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“It really was kind of like being Lucy on the conveyer belt with too many chocolates coming at you,” says Jane Gross of the experience of having her elderly mother unexpectedly discharged from a New York hospital on Sept. 12, 2001.
Gross’ mother, Estelle, was a highly intelligent, fiercely independent woman who had been widowed at 58, and had later made her own decisions about selling her suburban house and relocating to an assisted living complex in Florida when she was a fit 77. But Gross found that, regardless of her mother’s self-sufficiency and savvy — and her own, as a successful journalist for Sports Illustrated, Newsday and The New York Times — the experience of dealing with her mother’s declining health was surprisingly difficult, emotionally wrenching and stressful.
Realizing that very few people prepare for this — although many Baby Boomers will have to cope with it — Gross decided to write a book about her experience, “A Bittersweet Season: Caring for Our Aging Parents — and Ourselves,” which comes out next month from Alfred A. Knopf.
The author is the daughter of syndicated New York Post sports columnist Milton Gross and the sister of writer Michael Gross. She and her brother made the decision to move their mother from Florida after she’d received a phone call from her mother’s internist saying Estelle had a tumor on her spine. Looking back now, however, Jane regrets that, during many years of visits, she had never gone to a doctor’s appointment with her mother nor tried to establish a relationship with her primary-care physician. The result was what she calls “the early heroic rush,” during which she and her brother hastily set up their mother in an assisted-living apartment in New York, and with medical specialists. In hindsight, Gross feels their actions were much too precipitous; there was no pressing emergency that made this swift action essential.
“I didn’t understand that it wasn’t like a work to-do list that you have to do all in one day, do it faster and do it better,” she says. “We turned her entire life upside down in the space of two weeks. It wasn’t necessary; in a perfect world, I’d have been paying a different kind of attention for a longer time. I think we had fallen for the idea that she would be alive and relatively independent and then she would be dead. And for me it was the in-between time that was so confusing. Gradually, the roles were reversing. I was utterly unprepared for what that meant practically and what that would feel like. I was also utterly ignorant about what does Medicare do, what does Medicaid do, what does assisted living mean in Florida, what does assisted living mean in New York.”
Among the practical points she makes in the book is the need to have an internist to coordinate one’s parents’ medical care. She also strongly advises adult children to speak with their parents about their desires as early and in as much depth as possible. “I think, in general, they are much more comfortable having those conversations than we are,” she says. “They sense how badly we don’t want to have them. I think that we both owe it to them and we owe it to ourselves in terms of making the process easier to give them an opening to have that conversation. We should know what they want and what they need” well in advance of the time when it’s necessary.
During her years of caregiving, Gross developed an expertise in writing about looking after one’s elders and, in 2008, she founded a blog, The New Old Age, which is affiliated with The New York Times.
Gross details the way in which, even as her health deteriorated, her mother remained in charge of her own care. “You could see the respect in their faces as this old woman ran these meetings [at her nursing home] like a ceo, which is what she was, the chief executive officer of her own life, never more so than in this hard season of loss,” Gross writes. “I easily took on the role of her trusty second-in-command.”
Eventually, Estelle reached the point where she wanted things to come to a halt. By then, she was using an electronic message board to indicate what she wanted, and she spelled out the word “now.” This meant that she wanted both food and water to stop. So it was done, and she lingered for 13 days. Morphine was used to keep her comfortable, and she died according to her own wishes.
Now that she’s an expert on the topic, what arrangements has Gross made for her own future, in view of the fact that she isn’t married, and neither she nor her brother, who is, have children? She has had long-term care insurance for many years, she notes, adding, “I live very frugally in hopes that when the time comes, I’ll have enough money to buy what I need.” Her best friend, Esther Fein, has her health-care proxy, because Gross believes that it would be easier for a friend than for her brother to pull the plug on her if someone needs to. She also hopes that at some point she and her women friends will all live together in a rambling house.
“That said, I wish I had a daughter,” Gross adds. “It’s the absolute best form of long-term health care insurance.”