Woman Turns Mother's Alzheimer's Journal Into Inspiring Book
LAFAYETTE, La. (AP) — Paula Sarver's mother no longer speaks, but she still has her words in journals dating as far back as 1980.
The first mention of the "dreaded A-word" — Alzheimer's — comes in a 2000 journal.
Sarver found the books in 2015 when cleaning the house after her mother, Beverly Mire, entered a Lafayette memory-care facility.
Sarver used the journals to piece together and understand her mother's journey with the disease. She added her own words when it was an experience she remembered, often differently than Beverly did.
The writing process was personal and therapeutic and resulted in a book to be published Sept. 26, just days before Lafayette's annual Walk to End Alzheimer's.
"People need to know this is common, that people are living through this the way you are," Sarver said. ". That's why we put this out there."
The journals started as Beverly's response to prayer and scripture.
"Mom was very, very much leaning on Christ our whole lives," Sarver said. "She would constantly write in prayer journals. She would take the daily scripture, pray on it and write about her prayer experience."
The prayers mixed with thoughts about Alzheimer's in later years. Beverly recognized the signs, having taken care of her parents. She knew the potential of developing the disease herself.
"Even when she was caring for her parents, she would make comments about 'when I get like this, if I get like this' and what to do," Sarver said. "It was really hard to take at that point, but then that's exactly what happened."
Those comments later helped Sarver and her family make the decision to put Beverly, now 76, in a memory care unit.
It was still a difficult decision.
"When your mind gets to this way, they don't understand why you're doing this," Sarver said. "… To put your loved one into a home is, in a way, giving up on them."
Her dad felt this especially, remembering his vows to take care of his bride, Sarver said. He did that — until he couldn't.
"Dad had been taking the brunt of everything," Sarver said.
Now he visits her at least three times a day, usually for meals, and they walk together.
"He just loves her," Sarver said.
The family had tried home health first, but Beverly had become paranoid and irrational. She didn't want her husband, Paul, to leave her alone with a "stranger." They could see she needed more than in-home care.
In time, most people became strangers to Beverly. She wrote about how she felt like she was living in the movie "Groundhog Day," having to start anew in every conversation. She had no history to pull from when talking to someone she might have known for years.
Her mother wrote about the internal struggle that is living with Alzheimer's, mostly in the journals from 2007 and 2008, Sarver said. She called it an evil inside of her.
She wrote, "Should I retire from companionship?" Sarver said.
"That was new to me," the daughter said. "She actually realized."
Sarver discovered many differences in perspective as she explored her mother's writing. Beverly wrote about people ignoring her and worried she was annoying them.
But what Sarver saw was people caring for her mother and wanting to help. And sometimes they would back off as Beverly pulled away.
"She didn't want pity or to limit herself," Sarver said. "… She wanted to live her life the best way she could."
That meant working — for local churches, the Diocese of Lafayette, leading women's retreats, teaching classes — as long as she could. She stopped after she began to miss appointments or forget the lesson despite extra practice, Sarver said.
Sarver started writing these things down as her own therapy sessions, processing and trying to understand what her mother had experienced.
Like her mother, she wrote and prayed. She constantly questioned whether these words were meant for only her, her family or a greater audience.
Through a coworker, she was connected to an independent publisher, who told Sarver her manuscript could help a lot of people and families understand Alzheimer's better.
But Sarver turned to her mother's journal for her answer. Beverly had several "Garden of Gethsemane moments," asking God to take away the disease but submitting to his will over her own, Sarver said.
In one of those moments she wrote "Could my hurt help someone else?"
"This really pushed me to say yes to the book," Sarver said. "… This is still her touching people."
Now the book is set to publish this month through WordCrafts Press.
Sarver and her family are nervous about the book coming out and sharing such a personal experience with the world.
"It's raw," she said. "It's sharing our pain with others. Part of us wants to hide this."
Below is an excerpt from 2006:
2 Corinthians 6:2
For he says, 'In the time of my favor I heard you, and in the day of salvation I helped you.' I tell you, now is the time of God's favor, now is the day of salvation.
(Beverly) My Jesus, I long for this day of salvation. A day that I can feel myself whole again body and mind working in tandem, being at peace. I long to trust in what I'm saying and thinking as what is proper, valid, on target. It is so lonely to live in this place of not knowing, not remembering. I am forced to live in the moment, but a moment means not always having a history bank from which to draw. There are times for me that I am like the man in "Ground Hog Day." I have to begin anew each time. I need to be reminded over and over again.
(Sarver) Conversations with Mom did become more and more difficult. When she contributed, her comments were off. She tried using cues from her surroundings to be part of the conversations. She told stories. I don't know where the stories came from, but I don't believe she made them up completely. She believed what she was saying. It was as if she was piecing together events that had happened at different points in her life and putting it together into one mixed up story that was difficult to follow. She would repeat her story within just a few minutes of saying it or even repeat a story another person just said as if it were her idea and had not been said. She craved interaction with others, but struggled with her ability to socialize. If someone tried to correct her, she would look very hurt and not say anything else. To mention that she had already told the story would have been to add insult to injury, so everyone went along. Besides, she told stories with so much enthusiasm, we allowed her have her moment. A story I remember she repeated over and over was about one of her landlord when she was a young adult who had several cats. This woman would stick out her tongue and touch her nose like the cats did. Mom always demonstrated with her tongue stretching out to touch her nose. She repeated this same story over and over. She would laugh and laugh at the thought. I wonder if she had that story correct?
Beverly stopped writing her journal entries in 2010. Her handwriting had deteriorated and she couldn't get her ideas down anymore, Sarver said.
In places, she wrote backward, upside down or using incomplete or out-of-order sentences.
One entry said "Paula" and next to it "my daughter's name is," like she was trying to remind herself of the name she had given her child.
Sarver said it's hard to describe how she felt seeing her name like that. All she could say was "wow" in that moment.
"She tried to cope in so many ways," Sarver said of her mother.
Reading the journals solidified that for Sarver.
"It's been extremely therapeutic for me and helped me process what she was going through," she said. "Sometimes it's hard to separate the disease from the person," like the lashing out or irrational behavior from Mom.
She hopes it helps more families like theirs.
There are many.
More than 5 million Americans are living with the disease, and almost two-thirds are women, according to the Alzheimer's Association.
There are about 16 million caregivers of people living with Alzheimer's and other dementias in the United States.
The Acadiana Walk to End Alzheimer's is Saturday, Sept. 29, at Blackham Coliseum. Get more information or register at act.alz.org.
– By LEIGH GUIDRY, AP reporter