How a Family Dementia Journey Led to a Lifeline for Caregivers
Ann Wheat still remembers the overwhelming feeling of helplessness when she learned her older sister Liba, only 50 years old, had a rare form of dementia, Posterior Cortical Atrophy.
Huddled together on their couch in a darkened room, Ann’s parents gave her the devastating news. Liba had received the diagnosis that same day – on her birthday.
“Then my mother said to me, ‘you’re the second oldest, and now you’re in charge, and we’re counting on you to get us through,’” Ann remembers. “And I had never dealt with this kind of thing at all. My heart was shredded.”
Her experience with Liba ultimately led her to a job running support groups at Duet. One day, a caregiver in one of the groups told Ann about Dr. Pauline Boss’ book, Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief. “I read it and … it felt like a tectonic shift in my framing,” said Ann, who is now Duet’s executive director.
Recently, Ann and Dr. Boss sat down for a conversation about how Ann’s experience with the book evolved into what’s now Duet’s Finding Meaning and Hope discussion series, which helps dementia caregivers around the country develop resilience and lower stress.
Dr. Boss is known as a pioneer in the interdisciplinary study of family stress. In her book, she delves into the concept of ambiguous loss, a term she coined in the 70’s for a previously unrecognized form of complex grief. It can take many forms. For dementia caregivers, it means grieving the gradual psychological disappearance of a loved one who remains physically present.
“I just had the idea that maybe if I could find a way to get to you, we could videotape you sharing the lessons of your book, chapter by chapter, with real life family caregivers,” Ann told Dr. Boss. “And you were kind enough to say yes and take a chance on a little nonprofit out west that you’d never heard about.”
Thanks to funding from Virginia G. Piper Charitable Trust, Duet was able to fund the professional production costs to create the Finding Meaning and Hope series. Dr. Boss flew to Arizona for two weeks of filming, meeting with a different group of caregivers for each of the 9 chapters. Speaking to caregivers directly rather than through her writing was a new experience for Dr. Boss.
Originally, Finding Meaning and Hope was only offered in person, throughout Arizona. But during the COVID-19 pandemic, it became virtual, allowing the program to reach caregivers around the country. Today there are both in-person and online options. The course has also been translated into Spanish and is even available through a Navajo nonprofit organization.
“I’m just humbled by that,” Dr. Boss said. “I couldn’t have imagined this would come of those early videotapes.”
The credits at the end of each video include an acknowledgement of Liba for her part in inspiring the series. Liba passed away in 2017 after a battle with dementia that lasted more than 10 years.
“I think about her all the time,” Ann said. “I still miss her. It has certainly given me meaning and hope in my life to be able to work with such wonderful people at Duet and so many volunteers out there now, to share this with others and bring it forward. It’s just been a real blessing and gift to me.”
A new Finding Meaning and Hope session recently started; there will be two more – one in-person – later this year. Learn more.
About Sandra Pedicini
Sandra Pedicini is a Duet volunteer caregiver mentor and writes about aging and caregiving issues. She is a former newspaper journalist and works as a corporate communications manager.
