Nearly four years after her longtime partner’s death, Michelle Murphy still wakes in a panic, imagining that she forgot to help him breathe.
At 61, Jeffrey Senne was diagnosed with amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease. Murphy had become his main financial support and caregiver in their woodsy Northern California home. She ended up devoting 11 years to looking after him. As the disease progressed, Senne, who Murphy says once looked like Harrison Ford, grew bald and frail, lost control of his bowels and could no longer speak or swallow. To prevent him from suffocating, she would have to wake up at least every two hours to suction the saliva pooling in his mouth.
“I was terrified that he’d die on my watch,” she says.
Hypervigilance often comes with the job for the more than 17.7 million Americans who care for older and disabled family members. So does stress, anxiety and long-term harm to the caregivers’ physical and financial health. In recent years, the work of caregiving has been lasting longer and becoming more complicated — and as America’s population ages and becomes more disabled, many more of us will be taking it on. Although state and local governments have begun to try to lighten the burden, they could and should be doing much more, experts say.
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“Many people know there’s a reasonably high possibility they’ll occupy this job at some point, but they have no idea how profoundly it will affect their lives,” says Richard Schulz, a psychiatrist at the University of Pittsburgh and a national expert on family caregiving. In a recent article in the Annual Review of Psychology, Schulz and four colleagues reviewed the research on family caregiving for the disabled and ill elderly, outlining the enormous toll on caregivers and potential ways to help them.
So many tasks
Caregivers like Murphy take on many tasks: shopping and housework; helping with bathing, dressing and monitoring medicines; managing outside care; making financial decisions; and navigating the fragmented health-care system to find quality, affordable extra care. Increasingly, they’re also providing the kinds of medical support once delivered mainly by trained and licensed professionals, such as cleaning wounds and dealing with feeding and drainage tubes and catheters, because many insurance plans do not cover such care.
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As time goes by and the care recipient’s health deteriorates, the work becomes harder and drearier. And the more that caregivers feel the role is involuntary, the more vulnerable they are to depression.
A review of 151 studies of caregivers’ health found changes in biological markers of stress, including higher levels of the stress hormone cortisol and C-reactive protein, a marker of harmful chronic inflammation. Caregivers also showed impaired immune function and worsened cognitive performance, and spouses caring for partners with dementia showed heightened risk of heart disease. Caregiving can shorten life spans: In a group of 392 men and women ages 66 to 96 who were caring for their elderly spouses, carers were 63 percent more likely to die over the next four years than a similar group not providing such care.
Money worries often add to the burden, especially for women, who make up 60 percent of family caregivers, usually during the peak of their earning power. Nearly half of caregivers who take time off work report reduced income due to fewer hours, missed promotions and sometimes loss of jobs. On average, a woman 50 or older who leaves the workforce to care for an aging parent will lose more than $324,000 in wages and retirement savings.
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Murphy, the founder of an executive coaching firm, is a dramatic example. She says she used up all her savings so she could cut back on hours, pay for some outside caregiving and set up what she called a “subacute hospital” in her home, with hospital bed, hydraulic lift to move her partner from bed to chair, nebulizer, suction pump, cough-assist machine and oxygen tanks. As of January this year, she says, she has been struggling to pay her rent and other basic living expenses.
“If this could happen to me, it could happen to anyone,” she says.
A feeling of neglect
Caregivers like Murphy often say they feel neglected by policymakers, unrecognized by health systems and underappreciated by society — and experts agree that’s often true. The AARP Public Policy Institute titled its 2012 report on the plight of family caregivers “Home Alone” (and its updated 2019 report “Home Alone Revisited”)
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Even trained professionals can find themselves unprepared. Harvard psychiatrist Arthur Kleinman spent a decade caring for his wife, Joan, after she was diagnosed with early onset Alzheimer’s disease, but was frustrated by how little support the couple received from doctors or the health-care system.
“None of them knew how to talk to me about what I could expect as time went on,” he says. “They simply weren’t trained for any of that.”
Kleinman, Schulz and other caregiving experts say that other developed nations, including Germany, Japan and the Scandinavian countries, do a significantly better job than the United States in supporting family caregivers. A 2007 study by the AARP Public Policy Institute found that Germany’s universal health benefits protect families from out-of-pocket expenses that can be catastrophic for Americans. Germany’s family caregivers can count on a lot more direct support, including up to four weeks of respite per year and social security credits that protect future pensions.
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Germany, Norway, Sweden and several other industrialized countries even pay family members to be caregivers, which the United States will do only once the family is sufficiently impoverished to qualify for Medicaid.
The long-predicted “silver tsunami” now gathering force makes it all the more urgent to ramp up meaningful support for family caregivers.
Rapidly aging population
By 2030, 72.8 million U.S. residents — more than 1 in 5 — will be 65 or older, with rapid growth in the number of the “oldest old”: those over 80. Meanwhile, the number of potential caregivers is declining as fewer people have children, more couples divorce and more women join the workforce.
To cope with this oncoming crisis, Schulz says that health care and social service providers must begin by identifying and vetting family caregivers: listing them in patients’ electronic records, assessing their abilities and making sure they understand the tasks they’re taking on. Only then can the health system start to take meaningful steps to help them.
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Fortunately, many states have been moving forward on this front. In recent years, 40 have passed the CARE Act (for “Caregiver Advise, Record, Enable”), requiring hospitals to identify and register a caregiver every time an older person is discharged, and to provide instruction to that caregiver about the medical tasks he or she will need to handle at home. The law marks a significant shift from the previous, often erroneous assumption that elderly patients were in charge of their own care.
The next step for many family caregivers is to find local support programs and financial aid, in what Schulz calls “a completely disorganized system, where you’ll find different levels of support wherever you look.”
Some states provide payments to caregivers through Medicaid; others don’t. And among the ones that do, some won’t cover spouses or legal guardians in that role. If caregivers are fortunate, the care recipient will have a long-term insurance policy that pays them for their time (not all do). Under some conditions, Veterans Affairs also will train and pay family members who are living with and caring for elderly veterans.
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Throughout the country, more than 600 Area Agencies on Aging — state-designated and government-funded public and private nonprofit organizations — assist older people who wish to remain at home. These agencies typically offer services including adult day care, subsidized meals and transportation. They also support caregivers with stress-relief programs including physical activity, cognitive behavioral therapy and meditation, as well as backup care so that caregivers can take breaks.
Schulz says that the most effective approach is to provide a comprehensive program offering caregivers skill-building workshops, stress-relief options and regular communication with health experts.
A leading example is a program called REACH (Resources for Enhancing Alzheimer’s Caregiver Health), which began in 1995 in six cities as a research effort. Studies show that its broad approach, later modified to become REACH II, improves the emotional and physical well-being of people who care for loved ones with dementia. It also improves their skill at managing loved ones’ stressful behaviors.
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REACH II has been adopted by several states, as well as the VA and the Indian Health Service. While that signifies some progress, Schulz points out that no comprehensive program for caregivers has been formally integrated into the health system on a national level.
Any future support for caregivers won’t be enough to help Michelle Murphy, however. Last December, she was diagnosed with Stage 3 leukemia. At 68, with no children and no immediate family able to help her, she says she wonders who, if anyone, will step up to care for her when she needs it.
Katherine Ellison recently spent five years caring for her aging parents. This article appeared first in longer form in Knowable Magazine.
Where to find help
Caring for an elderly relative or friend can be hard, stressful work. Here are just a few of the hundreds of organizations dedicated to lightening the load.
More than 600 local Area Agencies on Aging provide free or low-cost basic services, including nutrition counseling, home-delivered meals, caregiver training, insurance counseling, transportation and day care. Some AAAs also help direct families to financial support, including completing applications for Medicaid and veterans’ programs.
AARP is a 38 million-strong membership organization that lobbies on behalf of people 50 and older, and it offers a wide range of benefits, including discounts on car rentals and health and life insurance. Its website provides extensive information for family caregivers and a toll-free number for referrals for support.
The Family Caregiver Alliance provides services including legal and financial consultation, care-planning, education and referrals to other appropriate support groups. Its Family Care Navigator page is an especially useful tool to help caregivers find their way through the maze of state and local programs offering services, advice and financial aid.
— Katherine Ellison
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