When a rare diagnosis turned their world upside down, a Fort Mill family found strength in each other.
It transformed their lives.
Chris Dingess, 33, and his wife Crystal spend their days taking care of his mother, Rita Alley, who was diagnosed with early-onset Alzheimer’s disease at the age of 59. Dingess’ sister Amanda Dingess, a mother of two, moved from their hometown in Kentucky to Charlotte in 2013, then to Rock Hill in 2014, to be near the Fort Mill couple and help care for Alley.
Alzheimer’s is progressive, degenerative disorder affecting the brain’s nerve cells, resulting in memory loss and behavioral changes, according to the Alzheimer’s Foundation of America. Early-onset, also known as younger-onset Alzheimer’s, affects people younger than 65. It is found in about 5 percent of the more than 5 million people with the disease.
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Alley’s family shares a special bond among caretakers.
Alley, 63, a Kentucky native, splits her time between her son and daughters’ homes and stays at The Ivey Memory Wellness Day Center in Charlotte’s SouthPark area. It’s a nonprofit center that provides daytime care for people living with Alzheimer’s and related dementia, Chris said.
Chris Dingess credits Crystal for the care she helps provide his mother and for the sacrifices she makes.
“My wife is my hero,” he said. “To do it for your spouse’s parent, it’s a gift.”
Because Chris works full-time, Crystal and Amanda are Alley’s primary caregivers when she isn’t at The Ivey, Chris said. A nursing assistant helps get Alley ready every morning because basic functions, such as showering and getting dressed, are difficult for her.
Alley is usually surrounded by five children – three of Chris and Crystal’s kids ages 6, 4 and 2 and Amanda’s two young sons – which can be stressful at times, Amanda said.
“It’s too much for her,” she said. “It’s hard.”
Amanda said that as with anyone with Alzheimer’s, they can’t leave Alley by herself.
“You have to stay one step ahead of (patients),” she said.
To help Alley through her days, the whole family works together to keep a routine that’s comfortable for her, Amanda said. That includes communicating when schedule changes need to be made, keeping things as similar as possible between the two households and helping each other when needed.
“She did everything for us she could, and we want to do it for her also,” she said. “We’re very proud of the way she has handled everything.”
The Dingess family’s strong collaboration is rare among those who become caretakers, according to Janet LeClair, chief operating officer at The Ivey. She said many families often have conflict when dealing with the pressures of taking care of someone with Alzheimer’s. Early-onset is especially challenging for families because the diagnosis is not expected at such a young age, LeClair said. She said, unlike in the Dingess’ situation, usually one sibling takes on the primary caregiver duties and decision-making responsibilities.
“They are a role model for this generation,” she said. “They stick together and support each other.”
When her symptoms started in 2011, getting Alley to leave Hode, Ky., was a big step, a common hurder for Alzheimer’s patients, Chris said. Alley was born in Kentucky and grew up in a house built by her father and with her nine older siblings.
“Home for them is where they spent their childhood,” he said. “For her, it was an extremely difficult decision to leave.”
For a few years, the Dingess split their time with Alley between Fort Mill, where Chris moved in 2009, and Kentucky with Amanda, but the confusion it brought their mother took its toll, he said.
Once Amanda moved to the area, it became easier to establish a routine.
“Their brains don’t work the same way ours do,” he said. “It helps them feel safer and more secure in their life.”
Though it is a challenge, Chris said taking care of Alley has brought him and Amanda “closer than we’ve ever been.”
“It’s been a huge blessing to have it work out the way it did,” he said. “It’s teamwork, 100 percent.”
Amanda said caretakers have to let their own emotions go.
“You have to be the strong one,” she said. “We have to move forward together, no matter what the issues are.”
Throughout the hectic mornings getting Alley ready and to The Ivey, the strict scheduling and the constant watching after their mother, the Dingess still find time to be a family, Chris said.
“We’re certainly not without our drama, but we consider that to be God’s grace,” he said. “We consider what we are doing to be loving her and supporting her. I’m thankful my mom came to live with us.”
Amanda said her family lives by a belief that her mother instilled in them, to “make the most of what you are given.”
“She was always very family-oriented and instilled that in us,” Amanda said in a biography she wrote about her mother.
The disease is never something a family would choose to deal with, but it all comes down to perspective, Chris said.
“Alzheimer’s is a horrible disease that eats away at a person’s sense of self, but we all choose how we react to it,” he said. “We can choose to be victims of our circumstances or choose to look at all the things we are blessed with. There are so many silver linings to look at.”
Part II of this series will focus on what Rita Alley’s life was like before Alzheimer’s.
The Ivey, in the SouthPark area of Charlotte, houses wellness services with an on-site registered nurse, offers a licensed rehabilitation services team, and provides socialization and stimulating activities. Staff can recommend transportation services to the center if needed. For more information, go to theivey.com.