By Catherine Nouhan
Charlene Mangi is joining hundreds in the fight against Alzheimer’s disease at the Alzheimer’s Association Walk to End Alzheimer’s in Ann Arbor on October 7. Her journey with Alzheimer’s disease began ten years ago when Kathleen, Charlene’s mother, began showing signs of younger-onset Alzheimer’s disease.
Charlene and her father, Jim, knew that there was a problem, but did not first suspect Alzheimer’s disease. Kathleen was only in her late fifties; she would get very upset if Charlene or Jim suggested that she was experiencing some form of memory loss.
“My mom has always been really smart, very intellectual and independent, and stubborn. That’s just who she is,” Charlene says. “So her resistance to people calling her ‘senile’ speaks to that, but also to the incredible stigma against dementia. She was feeling like having dementia was a personal failing of hers.”
Jim echoed his daughter’s thoughts about the personal vilification that often accompanies memory loss. “There is that stigma about Alzheimer’s. Obviously Kathleen felt that too; she was so opposed to being accused of being senile. One of the most important things about Alzheimer’s disease is to emphasize the last part of that phrase — Alzheimer’s disease,” says Jim. “Alzheimer’s is not a character flaw.”
When Kathleen began forgetting conversations and frequently getting lost in the neighborhood that she had lived in for quite some time, Jim persuaded her to go to a neurological clinic at Georgetown University, where they got the official diagnosis.
Kathleen was once a scientist for the U.S. Department of Energy, a talented singer, an avid photographer, and a lover of the outdoors. She is now in the middle stages of a disease that has robbed her of the ability to even fully comprehend her true diagnosis. “After all the time that had passed since she first started showing signs, she’d lost the ability to really process what the doctors were saying,” says Jim.
Kathleen was not able to fully comprehend her environment several years ago at her daughter’s wedding. “If you had gone up to her and asked her who was getting married, I don’t know that she’d have been able to tell you,” says Charlene. “But it’s been powerful to watch my parents and see the strength of their marriage. Watching the way my dad takes care of her has shown me how good a marriage can be, even in bad circumstances.”
Memory loss that disrupts daily life and changes in mood and personality are two of the ten warning signs and symptoms of Alzheimer’s disease. Kathleen is not alone — she is among 5.7 million people nationwide and 180,000 people in the state of Michigan with Alzheimer’s. It is currently the nation’s sixth-leading cause of death, according to the Alzheimer’s Association 2018 Facts & Figures report.
The risk for women is even greater. Almost two-thirds of Americans with Alzheimer’s are women. In her 60s, a woman’s estimated lifetime risk for developing Alzheimer’s is 1 in 6. For breast cancer it is 1 in 11. Not only are women more likely to have Alzheimer’s, they are also more likely to be caregivers of those with Alzheimer’s. More than 60 percent of Alzheimer’s and dementia caregivers are women.
While it has taken some time for Jim and Charlene to adapt to their new lifestyle, they are learning as they go. Jim and Kathleen were happy to recently make the move from Virginia to Ann Arbor to be closer to Charlene, her husband, and their new baby. Their shared experience as caregivers has brought the father-daughter pair even closer together. “We live 20 minutes down the road from each other now, which means we get to do the grandma and grandpa babysitting thing, and Charlene is available to help, lend an ear, and make things better for us here,” says Jim. “It’s really helpful to me to have an adult child that understands my situation.”
Charlene is also thankful for the resources that the Alzheimer’s Association provided her parents while searching for housing in the Ann Arbor area. “The Alzheimer’s Association was really helpful in looking for a good spot for my parents.” She also recently stepped down after serving as a board member of the Young Professional Alzheimer’s Advocates of Washtenaw for approximately three years, and vows to remain involved. “It’s been a great way to feel like I’m doing a small thing to fight the disease.”
The Walk to End Alzheimer’s in Ann Arbor is one of 600 walks held annually nationwide, and is the world’s largest event to raise awareness and funds for Alzheimer’s care, support, and research. This year, the Walk will take place at Washtenaw Community College behind the Gunder Myran and Crane Liberal Arts and Science Building. To sign up for the Walk, visit alz.org/walk. To learn more about the Alzheimer’s Association or memory loss, call the 24/7 Helpline at 800.272.3900 or visit alz.org.
Jim and Charlene are determined to help find a cure for Kathleen and all of the other families who are dealing with similar circumstances. “There are commercials running on TV that say, ‘the first survivor of Alzheimer’s disease is out there.’ I truly believe that,” says Jim. “I wish it were my wife. I doubt it will be. But I know we’re going to find a cure.”