Five nights a week, Amanda H. and her husband drove to her parents’ upscale continuing care retirement community in suburban Boston. She could feel her anxiety build as they rode the elevator upstairs.
For two hours, they ferried dinner from the dining room, transferred it to china, set the table. Amanda hand-fed her father, whose neurological disorder, multiple system atrophy, makes it difficult for him to maneuver a fork. “It’s unsightly and embarrassing for him,” she said, so her parents ate in their independent living apartment.
Then Amanda’s husband helped ready her father for the night. He cannot stand unassisted, so his son-in-law helped him undress, brush his teeth, urinate and transfer unsteadily into bed — “a laborious process,” said Amanda, whose asked that her last name be withheld so as preserve her parents’ privacy.
This was not how she’d envisioned this phase of her life. Her own daughter is grown, and at 56, she said, “I felt ready to turn a corner.” She had contemplated volunteering as a tutor for English-language learners.
Instead, along with the evening routine, Amanda drives her father, 86, to medical appointments at least weekly. She delivers groceries so the private aide who helps in the morning can prepare breakfast. Amanda pays her parents’ bills, prepares their taxes. She spent months cleaning out the house where they’d lived for 45 years, “unearthing things from every cupboard and drawer.”
She and her husband also endure her father’s relentless low-level criticism. The food isn’t hot enough. The items placed on his night table are an inch too far away. “You’re asked to help, and then you’re found fault with,” she said. “It’s so chronic, built into our every interaction. Our whole lives, he’s never said, ‘Good job.’”
Her two brothers live several hours away — not coincidentally, she thinks — so she bears the brunt of her parents’ care and their discontent. Her mother, 90, is declining as well.
Other adult children, Amanda knows, have to sacrifice far more. Many can’t afford any paid help. Her parents, maddeningly, have plenty of money yet resist any suggestion that might improve the situation.
Could the agency that sends aides two nights a week send them more often? Yes, at 6:30 p.m. But her parents want them at 7 p.m. So, no.
Could a different agency provide aides at 7 p.m.? No, her parents like the helpers they have.
The whole purpose of a continuing care retirement community is to provide more help as residents need it. What about moving from independent to assisted living? “That’s horrifying to them,” Amanda said, largely because they’d have to give up the second bedroom fitted out as her father’s office. “Even though he spends very little time there now, that’s his identity,” she said.
Amanda would like to discuss the conundrum with the facility’s social worker, but her parents already fear being compelled to move. “By alerting anyone to their condition, we’d bring unwanted attention,” Amanda said. “I feel like I would be snitching.”
The Tyrannical Parent (my phrase, not hers) wants and demands help, but only on his own terms. Other people must compromise; he won’t. The losses that can accompany aging make him ever more dictatorial about the few things he can still control. His weary children may recognize the dynamic, but it’s hard to live with, nonetheless.
Amanda, feeling trapped, drives home after dinner and drinks more wine than she used to. And she has cracked two teeth — the result, her dentist says, of clenching her jaw.
This is a job for Super Social Worker: Barbara Moscowitz, senior geriatric social worker at Massachusetts General Hospital.
Ms. Moscowitz sees this situation frequently with long-criticized children. “They come to caregiving with the hope, conscious or unconscious, that they can resolve this: ‘If I provide good enough care, maybe I’ll be told I’m loved. I’ll be told thank you,’” she said.
At the same time, “the parents may be holding on to their patterns even more tenaciously,” Ms. Moscowitz added. “So you see the family getting stuck.”
Getting unstuck isn’t simple. She recommends enlisting an objective third party, a professional who can assess the parents’ situation. A nurse or social worker for the retirement community might serve, or a geriatric care manager (who works directly for the family, so administrators wouldn’t know she was on the case).
Were she the mediator, Ms. Moscowitz said, “We’d write a plan: This is what they need, this is what they have, this is what we can do.”
The outsider may be able to recruit allies to break the logjam. “Who might the mother and father listen to?” Ms. Moscowitz asked. “A clergyman? Their primary care doctor? The parents’ own siblings?”
Sometimes, the children who got away can help. Ms. Moscowitz often arranges conference calls with all the siblings, to establish what’s needed and to solicit support for the one most under the gun, like Amanda. “They may give the daughter permission not to continue in this way,” Ms. Moscowitz said.
For the parent, she added, there’s often an unconscious fear. “If my daughter knows someone else will feed me dinner, she won’t see me. I’ll be forgotten.” A caregiver manipulated by Tyrannosaurus parens can assure her parents that she will still visit and help, that she won’t withdraw. But she can decline to provide nightly services for people who have other resources.
As it happened, not long after Amanda first emailed me, she got a call from the retirement community, whose staff had noticed that her parents no longer used the dining room. The social worker had met with them and, without apparent resistance, arranged an hour’s care from private aides each evening.
So Amanda’s husband will regain his evenings; the aide will take over bedtime prep. But an hour is not enough time to provide all the help needed, so Amanda will still go feed her father — now, seven nights a week.
“It’s not the end of the world,” she told me. “I should be able to handle that.”
