Living with Alzheimer's: Longtime Cocoa philanthropist's light dims as the disease sets in
A polished, black baby grand piano occupies a place of honor in a corner of the living room in Susie and Tom Wasdin's condo in Cocoa Village.
Behind it, a sliding glass door offers a panoramic view of the Indian River.
A few years ago, at one of the Wasdins' many parties, Tony Macaulay sat at the piano and played a sing-along of his hits, which include "Baby, Now That I've Found You," "Build Me Up Buttercup" and "(Last Night) I Didn't Get to Sleep at All."
These days, the piano mostly sits quiet unless Susie feels up to striking a few chords and arpeggios.
"She still plays the piano," Tom said. "She's concerned she's not playing it real well, but it sounds good to me."
Susie Wasdin, 74, has Alzheimer's disease.
Once a vibrant, glittering part of the Space Coast social scene who raised millions of dollars for local organizations, she now spends her days in quiet contentment, sitting in a back room of the condo with Tom watching sports on TV.
"We have a rule. Susie gets to do what Susie wants to do," said Tom, 88.
And one thing he knows Susie would want to do is tell her story.
It's what she encouraged him to do back in 2008, when he went public with his struggles caused by trigeminal neuralgia, a condition that causes so much nerve pain that doctors sometimes call it "suicide pain," as some patients end up taking their own lives.
The Wasdins hoped that telling his story would help others suffering from the rare disease.
Now it's time to help others with Susie's story.
"Even in the position she's in now, she still wants to give," Tom said.
A quick decline
For more than three decades, Tom and Susie Wasdin were a power couple in Brevard. She helped him run Wasdin Associates, a real estate and rental company. They hosted lavish parties in their condo.
Susie planned fundraising events for non-profits, arts groups, political campaigns and education foundations.
They were always on the go.
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She started showing slight signs of memory loss as early as 2017, Tom said.
"I remember the first time she said to me, 'What's their names?'" he said. "She knew everybody. She worked the room. She knew everybody's name. I had to ask her people's names."
After that, she experienced a gradual, but consistent, decline in memory.
She started seeing a neurologist around 2018 and was diagnosed with the beginning stages of Alzheimer's, he said.
The disease didn't become pronounced until the COVID-19 pandemic.
"The pandemic shut down her social life," Tom said. "She didn't get to see any of her friends. In my opinion, it contributed to her rapid decline."
She's in the early stages of a clinical trial, he said, but it's too early to know if it's making a difference.
An all too common story
The Wasdins are hardly alone.
The numbers illuminating the effect of Alzheimer’s disease and other dementias are staggering.
More than 6 million Americans — an estimated 17,600 on the Space Coast alone — are living with Alzheimer’s disease. According to the Alzheimer’s Association, 1 in 3 seniors dies with Alzheimer’s or another dementia, such as vascular, Lewy body and frontotemporal dementia.
This year alone, the cost of those diseases is estimated at $345 billion. That number is projected to rise to nearly $1 trillion in 2050, the year the youngest baby boomers, those born in 1965, turn 85.
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And dementia-related numbers are rising in Florida, said Lyndsey Taylor, program manager for the Central and North Florida chapter of the Alzheimer's Association.
In 2020, 580,000 Floridians 65 and older had Alzheimer’s, figures show, Taylor said. By 2025, that number is expected to be 720,000.
“That’s an almost 25% increase,” she said. “And unfortunately, it’s going to get worse before it gets better, if it does get better, because of how the population is aging.”
That’s why events such as the Walk to End Alzheimer’s, and year-round support for research and services for patients, families and caregivers, are so critical, she said.
The Walk to End Alzheimer's is held annually in more than 600 communities nationwide for the purpose of raising awareness and money for Alzheimer's care, support and research. Brevard's Walk to End Alzheimer's starts at 9 a.m. Sept. 23 at Riverfront Park in Cocoa Village, not far from the Wasdins' home.
An enduring love story
Tom loves looking back on their life before Alzheimer's.
"How did we meet?" Susie said to Tom on a recent summer afternoon. They sat side-by-side on a leather reclining sofa sipping their lunchtime smoothies.
"It's been a long time ago, honey," he said. "Cocoa Beach High School. I was the basketball coach, and you were involved in everything."
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She smiled and nodded. She likes to hear stories about their adventures together, Tom said.
She was a popular majorette, cheerleader and homecoming queen, Cocoa Beach High Class of 1967.
"I didn't know her well, but I didn't like girls being involved with my basketball program," he said. "You can't coach a lovesick player."
It would be 15 years before their paths crossed again.
Tom left Cocoa Beach after a couple of years and moved on to coach at Jacksonville University. Susie went to Brevard Junior College and University of Florida, where she earned a degree in education. She moved to Atlanta to teach.
In 1974, Tom gave up coaching and moved back to the Space Coast. While in Jacksonville, he'd spent summers managing the Canaveral Pier (now the Cocoa Beach Pier), which gave him the connections to launch a career in real estate development.
Susie returned to Brevard in the early 1980s. She was divorced with a 2-year-old son.
"She was looking for a job," Tom said. "Her mother told her to go talk to Coach Wasdin. I hired her on the spot."
Her assignment was pre-selling condos at Harbor Woods on Merritt Island.
"She sold 100 units in two days," Tom said.
In 1985, the couple got married at sunset on a sailboat right off Mallory Square in Key West.
It was romantic, he said, and a bit of a happy surprise for him.
"Susie played a little trick on me," Tom said. "We'd talked about getting married sometime. We went to Key West for the weekend, and she showed me the wedding announcement she'd already mailed to all our friends."
He hasn't regretted making an honest woman of her.
A life of giving
The Wasdins quickly built a reputation for being philanthropic powerhouses.
She loved one-upping herself with each event she planned.
She brought in a horse so guests at a Kentucky Derby Party could pose for photos.
She arranged for the Cape Canaveral Corvette Club to drive partygoers around town in a mini- parade.
At an event for the Brevard Humane Society, she charged attendees a premium to walk the red carpet with their pets.
At a party for the Historic Cocoa Village Playhouse, she had a helicopter land in Cocoa Village's Riverfront Park, an homage to an upcoming production of "Miss Saigon."
"Words cannot express what words cannot express," said Dr. Anastacia Hawkins-Smith, chief executive officer for the playhouse. "Susie Wasdin is one of the most special and kind human beings I have ever known. To know her is to love her."
Hawkins-Smith worked with Susie more than 35 years ago on the Brevard Community College Foundation.
"There were two things that immediately struck me: her energy, and her absolute love for 'Coach' Tom," Hawkins-Smith said. "She truly is a force of nature. Beautiful, smart and absolutely everywhere. She and Tom were the dream team of philanthropy in the area and so giving of their time and talents."
Theresa Clifton, executive director of the Brevard Humane Society, is awed by Susie's willingness to raise money for animals, even though she's never owned, or even considered getting, a pet.
"It was quite a special moment one day 12 years ago when I asked her to help me with a celebration for the 60th anniversary of the Brevard Humane Society," Clifton said.
"I wanted to recognize the achievement in a big way and that was always her specialty, as she is a master of event planning, especially on a shoe-string budget. She opened her little black book and the Tuxes & Tails Gala was born. It was meant to be a one-time event, but she was so enthused with it, we had an overwhelming turnout. The much-needed funds that accompanied the almost 300 attendees sealed the deal for future Tuxes & Tails Galas."
The Humane Society recently hosted its 12th annual Tuxes & Tails Gala.
Susie was on the Eastern Florida State College Foundation Board from 2012-18, said Tonya Cherry, foundation executive director, and was heavily involved in fundraising for the EFSC Foundation. Tom served on the board from 1996-03.
The Tom and Susie Wasdin Endowed Scholarship Fund supports Brevard County students enrolled in the bachelor’s program at EFSC. It provides three $2,000 scholarships per academic year.
The Distinguished Alumni and Friends Scholarship supports Brevard County students with financial need who are pursuing a bachelor’s degree. This scholarship was spearheaded by Susie, but has multiple donors. She is instrumental in keeping the account funded by reaching out to past Distinguished Alumni and friends of the college. The $1,000 award usually goes to two to four students per academic year.
These are just a sampling of the organizations Susie helped.
"It is a fact that the playhouse — and the community as a whole for that matter — would not be the same without all of her work," Hawkins-Smith said.
A day in the life of Alzheimer's
"She still likes to help people," Tom said of his wife.
If he asks her to do something, she may or may not comply, but if he says, "Susie, will you help me by doing this?" she's always willing.
Her days are simple.
"She likes to smile. She likes to get dressed up in her nice outfits and go out to dinner," Tom said. "While we're at dinner, she enjoys having people come by and speak to her. She may not remember their names, but she enjoys it."
Then she likes to go home and go to bed.
Health aides come in seven days a week, arriving in the morning and staying until dinner time. Tom knows he's lucky to be able to provide care for her in their home.
"I'm happy to be able to do what I'm doing," he said. "The goal is to keep her happy."
He sees it as an honor to look after his wife.
"I'll ask her, 'Honey, what do you want to do today,'" he said. "She'll say, 'I don't care, as long as I'm with you.'"
Being a caregiver can get lonely, and Tom tries to maintain connections outside the world he and Susie now occupy. He attends a weekly support group meeting. He has breakfast with friends most weekdays. He takes Susie out for dinner, and on Fridays, they attend a weekly porch party at the riverfront home of friends.
"If I'd known it was going to turn out like this, I'd have still done it," he said. "Nothing makes me happier than to see her smile."
Their granddaughter, Delaney Stroh, is one of the aides who comes in regularly. Tom helped Delaney get Susie into a wheelchair and watched as the two headed down the hallway to get ready for Susie's afternoon nap.
"I love you, baby," he said as Delaney rolled her out of the room.
"I love you, too," Susie said, giving him a bright smile and a wave.
"Go have a good rest," he said gently, "and after you wake up, we'll get dressed and go out to dinner."
The one thing Tom would do differently, given the chance, is to have appreciated what he had sooner.
"We had a wonderful life," he said. "I just didn't realize it. Every morning, I count my blessings, and we've had many.
"One morning, she asked me, 'Why did God let this happen to me?' I said, 'I don't know, but I don't know why we had so many blessings, either.'"
Walk to End Alzheimer's
When: 8 a.m. registration, 9 a.m. opening ceremony, Saturday, Sept. 23
Where: Cocoa Riverfront Park, 401 Riveredge Blvd., Cocoa Village
Contact: Mindy Nadeau, 386-748-8527, mlnadeau@alz.org
More info: act.alz.org
Suzy Fleming Leonard is a features journalist with more than three decades of experience. Reach her at sleonard@floridatoday.com. Find her on Facebook: @SuzyFlemingLeonard or on Instagram: @SuzyLeonard.
This article originally appeared on Florida Today: Longtime Cocoa philanthropist's light dims as Alzheimer's sets in
