Wilbur Williams remembers when he finally asked for help.
After his wife of over 50 years suffered a massive stroke in 2009 right after the new year, 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.
“I could have had five people around and it wouldn’t have relieved the stress,” says Williams, 79…”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.
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,” says Mary Brintnall-Peterson, national caregiving expert.
Williams is a classic example for a growing national crisis: the American 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 expanding.
In other words, a perfect storm.
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 and the United Hospital Fund.
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 burdens so overwhelming a kind of “caregiving paralysis” sets in.
Many lose their identity, forget their hobbies, and sacrifice their lives.
“A lot of times they‘ve been so isolated, they don’t know what to do when they get a break,” says Michelle Nevins, executive director of the Del Oro Caregiver Resource Center, which serves 13 counties in Northern California.
Caregivers often disregard their own physical and mental health. A recent Washington state report estimated the rate of “severe depression” among caregivers was 50%. Other common ailments include heart disease, diabetes, hypertension, even dental decay 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 perhaps even abandon them.
“If they are completely overwhelmed, they’ll just take them to the hospital and say ‘I can’t do this anymore,’” says Nevins.
At the heart of this challenging dynamic is the “Sandwich Generation” – adults caring for both aging parents and their own children.
The Bay Area’s 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,” says Torres.
Adding to the stress level was a family cat – “It was a relief when the cat decided to exit,” she jokes – and the demands of her father’s health.
“Whenever my dad’s sick it throws a whole wrench into the system,” sighs Torres.
Employed adults must juggle work and family, often taking time off for three sets of medical appointments: theirs, their children, and their parents.
Members of this Sandwich Generation are also looking fearfully at their own aging process, fearing they will 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 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. Yet Findlay had to sacrifice everything to do it: both his business and his sanity. Overwhelmed with the enormity of caring for his sick wife, he succumbed to severe depression.
At the same time, to the state of California, Findlay became a fiscal liability. He admitted to the Assembly members – the joint hearing of Assembly committees on Aging and Long-Term Care and Human Services – that he voluntarily became impoverished so that he could quality for Medi-Cal – the state’s version of Medicaid – and state services to help the indigent.
“What a nightmare,” he told the committee members. “It was like going through a jungle.”
Ironically, just moments before Findlay’s testimony, others had testified that state services for older adults – such as In Home Supportive Services and the adult day healthcare 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 System (modeled in part after a similar California program) that provides funding to state agencies through the local Area Agency on Aging.
But Nevins says her caregiving organization lost 72% 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 an aide who comes to the house to give the caregiver a break. Mental health counseling for stress and depression are often recommended. 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.
Under the Affordable Care Act, American hospitals are now being forced to pay the cost for patients readmitted within 30 days, and are creating more programs for the transition from hospital-to-home.
“From our perspective, the missing link in all of those programs is they don’t specifically address the needs of the family caregiver,” says Carol Levine, director of the Families and Health Care Project for the United Hospital Fund and a co-author of the “Home Alone” report.
Family caregivers often take on the role of medical professionals.
They coordinate care among an older adult’s team of physicians, which can sometimes reach ten or more. And often they do it alone, without help from the medical community or social service organizations.
Only about three out of 10 care recipients had visits by a health care professional of any type, according to the “Home Alone” report.
Not only will children toilet a parent, but they will perform the more difficult tasks of a traditional nurse. They dress wounds, provide pills, and inject drugs.
The AARP report says that almost half of family caregivers perform some type of medical or nursing task, with three out of four managing medications – including IV’s.
“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.
And in many cases, they do it for free. The AARP 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 four million of these hired 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 themselves – and that includes 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,” says one Stanford University expert.
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,” says Williams.
Matt Perry wrote this series as part of the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.