Terri Pease, PhD, shared her Parkinson’s care partner story at the recent Parkinson Association of Northern California (PANC) conference. She was a caregiver for her husband Peter, who had PD. Over time, she learned that Parkinson’s introduces two entities into relationships—a “thief” that steals vital aspects of life like sleep, thinking, elimination, affection, learning, and sex, and a “liar” that distorts reality and breaks down trust. These challenges make caregiving difficult, but with the right approach, it is possible to stay connected in the relationship. We at Stanford Parkinson’s Community Outreach attended her talk virtually, and are sharing our notes.
Terri said that the key to preserving their relationship bond was in exchanging permission and trust. Peter had to give her permission to care for him, and she had to trust that he was doing the best he could, even when his actions didn’t make sense. By understanding that the Parkinson’s was responsible for his actions and not Peter himself, she could respond with compassion.
In Peter’s final years in a memory care facility, they continued to openly communicate. She shares her story to help others in similar situations realize that, while Parkinson’s is a difficult road, it doesn’t have to destroy relationships. With trust, communication, and care, even the most challenging moments can still be filled with warmth, comfort, and connection.
One of the members of a Stanford-led Parkinson’s caregiver-only support group introduced us to Terri and her book “Love, Dignity, and Parkinson’s: From Care Partner to Caregiver.” Stanford’s Denise Dagan reviewed the book; her notes are posted here.
Early next year the recording of the conference, including Terri’s talk, will be made available free to everyone. If you’d like to watch the conference recording now, including Terri’s talk, it is available for a recommended donation of $20 using this PANC recording link.
You can find out more information on Terri Pease, PhD, and her resources for caregivers on her website.
You can find more information for PD caregivers on the Stanford Parkinson’s Community Outreach website.And now, on with my notes.
– Elizabeth
“The Thief and the Liar: A Parkinson’s Story”
Speaker: Terri Pease, Ph.D.
Host: Parkinson Association of Northern California (PANC)
Conference Date: September 28, 2024
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Caregiving Journey and Diagnosis
I was a caregiver for my husband, Peter, who had Parkinson’s disease. About halfway into being a caregiver, I was diagnosed with colon cancer, which was very scary.
Shortly after my diagnosis, Peter said, “I know you have colon cancer, and I know I should care, but I don’t.” This was shocking and discouraging, but I understood it was Parkinson’s, not him.
Fortunately, I had developed some insights about being a caregiver and Parkinson’s, which meant that I understood what was really happening.
Marriage and Challenges
We had a wonderful marriage, and Peter was a great person, but Parkinson’s added challenges. My marriage was not always easy, but it was always good.
Fortunately, I had learned about Parkinson’s and caregiving, which helped me understand and manage those difficult moments.
My story is not about a marriage falling apart, but about the impact of Parkinson’s. Parkinson’s is hard, but it doesn’t have to destroy relationships.
The Impact of Parkinson’s on Relationships
I met Peter online. We spent a lot of time emailing and talking before we met in person. When I married Peter, I also became part of a family with his 12-year-old daughter and we became a team.
However, in addition to that team, there were two other figures in our marriage. Many people describe Parkinson’s as a “third party” in their relationships. In my experience, it was more like two entities and these two entities impact your relationship and connection.
#1 The Thief: Parkinson’s steals important aspects of life.
#2 The Liar: Parkinson’s deceives both the person with the disease and their loved ones.
Parkinson’s: The Thief
STEALS: Parkinson’s steals key aspects of life—Sleep, Thinking, Elimination, Affection, Learning, and Sex (in Chapter 3 of book).
Example (Sleep): One night, Peter gripped me in his sleep, thinking he was on a sailboat in a storm. It was frightening, but once I calmed him down and reminded him where he was, we were okay.
Example (Affection): Parkinson’s stole Peter’s ability to give me affection. I cherish the memory of the last genuine hug he gave me.
Parkinson’s: The Liar
Deception in Parkinson’s: Example: The liar convinces the person with Parkinson’s that nothing has changed. Peter once climbed a ladder at 2 a.m. to fix a ceiling fan because he believed he could still do everything as before.
The liar undermines trust and makes it hard for caregivers.
For those with Parkinson’s, it can feel like, “Where’s the love? Where’s the connection we once had?”
Staying Connected Despite Challenges
How do you stay connected? In my experience, the key is an explicit conversation between the caregiver and the person with Parkinson’s, where you exchange permission and trust.
#1 Permission: The person with Parkinson’s must give their caregiver permission to take care of them.
#2 Trust: The caregiver must trust that their loved one with Parkinson’s will do the best they can, even when their actions don’t make sense.
When Peter said, “I don’t care if you have cancer,” I knew it was Parkinson’s brain talking, not him. This realization allowed me to respond differently and maintain our connection despite the challenges.
End-of-Life Journey
The last two years of Peter’s life, he lived in a nearby memory care facility. He trusted me that it was the right decision, even though he wasn’t entirely happy about it.
In Peter’s final weeks, he opened up about his thoughts and what he was experiencing. On the last day of his life, I lay beside him, and he looked up and said, “It’s so beautiful.” It was an honor to accompany him through his final moments. Helping him through that transition was a deeply intimate and precious experience, one that I now look back on with a sense of peace.
Final Insights and Hope
I hope that you find a way to exchange permission and trust.
It’s not just one conversation—it’s many conversations over time.
These exchanges will help sustain your relationship despite the challenges Parkinson’s brings.
Even if your relationship is not perfect, working together can restore warmth, comfort, and connection.
While Parkinson’s relationships aren’t easy, they can still be good.