For many, taking care of a sick or dying spouse is more emotionally challenging than caring for a parent. In the following article, we see an example of that in the story the author shares. Leaving aside the physical strain of being a caregiver, the emotional challenges of caring for the person who one had always seen as the rock of the couple becomes more complex. The caregiver’s loneliness increases because they have lost their confidant, their emotional sounding board. I am thinking of one couple I have seen were the wife’s struggles include that her husband, who is now dying, was always there as a support for her when she was caregiver, and now he isn’t when she needs him again because this time he is the one needing care.
Married to the JobBy PAULA SPAN
Rachel Hadas never had to care for elderly parents; both of hers died quickly, years ago. But in her mental picture of parental caregiving, she envisions the occasional break from responsibility and, especially, someone to commiserate with.
“With a parent, you’re living in your own household,” said Ms. Hadas, 63. After a stressful day on the front, “you can go home and put your feet up and say to your spouse, ‘My mother is being impossible.’”
When the person you’re caring for, year after year, is your spouse, it’s different.
Ms. Hadas and George Edwards married in 1978. A composer, he hadn’t even turned 60 when he began to experience significant memory loss. He had to leave his position as professor of music at Columbia University in 2004, was given a diagnosis of dementia in 2005, and relied on aides coming to the couple’s home on the Upper West Side of Manhattan by 2006. Their son lived on the West Coast; their siblings were also distant. Ms. Hadas, an award-winning poet and an English professor, shouldered his care, intent on keeping him at home.
For several years, however, “he never smiled. He never talked,” Ms. Hadas told me, sadly. She grew intensely lonely. “You feel you’re not married anymore.”
When married people begin to suffer the ills and disabilities of aging, their spouses represent the first line of defense; children may not play a hands-on role until later, sometimes much later. Spouses made those promises about sickness and health, and most take them very seriously.
Yet they may face a more difficult task, in many ways, than adult children. Ms. Hadas is only in her early 60s, and her husband was just 68 when he died last fall. But most spouses are much older when they undertake the caregiving role, and many struggle with their own frailties and vulnerabilities.
Because they’re live-in caregivers, almost by definition, they also suffer greater strain and risks to their own health than caregivers who can retreat to their own residences. A study in the journal Stroke found an increased risk of stroke for those providing in-home care for disabled spouses, for instance; the risk was particularly high for men, especially African-Americans.
Perhaps that’s related to the way roles shift, particularly in more traditional marriages. “If the wife is impaired, maybe the husband doesn’t know how to cook a meal,” said Barbara Moscowitz, chief geriatric social worker at Massachusetts General Hospital in Boston. “We see a lot of wives who never handled the banking. The role change can be very dramatic, and that’s distressing and confusing.”
Moreover, spouses are often more reluctant to ask for or accept assistance. They’re protective of each other and the life they’ve built together, fearful that admitting to difficulties will mean an unwelcome move or intrusions by children or professionals.
One participant in a spousal support group that Ms. Moscowitz leads has resisted every suggestion that could lighten his load, though he can afford to hire an aide and has children asking how they can help. He seems determined to care for his ailing wife alone.
“I think he worries about ‘blowing their cover,’ ” Ms. Moscowitz says. “And that would change their lives forever.”
“Spouses have that deeper commitment to trying to do everything,” said Steven Zarit, a Penn State gerontologist. “Husbands and wives have trouble bringing someone into the house, trouble using any kind of paid services.”
Some of these differences may be generational, he speculated. Those who grew up during the Depression are loath to spend money for care, even when they have it. But they may also have difficulty outsourcing what they see as their jobs.
Dr. Zarit’s research has shown, for example, that wives are more reluctant than daughters and daughters-in-law to use adult day programs to help care for people with dementia, even though such programs have been shown to reduce caregivers’ stress and depression. Wives not only delay using adult day care, but they’re also more likely to withdraw their husbands from the programs.
“Daughters have used day care for their kids, so they’ll use day care for their parents,” Dr. Zarit said. “They see how that can help them manage the situation.” For wives, by contrast, “sending a husband away feels wrong,” even for a few hours. “They can’t tolerate it.”
After all, they are losing their primary relationships; every aspect of their lives feels the consequences. “What about friends? What about parenting? What about sexual intimacy? All the things that go along with being part of a pair?” Ms. Hadas said. (She published a book about her experiences, “Strange Relation: A Memoir of Dementia, Caregiving and Poetry,” last year; I’ll excerpt a bit later this week.)
Support groups have been shown to help caregivers cope, and Ms. Hadas tried out several. The one that helped most, she found, was organized by the Well Spouse Association, which sponsors groups in 21 states. “It was a godsend,” she said. Although groups that include adult children and other relatives are useful, “nobody but another spouse is going to understand what you’re going through.”
Because the Well Spouse Association can’t organize enough face-to-face groups to meet the demand, it also offers an online forum and will soon introduce a telephone support group.
Ms. Hadas continued to hire aides for her husband (luckily, they’d bought long-term care insurance two years before his diagnosis), but eventually had to place him in a series of facilities, starting in 2008. “It’s hard not to feel like Lady Macbeth,” she said. “It’s a terribly difficult position to be in.” Having new friends who had faced the same issues (many of the old ones had fallen away) made all the difference and helped her endure.
Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”