Everyone had a story.
Soulless insurance bureaucrats denying coverage because what was written in paragraph 9b, Subsection 14 (a); a state system of payments and supervision fractured by department, jurisdiction and disability. The fights with family members, and sometimes with the very people they were trying to help.
At the bottom of each story, at the center of each battle with someone, was the determination to protect an adult daughter disabled since childhood, a parent ill with those infirmities that lie in wait for us all, or sliding into dementia, a brother living with mental illness.
They were all there, the caregivers, at the fourth annual conference sponsored by the United Way of Northern New Jersey.
The non-profit agency created the Caregivers Coalition of Morris County in 2007 to provide support and information for the more than 50,000 Morris County residents who are caring for a family member or a friend.
“Caregiving is an emotional and financial issue,” said Carol DeGraw, United Way health manager of community impact. “It is important to know that you are not alone,” said DeGraw, who is also a caregiver.
The nationwide value of the service caregivers provide is $375 billion, or more than the entire annual budget for Medicaid, she said.
The are more than 50 million caregivers in the United States, she said. In New Jersey, an estimated 836,000 families members provide 891 million hours of care worth $7.9 billion.
Keynote speaker Charlie Wharton said she has been a caregiver all her life, beginning at age 5, when her mother began a slide into depression and mental illness.
Wharton said she was the second of six children. A brother was born with significant birth defects and in his short life of eight months, her mother seemed overwhelmed with the duties of caring for that child and her healthy children. Her mother’s condition was also affected by the of the placing of the family during World War II in one of the “concentration camps” the U.S. government established to hold the population of Americans of Japanese descent, Wharton said.
The result was a mother who did not venture outside the house, was awake at all hours of the day, and did not seek medical help.
“She was a good mother, but she was not always there,” Wharton said. “With depression, it rippled down and affected me and my siblings.”
After marriage, Wharton said, their son was born in 1981 with disabilities. “We were not going to quit,” she said softly as the emotion of the moment overtook her. “We have been blessed.”
At the same time, Wharton said, she was caring for her mother-in-law and her cousin, whom the family considered an aunt.
Today her son has been accepted into their church community, she said. Her message to the other caregivers in the room was simple: “Anything is possible.”
In one of the workshops, Christa Simon of the Mental Health Association of Morris County and Carmela Slivinski, executive director of DAWN Center for Independent Living in Denville, outlined how caregivers can become advocates for their family members. The route is often difficult and filled with unexplainable potholes, but the efforts can pay off, they said. Persistence is the key, they said.
Caregiving has measurable financial and health impacts. Among the effects, the United Way said, are:
— 75 percent of caregivers say the effort has had a significant impact on their health.
— 91 percent said their health declined as a result of the caregiving duties, including 60 percent who reported moderate or severe depression.
— 65 percent of caregivers are employed. American businesses lose between $11 billion and $29 billion annually because workers need to care for loved ones aged 50 or older.
— 84 percent of caregivers make adjustments in their work schedules; 33 percent reduce hours; 29 percent declined a promotion; and 16 percent left their jobs.