Marcia Perna, Ms. Sherman’s daughter, and her husband, Michael, were acutely aware of this fact from decades of work at their day jobs, but it was not something that they imagined they would personally encounter.

Rita Sherman did worry about money, according to her daughter. Ms. Sherman’s father had fallen ill when Rita was a child, and the family’s fortunes had taken a negative turn. Ms. Sherman worked much of her adult life as a bookkeeper and also as a recreational aide for older people who were sick. Her husband, Stanley, had worked as an industrial psychologist and educator before becoming too ill from emphysema to work.

Ms. Perna still remembers the stern warning her father gave her about his own care. “‘You make sure I don’t go to a nursing home!’ he told me,” she said. “‘If you think you’re going to transport me, I’m going to jump out of the car.’”

She didn’t dare try. Her mother had quit her job to take care of him before he died, and once Ms. Sherman was on her own, she soon sold the family home — the same postwar ranch house in Natick, Mass., they’d had all along — and moved to an apartment.

Her mother, according to Ms. Perna, was the kind of health-obsessed person who even decades ago would exercise regularly and go sparingly on the cheese. Still, Ms. Sherman had watched her own mother end up in a nursing home and wanted to plan for that possibility in a way that might preserve some of her money for Ms. Perna, her only child. So after her husband’s death, another relative helped Ms. Sherman buy that long-term care insurance policy.

According to Ms. Perna, her mother’s mother succumbed to her illness mere months after moving into a nursing home, and everyone assumed that Ms. Sherman would go just as quickly, too, if it ever came to that. But just in case, the family put some of her assets in a trust, so that in the unlikely event that she lived in a nursing home longer than the three years that her insurance policy would cover, any bills would not entirely wipe out her savings.


Rita and Stanley Sherman in the 1970s.

Things did not work out that way, though. Ms. Sherman started having trouble with daily tasks, was found to have dementia and moved into an assisted-living facility and then a nursing home with specialized staff members for memory care patients. Along the way, the insurance company declared her not sufficiently ill to warrant paying out on the policy. Then the trust, which is common and legal, did not hold up to state scrutiny because of a problematic passage.

These twists and turns reveal two terrifying facts about aging and how we pay for it. While it’s hard to imagine a couple better suited to help an aging parent navigate her final years than a social worker-financial planner duo, the Pernas still ended up hiring five additional professionals to help them with complex, specialized tasks: a long-term care insurance salesman, a nurse consultant to help get the insurance company’s decision reversed, an elder care lawyer to set up the trust, another consultant to help with the Medicaid application, and a malpractice lawyer to sue the attorney who created the defective trust. (The family eventually received a settlement. And to the many readers who have asked about the ethics and economics of Medicaid planning and trusts, please watch this space in the coming weeks.)

So add aging to the maddeningly long list of enormously complex financial tasks that each of us faces. And pity those in their 70s or 80s who must navigate this morass without expert adult children or other advocates.

Second, for people like Rita Sherman who lead healthy lives for three-quarters of a century, it is often their brains that give out first, not their bodies. And when that happens, the decline can be both lengthy and expensive, given how much supervision dementia patients need.

Just over three years into Ms. Sherman’s nursing home stay, her money was gone and the long-term care insurance had been used up. She eventually did qualify for Medicaid, which paid for much of her final two years of care. By then, her daughter was calling the shots, since Ms. Sherman was no longer able to speak. “By the time my mother died, I had long since said goodbye to her,” Ms. Perna said.

Sitting in their garden here this week, still a bit shocked by all that happened before Ms. Sherman’s death last year, the Pernas tried to make sense of their story and its morals. First, there are their own circumstances. Michael, 67, has diabetes and assumes that qualifying for long-term care insurance is impossible for him at any price. He plans to keep working, in part because he loves it, though the ability to self-insure with more savings for his own possible future care doesn’t hurt. Marcia, 66 and less than two years into retirement, may price out a policy for herself soon.

As for the rest of us, Ms. Perna has a few words of advice. To the people who believe that adult children should simply take in their aging parents and care for them at home, she paints a harrowing picture of dementia. The incontinence may come first, often many years before someone dies. Then there are the middle-of-the-night wakings and the insistence that there is someplace urgent to go. Wandering is frequent, and violence is not unusual. Her mother, physically contracted in her final days, required two nursing home staff members to lift her into her wheelchair and frequent, manual bed-turning to prevent too much skin damage.

Mr. Perna had to prod her into discussing how many hours she had put into the coordination, the logistics and all the rest. Adult children who handle even this suffer their own lost productivity, which may make it harder for them to retire comfortably.

And to those who think Medicaid recipients simply should have worked harder, more and longer, Ms. Perna makes no apology for her taxpaying mother, who lived in her starter home until her husband died and stopped working only to take care of him when he was sick.

“I think that it’s human nature to think that if someone is in a bad circumstance, that there was something they were doing to cause it,” she said. “But that is not how life works. Things happen to people, and people don’t really understand how easily those things can happen.”

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One Woman’s Slide From Middle Class to Medicaid – New York Times