Before frontotemporal dementia, Ken Keene Sr. was a man’s man, a strong, quiet type who worked hard, led by example, and doled out stern discipline to his three sons.
The oldest, Ken Jr., longed for a warmer version of the man he loved and respected.
Now, he’s got one.
Midway into a form of dementia that affects judgment, behavior, and language ability, Keene Sr. is now an outgoing hugger, dancer, singer and talker. Unfortunately, he uses his newfound loquaciousness to tell — and retell— a tiny repertoire of stories. He can’t remember that gum is for chewing, not eating. He pointed out one day that everyone has “one of these” — referring to his nose. He has an embarrassing habit of performing ad jingles at the slightest provocation. A much-repeated favorite: We are Farmer’s bum ba-dum bum bum bum bum.
What the disease has done is ironic, heartbreaking, maddening, exhausting and, sometimes, funny. The worst of it still lies ahead.
This summer, Keene Jr., started using his cellphone to cope, filming his 68-year-old father as they did everyday things in an attempt to document Keene Sr.’s dementia and let others see firsthand what it’s like to be around someone with the disease. The project is also a chance for Keene Jr., a 45-year-old personal trainer, web developer, and Air Force vet, to step back and process how he feels about what is happening to his father.
“I feel like I’m signing off on his life,” he said.
He’s called the project the Journey with ToughKenaMan after a nickname his father bestowed on himself when he saw a sign for Toughkenamon, Chester County. Keene Sr. puts the emphasis on the last syllable and punctuates the word with jabs of his fists.
Keene Jr. began filming in July, a year after his father moved to the Delaware Valley Veterans Home in Northeast Philadelphia because his wife, Barbara Linda Keene, also 68, couldn’t handle him at their home in Trevose. He was wandering, banging on a neighbor’s windows and becoming “ornery” in a way that frightened her.
At first, she questioned her son’s decision to film the deterioration of a man who had always been responsible and in control. Now she sees the value of it. “It makes me feel good because I have a piece of him,” she said.
The videos themselves are unlikely to win an Oscar and they are not viral sensations. Most have views in the hundreds, though one, a collection of Keene Sr.’s singing, has accumulated more than 3,000 views. Many of the videos will be too long for most viewers, but their lack of tight editing is a virtue when it comes to showing the tedium and frustration of spending time with a loved one with frontotemporal dementia, also called frontotemporal degeneration (FTD).
Keene Jr. said an Australian professor told him she is using the videos to help students understand the differences between Alzheimer’s disease, which typically starts later and in different parts of the brain, and FTD.
Keene Sr. was diagnosed in 2014, but his symptoms began when he was in his late 50s. He delivered utility poles for Peco and started having trouble reading maps. According to the Association for Frontotemporal Dementia, the disease is progressive and victims typically live two to 10 years after diagnosis.
Keene Jr., who splits his time between his mother’s and girlfriend’s houses, spends three to five hours at a time with his father once a week. He said the experience is teaching him patience.
He tries to appreciate, without judgment, the person his father is now, although it is hard to bear the dwindling number of repeated stories and songs. “I know every song he sings,” the son said.
There is a wistfulness when he talks about his father’s personality change.
“The inhibitions, there are none now,” he said. “As a result, I believe we are finding the person he was for many years, that he suppressed. He wanted to dance. He wanted to be outgoing.”
Keene Sr. now has trouble recognizing two of his sons and his dog. Yet he remembers all the words to the Beatles song “When I’m Sixty-four,” which plays from a singing stuffed bear he cherishes. Keene Jr. said his father eventually changes the lyrics to most of his favorite tunes. When the bear stopped playing on a recent visit, Keene Sr., began humming “Love Is a Many-Splendored Thing,” a song from a 1950s movie. Then he added his own words: “Love is a very splendid thing, I’m ToughKenaMan who never stopped loving you, and please, please love me, because love is a very splendid thing.”