When a spouse goes to the nursing home

Even when the signs of impending dementia became impossible to ignore, Joseph Drolet dreaded the prospect of moving his partner to a long-term care facility.

Mr. Drolet, 79, and his lover Rebecca, 71, both retired attorneys and prosecutors in Atlanta, had been a couple for 33 years, although they had a separate home. In 2019, she started getting lost while driving, mishandling her finances and struggling with the television remote. The diagnosis – Alzheimer's disease – came in 2021.

In time, Mr. Drolet moved Rebecca (whose last name he wanted to withhold to protect her privacy) into his house. But it became exhausting and untenable to serve as a caregiver 24 hours a day, as she required assistance with every daily task. Rebecca began wandering around the neighborhood, “getting dressed in the middle of the night, preparing for outings that didn't happen,” Mr. Drolet recalled.

When he noticed last year that Rebecca no longer really knew where she was, he decided it was time to move her to a nearby memory care center.

Placing a spouse or partner in a nursing home, for whatever reason, represents a fraught transition for any couple, a transition that can mean freedom from the sometimes crushing burden of care, but which also can be accompanied by persistent depression, anxiety and feelings of guilt. shown.

“Having everything on my shoulders to care for a very vulnerable person – that stress disappeared,” Mr Drolet said. After Rebecca left, “the 24-hour duties could be taken over by someone else.” His constant fear of what would happen to Rebecca if he died or became disabled also diminished.

Still, as he visited her daily, Mr. Drolet felt his exhaustion “replaced by feelings of guilt and fear.” Was Rebecca taken care of as well as he had taken care of her? Although she seemed satisfied, the answer, he said, was no.

After his visits, he said he would “go home, to the house, where everywhere I look there is the memory of her absence.” He cried during our phone conversation.

“When you hand over day-to-day responsibility to staff, it can be a relief,” says Joseph Gaugler, a gerontologist at the University of Minnesota who has led much of the research on patients' transitions to institutional care. Dr. Gaugler has found that “for caregivers, feelings of depression and burden actually occur drop quite significantlyabout multiple studies.”

Yet nursing home placement poses special challenges for spouses compared to other caregivers. An early and often quoted one Long-term care survey from 2004 for patients with Alzheimer's disease, spouses were found to be more likely to be depressed than other family members before placement and to be more likely to be depressed and anxious afterwards.

“Spouses are expected to be more responsible than sons or daughters,” said Richard Schulz, a retired social psychologist at the University of Pittsburgh and lead author of the study. “Institutional care is seen in some circles as giving up responsibilities that you should not relinquish.”

Adult children and siblings are less likely to share a home with the patient for decades and experience its emptiness after the person leaves. No matter how attentive the family members are, if they also have a job and a family of their own, “we don't expect them to do that much,” added Dr. Schulz added. Only spouses took that vow of sickness and health, until they were separated by death.

From the research of Dr. Schulz found that nearly half of spouse caregivers visited their loved ones at least daily, compared to only about a quarter of caregivers who were not spouses.

Family members perform multiple tasks during those visits. In nursing homes, informal caregivers are so inclined to help with personal care such as nutrition and care, but also with mobility, activities and socialization, that one recent study called them “an invisible workforce.”

“Too often, institutionalized care is seen as the end of informal care. It's not,” said Dr. Gaugler. In fact, taking on the new roles of overseeing care, advocating on behalf of the resident, and monitoring staff means that “in some ways there is an opportunity to replace one set of challenges with another.”

Moira Keller, a licensed clinical social worker, facilitated monthly support groups for caregivers at Piedmont Healthcare in Atlanta for 23 years. Now retired, she still volunteers to lead a community group, of which Mr. Drolet is a member.

She has seen husbands struggle with the nursing home decision and its aftermath. The caring role is especially familiar to women, she noted, because they typically cared for children and elderly parents before their husbands began needing help.

“It's harder for them to recognize that he may need a long-term care facility,” Ms. Keller said. Even once a spouse or partner moves into a home, women “often move every day.” It becomes their new routine, their new goal.”

Mrs. Keller sometimes encourages spouses to cut back on their visits and reengage with people and activities that bring them joy. Residents with dementia, she points out, will not remember whether their spouses visited three or six times a week, or stayed for about four hours.

But, she said, husbands often respond, “This is my life now.”

Marcy Sherman-Lewis certainly thinks so. For nearly a decade, she cared for her husband, Gene, 86, at their home in St. Joseph, Missouri, as his dementia progressed.

She tried to supplement her efforts by hiring home health aides, but found them too expensive. An attorney helped her husband qualify for Medicaid, which now pays most of his nursing home costs.

The only facility willing to accept Mr. Lewis, whose illness has led to aggressive behavior, was a nonprofit organization 27 miles away. “They are angels,” Mrs. Sherman-Lewis, 68.

But because of the distance, she only drives there every other day, although she would prefer to go every day. During her visits, she tries to spend time with her husband and get him to eat. 'I give him smoothies. We watch dog shows on TV together,” she said. Despite her attention, she feels guilty. “His quality of life is so much worse than mine.”

But her life also suffered. Ms. Sherman-Lewis rarely sleeps, has lost 30 pounds and is taking two antidepressants and medication for a lung infection.

Together with support groups who are active in many communities, researchers and advocates of health care providers create and test more programs to help educate and support caregivers. Members of Ms. Keller's support group often develop strong bonds, she said. Because they have taken care of family members themselves, they find it useful to be able to advise newcomers.

After their loved ones move, most caregivers can “adjust to the new role,” she said. “It takes some time, but they like not being available 24 hours a day anymore.” However, when she sees members showing signs of clinical depression, Ms. Keller refers them to psychotherapists.

Ms. Sherman-Lewis has decided not to see a therapist. “They can say, 'Go to the gym, take classes,' but I still come home to an empty house,” she said. However, she is about to join a support group for caregivers.

Mr. Drolet said he had benefited from therapy and Ms. Keller's support group; he also found a caregiver training program at the Emory Brain Health Center helpful. Last summer he reduced his daily visits to four times a week, allowing him to resume some community activities and visit friends. He also sleeps better. (Trazodone helps.)

But nothing can make this transition easy. Rebecca has been admitted to hospice care at her facility and Mr. Drolet is now with her twice a day. She seems at ease, but he thinks she no longer recognizes him.

He has been mourning her for months, “he dreads visits even though he loves them,” he said. “There is no happy tomorrow in this situation.”