A Wake-up Call For Caregivers

After years of reporting work, Jane Gross came to believe that she was one phone call away from any piece of information that she needed. Still, even after 30 years at The New York Times on the health and aging beat, among others, she found it very difficult to navigate the system of Medicare and other health benefits when she and her brother, who is also a talented writer, became caregivers for their mother. All of their specialized resources and competence proved useless. In an interview, she wonders out loud how, if they couldn’t figure it out, how could others?

Her new book, “A Bittersweet Season: Caring for Our Aging Parents — and Ourselves” (Knopf), answers a lot of the questions she was asking, and more. She began the book after her mother’s death, and weaves together memoir, advice and public policy issues. Readers may pick up this very well-written book up to learn about taking care of their own ailing parents, but will soon realize that it’s also a wake-up call to become educated in order to make informed decisions about their own inevitable aging. Seniors will also be interested in her perspective, and the two generations might want to read this together and discuss preferences and priorities, sooner rather than later.

In an interview in Manhattan, she mentions that she has been surprised to hear from professionals — she found out lawyers don’t know what geriatric care managers do, and the latter don’t at all understand the law.

Gross, who launched and wrote a blog for The Times called “The New Old Age,” successfully taps into a large societal concern, not often articulated. In the course of writing this piece, coincidentally, I received two inquiries from friends looking for recommendations about elder caregivers.

She points out that more and more people are living past 85, and joining the fastest growing age group in America, which is expected to double to 11.5 million by 2035, from 5 million today. “The vast majority of them will need at least two years of custodial care, and Medicare doesn’t pay for that,” she underlines; she explained that the Medicare system, with all its regulations, was put into place in 1965, when people weren’t living this long. Medicare doesn’t cover home health aides, which are a necessity for many seniors who need help with daily tasks. Long-term care was not part of that initial legislation.

“When all 77 million of us [members of the baby boom generation] are that age, I can’t even imagine who’s going to take care of us and what’s going to pay for it, unless Medicare is redesigned,” she says.

For Gross, caregiving is “an all-consuming and life-altering experience that wrings you out, uses you up and then sends you back into the world with your heart full and your eyes open, if you let it.” It was also a way back to her mother, and toward her “better self.”

“Forgive the New Age-speak,”’ she writes. “But this is all about the journey, not the destination, because we all know the final outcome.”

With candor, she writes of her own experience, bringing her mother back from Florida to New York and ultimately into a nursing home, where she got to know the staff well. While she and her brother shared responsibilities, they didn’t see eye-to-eye on many of the decisions they had to make, but eventually found ways that their different styles could be complementary. When issues arose, each showed up with a reporter’s notebook, asked lots of questions, took notes and saved everything.

Gross grew up in journalism. Her father Milton Gross was a sports columnist for the New York Post for more than 30 years and the author of books on baseball, boxing and golf. Her brother Michael Gross is the author of “740 Park” and other books. She joined The New York Times as a sportswriter in June 1979, after working as a sports reporter for Newsday for four years; she was part of the first generation of female sports writers to have access to the locker rooms.

Among the topics she addresses in “A Bittersweet Season,” in a style that’s accessible and always compassionate, are the myths about assisted living, with great gaps between expectations and realities for families; the financial implications of health care planning; and how employers fall short in understanding the needs of employees who are taking care of elderly parents – the issues are not the same as for employees taking care of children. For a day, she shadowed Dr. Patricia Bloom, a staff geriatrician at Mt. Sinai Hospital, and writes about the eight patients she saw in clinic, each one getting about an hour of the doctor’s time.

At the back of the book, the author includes pages of useful resources about government websites, research, housing, care management and other services, caregiving, legal and financial concerns, end of life issues and Alzheimer’s disease.

She also provides very practical advice about getting involved, whether about initiating family discussions to avoid making family decisions in the midst of crisis, even if doctors are pressuring for haste or for quick action, choosing a nursing home, or recognizing the right timing for stepping into parents’ affairs. “I can tell you, from experience,” she writes, “that if you take charge too soon, you will patronize and humiliate your parents, but if you step in too late, their manageable problems will have turned unmanageable.”

Envisioning the future for her generation, she says, “We’re all going to end up in the equivalent of all-girl communes. In a way, that’s what nursing homes are.” Her fantasy is a great big house with a porch lined with rocking chairs. All the residents would have long-term insurance policies, and would help take care of each other – some may be able to see, others can walk, etc. – supplemented by some caregivers. “We’d all sit on the porch and talk about what it was like to be young.”