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A Mother's Day tribute to family caregivers who care for aging parents

Sixteen years ago, Carolyn Johnson gave up her job and her home to take care of her mother Florence. At 81, the frailties of Florence’s age are compounded by Multiple Sclerosis. She can’t bathe or clothe herself and needs someone with her all the time. "They [doctors] wanted to put her in a nursing home initially, but I resisted that. And the trade-off has been, she's lived [a lot] longer," Carolyn shared as she combed her mother’s hair. Many Americans agree with Carolyn’s decision. Today, one in four US households must find care for an elderly relative, and the majority of them are choosing to take care of their relative at home. ---Thalia Assuras, CBS News

Mom and me.
Mom and me.Irvin Phillips Jr/Baltimore SUN

That was me back in 2000. I was my mother's caregiver for 18 years until she passed away at the age of 83, two years after that article appeared. As a family caregiver, I was blessed to be in a special league with many other dedicated daughters and sons, daughters-in-law and sons-in-law who were also taking care of their mothers. All of us made personal, financial and professional sacrifices to care for our aging or disabled parents. Although it wasn't always easy, knowing that we were giving unselfishly of ourselves to help our parents in their time of need made it all worth it. For my generation, taking care of our parents was expected of us, and still promises a special reward.

Without a doubt, family caregivers are the linchpin that holds America's long term care system together. Without them, the whole system would collapse (and everybody knows that). It's family caregivers who bear the bulk of the responsibility of caring for this nation's aging and disabled population. Currently, there are an estimated 66 million family caregivers in the United States (see statistical breakdown).

Traditionally, federal and state governments have counted on the willingness of families to care for their own. The economic value of the unpaid assistance that family caregivers provide to aging and disabled relatives is estimated at 450 billion a year. That's money the government has yet to pay out to family caregivers for the vital work they do.

Many family caregivers perform personal, intimate activities like bathing or dressing. Other common tasks include paying bills and managing finances; scheduling and accompanying a loved one to doctor appointments; managing multiple medications; operating medical equipment; and performing wound care. Family caregivers also coordinate care and help their loved ones navigate health care services and community supports that might be available. ---Lynn Friss Feinberg, AARP blogger

Selfless is a word that describes family caregivers. They are often on-call 24 hours a day responding to someone else's care needs. Family Caregivers may forfeit days off, report for duty even when they're sick and pass up holidays because the needs of their loved one comes first. In the beginning, you don't always realize the extent of the demands caregiving places on you but you learn, and most important, you adjust. You have to in order to survive; or risk caregiver burnout. If you are a family caregiver know the signs of caregiver burnout.

As all-consuming as it is, becoming someone's caregiver is truly an act of love.

You have many reasons for providing home care. The most frequent reason is love for your friend or family member and a desire to provide care in familiar surroundings. It could be that home care is your only option, because outside care, even if it’s available, is often too expensive. You might also be motivated by a sense of obligation, or concern that no one else can provide the same quality care. ---James R. Sherman, Creative Caregiving

Family caregivers have not always had the recognition and support that they have now. It took family caregivers and their advocates joining forces to lobby Congress to pass legislation supporting family caregivers. A momentum shift occurred in 2000 when Congress amended the Older Americans Act to create the National Family Caregiver Support Program (NFCSP). This groundbreaking program not only legitimized the importance of family caregivers but also entitled them to basic services, not the least of which is respite care to enable them to take a break from caregiving. For the first time in a long time, family caregivers could see light at the end of a long, lonely tunnel.

But that was 14 years ago. The torch has been passed to a new generation of family caregivers. Elected officials and public policymakers will need constant reminders of why it's important to fully support family caregivers as Congress considers new programs and funding levels. Administrations come and go but the role of the family caregiver remains just as indispensable today as it has always been. Providing care to aging and disabled loved ones who can't care for themselves is a noble calling. If you know of a family member, friend, neighbor or co-worker who's a family caregiver, why not give'em a hug or bake a casserole to let them know how much you appreciate them. It's a good word that will go a long way.

THERE ARE ONLY FOUR KINDS OF PEOPLE IN THE WORLD. THOSE WHO HAVE BEEN CAREGIVERS, THOSE WHO ARE CURRENTLY CAREGIVERS, THOSE WHO WILL BE CAREGIVERS, AND THOSE WHO WILL NEED CAREGIVERS ---Rosalynn Carter, founder, The Rosalynn Carter Institute for Caregiving