Even though the signs of approaching dementia were impossible to ignore, Joseph Drolet dreaded the prospect of moving his partner into a long-term care facility.
Mr. Drolet, 79, and his sweetheart Rebecca, 71, retired attorneys and prosecutors in Atlanta, had been a couple for 33 years, although they kept separate homes. In 2019, she started getting lost while driving, managing her finances, and struggling with the TV remote. The diagnosis – Alzheimer’s disease – came in 2021.
Over time, Mr. Drolet moved Rebecca (whose last name he asked to be withheld to protect her privacy) into his home. But serving as her round-the-clock caregiver, as she needed help with every day job, became exhausting and unbearable. Rebecca began wandering around their neighborhood and “getting dressed in the middle of the night, preparing for trips that weren’t happening,” Mr. Drolet recalled.
Last year, when she found that Rebecca no longer knew where she was, she felt it was time to move her to a nearby memory care home.
Placing a spouse or partner in a nursing home, for whatever reason, represents a painful transition for a couple, which can mean release from the sometimes overwhelming burden of caregiving, but can also be accompanied by lingering depression, anxiety and guilt, according to with studies. is depicted.
“That it was all on my shoulders to look after a very vulnerable person — that stress went away,” 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 she died or became disabled also subsided.
However, as he visited her every day, Mr Drolet felt his exhaustion “replaced by feelings of guilt and anxiety”. Was Rebecca cared for as he had cared for her? Although she seemed satisfied, the answer, she said, was no.
After his visits, he said he would go “home to home, where everywhere I look is the reminder of her absence.” She cried on our phone call.
“When someone relinquishes day-to-day responsibility to staff, that can be a relief,” said Joseph Gaugler, a gerontologist at the University of Minnesota who has led much of the research on the transition of patients to institutional care. Dr. Gaugler found that “for caregivers, feelings of depression and burden are actually reduced quite significantly in many studies.”
However, nursing home placement poses special challenges for spouses compared to other family caregivers. An early and frequently cited 2004 study of long-term care for Alzheimer’s patients found that spouses were more likely to be depressed before placement than other family members and more likely to be depressed and anxious afterward.
“Husbands 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 circles, is seen as an abdication, an abdication of responsibilities that should not be abdicated.”
Adult children and siblings are less likely to share a home with the patient for decades and to experience its emptiness after the person’s departure. As careful as family members are, if they also have jobs and families of their own, “we don’t expect them to do as much,” Dr. Schultz added. Only husbands and wives took the oath in sickness and in health, until death separated them.
The study of Dr. Schulz found that nearly half of spouse caregivers visited their institutionalized loved ones at least daily, compared to only about a quarter of nonspousal caregivers.
Family members multitask on these visits. In nursing homes, family caregivers are so capable of helping with personal care, such as feeding and grooming, as well as mobility, activities and socialization, that a recent study called them the “invisible workforce.”
“Too often, institutionalization is seen as the end of family care. It’s not,” Dr. Gaugler said. In fact, taking on the new roles of overseeing care, advocating for the resident and monitoring staff means that “in some ways, there is a chance that one set of challenges will be replaced by another.”
Moira Keller, a licensed clinical social worker, facilitated monthly support groups for caregivers for 23 years at Piedmont Healthcare in Atlanta. Now retired, he still volunteers to lead a neighborhood group, of which Mr Drolet is a member.
She has seen spouses struggle with the nursing home decision and its consequences. Spouses in particular find the caregiving role familiar, she noted, as they typically cared for children and elderly parents before their spouses began to need help.
“It’s harder for them to recognize that they might need a long-term care facility,” Ms. Keller said. Even when a spouse or partner moves into a residence, spouses “often go every day. It becomes their new routine, their new purpose.”
Ms. Keller sometimes encourages spouses to visit less often and reengage with people and activities that bring them pleasure. Residents with dementia, he points out, won’t remember whether their spouses visited three times a week or six times or stayed for one or four hours.
But, she said, husbands often respond, “This is my life now.”
Marcy Sherman-Lewis certainly feels that way. For nearly 10 years, she cared for her husband, Gene, 86, at their home in St. Joseph, Mo., as his 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 take in Mr. Lewis, whose illness caused aggressive behavior, was a non-profit organization 27 miles away. “They are angels,” Ms Sherman-Lewis, 68.
But the distance means he only drives there every other day, although he would prefer to go every day. On her visits she tries to get him to eat. “I get him smoothies. We watch dog shows on TV together,” she said. Despite her attention, she feels guilty. “His quality of life is much worse than mine.”
But her life has also suffered. Ms Sherman-Lewis rarely sleeps, has lost 30kg and is on two anti-depressants and medication for a lung infection.
Along with support groups active 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. Having taken care of family members themselves, they find it meaningful to be able to advise newcomers.
After their loved ones are gone, most caregivers “are able to adjust to the new role,” she said. “It takes some time, but they appreciate that they are no longer on call 24 hours a day.” But when she sees members showing signs of clinical depression, Ms. 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,” he said. However, she is about to join a carer support group.
Mr Drolet said he had benefited from the treatment and from Ms Keller’s support group. 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 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 been grieving her for months, “taking care of the visits while loving them,” he said. “There are no happy tomorrows in this situation.”