Alzheimer’s Association National Early-Stage Advisor Rod Stephenson, 74, has been married to wife Deb for 22 years. During National Alzheimer's Disease Awareness Month & National Family Caregivers Month, the couple discusses their journey since Rod’s diagnosis.
Rod’s story begins before his diagnosis, when changes in his life started becoming a concern. “I called these ‘holes in my memory’,” he says. “Stuff that I should be able to remember, but couldn't.” Rod says that his wife Deb was insistent on getting his accurate diagnosis, something she did with steadfast persistence, for which Rod is grateful. “I didn't want to leave any stone unturned,” Deb shares. “As his partner in life, I wanted to do everything possible.”
“For two years, we felt like we were spinning on a wheel,” Deb says. “We wanted an answer, no matter what it was, because when you have answers to questions, you can better adapt and move forward.” In 2020, Rod was diagnosed with mild cognitive impairment (MCI). Upon receiving the diagnosis, they both cried. Rod, a former pastor, said a prayer asking God to help him be a messenger during this journey.
When Rod Met Deb
Deb grew up in Savannah, while Rod lived in Minnesota and later Indiana. Both divorced, they met in an online ‘early birds’ chatroom, where Deb was chatting under the screen name ‘Moon Breeze.’ “The name really charmed me,” Rod says, “so I initiated contact, which turned into months of online and phone conversations.” Rod was convinced that he and Deb should meet in person, and after a scavenger hunt in Savannah, Deb’s daughter led Rod into a church, music playing, where the couple met in person for the first time. “Deb owned my heart from that moment forward,” Rod says, and the couple married in September 1999. “It was an old fashioned romance,” Deb shares.
In her life as a special educator, Deb says that Rod was always her advocate. “I did more in my role as an educator than I could have ever dreamed because of his creativity, his ideas, his wind beneath my wings,” she says. Today, the couple’s roles have shifted, but they are still equal partners. “Now, I am his advocate, as he was for me.”
In the past six months, in addition to living with MCI, Rod has had triple bypass and hip surgeries, and Deb has been there for him every step of the way. Although Rod’s sleep patterns have changed — he goes to bed earlier than he used to — he and Deb still have their traditional time together. “We share readings from the Bible and inspirational books every morning,” Rod says. “And Deb doesn't let me slack off! We stay happily busy together.”
The couple loves having access to a local beach, enjoys fun nights out for folk music Wednesdays and look forward to scheduled Zoom calls with friends they’ve met through the Alzheimer’s Association.
A Team Approach
Rod and Deb face Rod’s disease as a team, and they want others to advocate for themselves in order to get a correct and timely diagnosis. “It’s easy for a highly-trained medical professional to step back into technical language and not deliver a clear message to their patient,” Rod shares. “When I started having my hip issues, I was thankful when my doctor showed me the X-ray results, saying my knees were good, but that my hip was ‘smoked.’ He could have spoken in medical jargon, but instead made it clear in a way I couldn’t misunderstand. The brain is much more complex than a hip. We have to ask our doctors questions if we want answers to help us on our path.”
As it would come to pass, Rod helped himself by advocating for Deb when he called the Alzheimer’s Association 24/7 Helpline
. “I called for Deb, not for me,” he says. “And after connecting to local support, it has been one blessing after another. I’ve had the chance to meet people battling what I am, which reminds me that I am not alone, that Deb is not alone. And even though it is a mysterious disease compared to many other diseases, we know that the battle is underway every day, which will one day result in the ultimate victory over this disease.”
Deb says that Rod calling for help on her behalf is just one of the many unique, special things about her longtime love. And thanks to support from the Atlanta chapter of the Alzheimer’s Association, Deb has made new friendships with other care partners
, learning many helpful tips as a result. “One of the best pieces of advice I give other care partners is to have a list of things you need help with — whether it’s grocery shopping, household chores, errands, cleaning — and when a friend, family member or neighbor offers to help, let them,” she says. “Have your list ready! After all, if you don't fill your own cup, you can't help someone else.”
Through Good Times and Bad
“There aren’t really words to express the level of gratitude I have for Deb and everything she does,” Rod says. “But most importantly, when I am feeling disappointed or discouraged, Deb is the bright side of the view. She gets us through each moment. Deb is wiser and more given to practicality than I am, and has made my life richer. I am so thankful that God has brought us together.” And Deb feels just as lucky. “We have gotten stronger together through this journey,” she confirms. “And we are able to see the blessings.”
Rod and Deb shared Rod’s diagnosis with their pastor and church. “We didn’t want to hide,” Deb says. “Stigma has no value at all to a patient or a doctor,” Rod agrees. “Alzheimer’s is a disease. Dementia is a disease. It is not something to be ashamed of.” And while Deb admits that grief is part of the diagnosis and disease process, both for the care partner and the person with the disease, she knows that it is something that needs to be experienced. “Once you have fear in your life, it can control you,” she says. “Being open and honest alleviates that. Yes, you will grieve. Yes, it's a process.”
Approaching life together as a team has been just one of Rod’s joys as Deb’s husband and partner in life. “There is no greater blessing for me than having Deb here to share my words, experiences and my world with,” Rod says. “She is my everything.”
About: As a member of the National Early Stage Advisory Group, Rod Stephenson advocates for others who suspect they are experiencing signs of Alzheimer’s, and wants to help direct them to resources. “Isolation is a huge problem in our community,” he says. “People who are unpartered or who live alone experience stigma and are therefore afraid to share what’s going on, resulting in less support.” Rod and wife Deb live in Savannah, Georgia with their pet dogs
Mini-Tude and Oliver.