Largo summit addresses caregiving, a $470 billion industry




There are 43 million adults in the U.S. caring for aging parents, chronically sick children or disabled family members. But statistics have little meaning. What does matter is waking up at 2 a.m.; the face of a cellphone glowing and vibrating in darkness. An operator then tells you your mother has fallen.

According to AARP, caregiving is a $470 billion industry. That's the equivalent to the income ledgers of the Wal-Mart Corporation. Filling appointment calendars, at-home caregivers maintain jobs and harried lives trying to give quality of life while juggling doctor’s appointments, medications and treatments.

St. Paul United Methodist Church in Largo, which hosted this year's Family Caregiver Lifespan Summit, is also home to Handicapable Ministry serving more then 300 developmentally disabled persons.

But who is taking care of the caregivers?

St. Paul United Methodist Church in Largo, which houses its own Handicapable Ministry for more than 300 developmentally disabled persons, hosted the 2017 Family Caregiver Lifespan Respite Summit June 15. It brought to the table government agencies and nonprofits searching for ways to provide better respite services to 3 million caregivers in Florida who don't know where to turn.

"I'm a long distance caregiver for my 91-year-old mother," said Jill Kagan, director of the ARCH National Respite Network and Resource Center. Based in Washington D.C., Kagan is familiar with airlines and flight schedules to and from Florida. Her mother lives in Plantation. "We're trying to keep her in her home,” she said.

"Providing hours and hours of continuous caregiving, the stress can be overwhelming,” Kagan said. "We believe in our hearts, and research is beginning to show, that respite can actually make a difference."

Kagan explained that 85 percent of family caregivers don't receive respite of any kind. When they do, "it's too little, too late."

For caregivers like Amanda Singleton, it’s a reality that came suddenly.

"When I was 30 years old, my mother was suddenly diagnosed with brain tumors. From the time she was given her MRI, she was in surgery within two hours,” Singleton said. "By that night, we knew she had cancer and a very short prognosis.”

Describing the moment as life changing, Singleton said she knew then it would be up to her to see her mother through her final days in a way that allowed dignity and a peaceful passing.

In addition to offering recently published books and other resources, the summit in Largo was described as an opportunity for agencies to "shake hands." The challenge is to provide better access to respite services to those who have limited resources.

Singleton was a newlywed who had just purchased a new home. She was the litigator for a large law firm in Tampa. "I traveled all the time. So I tried to keep all those balls in the air, and I wasn't very successful.

“If you’re not tending to yourself as a caregiver, then you will probably end up sicker than your care partner,” she said. Singleton paused for a long moment closing her eyes. "I was down to about 90 pounds. I didn't sleep. I survived on coffee and prayer."

"When my husband is having a bad day, and he's in the middle of having seizures, he doesn't want me to leave him alone,” said Christine Bower, a member of St. Paul UMC whose husband suffered a massive stroke at age 67. "But I have to put up the dogs because paramedics are coming. He doesn't get it. He yells. And I want to yell back. I know I can't do that,” she said.

“I'm not perfect. I'm far from perfect.”

The couple graduated from high school together. Stating she wanted to change the world, they adopted four special needs children. One with autism moved back home to help care for her husband Steve.

Steve works in a toy ministry at St. Paul. A week ago, the couple celebrated their 50th wedding anniversary. She describes him now as a strong and loving Christian man.

"There were days I'd go into the bathroom and lock the door and cry,” she said. “To be honest, I didn't know about respite, probably because I didn't want to. I thought I was supposed to do it all."

Another caregiver, Evelyn Johnson-Taylor, described her then 48-year-old husband who kept falling and losing the ability to walk. Originally diagnosed with Hodgkin lymphoma and receiving a stem cell transplant, doctors later called it neuromyelitis optica. There were lesions on his spinal cord.

“He's in excruciating pain 24-hours a day,” Johnson-Taylor said. “I'm a caregiver. It took a lot of years to call myself that. I thought, I'm his wife. What else can I do?”

An author and speaker who travels frequently, she called respite care a necessity. Through experience, she found inpatient respite care "very, very expensive” and turned to neighbors who offered support.

“I was a registered nurse for 15 years. So, it took some time before I was comfortable asking people for help,” she said. "One thing I learned, caregivers are often overlooked. Most of the attention is given to the person who is ill. Even physicians concentrate on the patient.”

"The cost of respite just falls off the household budget,” said Kagan. “It becomes a luxury no one can pay for.”

She described the difficulties caregivers face trying to navigate a "complex maze" of government services or even qualifying for them. "That's why the Federal Life and Respite program came into being,” she said. “To try to deal with these barriers.

“Look to programs in your communities you can use now,” she offered. “A local YMCA swimming program that takes children with disabilities or a church program for aging individuals. Look outside the formal services."

"Start with your friends, your faith community," said Singleton. "Don't be shy to ask.

“Seek help early, so you don't need emergency respite care. It means a continuation of caregiving so you can get up and do another day,” she said. “Maybe you can stay in your job a little bit longer, or see your husband who you just married.”

In the end, she added, it’s about fulfilling loved one’s needs and keeping life going.

--Doug Long is managing editor of the Florida Conference
 

Editor’s Note: There are many online resources for additional information. The ARCH National Respite Network website can be accessed at http://www.archrespite.org. You can reach Jill Kagan, program director, at jkagan@archrespite.org.


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