MY MOTHER LIVED WITH dementia for more than 20 years. My family members all experienced grief that was deep and complex, yet there were surprising moments with Mom that I found profoundly spiritual. As I spent time with her through the stages of her Alzheimer’s, I experienced a few times when she reached a place more complex and lucid than our understanding of her medical condition might allow.
As a scientist with an interest in chaplaincy, I wondered: What is known about this intersection of dementia and spirituality? What does the church say about dementia? How might all this inform our ministry to those experiencing dementia?
“Dementia” itself is a difficult word. Its origin comes from “de-” (undoing) “mentia” (mind). Already this label stigmatizes a person. A preferred term might be ADRD: Alzheimer’s Disease and Related Diseases. Alzheimer’s is a brain disease thought to cause some 60 to 80 percent of dementia cases. Related diseases include vascular, frontotemporal, and Lewy Bodies types of dementia. All have symptoms of memory loss, cognitive loss, and eventually physical loss (such as the inability to walk), caused by progressive damage and death of brain cells.
Churches in Great Britain, and increasingly in the U.S., have developed ways to become “dementia friendly.” Here are a few suggestions.
- Educate church staff and laity to have at least a basic understanding of dementia and how it affects a person physically, emotionally, and intellectually.
- Ensure that the worship space is safe and welcoming to the elderly and cognitively impaired.
- Provide a volunteer companion for the person with dementia to allow the caregiver to relax a bit and worship.
Growing up, I didn’t think my mother liked me; I know she loved me, but she didn’t know how to handle me. Mom was quiet and melancholy; I was brash and angry. Melancholy and anger were the mechanisms we each used to cope with the family’s dysfunction. But we had little in common. Well, except for the dysfunction.
But I did know my mother loved me. She said she worried about me, she wanted me to be happy; she wanted me to know Jesus. And she prayed for me every day. Every morning as I got ready for school, I passed the den and caught a glimpse of her reading her Bible and praying.
Maybe she wasn’t close to me, but I saw with whom she was close: God. Over time I saw what that friendship did to her. It made her good and kind, even in the face of disappointment and sorrow.
As an adult I tried to get closer to Mom by sharing the things that mattered to me. The first attempt didn’t go so well. I gave her a copy of my MFA thesis screenplay, which was a dark comedy about a dysfunctional family. She never read it.
“I just don’t get it,” she flustered. I think she didn’t understand screenplay formatting.
I got emails from my mom and uncle about Nana, my last living grandparent. The news isn’t great. She’s struggled with dementia for some years now and hasn’t recognized me the last several times I’ve seen her. But while her mind has been betraying her for a while, it’s her health now that seems to hang in the balance.
Not that it’s a surprise at ninety years old. And it’s also not like we’re particularly close anymore. Aside from living 700 milers away, it’s hard to have much of a relationship with someone who has no idea who you are. But there’s something about knowing she’s close to the end of her life that really freaked me out last night.
When I was a little guy, I had three great grandparents that I remember visiting. They all smelled funny and talked constantly about stuff I didn’t understand, but I got that they were family. I’d visit Pappy and Sweetie, who lived in a trailer home on the Mississippi River; Granny Hagen had her own house for a few years, and then she got moved into one of those silos where people wait to die. Yes, there are some retirement facilities that actually have signs of life in them, but this wasn’t one of them. My mom’s family was pretty poor, and things like retirement and end-of-life planning weren’t a particularly high priority.
Their deaths didn’t bother me too much. I didn’t like seeing my parents sad, but that was about it. I’d miss the candy corns and balloons Pappy always gave me (he called candy corns “duck butters” because when he’d feed them to the ducks, their butts would stick up in the air when they reached down to eat them). But my grandparents were the ones I actually knew as people.
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