Carinne Luck was not looking forward to giving her father a pedicure. But when the day arrived, Luck chose to view it as a gift. Witnessing her father's physical degradation without denial, Luck felt a sweetness in that physical closeness. "Watching other families at the hospital care for their aging relatives, there were days when I felt like everything was so messed up. But within that experience, there was so much relationship and life," Luck says. "The process of dying is a process within living; it's not death. Just being open to seeing it that way gave me a lot more strength and resiliency."
Luck's father is 62, but after several surgeries that turned out to be unnecessary and left parts of him incapacitated, he was finally diagnosed a year ago with ALS, a degenerative disease of the nervous system. Luck, who lives in Brooklyn, is essentially his full-time case manager, liaising with nurses, doctors, wheelchair services, speech and language therapists, and neurologists. She's selling his house in England, managing his finances, and deciding which things from his life to keep, even though he doesn't need them, so he can balance a life worth living with all that's been lost.
Valuing Elder Caregivers
Unlike caring for our children or the temporarily infirm, who improve and flourish with our care, taking care of aging parents involves an often unpredictable situation that usually does not improve. This is something that Luck is keenly aware of through her work as a strategic consultant with Hand in Hand, a domestic employers network that was founded in 2010 when New York State became the first to adopt a domestic workers bill of rights (four states have followed suit). She's worked on the Fair Care Pledge Campaign in cooperation with the National Workers Alliance and Care.com, an online marketplace for care jobs, to encourage all employers of domestic workers to ensure fair pay, clear expectations, and paid time off. Domestic workers (full-time employees who work in the home of an unrelated person) were exempt from the National Labor Relations Act enacted by Congress in 1935, which encourages collective bargaining. Ilana Berger of Hand in Hand feels that including this workforce in standard labor practices will only lead to better care, which is important since, she notes, it's care that happens in the most intimate settings.
Luck knows the challenges of a system that doesn't value elder caregivers. When her father first began to need help, he'd already lost the ability to use one of his arms, so couldn't fill out necessary paperwork or attend meetings to apply for federal assistance. Concerned with worrying his daughter, he carved together a jumble of care through informal channels, and ended up with an aide who was neglectful and abusive, and ultimately was arrested. "My professional work informs my personal experience," Luck says, "and my personal life informs the challenges and potential of building quality care for seniors and everyone who needs it."
Although Luck's father is in a nursing home in England, her need to establish a clear narrative of her dad's needs by weaving together different agencies that don't always talk to each other mirrors the American system. It's actually more a collection of sectors (legal, financial, real estate, insurance, medical, social, mental, etc.) than a bridged system. "With all the information that a person can download from the Internet, what they generally end up with is a pile of names and 'eldercare speak' to work through," says Henry Alter, founder & CEO of the Orion Resource Group, a membership association of professionals in a broad range of elder care specialties. "It's challenging to piece together sensible solutions to the issues elders and families face. At the end of the day, we're all consumers who need to find somebody knowledgeable and caring to help navigate the eldercare matrix."
The lack of coherence in this setup is becoming more pressing. According to a 2013 report by the Centers for Disease Control, "Two factors—longer life spans and aging Baby Boomers—will combine to double the population of Americans aged 65 years or older during the next 25 years to about 72 million. By 2030, older adults will account for roughly 20 percent of the US population." Dr. Bruce Chernoff, the chair of Congress's Commission on Long-Term Care, has noted that 70 percent of older Americans will need some form of long-term services and support for, typically, three years. With nursing home costs averaging $81,000 annually, and in-home care averaging $21,000-22,000 annually, it's an inevitability that most families aren't prepared to handle. Usually a person has to spend down their savings and resources to qualify for Medicaid's coverage of long-term care costs. And economists worry that expecting Medicaid to assume all those costs is unsustainable. The Ettinger Law Firm in Rhinebeck (among other locations) helps people plan for disability first through the creation of a trust, which the firm recommends as the best tool for preparing for any unexpected life changes.