Managing Care from Miles Away (via the Altarum Institute)September, 2013
My 83-year-old mother recently fell and broke her pelvis. She lives on the Big Island of Hawaii, which is about an hour’s flight from Honolulu and very rural. You can buy a postcard there that is all black with a legend that says, “The Big Island at night.” I knew of Mom’s fall by a call from the ambulance company, part of an automatic alert service purchased for my mother, whose children all live an ocean away. She was whisked to the hospital, where it was discovered that her fracture was “nondisplaced,” and that was the beginning of the frustrating, illogical, lunatic odyssey that is all too typical of how we care for the elderly in the United States.
A broken pelvis, even when the bones are not displaced, is extremely painful and incapacitating. Many people can’t walk for several weeks, and my mother was going to need round-the-clock care and considerable rehabilitation. Pelvic fractures are also quite common among older people, yet it seemed as if Medicare had not considered the possibility that an elderly woman who could not walk and was in considerable pain from a broken bone might need some help even after discharge from the hospital.
In fact, she was caught in a weird catch-22 that is, in many ways, emblematic of the patchwork so-called “system” that we have for caring for an aging, increasingly frail population. Because her fracture was not displaced, the hospital would not be reimbursed for my mother’s admission. But unless she was admitted, she could not go to a skilled nursing facility or other center for immediate rehabilitation. She certainly could not go home alone, because she could not perform the simplest tasks, including getting herself safely to the bathroom.
After keeping her for 3 days under “observation” (but not admitted), the hospital felt compelled to discharge my mother into . . . whoever happened to be there to catch her. As it happened, a friend stepped in and kindly took my mother home, along with her pain medication, bedside commode, and walker on loan from the hospital, and cared for her for three days until one of my brothers could make arrangements to fly to Hawaii from Oregon.
Some readers may be thinking to themselves that my family was in a quandary of our own making. Who leaves an 83-year-old to live by herself 2,500 miles away from the nearest family? They don’t know my mother. She is stubbornly independent and deeply attached to the community and the islands where she has lived for more than 60 years. Until her fall, she was walking a mile a day, doing yoga, and volunteering at the hospital’s birthing center once a week. At what point were her children supposed to tell her she had to come live with one of us?
Yet a fall or some sort of similar calamity is nearly inevitable for those of us lucky enough to reach old age, and we need a support system in place that can enable the elderly to get back on their feet if possible and to care for them if they can’t. Instead, what we found was a safety net riddled with holes. My mother received excellent and expensive hospital care, but there was nothing in place to bridge the gap between hospital and even partial recovery of function. And while a parade of kind, competent caregivers appeared nearly daily once my brother got her home to her apartment, not one of them knew her medical history. Neither the home health aide nor the physical therapist nor the occupational therapist nor the registered nurse knew which drugs she was taking. Nobody knew that one of her prescriptions, for a benzodiazepine (a drug related to Valium) to help her sleep, was the likely culprit in her fall. Until I requested it, nobody thought to administer a test for mental status, which revealed significant memory deficits, likely due to the trauma of her fall (and yet another reason for her not to continue taking a benzodiazepine).
Most worrisomely of all, once the stream of caregivers came to an end, she was still unable to get around well enough to cook for herself, get to the grocery store, or perform the tasks of daily living. And just try finding a home health aide on the island of Hawaii on short notice who will do a few simple chores for less than $100 a day—a significant financial burden for most families.
In the end, we bought first-class plane tickets for a brother and my mother so she could fly home with him to the West Coast in a seat that would not cause excruciating pain. Now, at 8 weeks out from her fall, she is able to walk around with a cane, and my brothers and I feel that we got off easy . . . this time. Obviously, we need a plan in place for the next calamity.
Our little tale is just that, a small story retold every day in communities across the nation. For many older people with fewer financial resources or worse relationships, the outcomes are far, far worse. As the Baby Boomers age, how many elderly people will fall not just through the safety net but down into a crevasse of suffering and neglect, because we have not put into place a system for caring for elderly people who aren’t sick enough to be in the hospital but are too incapacitated by injury, dementia, or frailty to care for themselves at home? And even among those who live with family members, how many will find themselves cycling in and out of the hospital for the inevitable calamities of aging, such as the falls, the upper respiratory illnesses, and the bouts of incontinence, that can be treated far more comfortably—not to mention cheaply—at home if only there were a system in place for providing needed care in the right setting?
I don’t mind buying plane tickets to care for my mother or paying for a caregiver, if only we could have found one on short notice! But I do mind paying for an expensive, wasteful health care delivery system that, despite its high cost, fails to deliver the kind of simple, home-based care that could have helped us get my mother back on her feet and back to walking, volunteering, and yoga.
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