For years, Marcy Sherman-Lewis went to a beauty salon in St. Joseph, Mo., every few weeks for a haircut and highlights.
It had become something of an ordeal to prepare her husband, Gene Lewis, for this outing; he has Alzheimer’s disease, at 79, and helping him shower and dress, insert hearing aids and climb into the car was a very slow process.
But she could no longer leave him at home alone. And once at the salon, “he just sat, watched TV, slept — didn’t bother anybody,” said Sherman-Lewis, 62. Her stylist kindly trimmed his hair, too.
Then last month, the salon owner took Sherman-Lewis aside. “Marcy, he makes my other patrons awfully uncomfortable,” she said.
“I was dumbfounded,” she said. “It’s OK for other people’s little grandchildren to be running around sometimes.”
Like so many caregivers, she has discovered that along with the abandoned career, the hands-on tasks, the scheduling, the insurance tussles and the disrupted sleep, she faces another trial: social isolation.
“It’s hurtful,” she said. “You need friends more than ever.”
Betsey Brairton, 48, cares for her mother, Sue, in rural Olean, N.Y. The older Brairton, 79, suffers from spinal stenosis, arthritis and lingering damage from a stroke, so she has limited mobility. “We hardly go anywhere, and nobody comes here,” said her daughter, who has begun to worry that her narrowing life leaves her with nothing interesting to say.
Those who work with caregivers know this phenomenon well, especially when the cared-for person has dementia, an arduous responsibility. “Caregiving is done with a lot of love and affection, but there’s a lot of loss involved,” said Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research. “It’s a lonely business.”
Sometimes, caregivers isolate themselves. Barbara Moscowitz, senior geriatric social worker at Massachusetts General Hospital, hears clients lament that with a loved one whose dementia-related behavior can be startling, venturing out in public creates more apprehension than pleasure.
“They say, ‘I’m exhausted trying to explain to people why she’s doing what she’s doing,’ ” Moscowitz said. “It’s just easier to stay home.”
Yet a habit of avoiding others — or watching them avoid you — collides with a growing body of research showing how damaging isolation and loneliness can be. They are associated with a host of ills, including heart disease and stroke. Among older people, isolation is linked to depression, even higher mortality.
Researchers have shown that even modest interventions can reduce their sense of isolation and improve their mental and physical health. “The support is what leads to less stress, less depression, better health and delayed nursing-home admissions,” said Mary Mittelman, director of the Alzheimer’s Disease and Related Dementias Family Support Program at NYU Langone Health.
Individuals can also play a role. It’s too easy to let caregiving friends slip off our radar with a general call-if-you-need-anything. “Don’t put the pressure on the caregiver to tell you what to do,” Moscowitz said.
“Don’t invite me for lunch — you know I can’t go,” Sherman-Lewis said. “Just bring a pizza and a bottle of wine and come by.”