One woman’s account of her mother’s final years, and the complexities of when aging parents can no longer live alone

Afew years ago, the casual observer passing by Shifra Stein’s* house would have noticed two cars in the driveway, children’s bikes propped up near the garage, a stroller, and two wheelchairs — in other words, transportation for every age and stage.

Welcome to the world of the “sandwich generation,” in which middle-aged couples find themselves simultaneously raising young children, marrying off the oldest ones, and caring for declining parents. In the Orthodox world, says Harriet Blank, the director of OHEL geriatric services, our sandwiches are especially thick.

“They’re triple-decker,” she says. “It’s common to find parents in their eighties or nineties cared for by children in their sixties who have children and grandchildren they may also be helping.”

Jews have an old saying that a mother can take care of ten children, but ten children can’t take care of one mother. While caregiving was surely challenging in earlier times, today it’s all the more complex. Adult children find themselves navigating unknown medical territory, dealing with home care aides, and wading through a morass of insurance, legal, and government paperwork. They might be waking up with babies and then waking up for late-night parent emergencies.

It’s easy to get overwhelmed. Shifra Stein often felt that way as she did her best to take care of her own family while caring for her mother.

“Those were the most difficult years of my life,” she says. “People would mouth platitudes like, ‘You’re doing such holy work, you’ll have arichus yamim!’ or, ‘What a good lesson for your children!’ But sometimes, it didn’t feel wonderful at all. I was very often lonely and depressed. It’s only now that I see how we all grew from the experience.

“Caring for a sick parent is very emotional,” she continues. “It’s very painful to reverse the roles, to have the parent you always depended on depend on you. Sometimes you’re in the position of forcing your parent to do things he or she might not want to do. It can be a challenge to preserve your parents’ dignity when they’re incapacitated.”

After her mother was widowed, and seemed more frail and easily confused, Shifra convinced her to sell her house and move to an apartment a few miles closer. As she helped with the move and unpacked her mother’s affairs, she realized that her mother was showing signs of cognitive decline she’d never noticed before, or had simply attributed to post-operative confusion. Her mother wasn’t cooking much, and her once-spotless house was dusty and unkempt; there were cans of food in the cabinets without a hechsher.

“She once served me a piece of fish, and I saw it had mold on the edges,” she says. “When I pointed it out, she said, ‘In the shtetl that fish would have been a delicacy! Just cut it away!’ ”

Between the cognitive decline and other health issues, Shifra set about finding an aide for several hours a day, despite her mother’s initial resistance. It was, she says, a herculean effort. It took her close to eight months to organize everything for her mother to be covered under Medicaid. The paperwork was daunting, and when nurses arrived to interview the patient, often her mother would present herself as more functional than she really was. (“Yes, of course I cook for myself. Of course I’m on top of keeping my house clean.”)

Shifra went through a series of aides, some of whom lacked sensitivity. “That was painful and demoralizing,” she says. “You have to be careful to get someone who’s gentle and treats the patient with dignity.”

She finally found someone who not only attended to the physical needs, but maintained her mother’s dignity when her condition deteriorated. “We were in touch on a daily basis and supported each other in caring for my mom,” Shifra says.

Her mother began a slow decline of losing mental and physical function, with better and worse days.

“With dementia, you’re dealing with a constantly changing situation,” Shifra says. “I wasn’t always prepared. Each person’s decline is different, in a different way. Some people become placid, others aggressive. At the beginning, when they have more periods of clarity, you think maybe your parent will come back to you, but mostly it’s like losing them a little every day.”

Her own mother ran the gamut of symptoms, going through some periods of being completely nonverbal, and others of repeating the same five or six words.

Shifra considered herself lucky, since her friend Chani’s father became abusive, insulting her and bossing her around and making outrageous demands.

“It used to really hurt, because I had given up my job and my personal life just to take care of him,” Chani told her. “But after a while, I learned not to take it personally, to see it as the disease talking, not him.”

It’s terribly painful to watch someone you love deteriorate before your eyes. On top of that, caregivers suffer from a constant sense of inadequacy.

“You always feel like you’re never doing enough for your parent,” Shifra says. “Then everybody else — your kids, your friends, your family — want a piece of you too, and get upset when you’re not available. You feel like everyone will be mad at you, and that you can’t make anyone happy.”