BELLE PLAINE, Kan. (KSNW) — Rayna Neises was only 16 when her 53-year-old mother Freddie was diagnosed with Alzheimer’s.
“By the time I was off to college, there was no phone calls, there was no conversations,” Neises recalls. “Really, she was able to just kind of answer yes or no.”
She calls her mother a “homebody” – enjoying the simple pleasures of music, her dog and family all within the walls of her home. One of Freddie’s coping mechanisms was to leave small notes around the house, reminding her to pick up Raina from an activity or where her daughter’s next ball game would be.
Freddie was nonverbal in her 12-year battle with the disease before her death. The family determined the best place for her to live out her days was in the home with the help of her husband Robert and family.
Robert played for the Brooklyn Dodgers early in life and retired from his position as CFO of Folgers Coffee to take care of his wife.
Seven years after his wife passed, Robert began noticing some struggles with his mind. Neises, who was in business with her father at the time, remembers him calling with worries he was not remembering things as well as he should.
“And for him, I think it was his problem-solving. My dad was sharp, He always was able to figure those things out pretty quickly. And I think he felt that change in himself,” Neises said.
Alzheimer’s is not just having issues with memory. For Robert, it was determined he had mild cognitive impairment.
Honoring his interests and the person he is, was integral to Neises’ care for her father as his mind faltered.
“Within two years (before) his passing, he was playing volleyball three times a week, we were going to the gym two times a week, within a month before he passed away. We were playing ping pong. So not everybody can do those things. But that was my dad’s wheelhouse,” Neises said.
Robert lived four years with the disease before he died. During the final years, his daughters cared for him, honoring his request to let him stay at home.
Neises commuted weekly from south of Belle Plaine up to Kansas City and stayed with him Wednesday through Sunday for two and a half years, sharing duties each week with her sister.
“As a caregiver, it’s so important to remember, I’m always his daughter. I’m never his mother, I’m always to honor him as my dad and honor her as my mom,” Neises said.
Neises and her family utilized the support group services of the Alzheimer’s Association. Robert was a volunteer even as he cared for his wife. The family participated in the Alzheimer’s Walk as a family for 23 years. In addition, Neises volunteers as a community educator.
In her role as a community educator and now an author of a book about caregiving, ‘No Regrets: Hope for your caregiving season,’ Neises emphasizes the importance of joining your loved one where they are at mentally.
“When we really understand what’s happening in the brain, those nerve cells are dying, those brain cells are dying, the brain is shrinking, the ability for them to access the information is gone. It’s not because they’re being difficult, it’s because they truly can’t understand,” Neises said.
For Neises, her mother spoke gibberish during her bout with the disease. So Neises said she would just smile, turn on music or sing a song.
“Finding ways to honor who they are as a person will make all of your journey better, because it will give you memories and opportunities to just stay in the moment and have fun. Always remembering who they are is the most important thing,” Neises said.
The Alzheimer’s Association Central & Western Kansas Chapter is located in Wichita and features a 24/7 helpline: 800-272-3900.
On Monday, the FDA made history by approving Aducanumab, the first drug approved for Alzheimer’s patients in 17 years.
The decision came with some controversy, as some independent advisers say the drug has not been shown to help slow the brain-destroying disease. The treatment is a monthly IV for those with the early stages of the disease that removes sticky deposits of a protein from the brains of Alzheimer’s patients.
The treatment is not a cure, and does not reverse progression of the disease, rather it aims to slow the progression of the disease.
KSN asked an expert from the Kansas State University Center on Aging about her reaction to the ruling. Dr. Erin Yelland says despite the drug being controversaial, this is an “astounding” breakthrough for patients because it fights the disease instead of the symptoms.
Her statement said, in part, For the roughly 30 million people globally who suffer from Alzheimer’s, and the millions more who care for them, this is a new glimmer of hope on the horizon.”