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“I saw it was being done for someone whose child was very sick,” recalled Bernstein, a longtime civic activist. “So I said, ‘I’m not going to go to a nursing home. I’m remaining here.’ ”
As of late Friday afternoon, the fund had raised $72,000 over two months, with more than 1,000 donations ranging from $10 to $1,000.
Donations have come from people she knows, but many others are from donors she doesn’t know or can’t recall.
“The response has been phenomenal,” said Bernstein, seated in a bedroom chair with a pillow behind her head and a blanket on her legs. “My children have given me some help, but they can’t afford much. They have to retire, too, and I want to leave something to them.”
For round-the-clock care, such a sum is not a long-term solution. But for Bernstein, whose home care is not eligible for Medicare or Medicaid assistance and who cannot afford private insurance for long-term help, the donations buy a little time.
“Utilizing social media or the platform of GoFundMe is pretty creative and not something I had ever seen before,” said Mandi Speakman, director of the Chatham Council on Aging. “One hundred years ago, no one thought they would be living to be 108. There’s this generation of people who thought that their Social Security and pension would carry them through.”
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Even if Bernstein were to move into a nursing home, Medicare pays for only a limited stay with skilled care. Medicaid — the federal and state program known as MassHealth in Massachusetts — will provide nursing home coverage if a person’s assets do not exceed $2,000, excluding a home, car, and personal belongings, according to the Massachusetts Senior Care Association.
Bernstein, who receives Social Security and a small teacher’s pension, does not meet that threshold and hopes to avoid the fate of many seniors who spend down their assets to qualify for long-term care under Medicaid.
“We are lucky in some ways that there’s a system in place that will pay for our care in later years,” Speakman said. “But the downside is you have to spend yourself into poverty to pay for it.”
Juliet’s son Bruce Bernstein, who set up the GoFundMe account, said his mother’s home-care needs have intensified in recent months. What had been four to eight hours of daily care is now 18 to 24, he said.
“She’s not eligible for any type of assistance. This was her idea, and I set it up,” Bernstein, 66, said of the fund-raising effort.
“She was out of money,” he added. “I’m not against nursing homes, but she has seen friends who have gone into nursing homes and died very quickly. She wants to control the terms of her final times.”
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Home equity loans have been taken out on the Chatham house. Her oldest child, 80-year-old Ellen, secured a reverse mortgage on her home in California to help pay for care.
Lee Roscoe, an author and playwright who nominated Juliet Bernstein when she was named Cape Cod Woman of the Year in 2019, said her friend’s dilemma speaks to an important, broader problem about the affordability of home health care.
“I went through this with my mother. It’s a critical issue that elders be able to stay at home rather than be warehoused,” said Roscoe, who lives in Brewster. “It’s just tragic that there’s no dedicated funding for this, particularly for impoverished people.”
“This is a really, really important issue for her and other elders,” Roscoe added. “I want to see somebody give her an endowment so she can stay there until she’s gone.”
The cost of home care will become more pressing as the ranks of the elderly grow. The US Census projects that the number of people 85 and older is expected to nearly double by 2035, to 11.8 million from 6.5 million, and nearly triple by 2060.
A walk through Bernstein’s photo-filled home is a walk through the 20th century and a little beyond. The daughter of Russian Jewish immigrants — her father served in the pre-revolution Czarist army before escaping to Germany — Bernstein was raised on a farm in the Catskills and moved as a young girl to New York City.
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She graduated from Brooklyn College, earned a second degree at Columbia University Teachers College, and married Selig Bernstein, another teacher whose progressive activism led him afoul of McCarthy-era officials hunting for socialists and suspected communists.
“What we wanted was peace and justice and for everybody to be treated well,” Bernstein said.
“She’s always been very involved in the community, interested in events, and active in social movements,” said Bruce Bernstein, an administrator for the New York City public hospitals. “She loves finding out about people. She stays very mentally engaged.”
Juliet Bernstein’s political education began at a young age. She remembers accompanying her mother in a horse-drawn wagon to a Catskills polling station in 1920 when American women for the first time were allowed to vote.
After retiring in Chatham in 1971, she became president of the League of Women Voters of Lower Cape Cod, fought for women’s reproductive rights, shepherded a resolution to declare Chatham a nuclear-free zone, and made national news a few decades ago by pushing to allow women in the town band.
“Hell broke loose in the town on that,” she recalled with a laugh, leaning forward and slapping her leg. “I got phone calls. Somebody told me to drop dead.”
Until she was 100, Bernstein wrote weekly newsletters for the Cape Cod chapter of the Fellowship of Reconciliation, an international peace group founded during World War I. She also was awarded the Unsung Hero Award by the Cape Cod chapter of the NAACP in 1993.
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At age 108, Bernstein’s mind continues to move swiftly from topic to topic, even if her body can no longer keep up its former pace.
It’s a mystery, Bernstein said with a smile, that she has lived so long. In 2010, Bernstein recalled, she was diagnosed with B-cell lymphoma, a form of cancer.
“The doctor told me, ‘I’ll give you another 10 years,’ “ she said. “I think I’ve exceeded it!”
Brian MacQuarrie can be reached at brian.macquarrie@globe.com.
