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.
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, 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 neighbourhood and “getting dressed in the middle of the night, preparing for trips that weren’t happening”, 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 memory-care residence in a nearby assisted-living facility.
Putting a spouse or partner in a long-term care facility, 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... the 24-hour duties could be taken by somebody else,” Drolet said. His constant fear of what would happen to Rebecca if he died or became disabled also abated.
Still, as he visited her daily, 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 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. Gaugler has found that “for caregivers, feelings of depression and burden actually drop quite significantly, across multiple studies”.
Invisible workforce
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 afterwards.
“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”, Schulz added. Only spouses took that vow about sickness and health, until parted by death.
Schulz’s study found that nearly half of spousal caregivers visited institutionalised loved ones at least daily, compared with only about one-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 socialisation, that one recent study called them “an invisible workforce”.
“Too often, institutionalisation is thought of as the end of family caregiving. It’s not,” 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”.
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 neighbourhood group, of which Drolet is a member.
She has seen spouses struggle with the rest home decision and its aftermath. Wives in particular find the caregiving role familiar, she noted, having usually cared for children and aging parents before their husbands began needing help.
“It’s harder for them to acknowledge that he might need a long-term care facility,” Keller said. Even once a husband or partner moves into a residence, wives “are often going every single day. It becomes their new routine, their new purpose.”
Keller sometimes encourages spouses to visit a bit less often and to re-engage with people and activities that bring them pleasure. Residents with dementia, she points out, will not recall whether their spouses visited three times a week or six, or stayed for an hour or four.
But, she said, the spouses often reply, “This is my life now.”
‘I still come home to an empty house’
Marcy Sherman-Lewis certainly feels that way. For nearly 10 years, she cared for her husband, Gene, 86, in their home in St Joseph, Missouri, as his dementia progressed.
She tried supplementing 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 his nursing home fees.
The only facility willing to accept Lewis, whose disease has caused aggressive behaviour, was a non-profit 43 kilometres away. “They are angels,” said Sherman-Lewis, 68.
But the distance means she drives there only every other day, though she would prefer to go daily. On her visits she tries to get him to eat. “I take him smoothies. We watch dog shows together on TV,” she said. Despite her attention, she feels guilty. “His quality of life is so much worse than mine.”
But her life has suffered, too. Sherman-Lewis rarely sleeps, has lost 14 kilograms and is taking two antidepressants and medication for a lung infection.
Along with support groups that are active in many communities, researchers and caregivers’ advocates are creating and testing more programmes to help educate and support family caregivers. Keller’s support group members 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 move out, most caregivers “are able to adapt to the new role”, she said. “It takes some time, but they appreciate not being on call 24 hours a day anymore.” When she sees members showing signs of clinical depression, however, Keller refers them to psychotherapists.
Sherman-Lewis has decided against seeing a therapist. “They can say, ‘Go to the gym, take classes,’ but I still come home to an empty house,” she said. She is about to join a caregiver support group, however.
Drolet said that he had benefited from therapy and from Keller’s support group; he also found a caregiver education programme at the Emory Brain Health Center useful. Last summer, he cut his daily visits to four times a week, allowing him to resume some community activities and to visit friends. He also sleeps better. (Trazodone helps.)
But nothing can make this transition easy. Rebecca has entered hospice care at her facility, and Drolet is now with her twice a day. She seems comfortable, but he thinks she no longer recognises him.
He has been mourning her for months already, “dreading visits while loving them”, he said. “There are no happy tomorrows in this situation.”
This article originally appeared in The New York Times.
Written by: Paula Span
Photographs by: Christopher Smith and Audra Melton
©2024 THE NEW YORK TIMES
