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 neighborhood group, of which Mr. Drolet is a member.
She has seen spouses struggle with the nursing-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,” Ms. 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.”
Ms. 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.”
Marcy Sherman-Lewis certainly feels that way. For nearly 10 years, she cared for her husband, Gene, 86, in their home in St. Joseph, Mo., 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 Mr. Lewis, whose disease has caused aggressive behavior, was a nonprofit 27 miles away. “They are angels,” Ms. 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. Ms. Sherman-Lewis rarely sleeps, has lost 30 pounds 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 programs to help educate and support family caregivers. Ms. 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, Ms. Keller refers them to psychotherapists.
Ms. 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.
Mr. Drolet said that he had benefited from therapy and from Ms. Keller’s support group; he also found a caregiver education program 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 Mr. Drolet is now with her twice a day. She seems comfortable, but he thinks she no longer recognizes him.
He has been mourning her for months already, “dreading visits while loving them,” he said. “There are no happy tomorrows in this situation.”