I’m the father of Lynne, my 54-year-old daughter with moderate-to-severe dementia from Alzheimer’s. I’ve told her many times I want to write her story because she inspires me. Recently, I told her I’ve read many ways authors write blogs: people with dementia, female wives writing about their male husbands, fewer males writing about their female wives, children writing about their parents, professional caregivers writing about caring for persons with dementia and counselors advising caregivers caring for family members. I’ve haven’t found many parents caring for their child. I’ve wanted to share our story and I wanted her knowledge and support.
She said, “I think it should be written from the person’s perspective,” meaning the person with dementia. I was stunned into silence. I don’t believe she can write it at this time. I don’t believe it’s possible now to claim I can write her story from her perspective. I told her about a /caregiver/blogger who shares her blog with a journalist who writes and advocates for Alzheimer’s awareness. The caregiver is Christy Turner, the Dementia Sherpa, https://dementiasherpa.com/category/podcast/. On The Alzheimer’s Podcast, she’ has a handful of interviews with Phil Curtis. After the interview, Turner posts the interview and the transcript. I envisioned us doing a blog where I share what I’m writing about so she can respond before I post it. She felt OK with that. So that was how I started based on our conversations as we live our lives.
Agreeing on a church
We attended nearby churches to choose one for both of us. She hasn’t attended church for a decade but wants to attend with me. I’ve attended traditional Methodist churches with my wife in which we were always active throughout the week. No churches in walking distance near Lynne’s and my urban apartments have worked, so she wants to attend her church where she liked being a member. I vaguely remembered attending with several hundred welcoming people who reminded me of a service club listening to an opaque theology of the mind as a substitute for a faith and a mission. And it could be a traffic-clogged drive if we attended during the week. Lynne couldn’t remember the name or location, but she liked the minister. She instantly recalled her minister’s name and how to spell it. I owed it to her to jointly attend if I could find it on the Internet.
The minister’s name popped up in an Internet search. She’s a Spiritual Director, whatever that means, at a spiritual center at a new location 15-20 minutes away on a Sunday morning. Any drive during the week would be a traffic snarled commute. We attended early and I deliberately took the opportunity to re-introduce Lynne to the pastor as a former member. I was disappointed at her blank stare at Lynne because I assume any pastor would remember Lynne. That’s unfair of course, but the pastor didn’t show any interest in asking Lynne about her membership and family. As a Dad, I wanted her to show sincere, if brief, interest. Lynne didn’t seem to mind. The pastor’s message was on the joy of giving to the center’s annual membership drive by marching up and dropping our pledge card in the basket. I made a donation but held on to our pledge card. I called the Center and updated Lynne’s address still on file. We’re attending now, and even attended a membership orientation which emphasized the Center’s support for all faiths. Lynne said the basic principles were too “woo-woo” for her. I agree. I still have the pledge card. I pray and read Christian literature every morning. Lynne wants to attend every Sunday. “You don’t have to be a member of my church,” she said. Not attending with her feels like abandoning her because she couldn’t attend on her own. We have fun. We always get a message. It’s a very active congregation with multiple pastors. And we stop by her sons’ workplace to order a milkshake on the way home.
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