couple in the park - woman sitting on a wheelchair and man standing behind

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. “Our health system has always been narrowly focused on the care recipient,” Schulz says. “We have to expand that to include the caregiver, who needs and deserves a lot more support.”

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 sophisticated 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.

At the start, many caregivers enjoy an emotional boost as they help improve someone’s life. But as time goes by and the care recipient’s health deteriorates, the work becomes harder and drearier. And the more that the caregiver feels the role is involuntary, the more vulnerable he or she is to depression.

Murphy, the founder of an executive coaching firm, is a dramatic example of the risk. While caring for her partner, she says, she used up all her savings so she could cut back on hours, pay for some outside caregiving and to set up what she called a “sub-acute hospital” in her home, complete with hospital bed, hydraulic lift to move her partner from bed to chair, nebulizer, suction pump, cough-assist machine and oxygen tanks. The financial toll has been so immense, Murphy says, that as of January this year she has been struggling to pay her rent and other basic living expenses.

Even trained professionals can find themselves unprepared when they’re plunged into the caregiving role.

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 the kinds of out-of-pocket expenses that can be catastrophic for Americans. Germany’s family caregivers can also count on a lot more direct support than those in the United States, including up to four weeks of respite per year and social security credits that protect future pensions.

Germany, Norway, Sweden and several other industrialized countries even pay family members to be caregivers, which the US will do only once the family is sufficiently impoverished to qualify for Medicaid.

Read more in Knowable Magazine.

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