THE PROMISE
Sometimes you have to break a vow to avoid a breakdown
BY:ANNE HOSANSKY
"Promise you'll never put me in a nursing home." How many of us have been lassoed by that demand? Is it a promise we're obligated to obey? Or is it one that shouldn't be asked?
I was caught in this quagmire myself. I was sitting in my car, waiting for my mother to finish a visit with a friend who was in a nursing home. When she came out, her face was ashen. Hastily entering the car as if being pursued, she said, "Promise you'll never put me in one of those places!" I gave her my assurance. Four years later, after she suffered a mental breakdown that made it dangerous for her to live alone, I broke my word.
I didn't feel I could have her live with me. The alternative was a nursing home, but she entered it like a bewildered, resentful child. Years after her death, I'm still not free of guilt for having broken my promise.
Bess
How do adult children handle this all-too-common dilemma? Love, gratitude and devotion enter into the equation. But whether a parent's physical and/or mental deterioration is gradual or the result of a dramatic episode, if you've been asked—and promised—chances are you'll do everything in your power to try to keep what could end up being an impossible promise.
Bess*, a retired teacher, agreed to respect her 90-year-old mother's request to "die in my own bed." So she found her mother an apartment near Bess' home. She also bought her an emergency pendant. But one day, not getting any answer to her phone calls, Bess hurried to her mother's apartment and found her lying on the floor, where she'd fallen. Asked why she hadn't used the pendant to signal for help, Bess' mother said, "I forgot to push it."
She had broken her leg and had to use a walker. So, even though her mother protested, Bess hired an aide to come a few days a week. But her mother's condition worsened and she had to be in a wheelchair. "Apartment doors don't accommodate that," Bess explains. "Mother couldn't get into the bathroom by herself." An aide now had to be there every day at a cost of $1,500 a week! "It was my mother's money," Bess says, "but it was going through a sieve."
Bess was also worried about her mother's isolation. "She wouldn't let friends visit her because she didn't want them to see her like that." With her mother increasingly dependent on her, Bess was always running there. "It knocked the stuffing out of me," she recalls. "The visits were fraught with tension. I had a job, too. I ended up losing lots of days from work."
Secretly, Bess began looking into nursing homes, telling herself that, with their long waiting lists, she had plenty of time to reconsider. But an opening arose and she was informed that her mother would have to come within 24 hours or lose her place.
"I was afraid to tell my mother, but to my surprise she agreed to go there. Anything to get out of her lonely life, I guess." Once she was in the home, her mother's health declined. She died a year later.
As for feelings of guilt, Bess insists she had no alternative. "You know those statues of Atlas holding up the world? That was me holding up her world."
Mitch
This reversal of the parent-child relationship and the responsibility thrust on the adult child can leadto resentment, especially if he's struggling with his own problems. Mitch*, who cared for his wife before she died a few years ago, now has the burden of caring for his 86-year-old mother. Over the years, she had repeatedly told him she never wanted to be in a nursing home. "I agreed to do everything in my power not to put her in one," he says.
His mother still lives in her own apartment, but her mind is wandering, says the Ohio-based executive. She's also had minor strokes that caused her to fall. A year ago, on doctor's orders, Mitch hired an aide to stay with her 24 hours a day. His mother pays for the $80,000-a-year care, "but my inheritance is out the window," he notes. Distress about money is widespread among these caregivers.
Though Mitch has a demanding job and is raising his teenaged daughter alone, every weekend he drives 40 miles each way to visit his mother. He sets up her medications so they're ready for the aide to dispense, brings groceries for the week, pays the bills and takes care of her investments. And when the aide fails to show up, Mitch has to leave work to go there.
Each weekend he stays for several hours, but with his mother now approaching mid-stage Alzheimer's, attempts at communication have become frustrating. He fills the time with games of Scrabble, at which she used to excel. "It's mental exercise for her and helps me gauge the progress of the disease. Her remembrance of words and strategy are key indicators."
But, Mitch wonders, at what point should he give in and put her in a nursing home? "One blessing is that she may not remember a promise was ever made. The guidelines could be uncontrollable incontinence, or worse, when she no longer recognizes me.
"If she goes into a home, I'll have a mixture of guilt and relief," he admits. "Less guilt about going back on a promise, because I'm doing it for her own good-and, frankly, for my needs. I've run the gamut." To minimize any guilt, he says he'll make sure the home is well recommended by doctors, friends and relatives. "I'll check it out myself for cleanliness, patient-staff ratio, and so on."
As Mitch is aware, his burden won't end at the nursing-home doors. "I'll still visit, still have responsibility for her."
Yvette
Yvette* and her brother were raised by a widowed mother. "She worked and slaved to give us everything," Yvette recalls. "There was no way I was going to walk away from her when she grew old." So Yvette agreed to her aging mother's demand: "Promise I can live with you or your brother." She assumed her brother felt the same way, but he wanted nothing to do with that promise.
Yvette, who's divorced, sold her one-room apartment and bought a larger one with room for her mother. "But she began acting very erratic," Yvette notes. Afraid to leave her mother alone, Yvette would even bring her mother on her week's vacation. "I had to spend every single minute with her."
Later, when her mother broke her hip and needed rehab at a nursing home, keeping the promise was taken out of Yvette's hands. "I thought it might be just a few weeks," she says. "I wasn't absorbing the whole situation." Then doctors diagnosed her mother as suffering from "probable Alzheimer's." Though anguished about breaking her promise, Yvette felt she couldn't handle this herself.
For eight years, Yvette's mother has been in the nursing home, where Yvette visits five times a week.
"If she recognizes me or says something touching, I'm in a good mood afterward. Other times, I can't wait to leave because it's so horrible to see her there. Sometimes I think I could have taken care of her myself. It just would have meant giving up my life. I guess," she admits, "there was some sort of survivor in me."
Stella
Keeping the promise can be a mixed blessing, as Stella Mora Henry, who speaks nationally on the topic of aging parents, learned from personal experience. Her father, who had Alzheimer's, extracted her promise that she would let him die at home, and her mother continually reminded her of it. "I became a child again, doing what my parents told me to," Stella recalls.
With her parents just 15 minutes away, she went there each day. Her "totally supportive" husband, Terry, built grab bars to make it easier for her father to get in and out of the bathtub and helped her parents financially by paying for two aides, who assisted with physical tasks neither Stella nor her elderly mother could handle. However, since Stella is a registered nurse, the aides often called her for help. And as her dad weakened, Stella found it necessary to go to him often twice a day.
She also had to take on the unfamiliar role of staff manager, overseeing schedules, taxes and insurance. "Two aides really means four," she points out, because each aide needs a backup. "It's a full-time job, and maybe you already have one, plus a husband or child who needs your attention." Stella's son, Christopher, was seven at the time.
"I kept my promise," she says. "But it wasn't the most responsible decision. You may have love but not the skills to meet your parent's needs. It's easy enough to say, ‘I promise,' but how do you manage when he's incontinent and no longer ambulatory? It's a very emotional time for everybody."
Stella, who later authored The Eldercare Handbook: Difficult Choices, Compassionate Solutions, believes it would have been easier for her father if he'd been in a "good nursing home," with professional equipment and trained personnel. "Parents should be careful what they wish for," she says wryly.
Still, she thinks that enabling her father to die at home was her final gift to him. "I adored my father, so how can I not feel good about what I did?" she says. "As difficult as it was, the ways I cared for him helped fill the gap of sorrow."
But when her mother later developed Alzheimer's, Stella used the lessons from her book to make her decision. This time Stella opted to put her mother into an assisted-living facility. "After a week there," Stella explains, "she started taking part in all the activities."
She also notes that caring for a parent at home will become more expensive. "Nursing-home costs have gone up about four percent in the past few years, but the cost of an aide has gone up seven percent." The government, she adds, doesn't pay for aides because they aren't licensed medical personnel.
"Promise me...," is an unfair demand, she says. She thinks the best response is: "When you can't take care of yourself anymore, we will come up with a game plan." And the fair promise is: "I will make the most responsible decisions I can for you."
*Names changed at subjects' request.