Longest day focuses light on Alzheimer’s

Jay and Lee Ferrette, of the Village of Virginia Trace, dance together during a performance by Village Dreamz in the Village of Mallory Square on Monday. Jay was diagnosed with Alzheimer’s disease about five years ago. He and Lee like to stay active and enjoy dancing together.

When close contact isn’t being discouraged, women still line up to share a dance with Jay Ferrette. The Village of Virginia Trace resident, an experienced ballroom dancer, sticks to waltzes or foxtrots these days. “He used to be the best tango dancer you’d ever want to see,” said Arleta “Lee” Ferrette, his wife of 55 years. Familiar steps don’t come easily anymore. He may forget his partner’s name by the end of the song. Jay is one of an estimated 7,823 people living with Alzheimer’s disease in Sumter County. He’s still able to do most tasks on his own, except for driving, and they’re enjoying an active life together, Lee said.  But worsening short-term memory upsets Jay at times.

“You can talk to him and say, ‘Go get this and go get that.’ By the time he gets to the room, he forgets,” Lee said.

Today, the day of the year with the most sunlight, the Alzheimer’s Association is bringing attention to those affected by Alzheimer’s disease with an awareness event called the Longest Day.

Residents can take part by organizing fundraisers or spreading the word about the progressive brain disorder, which has no known treatment or cure.

Last year, local interest in the annual event started to pick up, said Carly Wille, manager of the Longest Day for the Alzheimer’s Association, Central & North Florida Chapter. An event at Tierra del Sol Recreation Center sponsored by Seniors Helping Seniors raised $2,300.

Wille expects that momentum will continue in 2020. People are finding ways to help the cause while following social-distancing guidelines amid the pandemic. For example, a Clermont resident will spread the message on the road.

“He’s going to ride around in his golf cart decked out in purple and help us raise that much needed awareness,” Wille said.

Despite two big local Longest Day fundraising events being postponed, “the Longest Day is not canceled by any means.”

New way to understand

Wille thinks the coronavirus pandemic — when many people temporarily experienced being cooped up inside for the first time — could help people better understand the issue.

A feeling of being stuck inside their minds is something people with Alzheimer’s disease and other forms of dementia deal with every day, she said.

“Everyone was going a little stir crazy,” Wille said. “If we couldn’t handle it for a couple months, imagine being in their shoes.”

The pandemic disrupted routines for many residents with dementia and their caregivers.

Respite care groups such as the Day-Break Club at Odell Recreation Center or My Time for Free Time at Hope Lutheran Church are unable to meet.

“In normal times, it’s difficult 24-7 for a caregiver,” said Bob Janson, coordinator of My Time, where volunteers normally would be fighting for a chance to dance with Jay Ferrette. “I’ve never heard one complaint.”

Norita Vanwart’s husband, Alvin, loved playing poker with friends at the Day-Break Club while his wife of 61 years had some time for herself. Alvin was diagnosed with Alzheimer’s disease about eight years ago.

“He looks forward to going to that on Tuesday afternoons,” said Norita, of the Village of Summerhill. “I try to take him for golf cart rides and things like that, but it isn’t the same as being around people because he’s a people person.”

Many caregivers are under greater pressure during the pandemic, said Candice Beasley, clinical assistant professor at Tulane University School of Social Work.

With that in mind, Janson said My Time has been regularly calling caregivers and sending emails. A volunteer who leads the group’s exercise sessions sent video of a workout they could recreate at home, and every member received a book with activity suggestions.

Adjusting routines, not eliminating them

Beasley said caregivers can try to keep a sense of normalcy for loved ones by adjusting any activities they would normally be doing.

For example, if they can’t go to a recreation center for socialization, they can communicate with family or friends via video chat.

It’s also important for caregivers to take time for themselves, Beasley said, and to avoid worrying about perfection.

“Caregivers have to be kind to themselves and remember that they’re doing the best they can with what they have,” she said. “I think that caregivers sometimes forget that the rest of us look upon them with admiration.”

Lee Ferrette keeps a positive attitude knowing her “sweetie pie” will need more assistance over time.

“He’s worth it,” she said.

She gets a little sad seeing members stop returning to My Time because they moved into memory care or died.

“You know it’s going to happen to you,” Lee said.

Jay, remains in good health and has regular checkups to monitor his Alzheimer’s progression at UF Health in Gainesville. He also exercises for an hour a day seven days a week, spending half that time on a stationary bike and the other half on a recumbent elliptical.

Jay still does sudoku puzzles — “I can’t even do that,” Lee said, laughing.

His appearance of good health can sometimes be difficult when out and about in the community because strangers don’t always realize he’s dealing with an invisible ailment, she said.

But Lee’s grateful for local resources and an overall sense of support.

She encourages the community to welcome people with dementia into their circle of friends.

“These people have so much to offer,” Lee said.

She believes researchers will find a cure for Alzheimer’s disease, but isn’t banking on it happening in time to help Jay.

“I don’t think it’s going to happen in my lifetime,” Lee said. “But we’re doing the best we can. I’m not giving up — no way.”

So the couple’s focus is living with the disease. They go fishing once a week and piece puzzles together.

“Just go out and live as much as you can,” Lee said.

The Ferrettes used to head to the squares for dancing, in addition to Jay enjoying the musical entertainment at My Time. They’re adapting to new dance halls, taking it to the streets when entertainers put on driveway performances.

“If we can’t, we dance around the kitchen,” Lee said.

Senior writer Ciara Varone can be reached at 352-753-1119, ext. 5395, or ciara.varone@thevillagesmedia.com.