As most caregivers know, there are many aspects of caring for a loved one with Alzheimer’s disease that are difficult, to say the least. Challenges many caregivers face include 24/7 hands-on care, insurance hassles, medical appointments and more. Perhaps the most difficult challenge that caregivers face, however, is social isolation.
Such is the story of Marcy Sherman-Lewis, full-time caregiver for her 76-year-old husband, Gene. She was recently interviewed by the New York Times.
Sherman-Lewis went to the same beauty salon in her hometown of St. Joseph, Missouri, for many years. Now that her husband had Alzheimer’s, she couldn’t leave him alone, so she would get up early, dress Gene, feed him breakfast, then proceed to get him into her car (a very time-consuming process) before she could go to her hair appointment.
Sherman-Lewis had always taken Gene along with her when she got her hair done. Gene would sit and quietly watch television at the salon; most times, he would fall asleep while she had her hair done. The stylist would also trim Gene’s hair, “he just sat, watched TV, slept — didn’t bother anybody,” Sherman-Lewis said. This went on for some time. Then, one day, out of the blue, the salon owner asked to speak with her in private.
She took her aside, saying, “He makes my other patrons awfully uncomfortable,” Sherman-Lewis stated. “I was dumbfounded.” She added, “It’s hurtful… You need friends [now] more than ever.”
Betsey Brairton, 48, has had a similar experience with social isolation. She cares for her 79-year-old mother who suffers from impaired mobility after a stroke. “We hardly go anywhere, and nobody comes here,” Brairton said. Although she says she occasionally gets invited out to dinner, “I can’t commit to anything, in case my mom is having a bad day.” Brairton feels she doesn’t have much to contribute in conversation with others, due to what she calls her “narrowing life.”
Les Sperling, 65, also knows firsthand how unbearable the effects of long-term caregiving and social isolation can be. He cared for his wife who had early-onset Alzheimer’s disease for many years. Sperling told the New York Times, “I’d stay in my room in the dark and sleep all day.” He adds, “I didn’t want to come out.” Sperling further explains how he took antidepressant medication and got involved in long-term therapy before feeling as though he could function again after his wife’s death.
Professionals are aware of this caregiving dilemma and the impact that social isolation has on caregivers, particularly for those whose loved ones have dementia.
Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research, says, “Caregiving is done with a lot of love and affection, but there’s a lot of loss involved.” She adds, “People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”
Barbara Moscowitz, a senior geriatric social worker, says that dementia caregivers are oftentimes hesitant to go to social events or venture out into public at all.
“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, it’s just easier to stay home,” Moscowitz explained.
Researchers understand how damaging loneliness can be, with studies showing that social isolation was found to be associated with:
Fortunately, research has also shown that slight interventions (such as a phone call for support) can impact caregivers and their wellbeing.
Mary Mittelman, director of the Alzheimer’s Disease and Related Dementias Family Support Program at NYU Langone Health, has been involved in research for caregiving advocacy for many years. Mittelman and her team discovered that giving emotional support to caregivers is more helpful than helping them with caregiving tasks. Though tangible help certainly counts,
“Having someone outside who is paying attention and who cares is more important,” she said.
How has isolation impacted your caregiving experience? What type of support do you need as a caregiver? We’d like to hear your stories in the comments below.