Once a loved on can no longer recall the memories that their souls hold dear, it can take a toll not only on that person, but their family members too.
“She completely forgot who I was. She didn’t recognize me or any of my family members by the time she passed. That was really difficult. She changed all around as a person,” said Kylie Garrett, student at Samford University.
Her great-grandmother was the first person in her family to develop Alzheimer’s disease.
Memory is usually the first thing to be affected in individuals with Alzheimer’s among other brain functions.
It kills more people than breast cancer and prostate cancer combined according to the Alzheimer’s Association. Alabama has the highest death rate from Alzheimer’s in the nation. More than 96,000 Alabamians living with Alzheimer’s with that number expected to increase by 14.6 percent by 2025 bringing the total to more than 110,000.
More than 306,000 people in Alabama are caring for a loved one with Alzheimer’s. These numbers total to more than 349 million hours of unpaid care with the total value of unpaid care at more than $4 billion.
“Caregivers a lot of the time are unpaid, and they have to take care of someone who is typically a parent and a child,” said Mathew Banker, marketing and outreach chair for the Young Professionals Board of the Alzheimer’s Association of Alabama.
That could be the experience for young people. Parents tend to be 20 to 30 years older than their children which puts them in the age range of their 40s and 50s. That also is the age where symptoms of dementia which develops into Alzheimer’s start to show.
Carter Harrison, member of Alabama chapter of Alzheimer’s Association said that although Alzheimer’s tends to affect an older population it rippling effects reach far and wide. “Nobody is far removed from this and nobody should ever know Alzheimer’s,” Harrison said
Garrett agreed. “Young adults can have the disease. You have to be willing to do what is best for your health early. Signs and symptoms usually start as a young adult.”
Her great-grandmother had the disease her whole life. It didn’t start to alter her life until she got older.
She would have moments when she thought she was in a different time period. The hardest one for Garret to witness was her great-grandmother’s Alzheimer’s induced hallucinations.
“The earlier you start to think about these things the better off you will be when you are older,” Garrett urged. Young adults also tend to be heavily impacted by witnessing their loved ones with Alzheimer’s become a shell of themselves.
“We found out two years ago, my papaw also has the disease. Watching him deteriorate has been worse that watching my great-grandmother,” Kylie expressed.
The disease becomes powerful overtime. Due to her family’s experience with the disease, they take precautions to keep their brains healthy.
“At the end of the day, I think it comes to your perspective. Yes, older people usually have the disease but that’s when the disease has progressed to a usually untreatable point. The earlier you start to think about these things the better off you will be when you are older,” Garrett ended.
Hart Byers, young professionals board member at the Alabama Alzheimer’s Association realized how grave the disease was his wife’s grandfather when he would recognize him over her. It even got to the point where he no longer remembered her.
When his wife’s grandfather passed away, doctors found the most likely cause of his development of Alzheimer’s was from his time spent playing football back when protective athletic gear wasn’t advanced as it is today.
“They said his brain was like oatmeal by the time he passed away,” Byers explained. Due to the state of his brain, it was probable that he developed early onset Dementia in his late 20s or early 30s.
Byers spoke about how expensive of a disease Alzheimer’s is and that young people but themselves at a huge disadvantage by not saving that emergency money. “A lot people our age and younger don’t do financial planning and if they do, a long-term care policy is on the backburner,” Byers said.
Seven months into Byer’s insurance career, he had a colleague sell a long-term care policy to a male in his late 20s. A few years later, the client was in a grave car accident and suffered a damaging brain injury which caused him to develop early on set dementia in his early 30s.
“If he hadn’t had had that long term care policy, it would’ve cost him millions of dollars without it. The cost of care is high, the average monthly long term care facility in Birmingham, Alabama is $8,000 to $10,000 a month,” Byers said.
“Is the likelihood that this would happen to young person high? Probably not but understanding that it could, things happen to us every day that we don’t expect. It’s better to be prepared,” Hart said.
“I think having the freedom to work your way out of a financial hole is a huge deal, but some people aren’t that fortunate, Byers continued. “Even when considering taking care of your parents, the older your parents get the more expensive insurance it’s going to be.”
He expressed how difficult it is to change a young person’s mindset on how important it is to save money. He knew someone who works in a white-collar job had to cash out their entire retirement savings in order to provide care for his parents who developed Alzheimer’s.
Byers biggest point is that if young people can financially plan around the “what ifs” and not be hasty “to buy the next iPhone,” they will be better prepared.
Kate Webb’s grandfather David was diagnosed with Alzheimer’s when she was 10 years old. He had been living with it for over 12 years now. Growing up, the relationship she shared with her grandfather was very close and tight knit. When the disease began to take a toll on his mental health, he began to become a shell of himself. Webb, who now works as a marketing and communications/public policy and programs intern at the Alabama chapter of Alzheimer’s Association told of a story that not only affected her grandfather but herself also as a caretaker.
“My grandfather was a Missionary Baptist preacher. He loved the Psalms. His name is David after King David and he loved to preach on David. He also being a Missionary Baptist preacher loved his hymns and those were the last things that went. He couldn’t remember his name, children, or grandchildren but he remembered the harmonies to “Rock of Ages Cleft for Me.” It was his favorite. I began writing him letters about a couple years ago that the primary caretakers in my family would read to him, I would always give a Bible verse. When coronavirus happened, I could no longer visit my grandfather. It’s been over a year and a half since I’ve seen him in person. I started Facetiming him and it’s a little bit different because I can’t get in his face and be kind of aggressive with him in the ways that I am when I see him in person in order to keep his attention. We always feed him ice cream when we go ’cause it always wakes him up. I sort of devised a five-to-seven-minute plan for every phone call and it always includes reading a Psalm of David and praying with my Papa. The Papa who used to pray over me, prayed over me when he baptized me and singing a hymn. Even though that look of recognition was no longer on his face when I answered the phone or what have you. There were sometimes, moments where I knew that he was in there and I knew that he was looking at me and that even though his brain couldn’t compute and send the right signals to say sing along to those hymns, I knew that his soul was singing and that’s why we do, that’s why we continue. Even after Papa doesn’t know his own name anymore and doesn’t know yours, their soul is still in there. You still fight for that soul and that’s one of the reasons I work for the Alzheimer’s Association. I fight for his soul every day because he fought for mine.”