Sara Schupp hasn’t seen her mother in a while. She hopes to someday soon, but for now, it’s the difference between crying on the way to work every day for a week and functioning like a normal 34-year-old. Her mother, Bernadette LandiVittori, was diagnosed with early onset Alzheimer’s disease in 2001. The family decided to move her to the Morton Terrace Care Center in January 2013. Schupp visited many times at first, but a little more than a year later, it’s been too much for her to take.
Her mother weighs 100 pounds. She doesn’t know who her daughter is, even when they are in the same room. Thirty-four years of Schupp’s life have vanished from her mother’s memory.
“I want to be that courageous person. I want to be that person who goes to see her, and I have a lot of guilt because of it,” Schupp said. “I cannot physically bring myself to drive there right now. I’m hoping that will change, and I’ll be that strong person. But right now, I can’t do it.”
Schupp’s experience with the disease was unusual in that her mother was diagnosed at age 54, when her daughter was just a senior in college. However, according to a report released in March by the Alzheimer’s Association national office, her experience may become more common as increasing numbers of seniors are being diagnosed with Alzheimer’s, and there is currently still no cure.
Alzheimer’s is the sixth-deadliest disease in the United States, but even that’s a naive statistic, said central Illinois Alzheimer’s Association Executive Director Nikki Vulgaris-Rodriguez. It’s more likely the third-deadliest disease nationally when causes of death, like pneumonia, are viewed as the results of Alzheimer’s degenerative nature, she said.
The financial toll of the disease is also burdening the nation, the report states. It estimates that Alzheimer’s will cost Medicare and Medicaid a combined $150 billion in 2014 for the 5 million Americans living with the disease. The Association predicts that once the Baby Boomer generation reaches the age of greatest risk for dementia in the coming decade, an astronomical rise in these numbers will occur.
Alzheimer’s advocacy groups say they want to impart on the public and politicians that the disease costs billions of dollars and is underfunded by the U.S. government when compared to HIV/AIDS, cancer and heart disease.
“We have a very active advocacy program for both the federal and state levels,” Vulgaris-Rodriguez said. “We’re constantly out there with our volunteer ambassadors to help be a voice for our population in the Alzheimer’s community.”
Schupp recently stepped into that volunteer ambassador role for the 18th Congressional District in Illinois. She has met with aides of U.S. Rep. Aaron Schock and hopes to meet Schock in person this summer to discuss the increasing need for more funding and better research of Alzheimer’s.
Becoming an advocate was difficult for Schupp after watching her mother lose herself to the disease over the course of nearly 13 years. Fresh off of graduation from Southern Illinois University when her parents informed her of her mother’s diagnosis, Schupp experienced denial and took the approach that everything was normal.
And her caregiving role was minor as her father, Lamonte LandiVittori, assumed daily care for his wife. Schupp was allowed to devote herself to her career and starting her own family while her father cared for her mother.
For three weeks in 2010, Schupp stepped into her father’s shoes while he was recovering from heart surgery, taking both parents into her home. She couldn’t believe the stress, strain and emotion of those three weeks.
“I don’t know how my dad did it for so long,” Schupp said. “I think it’s taken an extreme physical and emotional toll on him.”
Lamonte LandiVittori now has stage four colon cancer. Schupp can’t prove it, but she believes the stress of the past decade contributed to his condition.
“It does happen,” Vulgaris-Rodriguez said. “Our support programs give the caregiver an understanding of the stress level so they can manage their own stress.”
Looking back from what is now the final chapter in her mother’s struggle with Alzheimer’s, Schupp urges those dealing with the disease to seek out those support groups — something she did not do. Those groups might have told her what she knows now 13 years later.
Gary Chandler is a prion expert. He is the CEO of Crossbow Communications, author of several books and producer of documentaries about health and environmental issues around the world. Chandler is connecting the dots to the global surge in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and other forms of prion disease. The scientific name for prion disease is transmissible spongiform encephalopathy. The operative word is “transmissible.” Even the global surge in autism appears to be related.