Caregiving can be difficult enough. Now add isolation
For years, Marcy Sherman-Lewis went to a beauty salon in St. Joseph, Mo ., every few weeks for a hair cut and highlights.
It had become something of an ordeal to prepare her husband, Gene Lewis, for this outing; he has 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 Marcy Sherman-Lewis, 62. Her stylist kindly trim med his hair, too.
Then last month, the salon owner took Mar cy Sherman-Lewis aside. “Mar cy, he makes my other patron saw fully uncomfortable ,” she said.
“I was dumb founded,” Sherman-Lewis said. “It’s OK for other people’s little grandchildren to be running around sometimes. What am I supposed to do, keep him in ac rate in the car?”
Like so manycaregivers, she has discovered that along with the abandoned career, the hands-on tasks, the medical scheduling, the insurance tussles and the disrupted sleep, she faces another trial: social isolation.
“It’ s hurtful ,” she said. “You need friends more thanever.”
But where are they? Betsey Br air ton ,48, cares for her mother, Sue, in rural O lean, N. Y .. The elder Br air ton ,79, suffers from spinal stenos is, arthritis and lingering damage from a stroke, so she has limited mobility .“Wehardly go anywhere, and nobody comes here ,” said her daughter. When she does leave for an hour or two, she’ s afraid to put down her cellphone.
Though a couple of friends occasionally invite her out for dinner ,“I can’ t commit to anything, in case my mom is having a bad day ,” Br air ton said. She has begun to worry that when she does spend time with others, 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, a particularly arduous responsibility.
“Care giving 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 .“People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”
Sometimes, caregivers isolate themselves. Barbara Moscow itz, senior geriatric social worker at Massachusetts General Hospital, hears clients lament that with a loved one whose dementia-related behavior can be startling, venturingout 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, why they shouldn’ t be angry or afraid,’ ”Moscow it zs aid .“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. Lonely old people, Dutch researchers have found, are more apt to develop dementia.
We’ ve long thought of these factors as dangers for the people being cared for. But they also imperil caregivers, who are often older adults as well.
Years of caring for his wife, now deceased, who had early onsetleft Les S per ling ,65, so despondent that “I’ d stay in my room in the dark and sleep all day ,” he said .“I didn’t want to come out .”
Sperling, of Lake Worth, Fla., went into therapy and took antidepressants until he felt able to function again.
We know something about how to help caregivers feel lessalone. Researchers have shown that even modest-soundingcan reduce their sense of isolation and improve their mental and physical health.
Mary Mitt el man, the Alzheimer’ s disease and Related Dementia s Family Support Program at NY U Lang one Health, has been conducting such studies for years.
With federal and state grants, the program— involving several counseling sessions, followed by support groups and phone access to counselors as needed—hasinspired others that have been adopted throughout New York and in several other states.
“The support is what leads to less stress,less depression, better health and delayed nursing-home admissions,” Mittelman said. Interestingly, her team has found that “instrumental support ,” in which others actually help with tasks, has less impact than emotional support.
“Having someone outside who ispaying attention and who cares is more important ,” she said.
Other initiatives, like Savvy Caregiver and REACH, have demonstrated similar effectiveness. Because they are offered under various names in different states, Area Agencies on Aging can help besieged caregivers find free local programs. And since gettingout of the house can be a struggle,program developers are also testing online versions.
Individuals can also play a role. It’s too easy to let care giving 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 ,” Moscow itz said. She suggests asking what would be helpful, making a list of specific tasks and parceling out assignments.