A bedside witness

BOULDER, Colorado — Kay Adams, a longtime social worker who counsels and coaches families of dementia patients, delivered a talk on “The Spiritual Journey of Dementia” Thursday during the Presbyterian Older Adult Ministries Network conference that centered three patients with whom she worked.

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One, whom Adams calls Edna in her book “Bedside Witness: Stories of Hope, Healing and Humanity,” had suffered a stroke and had a hard time making herself understood. Still, “Edna was full of joy all the time.” After her meal, she’d often say, “up, up” to Adams, who assumed Edna wanted to return to her second-story room. One day, Edna looked downcast. “I asked how she was feeling and she gave me a sad, kind of pleading look and said, ‘up, up,’” Adams said. She was pointing out the window at the sky. Adams asked, “Do you mean heaven?”

“She smiled and said, ‘go now, up, up. Home. Heaven,” Adams said. “I told her I understood she was telling me she was ready to die. She reached to my face and wiped my tears.”

Adams told Edna how much she meant to her and that “I was in full support of her going ‘up, up’ as comfortably as possible. I took her back to her apartment blissfully unaware it would be the last time I ever did that.”

“Five days later she slipped out of her body to the Pearly Gates. Obviously God had no problem deciphering her language.”

Adams peppered her talk with insights about dementia and caregiving. Two-thirds of Alzheimer’s patients are women. It’s the seventh-leading cause of death in people 65 and older. One in three seniors dies of Alzheimer’s or a related dementia.

By 2031, we’ll need an additional one million health care workers to care for people living with dementia.

Adams asked attendees to pretend they’re wearing a scuba mask. That’s the peripheral vision a dementia patient may experience. She did the same with looking through binoculars as the disease progresses.

She noted caregivers can face guilt and remorse when saying things like, “Don’t ask me that question again!”

“We beat ourselves up for the next few days and feel guilty we can’t be constantly compassionate and kind,” she said. “I don’t know a more isolated group on the planet than dementia caregivers.”

She then told the story of a patient she called Nick, who worked for decades as a crane operator. When he was in his 80s, Nick was always thinking he was late for work. “He would walk up and down the halls of memory care looking for his car,” Adams said.

One day, with Nick seated alongside Adams on a bench, “the clouds parted” for him. “I don’t have a car anymore, do I?” he told her. She told him, “you’re not late for work. You live here now.” The next moment, he returned to, “have you seen my car?”

“I got to see Nick for 30 seconds,” she said. “His soul and his essence were still there.”

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“We need to learn about a person’s history,” Adams said, “to understand who they were before dementia entered the picture and treat them accordingly.”

We can create “kind spaces” for people living with dementia, with signage that’s clear and designate calm areas where they can retreat to if needed, creating “a friendly and forgiving environment where people living with dementia can celebrate their spirituality in community — even if they can’t always remember the social norms and rituals and prayers, or when they’re supposed to talk or not,” Adams said.

Spirituality in dementia care “means reaching for the depths of another person, coming into contact with the core of their authenticity,” she said.

Among the favorites in her book is a woman Adams called Wanda, whom staff identified as “pleasantly confused.” Wanda had a stuffed animal she carried everywhere, thinking it was a real cat.

She started going from room to room in the facility, sitting with people who weren’t yet on hospice care. “It was like she developed a sixth sense of people transitioning,” Adams said. Wanda would hold the patient’s hand and whisper.

“Agitated patients would breathe easier with her there,” Adams said. Wanda no longer had language skills, “but she had this deep-seated knowingness about how to care for her neighbors.” Family members of patients thought it obtrusive at first, “but they came to realize they were witnessing a miracle by this 11^th hour visitor, providing a sacred service.”

“In all my years of hospice work, I never saw another resident do what Wanda did,” Adams said. “I secretly hope somebody like Wanda shuffles into my life when I need it. Anybody want that?” she asked, and most attendees raised their hand.

Adams offered a handful of helpful hints:

• People living with dementia are doing the best they can.
• Join their reality, and don’t force them into yours.
• Establish a relationship based on history, compassion and respect. Remember who the person was.
• Learn about dementia so you can support people living with dementia and their families.

“Learning how to remove the accoutrements with which culture dresses us, we may be able to encounter each other’s souls, including those of people living with dementia,” Adams said. “It’s within the present moment where such encounters can take place.”