Honoring Losses: Ritual and Resilience in Alzheimer’s Caregiving
Sonia Aviles has been a caregiver several times over – first for both of her late parents, and now for her husband David, who is in the later stages of Alzheimer’s disease.
An avid reader, Sonia had already discovered Dr. Pauline Boss’ book Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief even before learning about and deciding to participate in a Duet program based on the book.
Duet’s Finding Meaning and Hope program is a 10-week discussion series that teaches skills to stay strong, healthy, resilient and positive throughout caregiving. Some caregivers go through in-person sessions while others like Sonia, who lives in New Jersey, choose virtual options.
Through Finding Meaning and Hope, Sonia found a community that helped her and motivated her to put the ideas in Dr. Boss’ book into practice.
“The series validates the right to mourn while my spouse is still alive. And that mourning has helped me live my own life more fully and in peace.”
“It made the points more actionable. It made me stop and think through ideas and how I could put them into use,” she said. In addition, “the program also supported my mental health by helping me accept the validity of my feelings.”
One coping mechanism Sonia learned and applied while going through Finding Meaning and Hope was the act of creating a ritual of grief for each milestone marking an ability her husband lost, like reading. Sitting alone in a quiet room, she would journal and reflect on the loss. “I just think of what he had been like before he lost this functionality and the fact that it is gone and it wasn’t going to come back. I would allow myself to feel that sadness.”
That process, she said, “helped me cope by enabling me to move on with those parts of life that we still enjoyed together. I think it helps me accept and move on with life in a more positive manner.”
Sonia notes that a time investment is required to participate in Finding Meaning and Hope. Reading is required in advance of each session and exercises are completed after each one. The time commitment can seem daunting, she said, but the emotional rewards are worth it.
“A caregiver of a spouse with Alzheimer’s experiences a profound loss. We lose our partner, our advisor, our reading partner, and our lover,” Sonia said. “Yet our partner’s body is still there, waiting to be cared for and managed. The series validates the right to mourn while my spouse is still alive. And that mourning has helped me live my own life more fully and in peace.”
There are several Finding Meaning and Hope sessions planned this year; the next one starts July 1. Learn more and register.
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.
