As dementia takes her dad, this daughter stays devoted
MOBILE, Ala. (AP) – Gene Guy can no longer walk or speak and tries to swallow. But every day he communicates via Facetime with his daughter Amber Guy, who lives on the other side of Mobile Bay. Before hanging up, he kisses his index finger and places it on the picture of Bernstein’s face that appears on his screen.
He was diagnosed with frontotemporal degeneration (FTD) 12 years ago. He can’t tell her that he doesn’t love her anymore. But she knows.
Last year Amber quit her job as a public relations officer at the Mobile Public Library, where she had worked for 16 years, to take a part-time position as visitor services coordinator at the Alabama Contemporary Arts Center, spending more time helping her mother, Dolly, herself to take care of him.
FTD is often mistaken for Alzheimer’s disease and is the most common form of dementia in people under the age of 60. Common onset is between 45 and 64 years of age, and the average life expectancy is seven to 13 years after the onset of Frontotemporal Degeneration symptoms, according to the Association.
A section on “60 minutes” called FTD “the cruelest disease you’ve never heard of,” says Amber. “In the beginning it presents itself as a personality change.”
Her father was diagnosed 12 years ago after his family noticed some changes in his behavior that affected him. “Things started to happen that didn’t seem right or sound like him,” says Amber. An avid sports fan and avid churchgoer, he became extremely angry at the sports organizers on TV and relentlessly refused to go to church. Gene and Dolly had been best friends since they were teenagers, but their relationship began to suffer.
Then, in 2006, he announced that he was retiring earlier than planned from his long career with GM&O Railroad and then Mobile Infirmary. The family had to take his keys away because of his violent anger in the street. He started building a shed in the back yard and was never able to complete the project. His wife decided it was time to find out what was wrong with him.
Her family doctor, who has known genes for years, ordered a PET scan and diagnosed him with FTD, which affects the frontal and / or temporal lobes of the brain.
Suddenly the infatuated father, who had given Amber and her younger brother Daniel such a “wonderful childhood”, “which had always encouraged us to do our best and not accept less”, was confronted with a definitive prognosis.
“He never gave up on us,” says Amber – just like he never gave up on her when she was born two months prematurely, which resulted in mild cerebral palsy on her right side. She ended up attending the highly competitive Alabama School of Math and Science and graduating from Auburn University like her parents before her.
“He never let me use an excuse not to do things,” she says. “And this philosophy is now prevailing for him.”
“I can still feel the love”
Gene was born in 1944 and grew up with his eleven siblings on a farm in West Mobile. The family moved to Atmore when he was in high school, and his first date with Dolly was at his prom when she was a freshman. He was an excellent basketball player and received a scholarship to the Southern Christian Community College. Then his basketball career ended when he tore his Achilles tendon.
He and his sister Sheila taught dance lessons to pay for his way through Auburn University, where he studied horticulture and graduated in 1968. Dolly, who had followed him to Auburn, graduated in 1969. Gene took a job as a computer programmer at GM&O Railroad. And although he had stated that he would not get married until he was 40, he soon changed his mind and the couple married in May 1970.
They bought a house in Spanish Fort so Dolly could be close to work – she taught third grade, then first grade at Daphne Elementary School for 37 years – and the day they closed the house, Dolly had a surprise for him: she was pregnant with her first child, Amber. Daniel was born four years later.
Until well into the 1940s, Gene played pickup basketball in church and “killed it,” says his daughter. In 2018, she took her parents to a women’s basketball game in Auburn, where they posed for a picture with Aubie and met Auburn’s then-new sporting director, Allen Greene, who is still checking on Gene from time to time.
This was her last trip to Auburn, but Gene still enjoys “All Auburn Sports” on television. Before the coronavirus pandemic, Gene and Dolly still went dancing every week. Today her friends drop by occasionally to have dinner and play dominoes. When his siblings visit every few months, “he sits and enjoys listening to them,” says Amber.
She credits her mother for offering him the best possible quality of life despite his illness. As the FTD made progress, Dolly was determined to leave him at home. “If mom wasn’t the super woman she is, he’d probably be bedridden,” she says. “She puts him in his wheelchair every day.” Gene and Dolly celebrated their 50th wedding anniversary in May with a small party in their backyard.
He watches game shows like “Jeopardy” and “Wheel of Fortune” as well as old shows like “Petticoat Junction”. Although he can no longer speak, his sense of humor is still evident, says Amber. When she and her mother start talking about politics, he pushes the phone away.
“I can still feel the love that comes from him,” she says. “He still loves us and loves to be around us.”
Due to his fragile health, Amber has not hugged her father since his 76th birthday on March 12 – just before the COVID-19 precautions began. She wears a mask and keeps her distance from him when she visits, and she encourages everyone to wear masks in public to protect others like her father.
“My biggest nightmare would be that he would get sick, be alone in the hospital and not understand why we couldn’t be with him,” she says.
She also encourages others living with FTD and other diagnoses of dementia to “just love them” and rely on others as much as possible. “The longer period of mourning takes so much from you,” she says. “It’s okay to talk. You need this support. It’s not a weakness. The result never changes. “
And while FTD is certainly a cruel, unfair, and devastating disease with no treatment and cure, she has cherished every moment she spends with her father. “I would never wish that to anyone,” she says, “but it makes you realize how precious time is and that you don’t take your time for granted with those you love.”