08 Oct Never Lost: The Power of Relentless Love in Dementia Care
In her book, On Vanishing, Lynn Casteel Harper powerfully likens the pursuit of another to the Biblical parable Jesus shares about the widow who searches diligently to find her lost coin. Harper writes, “She lights a lamp and sweeps the whole house until it is found. Dementia, it seems, demands that sort of persistent search. When we become lost to ourselves, when our thoughts blur and words fade, we need others to search for us—refusing to let us disappear into obscurity. We never stop wanting to find and be found by another…”
Harper continues:
“When I have dementia, I do not know what parts of myself will go missing. I do not know what can be retrieved. I will need others to pursue me—to light a lamp and sweep the house, plunging into the tiny cracks and dark corners, rummaging through forgotten spaces, upending the entire house—searching tirelessly until I am found. I will play the searching woman while I can, and soon, perhaps, I will be the coin.”
The relentless commitment—the determined search for another—lies at the very heart of what it means to love. Love is not complacent. To love is to pursue, to refuse to let anyone feel lost.
Working with families at Dementia Together, we witness daily how enlightenment and hope are sparked when care partners dedicate themselves to truly pursuing their loved one—not just physically, but emotionally and personally. Using Dementia Together strategies, they become “detectives of the soul,” seeking out specific details of history, patterns of response, and tiny clues that unlock meaningful engagement.
We empower families to carefully observe and track the moments of calm or distress in their loved one’s day. We teach them to catch the clues from their loved one’s gestures, words, and situations that promote or prevent contentment. This ongoing documentation is not mere recordkeeping for care partners who otherwise have plenty to do! The documenting and tracking become the roadmap that guides pursuit. It gives care partners practical consent to repeat what works, and release what doesn’t, with the realization that keeping up with the dementia means lifelong readjusting with agility.
Along with ongoing observation, we encourage care partners to consider the backstory of their loved one, completing a document specifically designed to help them uncover links to their loved one’s unique past. The process of considering their loved one’s history helps care partners discover how to leverage treasured memories, comfortable routines, and defining experiences so the present makes more sense for their loved one. The combination of the backstory and ongoing observation culminates with families developing a simple, yet powerful, condensed, one-page Dementia Together passport—a distillation of key personal information and explanations that can be used by any care team member to foster lifelong engagement and well-being. The passport is crucial when families are navigating transitions and growing the care team for their loved one.
When care partners learn the simple general strategies we teach at Dementia Together and engage in The Personal Roadmap™ process to incorporate their loved one’s specific, unique history and preferences, well-being become entirely possible even when dementia is part of the life journey. It requires a commitment to never stop looking, never stop seeking the person who might seem lost. Love, in its truest form, relentlessly pursues the well-being of another. A Dementia Together care partner described the Dementia Together approach to care for her mom, saying, “Really, it’s just love.”
At Dementia Together, our priority is to equip family care partners to strategically and compassionately pursue their loved one—learning what works, and letting go of what doesn’t. While care partners focus on their loved one, we are dedicated to offering them:
Support – providing the positive backup and reassurance families need to prevent loneliness and isolation
Perspective – seeing each situation through the eyes of the person living with dementia
Enlightenment – illuminating new counter-intuitive pathways and understanding
Connection – forging bonds through meaningful engagement, laughter, tears, and friendship with others also navigating the co-existence of grief and joy
Acceptance – embracing the present reality with grace
Loyalty – steadfastly remaining by the side of those we serve as they strive to love and care well, no matter what changes dementia may bring.
At Dementia Together, we believe no one should have to walk the dementia journey alone. We may not do it perfectly, but with every lesson we share, every strategy we teach, and every moment we honor, we are holding up the lamp, sweeping every corner—committed to the pursuit, and to the promise that everyone deserves to be found, over and over again.
Written by Cyndy Hunt Luzinski, MS, RN