In this episode of Dementia Discussions, I sit down with Lisa Jo, a longtime member of the support group I co-lead at the Mary S. Easton Center for Alzheimer’s Disease Research at UCLA. Lisa has been navigating the complex, emotional, and often overwhelming role of long-distance caregiving, and today she opens up about her mother’s dementia journey, her father’s decline, and what it was like to step into full-time caregiving during one of the most difficult times in her family’s life.

Lisa shares so honestly about the unexpected challenges she faced—sun-downing behaviors, shifting family dynamics, medication management, caregiver burnout, and the heartbreaking realities that arise when a parent no longer recognizes you. She also gives a heartfelt look at the meaningful moments she was able to create with both of her parents during their final years together. Her story is raw, authentic, and full of wisdom for any caregiver walking a similar path.

Episode Highlights:

[00:00] – Lisa describes early signs of her mom’s sun-downing and the moment her mother no longer recognized her.
[00:37] – I welcome listeners to Season 3 and share my gratitude for the community.
[01:31] – Introducing Lisa Jo and her connection to our UCLA support group.
[02:02] – Lisa paints a picture of who her mom was before dementia—independent, outgoing, and full of life.
[03:23] – The beginning of her mother’s cognitive decline and early safety concerns.
[04:40] – The emotional toll on her dad as her mom’s personality and memory shifted.
[05:50] – Life in independent living and when Lisa decided to seek out caregiver support.
[07:02] – Lisa realizes her dad is overwhelmed and begins exploring outside help.
[08:40] – Moving in with her parents for 15 months during her dad’s illness and recognizing the true extent of her mom’s impairment.
[10:38] – Her dad relinquishes caregiving responsibilities as his own health declines.
[12:01] – Balancing full-time remote work while caregiving for both parents.
[14:40] – Challenges in communication, accusations, and emotional upheaval caused by dementia.
[15:50] – A bittersweet moment when her mom mistakes her for “someone familiar.”
[16:50] – Rebuilding an adult relationship with both parents and finding unexpected closeness.
[18:52] – How fortunate timing, flexibility, and family planning made care possible.
[20:00] – Her father’s passing and preparing her mother for the transition to memory care.
[21:37] – Moving her mom into memory care and the thoughtful steps she took to ease the adjustment.
[23:46] – Personalizing the new space with colors, familiar furniture, and meaningful artwork.
[26:07] – Navigating her mom’s grief and repeated questions after her dad’s death.
[28:21] – Using fiblets and reassurance to support her mom emotionally.
[30:58] – Long-distance caregiving today—video calls, late-night reassurance, and new complications with care-facility rules.
[33:18] – Adjusting to limited access and advocating for communication options.
[34:31] – Traveling back East periodically and managing a new diagnosis: multiple myeloma.
[36:06] – How the support group has helped Lisa through education, connection, and emotional release.
[37:30] – Navigating guilt as a long-distance caregiver and honoring her parents’ wishes.
[39:45] – The biggest silver lining—deepening her relationship with both of her parents.
[42:16] – Closing the conversation with gratitude and reflection.

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate,

Navigating Dementia From Afar: Lisa Jo on Caregiving, Grief & Unexpected Blessings