Finding Faith in Caregiving

By Karmen Robinson

He was just 54 years old when he was diagnosed early with frontotemporal dementia in 2010.

“I expected something like this to happen to an older person, but after I read and studied about it, I learned there have been people in their 20s and 30s with dementia,” said Booker, 59.

Mike and Margaret Booker

Mike and Margaret Booker

Mike Booker, now 64, worked as a mechanic and service manager for decades. He typically repaired cars, trucks, airplanes and forklifts.

“If it had a motor in it, he could get it going,” she said.

With his love for trucks, Mike rebuilt three of them on his own, so when he couldn’t fix the brakes, Margaret Booker knew something wasn’t right with her husband.

Mrs. Booker is a paraprofessional at Cabot High School and has worked there since 2002. She confided in a colleague when her husband started exhibiting the uncharacteristic behavior, in addition to other symptoms, like forgetting words.

“He just didn’t do things like he normally would. It was like he was trying to cut corners, or save money or just didn’t know what he was doing,” said Booker. “He would say, ‘I can’t think like I used to. My brain’s not working.’”

Margaret Booker said of her husband, “He handled it pretty well. If I pointed something out to him, we’d sort of laugh it off. He knew what was happening, and we were just dealing with it.”

Mrs. Booker’s co-worker, Sherry Blair, whose husband was diagnosed with frontotemporal dementia (FTD) two years earlier, suggested Mike might need an MRI of his brain to diagnose Alzheimer’s disease or another dementia. A geriatrician familiar with FTD diagnosed Mike Booker.

FTD primarily affects the brain’s frontal and temporal lobes, which are areas most commonly associated with behavior, language and personality, explaining Mike Booker’s symptoms.

“After learning of his condition, I read about a Dementia Caregivers Workshop at the UAMS Donald W. Reynolds Institute on Aging,” she said. “The Schmieding Home Caregiver Training offered a Saturday four-hour workshop for free.”

“I registered with APRN Donna LeBlanc who taught ‘Caregivers of People Living With Dementia.’ It was so helpful and mostly let me know that I was not alone. Resources were available,” Booker said. “I met with other caregivers, many were much older than Mike or me. Donna and I would schedule phone visits, and I would describe Mike’s behavior and she would guide me how to positively respond. Many techniques I learned worked well, some did not. Donna was so knowledgeable and passionate about what she did that it helped me to be patient with the behavior changes Mike was exhibiting.”

For Mrs. Booker, continuing to work has been difficult because she can’t leave her husband alone at home as his judgment is affected by this disease.

He stopped working in 2013, and Booker said her husband’s dementia is becoming more challenging to manage as it advances.

“He’s the type of person who’s not going to let you do anything for him. He’s always been one to take care of things, and for you to try to take care of him is not so easy,” said Booker.

Ironically, a visit to her own doctor turned into a pivotal moment for the married couple of 32 years, refining Booker’s perspective of their lives and her husband’s diagnosis.

“I told my doctor about Mike’s condition, and he asked me if I went to church. I said no. I didn’t go regularly,” she said.

“He told me I should find a church that preaches what the Bible says and that I needed to get into a relationship with God and listen to where He led me on how to deal with Mike.”

She began visiting churches, and when she found one to call home, she started attending services on Sunday mornings and evenings and Wednesday nights. She was baptized in 2013. Mike started going to church with her and he was baptized in 2018.

Booker said church is the only place her husband feels comfortable around crowds.

“Mike goes up to people and tells them he loves them. That’s something he would’ve never done before,” she laughed.

While Booker allows her faith to lead her, she said their family works to adjust to Mike’s changing state. The couple has two children, Dawn, 38, and Michael, 31, who each have families of their own.

Booker said her husband has recently struggled with reading words, specifically on his phone, but it hasn’t halted his effort in enhancing his personal relationship with God.

“I hear him in there reading the Bible every day, and he’s been doing that ever since he’s been going to church,” she said.

In addition to her faith, Booker relied on training she received from the UAMS Schmieding Caregiver SUCCESS training program. The SUCCESS program is designed to offer caregivers the support and resources they need to care for loved ones with dementia.

Booker also had previous experience in a caregiving role. Years ago, Booker served as a caregiver for her grandmother, who lived with the couple before passing away in 2009. Booker’s experience with her grandmother helped prepare her.

“One of things my grandmother used to tell me growing up was that I didn’t have patience, and I knew I didn’t. But with dementia, you’ve got to have patience,” she said.

“This disease doesn’t affect everybody the same way. If you’ve not been there, you don’t know what they’re going through,” she continued. “You have to know what you’re dealing with and see what works for both for you.”

Being together has proven to work best for the Bookers. In 2019, Mike Booker escaped a nursing home after living there for only three weeks, which was when he also stopped driving.

The couple’s daughter, Dawn, traveled to Cabot from Calico Rock to care for her father during the day while her mother went to work until Booker was able to find a regular caregiver who could look after him during work hours.

“I want to keep him home as long as I can, but I know there will probably come a time when I have to put him in a facility, and that’s where I’m having a hard time,” she said.

“I try to put it in God’s hands,” said Booker. “I don’t always do everything right, but I don’t stress about it as much. I know I can’t fix everything. I just take care of what I need to for us.”