Just five years into their marriage, Legates Frank and Janie Carney faced a challenge that is more likely to befall couples who have been together for decades.
At the age of 73, Frank, co-founder of Pizza Hut and a Papa John’s franchisee, began to suffer memory lapses that couldn’t be explained by the stress of his business. At first, his doctor thought a new prescription might have been responsible and, when Frank stopped taking the drug for three months, everything seemed to have returned to normal.
Then, the lapses resumed and eventually the Carneys would hear the dreaded words, “Alzheimer’s disease,” setting them on a path of sorrow that has deepened their Catholic faith.
Series of ‘shorts’
“People think with this disease that everything just shuts off . . . [but] it’s not like a light switch,” said Janie in describing the progression of Alzheimer’s. “It’s a series of shorts. At every step of the journey, you get some strength, then the bottom drops out and you have to adjust and compensate for the lesser state so it’s not like a constant slide down. If you understood what’s going on scientifically in the brain, it’s those interruptions in the neurotransmitters that continually become more frequent.”
When the Carneys, members of the Wichita, Kansas, Legatus Chapter, initially were given a diagnosis of cognitive impairment, they contacted a well-known clinic recommended by Frank’s physician. But after waiting three months for an appointment, they encountered a nine-hour delay caused by an airport closure at their destination and returned home.
At that point, Janie said, “I was in search of something – anything, and I remembered Health network with Legatus.” The Health network membership benefit provides a “concierge service” giving Legates and their families access to top medical facilities. Ten days after contacting the service, Janie said, “We had 24 appointments at the Mayo Clinic. In four days, they had screened everything they could possibly screen with Frank. And we started a relationship.” Besides learning about clinical trials of drugs, the contact with Mayo put Janie on a track to study her husband’s disease and she became relentless in her pursuit of learning about it. By the time the Carneys sought to get Frank in a compassionate-use study of Bryostatin-1, under the supervision of the U.S. Food and Drug Administration, Janie had amassed stacks of information that allowed her to advocate for him.
Improvement and shared purpose
After 13 months on Bryostatin-1 beginning in May, 2014, Frank improved to the point that he and Janie were able to resume some of their normal activities, including dining outside his care facility and occasional trips to the grocery store. Before that, he had been nearly mute and weakened to the point that Janie had to hold his arm when he walked. However, the trial ended when Janie was forced to find a new care facility that would not allow continued participation in the study.
Nonetheless, Janie knows her husband would be grateful that the trial could eventually help someone else. In an interview with the Wichita Eagle, she explained that his purpose in life was never what someone could do for him, but what he could do for others. Although that was a long-held philosophy, when the Carneys joined Legatus, attending their first meeting four days after their wedding, it added another dimension by immersing Frank in his Catholic faith. After 30 years as a lapsed Catholic, Janie said her husband had returned to the Church before they married, and Legatus allowed him to experience the spirituality he had not been able to enjoy since high school. “It was the greatest gift we could have had as a couple.”
As Frank’s caregiver, Janie has tried to live his commitment to others as well as their shared faith. She visits him daily at his care facility, where she has developed relationships with the staff and other residents. “What’s funny is they’ve become my family.”
Support, separation and activism
That sense of family among those with the shared purpose of caring for people with Alzheimer’s can be especially important because, Janie said, “It’s a disease that separates you. It separates family members who don’t understand, feel inadequate, or are hurt because the world isn’t giving them what they wanted so they don’t participate . . . It’s the difference between being in the world and of the world. When you’re of the world, you want everything to be the way you want it to be and so when your expectations fall short, you feel like you don’t have to participate.”
Additionally, Janie has become a legislative activist for a state bill allowing the use of videography in nursing homes, an effort that led to her appointment in 2018 to the Kansas Alzheimer’s Disease Plan Working Group for Public Policy. And, as part of her advocacy, she has written a memoir aimed at caregivers focusing on the spiritual aspect of partnership.
“Honestly,” she said, “I would never have imagined that my life would have turned in this direction. But I do it because this is exactly what Frank would have done if the roles were reversed. I do it as a Legate because ‘to those who have been given much, much will be required.’ More importantly, I do it in respect of Frank’s own words, ‘I have been given a great deal of opportunity in my life and the only way to reciprocate opportunity is with responsibility.’”
Dr. Martin Bednar, a Providence, R.I., Legate and neurosurgeon who focuses on Alzheimer’s disease therapies in his work with Takeda Pharmaceuticals, said he admires Janie’s perseverance in the face of a disease that has become one of those Americans most fear. Yet, he continued, despite its devastating effects, he has seen amazing responses to Alzheimer’s, even from people he would have expected to break down. “They haven’t surrendered to the disease, but they have surrendered to the Lord . . . It’s not like they’re looking to be an example, but they are. They’re just living examples everyday of grace in action.”
His advice for those faced with an Alzheimer’s diagnosis, he said, is to take advantage of specialists, support groups, and the resources of the Alzheimer’s Association. Secondly, he said, “Get involved, try to understand the disease, stay positive, and don’t give up because the research and medical communities are not giving up and they’re spending billions of dollars to fight this . . . The more you understand about the disease the less you feel like you’re shadowboxing against an invisible enemy.” Finally, Bednar recommends prayer. “Continue to develop your relationship with the Lord . . . Surrender to the Lord and be a spiritual warrior.”
Indeed, Janie’s response to Frank’s disease has reflected much of that advice. Clearly, said Fr. John Sherlock, acting chaplain of the Legatus Wichita Chapter, she has found solace in her Catholic faith.
As she came to terms with her own limitations, he said, she developed an inner strength and a vision that deepened into an ability to accept God’s will. “And she saw some redemptive value in the sickness itself. She did not deny the sorrow. She did not deny the hurt. She did not deny the curtailing of her ideals in the marriage, but rather she saw in it a way to unite herself with the sufferings of the Lord and saw that there is a value to these sufferings – a redemptive value that could be applied to herself, her husband, other people, the family.”
JUDY ROBERTS is a Legatus magazine staff writer.