A woman explained to me that her mother, who has Lewy-Body dementia, had forgotten how much she loved Jesus.
Ella, as I will call her, had always gone to a Baptist church. She wasn’t pushy or overbearing about religion, but it was important to her. She was well-respected at her church for her willingness to prepare food for funerals and help with gardening on the church grounds.
After Ella’s husband died, she relied on her faith and church family even more. When she was diagnosed with Lewy-Body dementia, she told her family that God would get her through that as well….except, as her daughter explained, it didn’t really happen like that.
First, she got in an argument with the pastor of her church. Her daughter wasn’t really sure what the argument was about, but it soured Ella on going to church. A couple of times she went but walked out in the middle of the serm0n muttering to herself. Then she stopped going altogether. People offered to drive her, but she declined. She said she had too much to do around the house.
Her daughter noticed that the “Verse of the Day” calendar that Ella kept in the bathroom had been scribbled on. Ella had crossed out a particular verse and written beside it “No!” in big green letters. Her daughter searched for the significance of why that specific verse was crossed out but came up with nothing. She found other “verses of the day” that had been ripped in half. On one verse, Ella had crossed out “God” and replaced it with “dog.”
The Bible that Ella had kept on her nightstand for years had now been pushed under her bed. When her daughter discovered it, she noticed that it appeared certain pages had been burned with a lighter. After being asked about the Bible, Ella said her daughter “might as well just throw that thing away.” I wondered aloud if Ella had some hallucinations or delusions that might have resulted in her burning her Bible. Her daughter shrugged.
Ella moved to a nursing home and had an opportunity to attend church services every Sunday. However, she had no interest. A pastor from her church (not the same one she argued with) came to visit several times but she had no interest in talking to him. She just sat staring straight ahead. She didn’t even look at him. Eventually the pastor told Ella’s daughter that he would keep Ella on the prayer list but didn’t see a purpose in continuing to visit. A few old church friends came to see and pray with her, and she told her daughter she didn’t want to those “busy bodies” around any more. She was convinced they were badmouthing her to the other members of the church.
“I don’t know if she forgot how important church and faith were to her or is mad at God,” Ella’s daughter told me. “But it breaks my heart that the thing that brought her the most comfort in her life isn’t there for her now when she needs it the most.”
I wasn’t sure what to say. Lewy-Body dementia, like other forms of dementia, makes people apathetic. Things that used to get people excited and engaged lose their impact. Often times, individuals are no longer passionate about what they used to be passionate about. I wish there was some type of exclusion for a person’s faith, spirituality, and religion, but there isn’t. Dementia can take that, too.
David Snowden wrote a book in 2002 called Aging with Grace. It’s about his research on Alzheimer’s disease using Catholic nuns as sample. There is one nun in the book who worries about forgetting God as she develops Alzheimer’s. However, she finds comfort in knowing that God won’t forget her.
I repeated this story to Ella’s daughter, hoping that it would bring her comfort as well. It didn’t.
“But I kinda do feel like God has forgotten her,” she said. “How can God allow her to get a disease that makes her forget Him?”
I didn’t have a good response. And I think that’s okay. I think she just needed a listener–not a religious expert.
This post really isn’t about religion. It’s about dementia.
Here’s my message about dementia today…
Imagine you are fighting one of the greatest battles of your life. You’re facing incredible challenges and struggles. But the coping mechanisms you’ve relied on your whole life aren’t available to you… Maybe that’s your faith. Maybe it’s not. Whatever you used to get through life is–gone. You reach for it, and it’s not there. How do you cope when what you use to cope is no longer an option?
Ella’s daughter and I did figure something out. We found an old CD of hymns and played it for Ella. I can’t say she lit up. She certainly didn’t sing, and she didn’t say much. I don’t even think she smiled. She looked over at the CD player and nodded.
“Should we play hymns again for you, Mom?” Ella’s daughter asked.
Ella responded, “Well, if you like them.”
It was something.
3 thoughts on “Jesus, Faith, and Coping in Dementialand”
Nice piece Elaine, though it’s very sad. Ella’s loss of her faith is an unfair event. I admire your dedication to those afflicted with dementia.
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I’m a pastor, disabled by dementia, possibly Lewy Body. Reading “Ella”‘s story is like having a nightmare for me. It’s my greatest fear: forgetting my faith. I’m at a point where I can no longer attend church because of social faux pas. I retain my faith though, although I miss the sense of support, hope, and joy of attending worship services. I do believe God will not forget me, but I’m afraid I will forget about that.
Jim–That makes me really sad. I always wish I had a comforting response, but I just don’t. I’ve actually seen this happen with several individuals with dementia who were previously very devoted to their religion, and it must be even more challenging as a pastor. My thoughts are with you.
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