Even though 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 beloved Rebecca, 71, both retired Atlanta lawyers and prosecutors, had been a couple for 33 years, although they maintained separate homes. In 2019, she began getting lost while driving, mismanaging her finances, and having difficulty using the television remote. The diagnosis – Alzheimer’s disease – fell 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 serving as her 24-hour caregiver, as she needed help with every daily task, became exhausting and unbearable. Rebecca began wandering their neighborhood and “getting dressed in the middle of the night, getting ready for trips that weren’t happening,” Mr. 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 a couple, one that can mean freedom from the sometimes overwhelming burden of care, but which can also come with persistent depression, anxiety and guilt, studies show. watch.
“That everything was on my shoulders to take care of a very vulnerable person – that stress is gone,” Mr. Drolet said. After Rebecca leaves, “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 depressed him.
Yet while he visited her daily, Mr. Drolet felt his exhaustion “replaced by feelings of guilt and anxiety.” 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 declared that he would “return home, to the house where everywhere I look is the reminder of his absence.” He cried during our phone call.
“When you relinquish 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 patients’ transition to institutional care. Dr. Gaugler found that “for caregivers, feelings of depression and burden decrease quite significantlythrough several studies.”
However, nursing home placement poses particular challenges for spouses compared to other family caregivers. A first and often cited 2004 Long-Term Care Study for patients with Alzheimer’s disease, spouses were more often depressed before placement than other family members and more likely to be depressed and anxious afterward.
“Spouses are seen as more responsible than sons or daughters,” said Richard Schulz, a retired University of Pittsburgh social psychologist and lead author of the study. “In some circles, institutional care is seen as an abandonment of responsibilities that should not be given up. »
Adult children and siblings are less likely to have shared housing with the patient for decades and feel the void after the person leaves. No matter how attentive family members are, if they also have jobs and families, “we don’t expect them to do the same,” Dr. Schulz added. Only spouses made this vow regarding sickness and health, until they were separated by death.
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-spouse caregivers.
Family members undertake multiple tasks during these visits. In care homes, family caregivers are so likely to contribute to personal care such as feeding and toileting, as well as mobility, activities and socialization, that a recent study called them an “invisible labor force”.
“Too often, institutionalization is seen as the end of family care. This is not the case,” Dr. Gaugler said. In fact, taking on the new tasks of supervising care, advocating for residents’ rights, and monitoring staff means that “in a way, it is possible to substitute one set of challenges for another.”
Moira Keller, licensed clinical social worker, facilitated monthly support groups for caregivers for 23 years at Piedmont Healthcare in Atlanta. Now retired, she still voluntarily leads a neighborhood group of which Mr. Drolet is a member.
She has seen spouses struggle with the decision to create a nursing home and its consequences. Wives in particular have found the role of family caregivers, she noted, typically having taken care of children and aging parents before their husbands began needing help.
“It’s hard for them to recognize that he might need a long-term care facility,” Ms. Keller said. Even once a husband or partner moves into a residence, wives often “go there every day.” This becomes their new routine, their new goal.
Ms. Keller sometimes encourages spouses to visit a little less often and to reconnect with people and activities that bring them pleasure. Residents with dementia, she points out, won’t remember if their spouse visited them three or six times a week, or stayed for an hour or four.
But, she says, spouses often respond: “It’s my life now.” »
Marcy Sherman-Lewis certainly feels that way. For nearly 10 years, she cared for her husband, Gene, 86, in their St. Joseph, Mo., home as his dementia progressed.
She tried to supplement her efforts by hiring home health aides, but found them too expensive. A lawyer 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 caused aggressive behavior, was a nonprofit organization 27 miles away. “They are angels,” Ms. Sherman-Lewis, 68.
But the distance means she only goes there every other day, even though she would prefer to go daily. During her visits, she tries to get him to eat. “I get him smoothies. We watch dog shows together on TV,” she said. Despite all her 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 chest infection.
With support groups who are active in many communities, researchers and caregiver advocates create and test more programs to help educate and support family caregivers. Members of Ms. Keller’s support group often develop strong bonds, she said. Having taken care of their own family members, they find it useful to be able to advise new arrivals.
After their loved ones leave, most caregivers “are able to adjust to their new role,” she said. “It takes time, but they appreciate not being on call 24 hours a day.” However, when she sees members showing signs of clinical depression, Keller refers them to psychotherapists.
Ms. Sherman-Lewis 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 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 squeeze in some community activities and visit friends. He also sleeps better. (Trazodone helps.)
But nothing can make this transition easier. Rebecca entered palliative care at her facility and Mr. Drolet is now with her twice a day. She seems at ease, but he thinks she doesn’t recognize him anymore.
He has been mourning her for months already, “dreading the visits while loving them,” he says. “There are no happy tomorrows in this situation.”