Saturday, Oct. 29, 2011

Care for self with family

The true strength of the American family finds its roots in an unwavering commitment to care for one another.

- President Barack Obama

As if I need any more statistics to define me and my life, I've got to count myself among more than 65 million people in the United States - 29 percent of us - who provide care each year for a chronically ill, disabled or aged family member or friend.

The National Alliance for Caregiving details my identity as a family caregiver even more, reporting:

Six in 10 of us work.

We provide an average of at least 20 hours of care per week, with 13 percent providing 40 hours or more.

Sixty-six percent of us are women; 37 percent also are raising children under 18.

Our "free" services are worth an estimated $375 billion a year, more than Medicaid long-term spending.

And in North Carolina, I'm one of an estimated 1.3 million family caregivers, said Alicia Blater, a family caregiver support program consultant with the N.C. Division on Aging and Adult Services.

In honor of November's National Family Caregivers Month, the National Family Caregivers Association wants all of us to stand up and be counted, to self-identify to erase our invisibility, both to ourselves and in American health care.

Alzheimers North Carolina will help get us started Thursday. From 6:30 to 7:30 p.m., they'll hold the sixth annual Candlelight Reflections at the waterfall at the N.C. State Fairgrounds, also to honor National and North Carolina Alzheimer's Disease Awareness Month.

"Family care-giving has been happening for generations," said Blater, the family caregiver consultant with the Division on Aging. "We're starting to talk about it more, and we're starting to recognize it's OK to ask for help and that there are a lot of people who can be involved to provide support in that role.

"It's both extremely rewarding and very challenging at the same time," Blater said. "It's something that families for the most part want to do, but they also find that it very much changes their life."

Blater, whose agency oversees the state's federally funded National Family Caregiver Support Program, said it's important to teach caregivers about the support available and to educate people on the challenges of being a family caregiver.

My own family care-giving journey began just three years after I graduated from college, helping Daddy help Mama, who had a stroke in 1991 - at 51 - that left her slightly less mobile, but mentally intact. For two years, I drove home every weekend from South Carolina, where I was on my first job as a newspaper reporter, to relieve Daddy and give Mama some girl time.

To shorten a really long story, Daddy's health started to fail - making him a common caregiver statistic - and he needed help here. Permanently.

"Your life is about to change, Lori," he told me, peering from his critical care bed at Rex Hospital in January 2006. Sitting at the foot of the bed, I replied, with as much cheer and certainty as I could muster, "I know, but it's OK, Daddy. I'm good. We'll be fine. Focus on you."

"No, Lori," he said, calling more strength to his weakened voice. "Your. Life. Is. About. To. Change."

He was right-on - even more so because he died less than two years later.

It has required sacrifice and determination, strength and courage, introspection and faith - and a lot of energy that can be hard to come by for a middle-aged, working wife and mother. But I've got some undying support in my husband and daughter, as well as extended family and friends.

I'm also blessed with my parents' cache of great doctors: amazing general practitioners, cardiologists, a heart surgeon, a gynecological oncologist/surgeon, a chemotherapy doctor and several chemo nurses.

They've let me ask questions until I understood the answers and answered questions I didn't know to ask. They've let me vent and fuss and cry.

They've brought my parents and me - and the rest of our family - through a lot.

The words of one, Dr. Mark Yoffe, who helps oversee and follow my mom's ovarian cancer, now in remission, at the Cancer Centers of North Carolina, come back to me as often as my dad's. On a particularly stressful day, despite his good news for my mom, he ended our visit with a hug and whispered in my ear, "You're a wonderful person, Lori."

It is those words that make my statistics something to embrace, a reason to remind myself to do as the National Family Caregivers Alliance encourages in its Caring Every Day messages: to believe in ourselves, protect our health, reach out for help and speak out for our rights.

Joan Pellettier, director of the Triangle J Council of Governments Area Agency on Aging, gives it to us stronger.

"If family caregivers can't continue to do what they do, it's a detriment to society," she said. "It behooves families, as well as society, to be supportive of these family caregivers."