LOS ANGELES--Wilbur Williams remembers when he finally asked for help.
After his wife of over 50 years suffered a massive stroke in 2009, right after New Year’s, Williams visited her daily for nine months at a nursing home.
When she was eventually released into his care, the feelings of stress and overwork quickly overwhelmed Williams, a retired Los Angeles teacher and administrator used to juggling complex initiatives. He hired part-time help, but he still had trouble coping.
Caregiver Stress—“All. The. Time.”
“I could have had five people around and it wouldn’t have relieved the stress,” said Williams, 79, adding, “I’m busy all the time. All. The. Time.”
Exasperated, Williams enrolled in an eight-week course targeting caregiver stress. There, he began to repair the fragmented pieces of his life. He learned to ask for help and delegate some of his caregiving responsibilities. He finally took time for himself, including regular exercise. Perhaps most important, he met others who shared the same plight, so that he no longer felt so alone.
In Intensive Care
Unlike caregivers of the past, families today can find themselves taking on the role of medical professionals. They coordinate care among an older loved one’s team of physicians--sometimes 10 or more doctors. Often they do it alone, without help from the medical community or social service organizations.
Only about three in 10 care recipients had visits by a health care professional of any type, according to AARP’s 2012 report, “Home Alone: Family Caregivers Providing Complex Chronic Care”
Not only will children toilet a parent, but they will perform the more difficult tasks of a traditional nurse, such as dressing wounds, providing pills and injecting drugs.
“Home Alone” says almost half of family caregivers perform some type of medical or nursing task, with three-fourths of them managing medications, such as complicated IVs.
“We see a population of mostly middle-aged family members taking care of a group of older relatives with many physical and cognitive problems, with very little help from health care and social service professionals,” summarizes the AARP report.
The report estimates that family caregivers provided about $450 billion in free care nationwide in 2009, an increase of $75 billion from two years before.
Yet hired caregivers often suffer low pay and challenging working conditions. There are now an estimated 4 million paid caregivers in the United States - 3.2 million through employers, another 800,000 independent and hired directly by families.
As of 2010, about half of hired caregivers worked part-time. Median income was just $17,000. Most did not have health insurance (including those working at nursing homes). Nearly half are so poor they are eligible for state and federal public assistance programs.
“No one wants to work in long-term care for a long time, especially if you’re a nurse, because the work is really hard,” said one Stanford University expert.
One thing from the course that really stuck with him was a video re-enactment of a family funeral. The video didn’t show the death of the patient needing care. Instead, it was the caregiver.
“If you’re doing it alone, you’ll probably die before the person you’re caring for dies,” said Mary Brintnall-Peterson, a national caregiving expert.
Williams is a classic example for a growing national crisis: the American family caregiver.
A rapidly aging population is on a collision course with dwindling family savings and startling rates of chronic disease and dementia. Once close-knit families are now spread across the country, as many older adults demand to stay in their homes as long as possible. Meanwhile, government programs to assist caregivers are being slashed instead of expanded.
In other words, a perfect storm.
42 million Americans
In 2009, more than 42 million Americans provided family care to an older adult with at least one physical or mental limitation, according to the report "Home Alone: Family Caregivers Providing Complex Chronic Care," authored by experts from AARP’s Public Policy Institute and other leading organizations in aging.
With more than 8,000 Americans turning 65 every day and chronic disease gobbling up nearly one-third of the American healthcare dollar, the need for caregivers – both family and hired – is staggering.
In one shocking estimate, the Harry and Jeanette Weinberg Foundation reported that by 2020, the United States will need more caregivers than either teachers or law enforcement professionals. Most caregiving – over 80% — comes from family and friends. Yet the role is almost never easy.
For many family members, the crushing weights of responsibility and isolation are so overwhelming a kind of “caregiving paralysis” sets in.
“A lot of times they‘ve been so isolated, they don’t know what to do when they get a break,” said Michelle Nevins, executive director of the Del Oro Caregiver Resource Center, which serves 13 counties in Northern California.
A recent Washington state report estimated the rate of “severe depression” among caregivers was 50 percent. Other common ailments include heart disease, diabetes, hypertension--even dental decay, which can lead to malnutrition or signal underlying heart disease, for those who stop taking care of themselves.
In turn, the responses to stress become extreme. Caregivers often won’t ask for help until they are so overwhelmed they finally snap, threatening to place their loved one in a long-term care facility, or in some cases abandoning them.
“If they are completely overwhelmed, they’ll just take them to the hospital and say ‘I can’t do this anymore,’” stated Nevins.
The Sandwich Generation
At the heart of this challenging dynamic is the Sandwich Generation – adults caring for both aging parents and their own children.
In the San Francisco Bay Area, Maureen Torres (not her real name) is married and has a 14 year-old son. When her father was diagnosed with dementia, not only was she faced with the challenge of caring for a man she hadn’t shared a home with since she was two – so was her family.
“A lot of arguing,” is how Torres described life at home.
Most of the family bickering is over time, money and fatigue.
“My husband’s not getting as much attention as he’d like,” Torres observed. Adding to the stress level was a family cat. “It was a relief when the cat decided to exit,” she joked.
“Whenever my Dad’s sick it throws a whole wrench into the system,” sighed Torres.
Members of the Sandwich Generation also look fearfully at their own aging process, worried they will one day wind up a burden and helpless. Families in the most challenging circumstances are those caring for more than one older adult, often with dementia: say, a wife caring for her husband, her own mother and her spouse’s mother.
For most families, the crisis is not only heart-wrenchingly emotional, but fiscally draining.
When Luther Findlay testified before a joint meeting of California legislators last year, it illuminated this complex mix of emotions and money.
For years, Findlay fulfilled the wish of his wife and became her primary caregiver as she was dying of cancer. Eventually, Findlay succumbed to severe depression and sacrificed both his business and his sanity.
At the same time, to the State of California, Findlay became a fiscal liability. He admitted to state legislators at a joint hearing of Assembly committees on Aging and Long-Term Care and on Human Services that he voluntarily became impoverished so that he could quality for Medi-Cal – California’s Medicaid program – and state services to help the indigent.
“What a nightmare,” he told the committee. “It was like going through a jungle.”
State Programs Critically Stressed
Ironically, just moments before Findlay’s testimony, others had testified that state services for older adults – such as In-Home Supportive Services and adult day health care program — were being critically stressed.
For many older adults and their families this conundrum exists: They aren’t poor enough to qualify for state-subsidized nursing homes, but aren’t wealthy enough to afford private nursing homes, with their average monthly price tag of $6,800.
To help with this problem, in 2000 the federal government created the National Family Caregiver Support Program (modeled in part after a similar California project). The U.S. Administration on Aging funds to state agencies, which pass the program’s funds on to city or county area agencies on aging. However, the program was never funded enough to provide much more than referrals to local agencies--such as those funded by the state.
In California, Nevins, of the Del Oro Caregiver Resource Center, said her caregiving organization lost 72 percent of its budget in 2009-2010, and staff members serving caregivers dwindled from 12 to just four.
Organizations that help caregivers have a variety of ways to assist them. They can provide emergency respite care, such as a home care aide who gives the caregiver a break. They often recommend mental health counseling for stress and depression. Getting the older adult out of the house – if possible – to a community center or adult day program is another option.
Sometimes caregivers want one thing more than anything else: someone just to talk to about their woes.
The Missing Link
“From our perspective, the missing link in all of those programs is they don’t specifically address the needs of the family caregiver,” said Carol Levine, director of the Families and Health Care Project for the United Hospital Fund.
Whether a hired professional or unpaid family member, the challenge of American caregiving is acute.
“People don’t really understand until you’re going through it,” said Williams.
This article is adapted from a story Matt Perry wrote as part of the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.
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