“Who will take care of you when you are unable to take care of yourself?”

That’s the most important question you can ask when planning your future, according to gerontology experts. And whether it’s a spouse, a sibling, a child or even a close friend, those who commit to caring for a loved one face a heartbreaking set of physical, financial and emotional challenges.

As one of the oldest places in the nation, populationwise, Sarasota has an enormous number of seniors who need or will need ongoing care. Many of those seniors moved here after retirement, so they may be thousands of miles away from relatives who could share the personal supervision, transportation, financial management, home upkeep, medical oversight and all the myriad other responsibilities inherent in being a caregiver.

But with few families here to help shoulder the burden, Sarasota has become home to some of the best third-party support services in the country: daycare, transportation, healthcare and even grants and scientific research. Where one person might be alone in providing a loved one’s personal care, Sarasota recognizes that it takes a community to be a caregiver.

The key, however, is connecting the caregiver with the help that’s available.

“When it comes to aging services, people don’t pay attention until something catastrophic happens,” says Kathleen Houseweart of Sarasota Memorial’s Memory Disorder Clinic. New caregivers, often overwhelmed by their situation, aren’t always aware of the wealth of help in the area.

Indeed, some caregivers are thrust into their role by sudden circumstance—a stroke or heart attack that incapacitates a loved one, or even legal or medical troubles that place children in the care of their grandparents.

But in other cases, becoming a caregiver is a process that stretches out over months or years of often unnoticed adaptation. Some people, especially spouses, don’t identify themselves as caregivers, even after they’ve taken over virtually every responsibility in the household—from bill paying to grocery shopping to arranging social outings.

Regardless of circumstance, being responsible for someone full-time stresses every personal resource, often resulting in diminished health and sometimes depression. Caregiver burnout is a major concern. “Then you’ve got two people in need,” says Kathy Black, a USF Sarasota-Manatee gerontology professor and former nurse who cared for her ailing grandmother for 10 years. “Lots and lots of studies show the poor consequences of being a caregiver.”

But amid the stress and strain is something that many caregivers call a blessing: the chance to act unselfishly for someone you love.

“You develop an understanding of the capacity of your character,” says USF’s Black, “a capacity to give and to love far greater than you ever knew.”

Here are three stories of local men and women who have learned not only about the challenges of caregiving but also about the strength and depth of love.

 

“I Miss the Man Who Was My Husband”

In the midst of grief, Cheryl Duley deals with her beloved John’s dementia.

 

For more than 20 years, Cheryl and John Duley were a doting couple. In fact, their friends often joked they were so affectionate it was “disgusting.”

But nearly two years ago, John, now 69, suffered a heart attack. He began experiencing unpredictable, debilitating hallucinations. He was diagnosed with lewy body dementia—a protein buildup related to Parkinson’s disease, and the second-most common form of dementia, after Alzheimer’s.

Like many caregivers, Cheryl, 62, had gradually been assuming household responsibilities for some time before the diagnosis. John, a retired mechanic, had abandoned car repairs (he had trouble remembering how to pop the hood); they’d argued over the haphazard way he loaded the dishwasher.

Now his dementia demanded constant supervision.

Cheryl, who’d purchased long-term care insurance for her and John after being caregiver for her ailing parents a decade ago, took charge of John’s medical care, the couple’s financial and legal affairs and their one-acre property in east Sarasota, all while grieving over the loss of her blissful marriage.

“You’re emotionally drained, distraught, confused, overwhelmed,” she says. “And you’re also having to be very practical.”

Four days a week, SCAT Plus, a special public transportation service, brings John from Cheryl’s office on east Fruitville Road to downtown Sarasota’s Senior Friendship Center for the day. That’s been “a godsend,” says Cheryl, allowing her to work full-time as an event and marketing coordinator. (Her longtime employer, Universal North America, lets her work from home on Thursdays.)

She also appreciates the outpouring of support from friends—a natural response, it turns out, in an area where so many live far from extended family. (A recent study found that 80 percent of people in Sarasota and Manatee planned to turn to friends first if they needed advanced care.) Friends have even had John stay with them while Cheryl travels for work.

Still, the emotional toll is steep. “I miss the man who was my husband,” Cheryl says, her voice cracking. “The type of person I am, falling into the role of the caregiver is easy for me. But I don’t have my rock anymore.”

Whenever she feels impatient or shortchanged, Cheryl turns to one thought: “I know what he would be doing for me if the roles were reversed,” she says.

 

FACTS & STATS

66 percent of caregivers make some adjustments to their work life.

Lewy body dementia accounts for 20 percent of all dementia cases.

25%

FLORIDA caregivers over 65

 

The Young-Old Caregiver

According to USF gerontology professor Kathy Black, 25 percent of Florida caregivers are over 65. (She calls them the “young-old.”) In the Sarasota/Manatee area, fully half of those 65-plus caregivers are caring for their parents. It’s an amazing figure, says Black, that points to our area’s aging demographic.

“It’s just the beginning,” she says. “When you get people living into their 80s and 90s, you’ve got these multigenerational families.”

And that figure underscores the importance of caregiver services, especially with regard to healthcare. Unfortunately, the physical and psychological challenges facing any caregiver are magnified by age. “It’s problematic,” says Black, “because the ‘young-old’ are now dealing with their own health issues, as well. Now they’ve got their elderly parents.”

Without these caregivers, society would face the astronomical expense of caring for the elderly through assisted living. “There are approximately 1.5 million people in nursing homes in this country right now,” says Black. “They estimate about three times that many could be, but are at home.”

On the plus side, older caregivers understand the challenges that come with aging. Rather than not thinking about or planning for unpleasant developments like dementia, depression and immobility, they expect and can accept those negative eventualities. “Look, you don’t make it to age 70 unscathed by losses—of your own functioning, of people that you love, of your own deteriorating health,” says Black. “You simply know.”

FACTS & STATS

One-third of caregivers in the U.S. are male.

Only one-tenth of caregivers of veterans are male.

 

Parenting Your Parent

Ingenuity and love have helped Paul Mattison on his father’s journey into dementia.

 

As with many grown children who wind up caring for a parent, Paul Mattison’s caregiving for his now 90-year-old father “evolved a little bit at a time,” says the Sarasota chef and restaurateur.

When Paul’s father, Cal, first moved from New York to Sarasota in 1997, he was an active retiree. Paul eventually hired him at his downtown Mattison’s restaurant as a lunchtime maitre’d—a perfect position for the gregarious and funny Cal.

Six years ago, when the restaurant work became too difficult, Paul convinced his father to volunteer at Senior Friendship Center. (Cal, a World War II veteran, insisted he didn’t want to go as a client and “hang around a bunch of old people.”) Cal had also had a minor car accident and stopped driving.

Checking in with his father a few times a week, Paul began assuming more responsibilities—bills, medications, meals—until it became apparent that Cal could no longer live on his own. Still, Cal was adamantly against assisted living. So Paul purchased a house adjacent to his own, and Cal became his next-door neighbor.

“Being able to keep an eye on him is huge,” says Paul, who lives with his wife and two young children. It’s strengthened family bonds as well. Paul’s four-year-old daughter often goes next door to play with her grandfather.

Suffering from mild dementia, Cal still manages some small household tasks, but he needs help taking his medications, has to be reminded to eat or even to shower and often loses track of time.“It’s hard to see him get so confused over the silliest things,” says Paul, who admits that parenting the parent you once saw as all-knowing and all-capable can be heartbreaking. “At first he gets angry and defensive, but if you sit and talk quietly, he does get cooperative most of the time,” he says.

Along the way, Paul has discovered new reserves of patience. When his father is being particularly difficult, he says, “I go outside and think, ‘OK, he’s making me very angry, and I can’t get angry. It’s not going to help the situation, and it’s not his fault.’”

Cal now attends the Senior Friendship Center’s adult daycare program, the Living Room. He still wears his volunteer badge and visits with other clients as a “counselor.”

“His feeling is that there are people who are in worse shape than he is,” says Paul, “and if he can help them to reminisce a little, talk a little, stay a little more active, then he feels fulfilled. And that’s good for him.”

 

FACTS & STATS

1,166: number of grandparents in Sarasota County responsible for their own grandchildren.

Grandparents caring for grandchildren make up only 3 percent of U.S. caregivers.

 

Second Time Around

Not everybody who needs care is a senior. Alan and Carol Lafoy are raising their three grandchildren.

 

After Alan and Carol Lafoy raised two children, the couple moved from Alabama to Florida with dreams of buying a mobile home and touring the country. Instead, they now are raising another family: their grandchildren, Dominic, 10, Natalie, five, and Lincoln, six months.

Dominic’s father, the Lafoys’ son, Todd, struggled with ADHD as a child and developed drug problems as an adult. One night when Dominic was a baby, Todd forgot to take him out of the car when he got home. Dehydrated, the child was sent to the hospital by ambulance. And rather than having their grandson placed in foster care, Carol and Alan took him home themselves.

“You don’t think long-term in the beginning,” says Carol, 66. “If I knew we were going to retire and raise grandkids, I think I may have run to the farthest corner I could find.”

While they hoped that Todd would soon straighten his life out, they didn’t hesitate to assume full-time parental roles, teaching Dominic to ride a bike and helping him with his homework. Alan, 64, a Navy veteran and retired steel worker, now accompanies Dominic on Boy Scout camping trips; Carol frets over the boy’s new interest in tackle football. “Littlest one on the team,” Alan boasts, “but he’s in there with them.”

Last year, the Lafoys adopted Dominic.

Unfortunately, their daughter, Amy, recently developed an addiction to painkillers. Her two children, Natalie and Lincoln, now also live with the Lafoys while Amy, 30, seeks treatment.

Between managing three children and hosting the parade of state agency investigators who check in on the children, the Lafoys take advantage of every quiet moment. “When we get the two oldest off to school, we come back and nap with the baby,” Alan adds, laughing. “I try to get my strength built back up.”

With no other family in town, the couple receives advice and support from Kinship Partners, a program for grandparents raising their grandchildren that’s affiliated with Children First in North Port.

Most nights, when they’re not re-learning fractions through homework assignments or checking out the latest computer game, Carol and Alan take the kids out for family bike rides. It’s not the retirement they dreamed of, but Alan says, “I enjoy it. I get to play all the time.”

 

 

RESOURCES

Senior Friendship Center

1888 Brother Geenen Way, Sarasota, (941) 955-2122, friendshipcenters.org

(Additional locations in Venice and Manatee County)

 

JFCS Senior Services and Sarasota CARES caregiver services

2688 Fruitville Road, Sarasota,

(941) 366-2224, jfcs-cares.org

 

Alzheimer’s Association—Florida Gulf Coast, Sarasota office

3277A Fruitville Road, Suite 1, Sarasota, (941) 365-8883, alz.org/flgulfcoast

 

Kinship Partners, Children First (North Port)

6926 Children Way, North Port,

(941) 698-1943

 

U.S. Veterans Affairs Department

4801 Swift Road Suite A, Sarasota, (941) 927-8285

 

SCAT Plus

(941) 861-5000, scgov.net/SCAT