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Living on the edge: Baby boomers faced with caregiving dilemma

By Karen Orloff Kaplan and Ira Byock

Beth Liebich can't pinpoint the day she officially became a caregiver.

Maybe it began in 1995 with her mother's intestinal inflammation. There were the twice-monthly doctor visits and extra trips to the pharmacy and the nearly hour commute across town - from her home in Clifton Park, N.Y., to Saratoga Springs and back - to check on Mom during the week. Things heated up when her father and father-in-law each had cardiac valve replacement surgery in Boston within two weeks of one another.

By 1998 she thought nothing of dropping off her mother at the cardiologist's office, then swinging by to pick up her father-in-law for his ophthalmology or cardiology appointment, making it back in time to hear what Mom's heart doctor had to say.

In 2000, both her mother and father died. So did her husband's father.

Now her mother-in-law is in the late stages of Alzheimer's and Parkinson's disease.

There is no job description for caregivers, but the 25 million Americans who provide care for elderly or critically ill family members do anything from shopping for groceries and medicines to bathing, dressing, feeding, cleaning house, and taking care of the family finances. Often they do it all.

As the population of older citizens grows dramatically - by the year 2030 there will be 5.3 million aging baby boomers who need long-term care - many caregivers put their own lives on hold to meet the needs of ill loved ones.

Like Liebich, three-quarters of family caregivers are women. According to the National Alliance of Caregivers and AARP, the average caregiver is a married woman in her mid-40s, a high school graduate who works full time and earns about $35,000 a year. But caregivers can be young, old, male, female, employed or out of work, members of large families and small, of every race, faith and denomination. They're caring for ailing parents, husbands or wives, and even children.

And, according to Carol Levine, an advocate for family caregivers, most "go it alone." Nearly 83 percent have no paid professional help, such as nurses, physical therapists or social workers, and nearly 85 percent have no other paid assistance, such as home health aides.

Shirley Loflin, 66, knows what it means to go it alone. When her 83-year-old mother died in 1993 after a long illness, Loflin was left to care for both her ailing father and her husband, Geddie, who suffered a debilitating stroke.

"Geddie was close to retirement." Loflin said. "We were within touching distance from our dreams of traveling, playing with grandchildren, and finally having time just for one another. Life was full and beautiful until the week before Christmas, when it literally exploded.

"First, Mother died, leaving Daddy alone and bewildered. He couldn't stay by himself, so of course we brought him to live with us. We'd barely settled down to the routine of life together when Geddie, my sweet husband, had a massive stroke, which left him speechless and totally paralyzed on the right side. Within minutes he was reduced to a complete invalid and all our lives changed forever."

Aside from her frantic care-giving duties, Loflin had to deal with daily life and natural disasters in her home in Americus, Ga.

"One week, our old furnace died, the plumbing backed up, the city was in the midst of a huge flood, a small tornado whirled through our neighborhood and ripped off shingles and tree limbs. Debris was everywhere. Geddie had his first seizure and, on top of it all, Daddy was upset because Geddie needed so much of my time."

She got through it all, including the death of her father last October, but the experience shook her. "What scares me most is that you never know what will happen next. Life is from minute to minute. It's living on the edge."

Loflin and Liebich are among the 25 percent of caregivers in the United States who tend to more than one relative at a time. Even more common is the "sandwich generation," the baby boomers who are tending to their parents while still raising their children.

Liebich, 46, falls into that category, too. A one-time manager at a major national insurance company, she embraced the role of full-time wife and mother in 1993. She always assumed that when her son left for college, she would re-enter the work force. The day her mother and father-in-law both ended up in different emergency departments, she realized her career would stay on the shelf a bit longer.

But her management skills were put to good use in her new role. In the car between stops she'd call the pharmacy to check on the latest prescription and check in with her son as he returned home from high school. She started carrying a Palm Pilot to organize her parents' appointments and medications.

"It was a lifesaver," she said. "I have a bad back and I had literally been carrying around many pounds of records." It also was necessary, she adds, because "otherwise the doctors have no idea what each is prescribing."

Despite her savvy, Liebich's family got caught in a bewildering health-care maze, discovering that insurance or Medicare regulations frequently seemed to be at cross-purposes with quality of care.

One day, while her father was being cared for at home, a private aide took her father to the mall so he could go for a "walk" - he could only shuffle a few feet without stopping to catch his breath. A nurse happened by the house while they were gone. The brief walk meant he was not strictly homebound and now ineligible for Medicare home health aides. The twice-weekly, half-hour home visits by the nurse became twice-weekly, two-hour trips to the doctor for Beth and her father.

Caregiving at this level can take a physical toll. While hurrying to get her father situated in his new assisted-living apartment, Liebich broke her back carrying a heavy carton. After a week in bed, she underwent six months of physical therapy and still maintains a stringent strength-training program. Another time, Liebich had an attack of chest pains and it took a night in the hospital and several tests to assure everyone that it was strained muscles and frayed nerves.

The cost to the health-care system of illness and injury among caregivers is significant. A 1997 study by the National Alliance for Caregiving and the AARP found that 15 percent of all caregivers and 31 percent of those providing the highest levels of care experienced significant physical and emotional stress. In another study, over a four-year period, caregivers who reported the highest levels of stress had a 63 percent higher risk of dying than non-caregivers.

The financial picture isn't any brighter. Many Americans simply die poor, with the health care system having absorbed all the money they and their families have.

According to public opinion researchers Lake Snell Perry, caring for an elderly relative ranks as one of the top financial worries for the 21st century, and with good reason. With nursing homes costing more than $3,000 per month, it doesn't take long for most Americans to "spend down" to meet Medicaid criteria for being officially indigent. In a 1999 study funded by the Robert Wood Johnson Foundation of patients with advanced, incurable chronic illness, 29 percent of families reported losing most - or all - of their livelihood. Thirty-one percent lost most or all of the family's life savings. Social Security and pension benefits overall, and out-of-pocket expenses for the care of a single ill relative averaged more than $19,000.

Asked to estimate the amount she and her husband spent in caring for their four parents over the past four years, Liebich quickly ran through the list: There were non-prescription medications, wound dressings and Attends (adult diapers), special food, occasional "Medi-van" transportation to or from the hospital, minor renovations to make the homes safe - handrails in the cellar and halls, elevated toilets, commodes, blood pressure cuffs, and, toward the end, nursing aides from the private duty service. Liebich estimated the total to be in the range of $75,000 to $100,000, maybe more. "Thank God, we had the means to do it," she said. "I don't know what other people do."

After her parents died, Liebich faced sorting through their estate - "the caregiver usually gets that chore, too" - but barely had time to face her grief.

"The time to grieve was virtually instantaneous," she said. "When your mother dies on Saturday, your father-in-law on the very next Monday and your father 2 1/2 months later, your day-to-day workload gets cut by three-quarters, but the grief is always with you."

Proximity had made Liebich the obvious choice to be primary caregiver for their father and mother. But her family pulled together and, she says, in many ways she and her siblings have grown closer during this time, a situation that's not always the case.

It was probably inevitable that Liebich would become an activist for the plight of caregivers. Although she is still caring for her mother-in-law, Liebich has begun writing and speaking out on the issue, intent on educating policy makers, including legislators and the private foundations that fund innovative health and social projects.

Despite the huge stress, many take on caregiving voluntarily and speak easily about its rewards. They talk about the blessings of giving or the growing self-confidence that comes with mastering one difficult task after another. Still others feel the peace of mind that comes from meeting the needs of someone they love. And some learn more than they thought possible.

"Care-giving has taught me many lessons," said Shirley Loflin, "among them, that it is more blessed to give than receive."

Describing the "emotional vocabulary" of caregivers, clinical psychologist and family therapist Barry J. Jacobs said, "They revel in the chance to make a crucial difference in others' lives. Some see it as a means to give back to loved ones who have cared for them so well in the past. Others, taking a more explicitly spiritual view, feel privileged to be the instruments of God's love in conveying comfort and hope. The sense of gratitude these caregivers feel appears to make them more resilient in the face of the long years of demanding work.

How caregivers respond to their challenges depends on how well they care for themselves. Shirley describes it this way: "Yes, I have a mountain of care-giving responsibilities, but my well-being is also important. I began giving myself a little priority."

Caregivers are finding more help out there to do just that, ranging from tips to deal with overwhelming amounts of paperwork to respite care that provides them with "time off," to an array of Web sites containing strategies for coping.

Most important to Loflin is the support provided by people just like her.

“I craved having someone who ‘had been there,’ had experienced what I was going through,” said Loflin. “In the quiet hours of the night, in moments I can catch when my men are asleep or occupied, I’m on the Internet exchanging e-mails with hundreds of other caregivers. We provide huge amounts of support for one another, practical ideas about how to do hard jobs, humor and kindness. These exchanges nourish me and let me nourish others.”

Copyright © 2005 National Hospice and Palliative Care Organization
All rights reserved. Reprinted with permission.

Reviewed by athealth on February 1, 2014