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Memoir highlights caregiver’s long-term health care challenges

By Jerry Harkavy

Decades after screen star Bette Davis famously declared that “growing old is not for sissies,” Estelle Gross expanded on the woes of the ailing aged with her lament that people live too long and die too slowly.

On the day after the Sept. 11, 2001 attacks, after helping cover that story for The New York Times, an exhausted Jane Gross was finally able to drop by the nursing home a few miles north of ground zero where her mother had just moved to what would be her final residence. In a furious maternal vent, she greeted her daughter by saying, “I wish those planes had hit this building.”

Gross was a feisty octogenarian with a grab bag of chronic conditions that for nearly three years forced her to rely on others to carry out the simplest of daily activities. On the other hand, her cognitive abilities remained sharp until the end, a contrast to many others in her nursing home who endured the ravages of Alzheimer’s disease and other types of dementia.

Gross’ ordeal, and that of her daughter as principal caregiver, is one that is becoming more widespread as baby boomers are compelled to reverse the roles of their childhood and take on the challenging task of becoming their parents’ parents.

In her book, A Bittersweet Season: Caring for Our Aging Parents — and Ourselves (Knopf), Gross, who went on to launch a blog called The New Old Age, recounts her own experiences in shepherding her mother through the intricacies and indignities of long-term care.

The narrative begins in 2000 with Estelle Gross’ move from Florida to New York, a “reverse migration” that is becoming more common for parents who need chronic care. It ends in 2003, when she died at 88 in a nursing home after a decline that left her paralyzed, incontinent, unable to speak and unable to eat on her own.

An incisive reporter with a fine eye for detail, Gross laces her account of her mother’s decline and its impact on her own life with suggestions and warnings for other caregivers who find themselves in similar situations: Avoid the chaos of hospital emergency rooms, assume that costs associated with long-term care are not reimbursable by Medicare, find a family doctor, internist or — best of all — a geriatrician to manage the inevitable cascade of medical problems.

Gross recounts a succession of middle-of-the-night phone calls, emergency summonses from the workplace, financial costs that swiftly escalate and the need to play social engineer to ensure that nursing home staff aren’t slacking off when the need arises to change diapers or prevent bed sores.

“Once a parent has passed 85, easy and affordable passings are few and far between. Believing you’re going to get one is magical thinking,” she wrote.

The book is written from the perspective of the caregiver — more often a daughter than a son — whose relationship with the parent can be fraught with decades of resentment and other family baggage. In the author’s case, however, the ordeal brought her closer to her mother.

The path isn’t smooth, but rather an all-consuming and emotional roller coaster ride that Gross describes as “living in a soup of fear, guilt, heartbreak, resentment, loneliness and exhaustion from bearing the weight of so much responsibility.”

While Gross’ memoir outlines the end-of-life decisions that often confront health care providers, clergy and ethicists, her mother’s ability to think rationally until the end gave her the control that others must often surrender. Instead, she exits on her own terms, without sentiment or self-pity.

A Bittersweet Season: Caring for Our Aging Parents — and Ourselves is sure to become required reading for anyone with an elderly parent who depends on long-term care. It’s also a worthwhile read for anyone who is interested in America’s health care system as it braces for the demands posed by demographic changes that include a sharp rise in the group now termed the “old old.”

Of course, the time to read the book is before the crises begin to mount, to be better prepared to make wise decisions and deal with whatever arises. — AP

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