by Even as signs of impending dementia became impossible to ignore, Joseph Drolet dreaded the prospect of moving his partner to a long-term care facility.
Drolet, 79, and his beloved Rebecca, 71, both retired Atlanta attorneys and prosecutors, had been a couple for 33 years, although they maintained separate homes. In 2019, he began getting lost while driving, mismanaging his finances, and having problems with the television remote control. The diagnosis (Alzheimer’s disease) came in 2021.
Eventually, Drolet moved Rebecca (whose last name he asked not to be revealed to protect her privacy) into his home. But serving as her 24-hour caregiver, as she needed help with every daily task, became exhausting and unsustainable. Rebecca began wandering around her neighborhood and “getting dressed in the middle of the night, preparing for trips that wouldn’t happen,” Drolet recalled.
Last year, when he determined that Rebecca no longer really knew where she was, he felt it was time to move her to a nearby memory care residence.
Placing a spouse or partner in a nursing home, for any reason, represents a difficult transition for any couple, a transition that can mean liberation from the sometimes overwhelming burden of caregiving, but which can also be accompanied by depression, anxiety, and persistent guilt, studies have shown. shown.
“That everything fell on my shoulders to care for a very vulnerable person, that stress disappeared,” Drolet said. After Rebecca left, “the 24-hour tasks could be handled by someone else.” His constant fear of what would happen to Rebecca if she died or became disabled also diminished.
Still, as he visited her daily, Drolet felt his tiredness being “replaced by feelings of guilt and anxiety.” Were they taking care of Rebecca as well as he had taken care of her? Although she seemed pleased, the answer, he said, was no.
After his visits, he said he would “go back home, where everywhere you look is the reminder of his absence.” She cried during our phone call.
“When you hand over day-to-day responsibility to staff, it can be a relief,” said Joseph Gaugler, a gerontologist at the University of Minnesota who has led much of the research on transitioning patients to institutional care. Dr. Gaugler has found that “for caregivers, feelings of depression and burden actually drop quite significantlyat the other side of multiple studies.”
However, nursing home placement poses particular challenges for spouses compared to other family caregivers. One of the first and most cited 2004 long-term care study. for patients with Alzheimer’s disease found that spouses were more often depressed before placement than other family members and more likely to be depressed and anxious afterward.
“Spouses are considered more responsible than sons or daughters,” said Richard Schulz, a retired social psychologist at the University of Pittsburgh and lead author of the study. “In some circles, institutional care is seen as a renunciation, an abdication of responsibilities one should not abandon.”
Adult children and siblings are less likely to have shared a home with the patient for decades and experience its emptiness after the person leaves. No matter how attentive family members are, if they also have jobs and families of their own, “we don’t expect them to do as much,” Dr. Schulz added. Only spouses made that vow in sickness and in health, until death separated them.
Dr. Schulz’s study found that nearly half of spousal caregivers visited their institutionalized loved ones at least daily, compared to only about a quarter of non-spousal caregivers.
Family members perform multiple tasks during these visits. In nursing homes, family caregivers are just as apt to help with personal care such as feeding and grooming, as well as mobility, activities, and socialization, that a recent study He called them “an invisible workforce.”
“Too often, institutionalization is thought to be the end of family care. It’s not,” Dr. Gaugler said. In fact, taking on the new tasks of overseeing care, advocating for residents, and monitoring staff means that “in some ways, there is the possibility of substituting one set of challenges for another.”
Moira Keller, a licensed clinical social worker, facilitated monthly support groups for caregivers for 23 years at Piedmont Healthcare in Atlanta. Now retired, she still volunteers to lead a neighborhood group, of which Mr. Drolet is a member.
She has seen spouses struggle with the decision to go to a nursing home and its consequences. Wives, in particular, find the role of caregiver familiar, she noted, as they had typically cared for children and elderly parents before their husbands began needing help.
“It’s harder for them to recognize that you might need a long-term care facility,” Ms. Keller said. Even once the husband or partner moves into a residence, wives “often go every day. It becomes your new routine, your new purpose.”
Ms. Keller sometimes encourages spouses to visit a little less frequently and to reengage with people and activities that bring them pleasure. Residents with dementia, she notes, won’t remember whether their spouses visited them three or six times a week, or whether they stayed one or four hours.
But, he said, spouses often respond: “This is my life now.”
Marcy Sherman-Lewis certainly feels that way. For nearly 10 years, she cared for her 86-year-old husband, Gene, at her home in St. Joseph, Missouri, as her dementia progressed.
She tried to supplement her efforts by hiring home care aides, but found them too expensive. An attorney helped her husband qualify for Medicaid, which now pays most of the nursing home fees.
The only facility willing to accept Mr. Lewis, whose illness has caused aggressive behavior, was a nonprofit organization 27 miles away. “They are angels,” said Sherman-Lewis, 68.
But the distance means he drives there only every other day, although he would prefer to go daily. During her visits he tries to spend time with her husband and get her to eat. “I bring him smoothies. We watch dog shows on TV together,” she said. Despite her attention, she feels guilty. “Her quality of life is much worse than mine.”
But his life has also been affected. Sherman-Lewis rarely sleeps, has lost 30 pounds and is taking two antidepressants and medication for a lung infection.
With Support groups who are active in many communities, researchers and caregiver advocates They are creating and testing more programs to help educate and support family caregivers. Members of Keller’s support group often develop strong bonds, she said. Having cared for family members themselves, they find it meaningful to be able to mentor newcomers.
After their loved ones move, most caregivers “can adjust to the new role,” she said. “It takes some time, but they appreciate 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 may 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.
Drolet said he had benefited from Ms. Keller’s therapy and support group; She also found a caregiver education program at the Emory Brain Health Center helpful. Last summer, she reduced her daily visits to four times a week, allowing her to resume some community activities and visit friends. He also sleeps better. (Trazodone helps).
But nothing can facilitate this transition. Rebecca entered hospice care at her facility and Mr. Drolet is now with her twice a day. She seems comfortable, but he thinks she doesn’t recognize him anymore.
He has already been mourning her for months, “dreading the visitors but loving them,” he said. “There are no happy mornings in this situation.”
