To the outside world, Kimberly appears healthy and normal, leading to skepticism and a lack of empathy from friends, family, and even potential supporters. This invisible illness faces undue scrutiny because its symptoms aren’t as apparent as those of more recognizable diseases.

The societal expectations placed on those who “look normal” are unrelenting. If Kimberly’s illness had visible signs, she would likely receive the compassion and understanding she deserves. Instead, we face a constant battle against misconceptions and the expectation for her to behave in socially accepted ways, despite her incapacity to do so.

Frontotemporal Dementia is a cruel thief of dignity, slowly eroding the essence of the person affected. Unique among diseases, it demands out-of-pocket care costs until the final six months of life, with no coverage from insurance until that dire threshold is approached. With no cure in sight, the hope lies in the support and resilience of caregivers, who themselves face the daunting prospect of enduring this journey.

By engaging care companions for up to eight hours a day, we aim to provide Kimberly with a semblance of normalcy and prevent the restless pacing that comes with her condition. This not only aids her but also allows me the crucial time needed to recharge and continue navigating this uncertain path with her.

We urgently appeal for your support to provide Kimberly with essential home care. Your generosity will not only benefit her directly but will also support me, enabling us to face this challenging journey together with dignity and hope.

Please consider donating and helping us maintain our fight against this devastating disease.