Caregivers face vital, lonely journey

Frank Burkett and his special lady are seated next to each other in a booth at Niki's Family Restaurant, plastic-covered menus they will not use in front of them on the sparkling-clean table.

The 72-year-old retired educator and Florence Lampp, also 72, eat at Niki's at 4 p.m. sharp, every Tuesday. They have a regular table and ask for the same server, Elli Bolduc.

The two order soup and sandwiches. Frank encourages Florence to eat a little more of her chicken salad. After they finish, Frank asks the server for one piece of chocolate cream pie and two forks. Florence, as usual, takes one bite. Frank polishes off the rest.

"We always share a dessert," he says.

What they do not share is conversation, unless Florence is parroting something Frank says.

Florence Lampp has vascular dementia. And Frank Burkett, who used to love the sound of his girlfriend's laughter, is now a caregiver.

According to the Centers for Disease Control and Prevention, unpaid caregivers provide 90 percent of long-term care for aging, ill or disabled family members.

There are no hard numbers on the caregiver population in Brevard County. But in a place with more than 160,000 baby boomers and where more than 20 percent of the population is 65 or older, the possibility that many of them will be caregivers, or need care, is great.

For most, it's a labor of love, but it can be emotionally and physically taxing.

On a recent day, Florence, a former bookkeeper, proudly shows off her diamond ring which once belonged to Frank's mother. She smiles, briefly, when her picture is about to be taken. But, soon, a blank stare returns to her face.

Frank has taken care of Florence every day for more than a year. Dressing her. Taking her to physical therapy. Fighting for eight months to get Florence, who is broke, on Medicaid to cover health care costs not taken care of by Medicare. Being turned down and paying $1,350 a month out of his own pocket for her medicine until they won a second appeal.

"I have stepped on some toes," he says.

Getting support

Caregiving is draining. Depending on financial and insurance circumstances, it's expensive. For home-based caregivers without medical backgrounds and family support, it can be especially hard.

Dr. Pamela Tronetti, a member of the Parrish Medical Group and osteopathic physician who specializes in geriatric medicine, says it's estimated that nationally, family caregivers devote an average of 20 hours a week to the care of loved ones.

"A caregiver's worst enemies are denial and guilt. It takes time, but caregivers learn to find their inner strength and the knowledge that they now have a new role," says Tronetti.

"They learn to set boundaries with other family members if necessary, accept help from professional caregivers and recognize that their loved one has needs and limitations that require a new lifestyle."

Even with an aide, adult day care or a long-term care setting, "You are still the most important person in his or her life," Tronetti says.

"You are still the caregiver. Caregivers are our heroes, but they're not superheroes. Sometimes they have to hang up their capes and realize that if they have a stroke, heart attack or other medical condition that is brought on by exhaustion, there will be no one to take care of their loved one."

That's how it is for Florence, a widow, and Frank, both of whom have no children.

He was widowed in 1994 when his wife, Sandra Burkett, who worked for years as a resource counselor in public schools, was killed in a car accident.

After that, Frank, at one time a Brevard School Board member, retired from teaching and moved into an RV. He owned a cleaning company for a while, and, on a business trip to Georgia in 2001, met Florence. She came to work for him but kept her place in Georgia.

The two enjoyed a long-distance relationship until early 2013. Then Florence had a car accident, which, doctors later said, was probably caused by a stroke preceding the wreck. The couple, who loved to travel, took a trip to Alaska not long after that.

"We had a wonderful time, didn't we?" Frank asks.

"Yes," Florence answers.

But soon, she was forgetting things. Frank and her friends were concerned. Then came the diagnosis of vascular dementia, caused by blocked or reduced blood flow to the brain and, after Alzheimer's, the most common form of dementia.

Now, Frank and Florence live in a 30-foot RV in a park off U.S. 1 near Palm Shores.

He had no choice, he says, but to move the woman he loved to a place where he knew she'd be cared for — with him.

Fierce advocate

Frank is fierce when it comes to advocacy — and through a strict daily schedule, a semblance of "normal" life.

He carries a business-style card that announces he is with someone who has dementia, and presents it to those who wait on him and Florence when they go out. He carries copies of DNR — Do Not Resuscitate — orders for the two of them at all times.

Each weekday, he drops Florence off at a Joe's Club adult day care service location by 7:15 a.m. He then "goes at it as hard as I can" in a two-hour workout at Pro Health: "I have to stay healthy," he says.

At 4 p.m. Monday, Florence has her hair done. On Thursday, Frank attends a caregiver support meeting. At 5 p.m. Saturday, they attend church at Faith Lutheran in Viera.

Every evening, they take a quarter-mile walk with Florence's shih tzu, Precious. Every night, Florence curls up on the bed in the RV with Frank and a stuffed toy camel.

"I have a very structured system for her and that's probably because of my 27 years in education," says Frank, who was teaching at Brevard Community College when he retired and, like Florence, relies heavily on his Social Security check.

"And I adhere to that structure, right down to the time and the days."

Frank is strong, healthy. Other than the dementia, so is Florence. So watching her "die daily" is grueling.

"She'll have that strictly blind look and try to say something to me and she can't," Frank says. "That beautiful person you know she was and is … a long goodbye, that's what it is. I hear stories worse than mine, but you don't know from one day to the next what it's going to be like."

Yet even with the unknown, he doesn't falter.

"I became a caregiver by choice. I don't have to do this, I chose to do it because I love her …" Frank says, his voice wavering, then getting stronger again.

"And if you're going to be a caregiver, you absolutely have to be a strong advocate. There's no one to represent them except their caregiver … I'd move heaven and hell to see that she got the right care."

Sources of help

Brevard County has several sources of help for caregivers, those who can afford to pay more and those on tight budgets.

Joe's Club, the adult day care service, has about 60 percent occupancy on any given day. They'd welcome more.

"Unfortunately, finances and transportation seem to be the main reasons why we aren't able to assist more people," said John Jordan, compliance coordinator for Joe's Club.

"Another reason is the caregiver is emotionally attached to the client, and vice versa, and doesn't want to let go … change is very hard."

But on top of the current caregiving population, Jordan says, the influx of baby boomers who will provide or need assistance is daunting. And it's not just Brevard County that doesn't have enough resources to go around, he adds.

"It's an epidemic. I heard from a state official that said there is simply not enough money to help everyone," he says.

And throughout the experience, it's a lonely journey for the caregiver.

"Your friends leave you," Frank says. "It's not because they want to, it's because they don't understand."

Tronetti says her office tries to ensure the patients and their families have a social support network.

"Our goal is to create a 'safety net' before there is a critical juncture," she says. "We evaluate their needs, resources and safety concerns. We will refer to attorneys, financial advisers, social agencies and local long-term care facilities."

Adult day care, she says, "is an underused service."

Sunflower House, Aging Matters, One Senior Place and the Alzheimer's Foundation and Joe's Clubs are all sources of good information on adult day services and other topics related to caregiving, she adds.

"Each client differs in their needs and level of dependence upon the caregiver for support," Jordan says.

"Higher-functioning clients may just need assistance with housekeeping or managing finances. Lower-functioning clients may need total care, including toileting, hygiene, feeding. Everyone is different … Daycare at Joe's Club gives the caregiver a much-needed break, of not worrying about the client."

Caregivers may use the time to run errands, shop or, like Frank, exercise and take care of business matters. Some just go home to take a nap or catch up on chores.

Frank knows he'll soon have to implement what he refers to as "Plan B" — the day Florence leaves their comfortable RV for good. He has researched nursing homes to make an informed decision "when that time comes." It's hard for him to talk about it.

During their meal at Niki's, Florence leans over and kisses Frank on the mouth. He tears up.

"Do I take good care of you, baby?" he asks.

"Yup," she says, staring straight ahead.

Later, on their evening walk, Frank stands off to Florence's side, ever-watchful, holding Precious. As they pass a drainage ditch full of water, Florence, as always, tosses bread crumbs to a hungry ibis.

"Today ... this has been the most emotion she's shown in a long time," Frank says, his voice almost a whisper.

"This is wonderful."

10 Tips for Family Caregivers

Taking care of a loved one? Consider tips from Cindy Flachmeier, CEO and president of Aging Matters in Brevard.

Accept your feelings

Becoming a caregiver can trigger emotions such as anger, fear, and resentment. You need to acknowledge and accept those feelings. It's OK to be angry — you're human.

Don't try to do it all

You can't do everything on your own. You will need help from friends, family and health professionals. Accept help.

Make sure you understand your loved one's needs

You can't make decisions about what services your loved one might need until you figure out what their specific needs are.

Set boundaries

This is part of not trying to do it all. You can't be available every moment of every day, and you can't say yes to whatever is asked of you all the time, because you'll burn out.

Attend to your own needs, too

You're trying to fulfill your loved one's needs, but make sure you are also meeting your own needs, including emotional, social, recreational and physical needs.

Provide long distance care if needed

Taking over care for your loved one doesn't necessarily mean that you are going to move in with that person. Trying to manage care from a distance isn't easy, but there are some things you can do that will make it more manageable. For instance, you can schedule a daily phone call or email to keep the line of communication open and ease your worries.

Learn how to communicate effectively with doctors

Your loved one's doctors and nurses can be a great resource. They can provide you with the medical knowledge you need as a caregiver, and they can help you through the disease process.

Make sure that all legal documents are in order

Speak with a professional about wills, living wills, advance health care directives, durable power of attorney for healthcare and finances, and DNR/DNI (Do not resuscitate/Do not intubate) orders. Discuss your loved one's wishes with them before it becomes a crisis.

Manage caregiver stress and burnout

You probably can't prevent the stress, but you can try to alleviate it before you become burned out. Know the signs of caregiver stress, such as anxiety, difficulty sleeping and trouble concentrating. Know the signs of caregiver burnout, which include constant illness and exhaustion and feelings of helplessness or hopelessness.

Take advantage of community services and resources

Find out what services are available in your community. This includes direct services for your loved one, like personal care, meals and transportation, and services for you as the caregiver, such as support groups or respite care.