Episode 06 - From Sister to Caregiver: A Conversation with Tami and Donnie
In Episode 6, Tami and Donnie share how they became caregivers and guardians for Tami's younger sister, Lori, after decades of care by her parents and the recent death of their mother. Their story explores sibling caregiving, guardianship, estate planning, and the difference between having a plan on paper and living it every day.
EPISODE SUMMARY
Tami and Donnie share the story of Lori, Tami's younger sister, who was born in 1968 and diagnosed with Rett syndrome around age 20.
For most of Lori's life, her parents carried the daily responsibility of care. After her father died and her mother's health declined, Tami gradually became the person speaking with doctors, managing decisions, and learning every part of Lori's routine. Tami and Donnie describe the emotional complexity of that handoff, especially for a mother who feared that giving up guardianship meant giving up the feeling of being Lori's mom. The legal role could change, but the relationship did not.
The family shares that they were well-prepared. This preparation took honest conversations and early planning before a life event forced a transition in care.
Today, Lori lives with Tami and Donnie. Together they share a life with church, 70s music (Lori’s favorite), baseball stadium trips, and plans to keep seeing the world together. Tami brings medical knowledge and determination; Donnie brings patience, calm, and a willingness to do the heavy lifting.
This conversation reaches far beyond Rett syndrome. It is for parents wondering what comes next, siblings considering future responsibility, spouses entering new caregiving roles, and any family trying to build a life that protects both care and connection.
In the first episode of The Rare Remix Podcast, we're sharing our story. You'll learn about Ava's Rett Syndrome diagnosis, how our lives changed overnight, and the journey that inspired us to create Rare Remix. We discuss the challenges, lessons, and unexpected blessings we've experienced along the way, and why we're passionate about helping other families feel informed, supported, and less alone.