They honor John Silvestri's legacy in different ways, but mostly by who they have grown up to be, his daughter says. She wrote his story to make sense of it and to share him. The oldest daughter, Flavia, inherited his intelligence with money and decision-making. When she recently bought a house, says her sister, she was honoring his legacy. "I know he'd be proud of her." Their little sister, Nicole, spreads to others the seemingly endless compassion she developed growing up in the middle of the disease.
Silvestri sums up with a realization she shares with the Thredgolds and anyone else living such a diagnosis: "Life can be long and it can be very short," she says solemnly, and it can be both at the same time.
It seems to Lynnette Thredgold that her life has been cruising toward this circumstance, her own journey preparation for it. She is a professional violinist who has three CDs out and another in the works. Her music soothes Thredgold when he's restless, even mean in the evenings, a circumstance called "sundowning." He sleeps little, so she must be vigilant.
Recently, after a brief absence, she came home to find him stacking things into a tower. It was a mess, but she couldn't be mad. He was like a child, acting up. "Here I am. Pay attention."
Formerly a professional wrestler and body builder; her physical strength is valuable as he grows weaker but more combative. She grew up poor, she says, so that doesn't scare her, which may be a good thing.
She is surrounded by the life they have collected through hard work, from the showcase house to the trinkets from a passion for travel. He was always successful. He knew money – how to make it, how to care for it, how to give it generously to others. She's not sure she knows what to do.
"The law doesn't protect an illness like this," she says. "I have all the responsibilities and no income to pay. He had a business with employees, a huge office. All that is gone and I have to unwind the mess — and at the same time look after an ill man who doesn't believe he is ill."
A decade ago, they were named one of Salt Lake Magazine's power couples. Now she feels powerless as he sometimes sneaks off for spending binges he'd never have done while well. With no money coming in and the house and other obligations, undertaken in happier days, they face terminal financial hemorrhaging.
She has been trying to figure out what to do on many fronts. She's consulted professionals, but they often give contradictory advice. The disease is peeling layers from their lives. They have no long-term care and she is trying to sell the house. Trying to explain to him why they have to sell is the worst part, she says.
When they married, he had four children; together, they had two. The children help as much as they can, given their own families and obligations, she says. But there are rifts and she sometimes feels "the family is being torn apart."
Thredgold has been getting ready to golf for a couple of hours. It's still a passion and he holds a long-drive record. He golfed 36 holes every Saturday and Sunday with his dad as a kid.
Today, he'll go to the golf course a handful of blocks away, but first he will leave and come back multiple times to give gifts to his guests or add a few more words. He offers one of his books. Shortly, he returns with a smile and a couple of Lynnette's CDs. She's producing a show for singer-songwriter Paul Cactus-Jack LaMarr and Thredgold offers one of his CDs, too. The returning and giving are signs of the compulsive, repetitive nature of FTD.
"I hope he'll be able to keep golfing when I can't pay his golf fees," Lynnette says.
She's trying to figure out the right way to handle money when it comes to her husband. She is his legal guardian and has allowed him one credit card, mostly so she can track him if she needs to. He's physically very mobile. She can't watch him all the time; sometimes he literally sneaks out, tickled by his cleverness. She found him once hunkered down in luxury at an elegant hotel. It is a lifestyle he worked hard to earn, but one they can no longer afford and she mourns his sorrow when she says no.
"He was a workaholic, an awesome grandpa, a man who showed his love for family by working hard and making money and supporting all of us. He was involved and always went to his kids' many activities, but he was the on-task parent. I was the easy one."
His closet mirrors his story of decline. They got his-and-her closets because he was so picky and her more laid-back style drove him crazy. He kept his shoes, his shirts, his ties organized just so.
These days, chaos rules not just his clothing, but their lives and she says they're not handling it very well.
"Now he is exactly who he didn't want to be," she says.
Then she hugs him, holding on tight.
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