An interview with Terri Pease, Author and Caregiver Advocate on July 16, 2023 by George Ackerman, Ph.D, J.D.
Biography
Terri Pease Ph.D. is an author and caregiver advocate for people who are caring for someone with Parkinson’s.
Terri is a highly experienced professional in the social services and healthcare industries who has dedicated her working life to helping people who are facing highly stressful situations. She has trained staff in organizations around the United States on offering supportive, empathic, and effective trauma-informed care to those who need it most.
When Terri married her husband, diagnosed with Parkinson’s Disease before they met, she brought her confidence and a wealth of knowledge and experience to bear on caring for him. Her professional experience has informed her approach to caregiving and to encouraging Parkinson’s caregivers to make self-care real, practical, and possible.
She posts information, support, and resources at www.seaburyhouse.com
Please tell me a little about your background.
I joined the world of Parkinson’s when I married my husband who was living with the condition when we met. Only partially aware of the challenges that lay ahead, I learned and grew as the years passed, gaining valuable insights into the realm of Parkinson’s care.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Currently, I wear multiple hats as a coach, consultant, and author. In 2022, I authored a book titled “Love, Dignity, and Parkinson’s: From Care Partner to Caregiver.” This book was born out of a combination of my professional experience along with my own caregiving experience, and it aims to provide the support and guidance I wished I had during that time. I strongly believe that empowering caregivers not only benefits them but also greatly impacts the lives of those with Parkinson’s.
What type of goals do individuals with Parkinson’s have when working with you?
My primary passion lies in advocating for Parkinson’s-affected households, working with them on an individual basis. Beyond writing my book, I offer personalized support to caregivers and have plans to launch drop-in group coaching sessions for primary caregivers later this year. Moreover, my focus extends to addressing the critical role of secondary caregivers, such as family, friends, and community connections, in supporting the mental and physical well-being of primary caregivers.
What would you like to see as a future goal for caregiving and advocacy?
The number of Parkinson’s diagnoses continues to rise, with approximately 90,000 new cases each year. Most people with PD have a primary caregiver. As the incidence of the condition increases, so does the need for support and care from secondary caregivers. Acknowledging the significance of family caregivers is crucial to enhancing the lives of those living with Parkinson’s.
What events do you participate in?
While my work currently revolves around assisting individual families impacted by Parkinson’s, my vision for the future involves collaborating with local support and advocacy organizations, as well as engaging with religious communities. Additionally, I aim to expand my efforts into public policy work to promote greater national recognition and support for PD caregivers.
How can someone get in touch? What is your website?
@terripeasephd
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
When we don’t provide adequate support and empowerment to primary caregivers, we are ultimately letting down individuals with Parkinson’s as well.
Seabury House
Caring
At Seabury House Caregivers Come First. We believe if caregivers are supported, nurtured, and informed they’ll be giving their Loved One the good care that they deserve. If we help care for you, you’ll care for them.
Knowledge
We believe there is strength in knowing facts from fiction. Not enough is out there to support family caregivers. Not enough is out there to support paid in-home caregivers. Seabury House is where you can become more informed.
Honesty
We don’t believe in soft-pedaling the tough realities of caring for a loved one with a chronic and debilitating condition. Honest and straightforward talk about the commitment and effort it takes to be a caregiver creates change.
Resourcefulness
There are many resources out there to help you understand your Loved One’s condition, his or her needs, and to enlist the services that are available to you. These four R’s are important to us: Resources, Research, Reflection, Respite.