Her husband’s dementia worsens. Bills are piling up, and knotty daily and long-term decisions must be confronted. The wife is exhausted, overwhelmed, lonely. She needs support from the family. So she turns to the adult children — his, from a previous marriage.
But will they help or make the situation more difficult?
Every year, nearly a half-million adults over age 65 remarry, and a growing proportion of these spouses — usually the wives — eventually will become primary caregivers. Many will look for aid from those with whom their ties may not be particularly strong: their partners’ adult children. New research suggests the caregivers may be in for bitter disappointment.
“They refuse to accept the diagnosis. They think it’s a plot so he can quit working so he doesn’t have to send them money. He’s an old man, and they are
all adults. They insist he isn’t sick. They don’t know, they don’t ask, they don’t care.”
— A research participant interviewed by Carey Wexler Sherman
A study published this month in The Journal of Marriage and Family examined sources of support for late-life wives whose husbands had a dementia-related disease. The researchers found that nearly half of the people whom the women felt had a negative impact on their caregiving were the husband’s relatives — most prominently, his adult children. Generally, these women felt that their stepfamilies created conflict or that their support was minimal or nonexistent.
Research has already shown that dementia caregiving for intact families is demanding, intensive and isolating. This study underscored that remarried caregivers face additional challenges.
“One woman told me, ‘I called a family meeting to discuss how to manage things, but no one showed up,’” said Carey Wexler Sherman, the lead author and a research investigator at the Institute for Social Research at the University of Michigan.
The family meeting is often urged by social workers, Dr. Sherman added, “but it simply doesn’t fit these situations.”
Dr. Sherman and her colleagues extensively interviewed 61 women who were the primary caregivers for their failing husbands, asking them to sort out which relationships were most and least helpful among friends, professionals and family. The women were largely in their 60s and 70s, though their ages ranged from 45 to 87. They were still living in their homes with their husbands, for whom they had round-the-clock oversight.
“These women have unique vulnerabilities,” Dr. Sherman said. “I know adult stepchildren who step up in every sense of the word, but for most of these women, disagreements with stepchildren was the most stressful aspect of providing care for the husband.”
“She says to me, ‘He shouldn’t be left alone anymore.’ But I’m with him 24 hours a day and I can’t keep up. I get a lot of advice but no solutions. No offers of help. No solutions. It’s just, ‘You should do this.’”
— Another participant
For many of the women, the interviews were cathartic, she said. They were giving voice to buried feelings, and were startled and relieved to know that they were not alone in their experiences.
Some women were being sued by stepchildren who felt money was being misspent. There were disputes about who should be in charge. Some adult stepchildren, perhaps long estranged from their fathers in the aftermath of the previous marriage, simply turned their backs.
In Dr. Sherman’s study, “negative networks” of such relationships were significantly associated with increased burdens on the wives, exacerbating their stress and depression.
“These were not women who co-parented these adults,” Dr. Sherman said. “They came relatively later. I was still surprised that more people were not involved out of obligation to their fathers. But they may have thought, ‘She’s there, so I don’t need to be.’”
Deborah Carr, professor of sociology department at Rutgers University, said that when parents divorce, fathers generally have far less contact with children than mothers.
“Before he remarried, he may have already had a strained or cool relationship with his children,” Dr. Carr said. “So if the caregiving wife wants help from them, they may not have had a rosy relationship with him to begin with.”
A more benign interpretation, she suggested, was mismatched life cycles. If the wife is in her mid- 60s, the adult stepchildren may be in their late 30s and early 40s. “Those are their peak child care and work years, and they have competing demands,” said Dr. Carr, an editor of a special section in the journal in which this study appeared, called “Stepfamilies in Later Life.”
“He doesn’t care about helping, but looking after his father’s money is important to him.”
— Another participant
The results were not completely stark. Fifteen women felt that their relationships with their stepfamilies were working. Some even framed the new reality with their husbands as a time of healing between their stepchildren and them, or between the father and his children.
The women often did find positive emotional and practical support elsewhere. In descending order, they cited their friends, professionals, their relatives (like siblings), then the adult stepchildren, and finally, their own children.
Armed with these insights, Dr. Sherman said, professionals could tailor interventions to meet the needs of these women. “Doctors typically ask the caregiver, ‘Do you have children nearby?’ But then they don’t ask, ‘Are these people you can rely on?’”
The researchers are aware that the study reflects one point of view, the caregiver of a loved one who is slowly being erased before her eyes.
Now, Dr. Sherman has started to study these kinds of cases from the perspective of the adult stepchildren.
Written by JAN HOFFMAN.