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Missing pieces: Walk brings community together to help solve puzzle of Alzheimer's

Northeast Mississippi Daily Journal - 9/15/2017

Sept. 15--Maldon Griffin was a retired school principal who continued to teach Sunday school. Nancy Murray Ingram was an active community volunteer who was full of laughter.

Their families have watched as Alzheimer's disease and dementia eroded their memories, personalities and abilities.

"They just deteriorate before your eyes," said Holly Rogers, whose mother, Nancy Ingram, died in November after a nine-year battle with Alzheimer's disease.

An estimated 5 million Americans are living with Alzheimer's or another form of dementia. The early signs can be subtle and sometimes only recognizable in hindsight.

"We thought he was just getting older," said Sissie Craft, whose father, Maldon Griffin, now requires skilled nursing care.

On Sept. 23, Northeast Mississippi will step up for the people fighting Alzheimer's and their families at the annual Walk to End Alzheimer's, benefiting the Alzheimer's Association. Registration will start at 8 a.m. followed by a 9:30 ceremony and a 10 a.m. walk at Veterans Park in Tupelo.

"Just about every family in our area has been affected by Alzheimer's disease," said Debbie Hall, walk chairwoman. "The Alzheimer's Association provides support and education for caregivers, research efforts, and advocacy for those living with Alzheimer's. Our Walk to End Alzheimer's helps to fund all these efforts."

More than 200 people and 45 teams are working to raise money through the Northeast Mississippi walk. The event aims to raise $45,000.

There's room for more people to join the cause, said Rachel Etheridge, a walk volunteer. There's no fee to participate. Those who raise $100 or more will earn a Walk to End Alzheimer's T-shirt.

In addition to the walk there will be family-friendly activities with a purple theme to reflect the color of Alzheimer's awareness. The promise garden will honor people with Alzheimer's, caregivers and remember those lost. This year, volunteers are adding one special white flower to the garden.

"This flower will represent the first survivor of Alzheimer's disease," Hall said. "I think everyone can get behind that goal: to see a cure for this dreadful disease in our lifetime."

Finding a new normal

Even as dementia has taken much from Maldon Griffin, there are still flashes of the man he used to be.

"He still has a sense of humor," Craft said. "He still cracks us up."

Griffin, who served as principal of Plantersville School for 36 years, will occasionally lecture his caregivers about a complex science concept, but he's more likely to make the morning announcements.

"Everything revolves around school," Craft said.

In hindsight, the signs that dementia was digging into Griffin's mind were there. He stopped reading books and studying his Bible, Craft said. He lost interest in SEC football and baseball. The longtime Sunday school teacher stepped back when he felt he couldn't do the class justice anymore.

Griffin went into a steep decline when he was hospitalized for gallbladder surgery in 2014, said his wife Carolyn Griffin. He had some confusion about where he was during the hospital stay, but there was a shift in his personality that continued even as he recuperated. He went from laid back and easy going to angry and hostile.

"It just clicked like a light switch," she said. "He didn't want to get out of bed."

Over the next two years, Griffin stabilized, Carolyn Griffin said. He could get up by himself, change his clothes, walk using a walker, but his short-term memory was sliding.

"He just didn't want to leave the house," Carolyn Griffin said.

In February 2016, he became very ill, developing sepsis, a potentially fatal syndrome.

"They called the family in and said he wouldn't make it out," Craft said.

Griffin survived, but the illness left him more confused and frail. Carolyn Griffin could no longer manage her husband's care on her own at home, especially as she also cared for an adult son with a developmental disability. The family made a decision to move him to the Green Houses at Traceway Retirement Community.

It was a really tough transition for both her parents, but it has smoothed out as her father's attention span has shortened, Craft said.

The past six months have been up and down. Because Griffin would forget he had trouble walking, he ended up breaking bones in falls. Intensive work with speech pathologists was able to address Griffin's swallowing issue and he's been able to start eating normal foods again.

Craft joined the efforts to help with the Walk to End Alzheimer's at a friend's suggestion as a way to help others.

"I'm excited to be involved," Craft said.

Balancing independence

When Alzheimer's began to strengthen its grip on Nancy Ingram, her family looked for solutions that allowed her to remain in her own space.

"She was a very independent person," Rogers said. "She was very community-oriented. It was really hard to start setting limits."

When the house Ingram had shared with her late husband became too much, the family convinced her to sell the house and move into a smaller home, Rogers said. At the time, several of her friends had houses in the same neighborhood.

Rogers checked in on her every day, bringing her lunch and dinner.

"We unplugged the oven so it didn't work," Rogers said.

Driving was a thorny issue. In the earliest stages of the disease, Ingram started having trouble with her sense of time.

"She would show up three hours early," said Rogers, who remembers finding her parked outside Sanctuary Village Shoppe waiting for her shift.

They started by putting a tracker on the car. When the family decided Ingram needed to stop driving because of her increasing confusion, Rogers practiced for two days before she broached the topic with her mom. Fortunately, Ingram was self-aware enough at the time to recognize her daughter's logic.

As Ingram needed more support, the family looked for solutions to help her remain in her own home. They turned to a sitter who had helped them when Roger's dad, Jim Ingram, was dying with cancer.

"Mother knew and liked her," Rogers said.

They started with half days, then eventually needed round-the-clock coverage. It was exhausting running two households, but Rogers is grateful they had the resources to pull it off.

"We made it work," Rogers said. "I was very lucky. She was never combative or angry."

Rogers and the caregivers tried different activities like coloring and puzzles to enrich Ingram's life as her world contracted. Her favorite thing was to look at old photographs, and Rogers turned a room of her house into a memory room with photos lining the walls.

"She loved to look through old stuff and talk about it," Rogers said.

The most challenging aspect of helping someone with dementia is learning to keep frustration and grief out of your body language. It was tough to learn not to try to correct Ingram when she was convinced her late husband would be home soon or that her late parents were waiting for a visit.

"They may be confused and not themselves, but they can still read you," Rogers said.

Her grandchildren would visit her regularly, but the disease began taking a toll on her ability to recognize them.

"She knew they were important and she loved them, but she couldn't tell you who they were. Eventually she got that way with me," Rogers said.

There were also lovely moments Rogers cherishes. Her mother would talk as if she was getting ready for a dance at Ole Miss or worrying over her upcoming performance in the Miss Arkansas pageant.

"There were times when I got to be my mother's best friend," Rogers said. "There were things I got to experience with her."

At the end, Ingram couldn't walk or talk. Rogers and the rest of the family would keep up one-sided conversations, not sure how much she was processing.

"The hardest part was when she lost her speech," Rogers said.

Through the stages of the disease, the Alzheimer's Association was very helpful, Rogers said. She could look up information, get ideas on what to expect next. Supporting the organization helps caregivers with access to information and support research into treatment.

"I don't want my children to go through this thing," Rogers said. "It's a horrible disease. It just robs you of who you are."

michaela.morris@journalinc.com

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