Carmen Magee’s last trip to Washington, D.C. was in a beat-up Ford Pinto in 1989 when her daughter, Jolene, was getting ready to start Kindergarten. Since then, Carmen lost her sister to brain cancer at 42 years old, had major spinal fusion back surgery, and recently became a 24/7 caregiver to her husband, Fred.
The Fort Pierre couple are West River ranchers at heart—Fred in his cowboy hat and Carmen in her studded fringe jacket. They met in high school and life took them in different directions, but several years after Fred became a widower he married Carmen in 2017. Two years later, Fred and Carmen’s lives changed forever when he was diagnosed with younger-onset Alzheimer’s at 58 years old.
Carmen made her second trip to the nation’s capital this week with Jolene, now married with two kids of her own and living in Fargo, ND. They traveled together to be part of the Alzheimer’s Impact Movement Advocacy Forum, the largest gathering of Alzheimer’s advocates in the country.
The duo’s advocacy on Capitol Hill spanned two states. Carmen met with South Dakota’s Senator Mike Rounds and staff from Senator John Thune and Representative Dusty Johnson’s offices, while Jolene visited with North Dakota Senator Kevin Cramer, Representative Kelly Armstrong, and staff from Senator Hoeven’s office.
They painted a picture of their experience with Alzheimer’s in rural South Dakota. Fred served his community as a respected tradesman, following in his dad’s footsteps as a master plumber.
Still, he’s more rancher than plumber, with his signature hat and boots to prove it. West River cowboys aren’t exactly known for their willingness to talk to their doctor about health concerns and Fred was no exception.
It took a jarring moment behind the wheel to change that for Fred. Cognitive impairment tests and an amyloid PET scan concluded Fred was living with younger-onset Alzheimer’s and the Magees' lives were forever changed.
Fred’s Alzheimer’s limits his ability to travel, so the couple created a video with the help of Carmen’s filmmaker son, Riley Thelen, to showcase the impact of Alzheimer’s on their family. While Carmen was the one to travel to Washington, it was just as much of a commitment for Fred to know he would be away from Carmen and receiving support from family caregivers.
“If he wasn’t on board, I wouldn’t be doing this,” Carmen said. “We are in this together.”
Fred and Carmen’s experience demonstrates how Alzheimer’s is often a whole-family disease, turning the former surgery technician into an around-the-clock unpaid caregiver. Finding support for Fred while Carmen was in Washington proved challenging, especially in rural South Dakota. After a few calls to South Dakota’s aging and disability resource center, known as Dakota at Home, Carmen secure some limited respite care to pay Fred’s caregivers while she was away.
“It only took 11 people to do what I do every day,” Carmen said, noting how grateful she is for their family lending a helping hand while she was away.
More support for caregivers and Alzheimer’s care in rural areas has been a focus of Carmen’s advocacy. She is in the process of joining the South Dakota Department of Health’s state Alzheimer’s coalition, which started because of the state’s new BOLD grant.
In light of her involvement in the state policy-making process made possible by the BOLD Act, Carmen asked her lawmakers to cosponsor the bipartisan BOLD Reauthorization Act which renews our nation’s commitment to strengthening the dementia public health infrastructure.
“This week was a rollercoaster of emotions,” Carmen said as she reflected on her trip. “Not everything is about helping ourselves. A lot of this won’t help us, but it can help the next generation not have to face Alzheimer’s like we have.”
Carmen’s advocacy is all the more impactful knowing how difficult it is for her to be away from home. As she boarded her flight to Fargo and before a six-hour drive back to Fort Pierre, she said, “I’m ready to be home and see Fred. He’s my guy.”
Fred and Carmen’s boldness and bravery in sharing their love story through all that they have faced together is making an impact on their community, country, and nation.
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.