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Book aims to help dementia caregivers cope (UMCom)

July 25, 2022

Imagine you’re a husband taking care of a partner who is slipping away because of Alzheimer’s disease. 

“This one gentleman said to me, ‘You know what I would like? I would like someone to come and wash my wife’s hair. I’ve never washed a woman’s hair in my life,’” recalled Elizabeth Shulman, a United Methodist who’s been a pastor, university researcher and health care chaplain over her 30-year career. 

She is the author of “Finding Sanctuary in the Midst of Alzheimer’s: A Spiritual Guide for Families Facing Dementia.” The book features group exercises to empower caregivers and to help congregations be in ministry with them.

“I’ve experienced that people are happy to help out, but they don’t know exactly how,” Shulman said in an interview with United Methodist News. “With this book, I have a section on asking for help, how you do that.”

Lori Lamm, a member of New Beginnings Community Church in San Jose, California, takes care of her husband, who suffers with dementia. She has led a dementia caregiver group at the church for the past two years and has used some of the activities in Shulman’s book.

“Dementia is a really scary, scary disease, and people don’t want to be a part of it,” Lamm said. “They say, ‘I will pray for you’ from a distance, but rarely want to engage with that.”

To counter the normal depression a caregiver goes through, Shulman encourages them to consider that perhaps “God’s chosen you for this.”

With her husband now being cared for at a Veterans Health Administration facility, Lamm believes she has a duty even to his fellow patients when she visits.

“How am I projecting myself to those people?” she asked. “Are they seeing Christ in me? Are they seeing someone sad and depressed and angry and fed up?”

A typical lesson in the book tackles the loneliness and isolation caregivers often experience. It suggests Bible verses in Genesis and the Psalms and group discussions about when participants feel the most alone. 

Retired Bishop Kenneth Carder, who cared for his wife, Linda, for 12 years as she went through dementia before passing away, serves as the chaplain at a memory care unit in South Carolina.

“I reviewed (Shulman’s) book in manuscript, and I think she’s doing good work,” Carder said. “She’s one of a growing number of people I see who are getting involved in (caregiver ministry) congregations.”

Dementia starts with perplexing changes in a person that may be embarrassing, such as becoming defensive or aggressive or not taking care of personal hygiene, Shulman said.

“For spouses, it’s very difficult because you’re losing the very person that you would turn to for support,” she said. “I have found that a lot of people try to cover things up to kind of protect their loved ones, so they don’t really share what’s going on.”

But many times, family members or friends sense that something is wrong.

“To find people that you can share your experience with can really take some of the burden off, because I think caregiving is a very lonely experience for many people,” she said.

United Methodists today have an average age of around 57 or 58 years old, about 20 years older than the general population, Carder said. 

“One out of nine persons over 65 have some form of cognitive impairment, other than just normal aging,” he added.