Parkinson’s Caregiving and Holding on to Love with Terri Pease

In this episode of The Art of Imperfect Adulting, Amy Stone speaks with Terri Pease about the emotional realities, challenges, and unexpected joys of loving someone with Parkinson’s disease. Joining the conversation from Yarmouth, Maine, Terri opens up about her late-in-life marriage, building a life with her husband while navigating the relentless progression of Parkinson’s, and how caregiving transformed her understanding of love, loss, and support. Listeners will hear how Terri found unexpected strength, candid reflections on relationships changed by illness, and practical wisdom on sustaining dignity.

Terri Pease PhD worked in academics, social services and health care all her professional life. When Terri married her husband who had Parkinson's Disease, she brought her wealth of knowledge and experience to bear on caring for him. That professional experience has informed her approach to caregiving, and to encouraging Parkinson's caregivers to make the idea of self-care real, practical and possible. As the author of Love, Dignity, and Parkinson’s: from Care Partner to Caregiver she has become the online voice for the more than 60,000 new Parkinson’s spousal caregivers who each year start on this long and challenging path.

Main Topics Covered:

1. Understanding the unpredictable journey of Parkinson’s disease and its impact on both the diagnosed and loved ones.
2. Navigating the isolation and emotional overwhelm often experienced by Parkinson’s caregivers, especially partners and spouses.
3. The importance of community, connection, and finding “enough similarity” in shared experiences, even amidst unique circumstances.
4. Maintaining dignity for both the person with Parkinson’s and the caregiver—and why this is central to long-term caregiving relationships.
5. The complex emotions of loss, frustration, and grief as a partner’s capabilities and personality change over time.
6. Coping with changes in intimacy, partnership, and reciprocal support within a marriage affected by neurodegenerative illness.
7. Why communities and support systems often fall short—and creative ways caregivers can find connection and help.
8. Lessons learned on acceptance, letting go, and being present through the end of life.

Quote from the Episode: “When I was able to say to myself, he has nothing for you, that meant I could stop looking for him to be the husband that I had married…and when that happened, I was able to think differently about what is happening here. What are we here?” — Terri Pease

Timestamps: [00:00:07] Welcome & intros; Terri’s home in Yarmouth, Maine; opera as shared art and connection

[00:01:27] Introducing the day’s topic: Loving someone with Parkinson’s disease

[00:02:48] Terri shares how she met her husband and the early awareness of his Parkinson’s diagnosis

[00:03:24] What Terri knew (and didn’t know) about Parkinson’s at the start

[00:04:11] Explaining Parkinson’s disease for those unfamiliar—its unpredictable, individualized course

[00:05:20] How Parkinson’s impacts emotions, personality, and behavior, not just mobility

[00:06:18] The gap between common perceptions and caregivers’ lived experiences

[00:08:02] The role of loneliness and why peer caregiver support is so powerful

[00:10:29] Comparing caregiving to early parenthood—the similarities and crucial differences

[00:11:53] Examining societal expectations, visibility, and (lack of) communal support for adult caregiving

[00:13:24] Cultural contrasts: communal care in other countries vs. isolation in US aging

[00:15:11] Dreams of retirement, sailing, and how Parkinson’s stole shared plans

[00:18:08] Scaffolding, adapting activities, and supporting dignity as abilities decline

[00:19:54] The subtle onset of symptoms and the slow, unpredictable losses

[00:22:00] What surprised Terri most—changes in judgment, writing, and emotional availability

[00:24:00] Navigating deeply personal topics (e.g., incontinence, loss of privacy) and sustaining dignity

[00:26:12] The emotional toll—grappling with loneliness, resentment, and the transformation of partnership

[00:30:16] Lack of support from community, religious groups, and adjusting expectations for help

[00:35:20] Nine years together: the timeline of joy and progressive challenges

[00:36:15] Finding slivers of joy, humor, and connection, even late in illness

[00:38:30] Advice for others: preparing for death, honest conversations, and staying present

[00:40:27] A powerful moment of acceptance and comfort at the end of life

[00:41:48] Terri’s work today: writing, her book (“Love, Dignity, and Parkinson’s”), and helping other caregivers

[00:43:53] Where to find Terri, offer for listeners, and final lighthearted questions about life and joy

ABOUT THE SHOW: The Art of Imperfect Adulting elevates the voices of experience by sharing real stories from real people figuring out adult life. Every episode features honest conversations about life's choices, changes, and challenges—interviews with individuals (not celebrities) who share their personal experiences and insights. Through these authentic stories, listeners find validation, motivation, and inspiration for navigating their own path through modern life. Because there's a big difference between expert advice and shared experience, and hearing another person's lived experience helps us feel less alone in our own situations.

CONNECT WITH THE GUEST: https://terripease.com

GET TERRI PEASE'S SPECIAL OFFER: Love, Dignity and Parkinson's: from Care Partner to Caregiver available here: https://bookshop.org/a/87491/9798986700106

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