As Memory Fades, Journaling Preserves Stories, Raises Awareness
Mark Applegate works for the local SeniorAge Area Agency on Aging. He writes a blog called "Digital Cornbread," which just passed its one-year anniversary online back in March, when we first started working on these KSMU "Sense of Community" stories.
In it, he chronicles the journey he, his sister, Pam Lavin, their stepfather, John Alexander, and their mother, Brenda, have taken since Brenda went into a nursing home in Republic because of advancing Alzheimer's Disease.
Until fairly recently, Brenda enjoyed playing the piano at the facility. I visited Mark, Brenda and John at Brenda's nursing home on March 11th and asked Mark about writing the blog.
"My thinking with it," Applegate said, "is it's a means of making lemonade out of lemons. Or, I put, I think, on the blog, 'lemonade out of artichokes.' Sometimes it's not really easy to find the silver lining in things, but I try really hard not to have them all be sad. So I try to focus on the positive stuff."
In well over 400 blog entries and counting, Mark Applegate focuses on the positive when he can, and occasionally vents about the negative. And it provides an important service for both Mark and his readers, says Kristen Hilty, care consultant for the Alzheimer's Association Springfield office.
Hilty says as Alzheimer's and other forms of dementia can serve to isolate both patients and their caregivers, "it's very cathartic" to be able to write about the experience.
"It allows you to kind of be more 'public' and kind of share those raw feelings in a more personal way. And I think it certainly would help people who are reading it to kind of feel like, 'I'm not alone.' It kind of brings them together in a way that other types of communication might not," Hilty said.
Mark Applegate agrees. "The blog has helped me process things. So it gives me an opportunity to talk someone's leg off. And I've got 6,300 people now that can talk their legs off--and that's just the subscribers. I don't know how many people actually have seen it; a lot of people have seen it. Like I said, I keep it positive. So we don't always talk about just the sad stuff. It's a big driving force for the blog. I want to help people," Applegate said.
A troubling note on a mother's diagnosis
Back in 2007, Brenda Alexander had lost both her parents in a short space of time. She had trouble coping. So she spent a week as an inpatient at the Marian Center in Springfield undergoing extensive psychological testing.
She came through it well, but as son Mark Applegate said, there was a note on the diagnosis that was troubling.
"Almost a side note at the bottom was something to the effect of, 'she had a mild form of dementia,'" Applegate said, adding that he feels that phrase "is kind of an oxymoron."
He says the diagnosis "fell off the radar" because Brenda wasn't showing noticeable signs of impairment. After about four or five years, the family began noticing more so-called "senior moments." And it's important to note: dementia is not a normal or healthy part of aging.
Physically, Brenda was healthy: she ate well. She exercised. And that probably extended what Applegate calls her "early stage" period of milder dementia symptoms.
But by 2018, there were safety issues. Brenda needed round-the-clock care, of a kind. Her husband, John, was unable to provide that at home. So the decision was made to move Brenda into the memory care facility where she now lives.
Loving his mother through a screen during the pandemic
Mark Applegate has chronicled the progression of Brenda's Alzheimer's Disease in his Digital Cornbread blog, based largely on his several visits with his mom every week.
But the day after I went there and interviewed him, March 12th, 2020, came the coronavirus lockdown: no physical visits allowed due to the Coronavirus pandemic. Recently, I checked in with Mark in a Zoom interview, to see how he and his mom are faring without face-to-face contact.
"For us there," he said, "it means I've been unable to go into the building since then."
He's had to make do with phone calls to her hospice nurse and the nursing staff at the facility to check on her progress, and video conferencing software, so he and his mom at least can see and hear each other.
“So I call in two or three days a week and they give me a 15 minute block on their app. I can see face to face, we talk and everything. She's in a position right now, health-wise, [where] she can't process what a flat, talking device is that's talking to her. But I think she can understand that it's me, or at least she recognizes my voice and the things I say and everything," Applegate said.
As for the overall effect the virtual visits have on Brenda's mood and well-being, Mark Applegate is realistic.
"I don't know how important it is to her this point. It makes her happy, I think. But I think it's more important to us, probably. They have limited blocks because everyone there wants to do it. So you can hop on there and pre-schedule it for yourself and everything. And I grab spots whenever I can," Applegate said.
Mark says he's able to video chat with his mother, Brenda, roughly two or three times a week. Unfortunately, stepdad John Alexander doesn't even have that luxury, according to Applegate.
"My stepdad was there three times a day for 18 months. He doesn't use computers, so he pretty much just calls and checks on her," Applegate said. He calls John most days to give him updates.
Mark told us he is afraid he may not see his mom face to face again.
"The only situation in which they'll let me see her is if death is imminent, you know? So therefore, I kind of hope I don't get to see her face to face until we get through this thing. It's a sad way of putting it a little bit, but it's the truth," he said.
You can read Mark Applegate's blog at https://digitalcornbread.com.