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Long goodbye of the elderly can create crises for family caregivers

By Abigail Trafford
Tuesday, April 6, 2010

"Oh Abigail, I'm dyin'." My stepmother, then in her late 80s, telephoning me on a Saturday morning, her Southern voice faint and desperate. I drop everything and fly from Washington to Boston. When I get to her apartment, she greets me -- all dressed up in a spring suit, scarf and jewelry -- and says: "Thank God you're here -- I have to go to the hairdresser!"

Before I can put words to thoughts -- Hey, wait a minute, you're supposed to be dying! I canceled my life, racked up a credit card bill -- she's out the door.

In retrospect, she was also right. At the time of that phone call, she was a healthy, vibrant woman, independent and self-contained, difficult and resourceful. She worked in her garden and took a trip to the Galapagos. She also knew that she was slipping in body and mind -- the gathering clouds of confusion and memory problems, weight loss, increasing frailty. The slow dying process had begun. She had no children; I would be the one to oversee her final trajectory, though I lived hundreds of miles away. Over the next decade, my stepmother moved to an assistant living facility; then she became too weak to go downstairs for dinner; finally, she needed extra nursing care. It was a long goodbye. She died last year at age 97.

The long goodbye is a predictable chapter in our lives. Giving care -- and receiving care -- is what to expect when you're expecting to live a long life. Longevity has brought new opportunities to men and women as they get older. It has also created the national caregiver crisis.

"We hear a lot today about the joys of our longevity revolution. And we all look forward to the bonus years," said author and social chronicler Gail Sheehy, 72, at the joint annual conference of the National Council on Aging and the American Society on Aging in Chicago last month. "But there is another side to the longevity revolution. It affects just about everyone -- but it's not the subject of public conversation. Family caregiving has become a predictable crisis for Americans in midlife and later life."

It's time to rev up the public conversation about long-term care and the role of those who provide care for an increasingly older population. An estimated 43.5 million Americans are family caregivers for people over 50, according to a 2009 survey by the National Alliance for Caregiving. The average age of care-receivers is 77; caregivers, 50. The recipient may be a spouse, parent, adult child, other relative or friend. The illness may end in death, recovery or partial recovery. It is not a step-by-step process, but more a labyrinth of circular routes until the caregiver reaches the center of acceptance and gains a deeper understanding of life, explains Sheehy in a forthcoming book: "Passages in Caregiving: Turning Chaos into Confidence."

Denial keeps us unprepared. Initiation into the caregiver club usually comes with The Call: Mom fell, Dad's in the E.R. Or a diagnosis: cancer . . . Parkinson's disease . . . now what? The challenges -- physical, emotional, financial and logistical -- are overwhelming. And you have to act fast.

Sheehy and others offer some guidelines to those who become a designated caregiver.

Think of yourself as a professional. Gather expertise and learn the lingo. That way you can deal more effectively with doctors and other health-care workers. "They'll respect you," Sheehy said at a "boomer business summit" on caregiving in Chicago. (I was a moderator of the panel.)

Create a circle of care. You can't do this alone. The circle may involve siblings and other family members, friends and colleagues. It often depends on professional help from home health agencies and hospice.

Take care of yourself and your life. "A burned-out caregiver is a danger to society, to self, to family," Sheehy said.

My stepmother's call that Saturday was premature and infuriating. But it helped to break down my denial about death. By the time a cascade of real crises occurred, I knew her health team; I was close to her support team, which included her longtime assistant. My stepmother and I got to know each other -- and care for each other -- in a new and deeper way. All the visits and phone calls, sharing secrets and gossip over breakfast, watching "Out of Africa" together at the assisted living facility, bearing witness to her path in the labyrinth of dying -- we had time to forge a closeness as we bade farewell.

For most of us, the long goodbye is an intense, intimate experience. As Sheehy said: "There is an honor to it. There is a gift to it."

© 2010 The Washington Post Company



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