The move to a long-term care facility is often difficult but necessary for frail patients. For their partners, it can mean a new set of challenges.
After moving his partner of 33 years to a nursing home, Joseph Drolet, a retired lawyer in Atlanta, said his fear of what would happen to her if he died or became disabled has abated.
Ed Note: This article reminds me how fortunate we are to have the memory care support at Skyline, and caring for the caregivers. Also it’s fortunate that we have the nearby resources of the Memory Hub and Frye Museum.
By Paula Span in the NYT
Even as the signals of approaching dementia became impossible to ignore, Joseph Drolet dreaded the prospect of moving his partner into 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, though they retained separate homes. In 2019, she began getting lost while driving, mishandling her finances and struggling with the television remote. The diagnosis — Alzheimer’s disease — came in 2021.
Over time, Mr. Drolet moved Rebecca (whose surname he asked to withhold to protect her privacy) into his home. But serving as her round-the-clock caregiver, as she needed help with every daily task, became exhausting and untenable. Rebecca began wandering their neighborhood and “getting dressed in the middle of the night, preparing 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.
Putting a spouse or partner in a nursing home, for any reason, represents a fraught transition for a couple, one that can mean release from the sometimes crushing burden of caregiving, but can also be accompanied by lingering depression, anxiety and guilt, studies have shown.
“That everything was on my shoulders for the care of a very vulnerable person — that stress left,” Mr. Drolet said. After Rebecca left, “the 24-hour duties could be taken by somebody else.” His constant fear of what would happen to Rebecca if he died or became disabled also abated.
Still, as he visited her daily, Mr. Drolet felt his exhaustion “replaced by feelings of guilt and anxiety.” Was Rebecca being cared for as well as he had cared for her? Though she seemed content, the answer, he said, was no.
After his visits, he said that he would, “go home to the house, where everywhere I look is the reminder of her absence.” He wept during our phone call.
“When one relinquishes the day-to-day responsibility to the staff, that may come as 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 has found that “for caregivers, feelings of depression and burden actually drop quite significantly, across multiple studies.”
Yet nursing-home placement poses particular challenges for spouses compared with 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 more likely to be depressed and anxious afterward.
“Spouses are deemed 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, in some circles, is viewed as giving up, relinquishing responsibilities one shouldn’t relinquish.”
Adult children and siblings are less likely to have shared a home with the patient for decades and to experience its emptiness after the person leaves. However attentive the family members may be, if they also have jobs and families of their own, “we don’t expect them to do as much,” Dr. Schulz added. Only spouses took that vow about sickness and health, until parted by death.
Dr. Schulz’s study found that nearly half of spousal caregivers visited institutionalized loved ones at least daily, compared with only about a quarter of caregivers who weren’t spouses.
Family members undertake multiple tasks on those visits. In nursing homes, family caregivers are so apt to assist with personal care like feeding and grooming, as well as with mobility, activities and socialization, that one recent study called them “an invisible work force.”
“Too often, institutionalization is thought of as the end of family caregiving. It’s not,” Dr. Gaugler said. In fact, shouldering the new tasks of overseeing care, advocating on behalf of the resident and monitoring the staff means that “in some ways, there’s a chance of substituting one set of challenges for another.” (continued)