When the spouse goes to a nursing home

When the spouse goes to a nursing home

Even as the signs of approaching dementia became impossible to ignore, Joseph Drolet feared the prospect of his partner being transferred to a long-term care facility.

Mr. Drolet, 79, and his lover Rebecca, 71, both retired lawyers and prosecutors in Atlanta, were 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 TV remote. Diagnosed with Alzheimer’s disease in 2021.

Over time, Mr. Drolet moved Rebecca (whose surname he asked to withhold to protect her privacy) into his home. But working as her round-the-clock caregiver, where she needed help with every daily task, became exhausting and untenable. Rebecca began walking around their neighborhood and “getting dressed in the middle of the night, getting ready for trips that weren’t happening,” Mr. Drolet recalls.

Last year, when he decided 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 foster care, for any reason, represents a risky transition for a couple, one that can mean freedom from the sometimes crushing burden of caregiving, but can also be accompanied by persistent depression, anxiety and guilt, studies show. It is shown.

“It was all on me to care for someone so vulnerable – that pressure is gone,” Mr Drolet said. After Rebecca leaves, “someone else can take over the 24-hour duties.” His constant fear of what would happen to Rebecca if he died or became disabled also eased.

However, as he visited her daily, Mr. Drolet felt overwhelmed, “replaced by guilt and anxiety.” Was Rebecca cared for the way he cared for her? Although she seemed satisfied, the answer, he said, was no.

After his visits, he said he would “go home, where everywhere I look is a reminder of her absence.” He cried during our phone call.

“When one gives up day-to-day responsibility for staff, it can be a relief,” said Joseph Gogler, a gerontologist at the University of Minnesota who has led much of the research on patients’ transitions to institutional care. Dr. Gogler has found that “for caregivers, feelings of depression and burden actually decrease significantly, across multiple 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 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.

“Husbands are considered more responsible than sons or daughters,” said Richard Schultz, a retired social psychologist at the University of Pittsburgh and lead author of the study. “Institutional care is seen, in some circles, as a surrender, an abdication of responsibilities that one should not give up.”

Children and adult siblings are unlikely to share a home with a patient for decades and to feel empty after the person leaves. No matter how interested family members are, if they also have jobs and families of their own, “we don’t expect them to do much,” Dr. Schulz added. Only spouses take this vow in sickness and in health, until death do them part.

Dr. Schultz’s study found that nearly half of spousal caregivers visited their institutionalized loved ones at least daily, compared with about a quarter of non-spousal caregivers.

Family members multitask on those visits. In nursing homes, family caregivers are so willing to help with personal care such as feeding and grooming, as well as with mobility, activities and socialization, that one recent study described them as an “invisible workforce.”

“Too often, institutionalization is viewed as the end of caregiving for a family. This is not the case,” Dr. Gugler said. In fact, taking on the new tasks of supervising care, advocating on behalf of the resident, and monitoring staff means that “ “In some ways, there is an opportunity to replace one set of challenges with another.”

Moira Keller, a licensed clinical social worker, has facilitated monthly support groups for caregivers 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 has seen couples struggle with the nursing home decision and its consequences. She noted that wives in particular find the caregiver role familiar, as they usually take care of children and elderly parents before their husbands start needing help.

“It’s hard for them to acknowledge that he might need a long-term care facility,” Ms. Keller said. Even when a husband or partner moves in, wives are often gone every day. It becomes their new routine, their new purpose.

Ms. Keller sometimes encourages couples to reduce visits and reconnect with people and activities that bring them pleasure. She notes that residents with dementia will not remember whether their spouses visited the center three or six times a week, or stayed for an hour or four.

But she said couples often answer: “This is my life now.”

Marcy Sherman Lewis sure feels that way. For nearly 10 years, she has cared for her husband, Gene, 86, at their home in St. Joseph, Missouri, 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 her nursing home fees.

The only facility willing to accept Mr. Lewis, whose illness caused aggressive behavior, was a nonprofit located 27 miles away. “They are angels,” Mrs. Sherman Lewis, 68 years old.

But the distance means she only drives there every other day, although she prefers to go every day. On her visits, she tries to convince him to eat. “I take him juices. We watch dog shows together on TV,” she said. Despite her concern, she feels guilty. “His quality of life is much worse than mine.”

But her life also suffered. Ms. Sherman-Lewis rarely sleeps, has lost 30 pounds and takes two antidepressants and medication for pneumonia.

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. Having taken care of family members themselves, they found it useful to be able to provide advice to new arrivals.

After their loved ones move out of the home, most caregivers are “able to adapt to the new role,” she said. “It takes time, but they appreciate not being contacted 24 hours a day anymore.” When she sees members showing signs of clinical depression, Ms. Keller refers them to psychotherapists.

Mrs. 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 had benefited from the treatment and Ms. Keller’s support team; He also found an educational program for caregivers at the Emory Center for Brain Health 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 relieved, but he thinks she doesn’t recognize him anymore.

He said he had been mourning her for months, “afraid of visits even though he loved her.” “There is no happy tomorrow in this case.”

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