Desperate families seek affordable home care

It's a good day when Frank Lee, a retired chef, can go to the hardware store, fairly sure that his wife, Robin, is in the hands of help reliable. He spends almost every hour of the day anxiously supervising her care in their home on Isle of Palms, a barrier island near Charleston, South Carolina.

Mrs. Lee, 67, has suffered from dementia for about a decade, but the couple was able to travel abroad and enjoy their 40-year marriage until three years ago, when she became more agitated, prone to sudden attacks and could no longer explain what. she needed or wanted. He found it difficult to care for her largely on his own.

“As Mom's condition became more and more difficult to manage, he just handled it,” said Jesse Lee, the youngest in the family. the couple's three adult children. "It was getting harder and harder."

"Something had to change, or they would both perish."

Frank Lee's search for trustworthy home care aides – an experience millions of American families face – was often exhausting and exasperating, but he persisted. He didn't have complete confidence in the care his wife would receive in an assisted living facility. Last August, when a respite program funded her brief stay at a facility so that Mr. Lee, 69, could take a trip to the mountains, she fell and fractured her sacrum, the bone that connects the spine to the pelvis.

The government offers little valuable assistance to families who need help at home, unless they are poor . The people who work these jobs are often woefully underpaid and unprepared to help a frail elderly person with dementia bathe and use the toilet, or to defuse an angry outburst.

Usually, it's the family that steps into the breach: adult children who bring together a fragile chain of visitors to help a sick father; a middle-aged girl returning to her childhood bedroom; a work-from-home son-in-law watching over a confused parent; a woman who can barely take care of a failing husband on her own.

Most people were cared for by their families and not by professionals

Partners and daughters were the most common caregivers for people needing help with daily activities.

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Note: For people 65 and older who needed and received care long-term in 2020 and 2021.

Source: New York Times/KFF Health News analysis Health and Retirement Study data for 2020 and 2021

By Albert Sun and Holly K. Hacker

Mr. Lee ultimately found two assistants on his own, without the help of an agency. Using the proceeds from the sale of his stake in a group of restaurants, including the popular Charleston bistro Slightly North of Broad, he pays them the going rate of about $30 an hour. Between his wife's care and medical bills, he estimates he spends between $80,000 and $100,000 a year.

"Who the hell can afford that? " He asked. “There is no relief for families unless they have great wealth or see their wealth wiped out. » He fears he will run out of money and will be forced to sell their house, which is more than three decades old. “Funds are not unlimited,” he said.

Known for emphasizing local ingredients and mentoring young chefs in Charleston, Mr Lee retired in 2016, a few years after his wife's diagnosis.