This is the final part in a four-part series on Rita Alley, her family and the realities of Alzheimer’s disease.
Rita Alley’s inability to do daily tasks is a symptom of the disease that takes much more from the Fort Mill resident than her memory.
Alzheimer’s disease is a 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, or younger-onset Alzheimer’s affects people younger than 65.
Alzheimer’s began affecting Alley and her family when Alley, 63, was diagnosed at 59.
The disease also affects motor skills and the person’s ability to swallow or perform other functions, said Beth Sulkowski, vice president of communications and advocacy for the Alzheimer’s Association’s South Carolina Chapter.
“It’s a long slow decline,” she said. “Alzheimer’s by itself can ultimately kill you.”
Death due to Alzheimer’s has increased 68 percent since 2000, said Janet LeClair, chief operating officer at The Ivey Memory Wellness Day Center in SouthPark, a nonprofit center that provides daytime care for people living with Alzheimer’s and related dementia. It is now the sixth leading cause of death in the United States. She said it is predicted that 16 million people will be living with the disease by 2050.
Typically, those with the disease live eight to 20 years, but Alzheimer’s can complicate treatment of other conditions, Sulkowski said. She said patients with the disease are admitted to hospitals three times more often than seniors without dementia, usually due to pneumonia, falls or heart disease.
“Life is certainly a lot harder if you’re managing Alzheimer’s along with other conditions,” Sulkowski said. “Alzheimer’s is a key player in that long, slow decline.”
Alley, who is jointly cared for by her daughter Amanda Dingess, son Chris Dingess and his wife Crystal, still recognizes her family, Amanda said. Alley still knows how to do certain things, but is starting to struggle with basic tasks such as using silverware.
Chris said his mother is also starting to lose depth perception, making it hard for her to open doors.
Peripheral vision is one of the first things Alzheimer’s affects, said Samantha Kriegshauser, director of the Adult Enrichment Centers in Fort Mill, a day center for adults catering to clients with a range of physical injuries or cognitive loss. She said patients will typically develop monocular vision as their bodies can only power essential functions.
“Their world is shrinking,” she said. “It is more than memory loss, it’s the loss of vision, taste, motor skills (and more).”
Kriegshauser said it’s important for the nation to recognize that Alzheimer’s disease is about more than memory loss.
“Try to see needs instead of odds or differences,” she said.
Eventually, Alzheimer’s disease affects a person’s taste buds as well, Kriegshauser said. She said dementia symptoms are typically categorized as early, middle and late stages.
“It’s so individualized,” she said. “There are no absolutes with dementia except that it’s going to rob you.”
Kriegshauser said the Adult Enrichment Centers try to provide positive information for families, but know that dementia by nature is an unknown.
“It’s hard to be positive, so we try to help families find joy when we can,” she said.
Alley’s experience is one example of how Alzheimer’s can affect the brain, Sulkowski said. She said the disease manifests itself in different ways in each person, but typically results in the loss of cognitive functions.
“It takes such simple things from us,” she said.
People who develop Alzheimer’s or other forms of dementia begin to misplace things, lose their ability to retrace their steps, are confused by the time or place, often withdraw from social activities and battle depression with changes in their personality and moods, Sulkowski said. Early-onset presents in similar ways, just at a younger age.
“It can be subtle,” she said. “Alzheimer’s creeps in and changes our abilities.”
Because the disease eats away at a person’s ability to function, caretakers are critical in ensuring that people with Alzheimer’s follow their care plans, Sulkowski said.
“That’s one of the most challenging things for families,” she said.
Alley spends her days at The Ivey, her family said.
Centers like the Ivey or Adult Enrichment Centers provide care for those with Alzheimer’s, something that is needed for caregivers, who often face their own health issues because they focus on their loved ones, Sulkowski said.
“They put themselves last,” she said. “We can easily take our families for granted, but in a situation like this, you realize how important they are to you.”
A Met-Life study found that caregivers of patients with Alzheimer’s often experienced more stress and indicated their health was impacted more often than other caregivers.
This is especially true in cases of younger-onset Alzheimer’s, in which families have to face planning for retirements that should be years away, or caregiving while they are still working and caring for children, Sulkowski said.
In Alley’s case, her family is far from the norm. Amanda and Chris have made it a point to keep a strict schedule for their mother and ensure their homes are similarly laid out to help Alley avoid confusion.
“I applaud the way they are working together to maintain a good schedule for Rita and make sure one person isn’t shouldering the caregiving burden by themselves,” Sulkowski said. “They are really doing it right.”
Chris said his family is moving Alley to Wellmore, a new assisted retirement community in Tega Cay that also focuses on Alzheimer’s and dementia care.
“She’s getting past the point of what we are able to do to take care of her,” he said.
Chris said Wellmore was the obvious choice given its reputation and proximity to his family.
“It is a top-of-the-line, first-class facility,” he said. “It’s so nice to have something right there in the Fort Mill area.”
Chris said caregivers shouldn’t feel like they have to be strong at all times.
“I haven’t really taken the time to cope with the fact that I’m losing my mom,” he said. “Do what you have to do to give yourself permission to experience the grief, but at the same time be thankful for the good times.”
Chris said he knows his and Amanda’s children will always have the memories they share of Alley and her time with them.
“That’s something to be extremely thankful for,” he said.
Want to read more?
Here are the earlier installments of the series:
Family rallies around mom with early-onset Alzheimer’s disease: Click here
For this Fort Mill early-onset Alzheimer’s patient, creative engagement and a daily schedule is key: Click here
Experts: No cure, but therapies help; More funding needed: Click here
To find a clinical trial, visit alz.org/trialmatch.
Monthly support groups meet in York County:
▪ 10:30 a.m. the first Tuesday of each month at the Adult Enrichment Center, Rock Hill
Facilitator: Dee Curran 803-327-7448
▪ 6:30 p.m. the second Wednesday of each month at 852 Gold Hill Road, suite 203, Fort Mill
Facilitator:Vina Pesaru, MD, 803-396-2155
Find other groups at alz.org/sc.
2015 Walk to End Alzheimer’s is Sept. 26 at Old Town, Rock Hill – Corner of Dave Lyle Blvd and East Main Street. Registration 9 a.m., ceremony 9:45 a.m., walk 10 a.m.
Register and learn more at alz.org/walk