When Fort Myers, Fla. mother of four, Tia Willin, first heard about Bruce Willis’ recently diagnosed frontotemporal dementia (FTD), she was furious. Although she felt deeply for the family – more than most could – no one had paid much attention to the rare and deadly dementia that often strikes in middle age while her husband was dying of it. Now everyone seemed to be googling what FTD meant to the mistress Die Hard fate of the actor.
She calls the disease the “Stephen King version of the movie.” 50 first dates,‘, indicating the alarming behavioral changes and memory loss of the sufferer. Her husband, Ryan Willin, a Navy veteran, father of her children, and her “best friend,” died of FTD at age 39 — just five years after he first began showing symptoms.
It’s been 14 years since Ryan’s death, but Tia, now a grandma, is still on a mission to educate others about FTD, which affects more than 50,000 Americans each year and accounts for 10 to 20% of dementia cases, according to the Association for Frontotemporal Degeneration.
“Frontotemporal dementia is a subtype of dementia that results from a loss of neurons in the frontal lobe or temporal lobe or both,” neuropsychologist Karen Sullivan, who also works to educate people about the brain via her YouTube channel, tells Yahoo Life. “Over time, this loss of neural networks causes the lobes to shrink or atrophy. It involves changes in behavior, language and everyday life.”
Unravel the first signs of life
When Ryan got home from his job with the sheriff, neighborhood kids would knock on their door and ask if “daddy could come out and play,” and he would end up on the trampoline with them all, Tia recalls. “He was just one of them,” she tells Yahoo Life. “He absolutely adored his children. The last words he ever spoke were ‘the children’.”
But eventually, this carefree dad started acting erratically and out of character. “Rather than sit down at the table with the rest of us for dinner, he just picked up his plate and went into the bedroom and closed the door to eat,” she says. As “best friends,” she found it bizarre that he stopped asking about her day and opening up about his own. Tia took the family to Disney World to see if a vacation would help. But Ryan lost two of the children, ages 8 and 9, one of whom had autism, at the park. But oddly enough, he didn’t panic about it. “He just sat down and said, ‘I don’t know where they are,'” she says.
Ryan was unaware of his changes in behavior. This is typical of FTD, according to Clifford Segil, a neurologist at Providence Saint John Health Center in Santa Monica, California. “Sometimes patients present with memory loss first, or with speech problems first, or with disinhibition first,” he tells Yahoo Life.
However, Ryan turned violent and had a short fuse. The couple had previously always taken a “gentle parenting” approach, but suddenly Tia had to dodge smashed plates and random outbursts of anger, fists through walls and more. Even small things could upset Ryan, like asking one of their young children how to spell a word on a birthday card they were making. When he began turning to physical violence against the children, Tia knew it was time. Ryan moved out of their house and to his parents.
“Never in a million years did I think I would kick a dying man out of his house,” Tia says, recalling a regret that would later haunt her.
The arduous path to diagnosis
The couple were at the beginning of a long and difficult journey to not only find out what was wrong with Ryan, but also to place him in a facility that could care for him. He had lost his job, and with it his health insurance, after failing a fitness to work test due to lack of time and location orientation.
At first doctors thought Ryan had schizophrenia followed by depression with psychosis – while he began to speak less and less and even forgot who his children were. He was committed to a state psychiatric hospital, where he spent months. Tia knew they hadn’t found the right answer yet.
Her struggle is common for this disease. Sullivan says FTD has the highest misdiagnosis rate of any dementia and is often confused with Alzheimer’s or, in Ryan’s case, with depression, mania or psychosis.
But Tia had an epiphany reading Sue Monk Kidd’s ‘The Mermaid Chair’, which describes a character living with a type of FTD – she was shocked to see that the book labeled his exact problems as ‘terminal disease”. Tia sold her house to pay for Ryan’s medical tests. When a PET scan from a neurologist yielded no diagnosis, she sought help from FTD specialists, who researched the disorder.
“The average delay for a patient to receive an FTD diagnosis is 4.4 years, compromising the proper education, treatment and care of these patients and their families,” says Sullivan. “This delay creates a lot of unnecessary pain and suffering and non-evidence-based treatments.”
Barely a year after his first symptom, Ryan was finally diagnosed with FTD.
“In the beginning it was confirmation. Validation,” says Tia. “The next second it was completely devastating. It was a death sentence” – one without a goodbye, as Ryan’s speech and consciousness were gone. He could only say “yes”.
Tia turned her attention to finding a facility for Ryan that could help him and raising her children “in the shadow of a dying father” for an ambiguous time: FTD sufferers live with the disease an average of six to eight years, according to the National Institute for aging. Segil adds that an accurate diagnosis is essential, however, since other reversible causes of memory loss — such as an abnormal thyroid or brain tumors — must be ruled out.
‘Keep at least one of your feet in the land of the living’
Tia says her veteran husband was denied care by her VA nursing facility, although Tia contacted her senator and 35 facilities afterward. No one is interested in taking in a potentially violent middle-aged dementia patient, she says. Eventually, a local reporter covered Ryan’s story and he was admitted to a nursing home.
Ryan spent his last two years in hospice, which Tia calls his rescue. She had put up signs like “My favorite beer is Bud Light” in his room at the nursing home to humanize Ryan. “I’m trying to convince the people who take care of him in the nursing home that he’s human.”
People asked why she visited them so often. Tia had lost her entire support community, including church friends who turned their backs on him when Ryan’s behavior changed and family who chose not to care for him in the long run. However, the nursing home hospice worker gave her a good lesson about grief: “‘Ryan won’t survive this, but you and the kids will. You have to do more than survive. You have to live,’” she recalls.
For others who are enduring life with a loved one with dementia, Tia recommends “putting at least one foot firmly in the land of the living and remembering to look around in the present and stay in the moment.” Instead of drowning in thousands of regrets, “keep moving forward,” she says.
Tia says she’s choosing to release her anger at a healthcare system that has “100 percent” failed her and her children while trying to care for Ryan. “I can’t carry that around with me for the rest of my life,” she says.
But what she can do – and why she wants to share her story – is to help others become aware of FTD and dementia-related illnesses. Tia hopes that by sharing what she and Ryan have been through, more people will learn about FTD and donate to research-based causes like the Association for Frontotemporal Degeneration.
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