Even as the signs of approaching 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 beloved Rebecca, 71, both retired lawyers and prosecutors in Atlanta, 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.
Over time, Mr. Drolet moved Rebecca (whose last name he asked not to be disclosed to protect her privacy) into his home. But being her 24-hour caregiver, as she needed help with every daily activity, became exhausting and unsustainable. Rebecca began wandering the neighborhood and “getting dressed in the middle of the night, preparing for trips that weren’t going to happen,” Mr. Drolet recalls.
Last year, when he determined that Rebecca no longer 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 a couple, a transition that can mean liberation from the sometimes overwhelming burden of caregiving, but can also be accompanied by persistent depression, anxiety and guilt, according to studies. shown.
“For everything to fall on my shoulders caring for a very vulnerable person – that stress stayed with me,” Mr Drolet said. After Rebecca left, “the 24-hour tasks could have been done by someone else.” His constant fear of what would happen to Rebecca if he died or became disabled also eased.
However, when he visited her every day, Mr Drolet felt his tiredness “replaced by feelings of guilt and anxiety”. About her Did they take care of Rebecca the way he had taken care of her? Although she seemed pleased, the answer, she said, was no.
After his visits, he said he would “return home, where everywhere I look there is the memory of his absence.” He cried during our phone call.
“When you leave the day-to-day responsibility to the staff, that can be a relief,” said Joseph Gaugler, a gerontologist at the University of Minnesota who has conducted much of the research on patients’ transition to institutional care. Dr. Gaugler has found that “for healthcare workers, feelings of depression and weight actually decrease quite significantly, across numerous studies.”
However, placement in a nursing home presents spouses with particular challenges compared to other family caregivers. An early and often cited 2004 study of long-term care for patients with Alzheimer’s disease found that spouses were more often depressed before placement than other family members and were more likely to be depressed and anxious afterward.
“Spouses are seen as 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, in some quarters, is seen as a waiver, a renunciation of responsibilities that should not be given up.”
Adult children and siblings are less likely to share a home with the patient for decades and to experience emptiness after the person leaves. As careful as family members may be, if they also have jobs and families of their own, “we don’t expect them to do the same,” Dr. Schulz added. Only spouses made that vow on sickness and health, until death separated them.
Dr. Schulz’s study found that nearly half of spouse caregivers visited their institutionalized loved ones at least daily, compared to only about a quarter of caregivers who were not spouses.
Family members undertake multiple tasks during those visits. In nursing homes, family caregivers are so likely to assist with personal care such as feeding and grooming, as well as mobility, activities and socialization, that a recent study called them “an invisible workforce.” .
“Too often we think of institutionalization as the end of family care. It’s not,” Dr. Gaugler said. Indeed, taking on the new tasks of supervising care, advocating on behalf of the resident and monitoring staff means that “in a sense, there is the possibility of replacing one set of challenges with another”.
Moira Keller, a licensed clinical social worker, has facilitated monthly support groups for healthcare workers 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 saw spouses struggle with the nursing home decision and its consequences. Wives, in particular, find the role of caregiver familiar, she noted, as they typically cared for children and elderly parents before their husbands began needing help.
“It’s harder for them to recognize that they may need a long-term care facility,” Ms. Keller said. Even when a husband or partner moves into a residence, wives “often go there every single day. It becomes their new routine, their new purpose.
Ms. Keller sometimes encourages spouses to visit a little less often and reengage with the people and activities that give them pleasure. Residents with dementia, she points out, won’t remember whether their spouses visited them three or six times a week, or stayed for an hour or four.
But, he said, spouses often respond, “This is my life now.”
Marcy Sherman-Lewis certainly thinks so. For nearly 10 years she cared for her husband, Gene, 86, in their 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 her nursing home expenses.
The only facility willing to accept Mr. Lewis, whose illness caused aggressive behavior, was a nonprofit 27 miles away. “They are angels,” Ms. Sherman-Lewis, 68.
But the distance means he only goes every other day, even though he would prefer to go every day. During his visits she tries to convince him to eat. “I bring him some smoothies. We watch dog shows on TV together,” she said. Despite his attention, she feels guilty. “His quality of life is much worse than mine.”
But his life also suffered. Ms. Sherman-Lewis rarely sleeps, has lost 30 pounds and is taking two antidepressants and medication for a lung infection.
Along with active support groups in many communities, researchers and caregiver advocates are creating and testing more programs to help educate and support family caregivers. Members of Ms. Keller’s support group often develop strong bonds, she said. Because they have personally cared for family members, they find it meaningful to be able to advise new arrivals.
After their loved ones leave, most caregivers “are able to adapt to the new role,” he said. “It takes a little time, but they appreciate not being on call 24 hours a day anymore.” However, when she sees that the members are showing signs of clinical depression, Mrs. 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 caregiver support group.
Mr. Drolet said he benefited from Ms. Keller’s therapy and support group; He also found a training program for healthcare professionals 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 entered hospice care at her facility and Mr. Drolet is now with her twice a day. He seems comfortable with her, but he thinks she doesn’t recognize him anymore.
He has been mourning her for months already, “dreading the visits even though he loves them,” he said. “There are no happy tomorrows in this situation.”