Avoid becoming isolated as a caregiver
February 1, 2020
Family caregivers of loved ones with disabilities and chronic illnesses experience life transformations that are often unexpected. Their altered lifestyles, frequently resulting in dramatic changes to their personal identities, can last for many years, depending on their circumstances.
Being uprooted from their former selves over long periods of time can bring isolation and loneliness. And that can have negative physical and mental ramifications for both the caregiver and their loved one. How caregivers deal with their newly transformed lives, and how much assistance they may or may not get, can make a huge difference in their well-being.
Moving mom in to take care of her
Lori Bagley is a 57-year-old, sole family caregiver of her 86-year-old mother who has vascular dementia. Bagley moved her mother in with her about 10 years ago after she started to notice her mom’s forgetfulness. Early on, when she took her mom to her doctor, she was told to give her mom vitamin B and to have her play memory games.
“It went on for a long time where I knew something was going on, but I could not get any kind of official diagnosis,” Bagley says, adding that her mother was resistant to switching doctors. But then her mom’s doctor retired, and Bagley took her to a geriatrician. “On the first visit, he said my mom has dementia. It was obvious to him,” she says.
Slowly, her mom’s dementia symptoms got worse. “For the last two years, she has been unable to fix her food. I pick out her clothes for her every day, I shop for her. I do everything for her,” Bagley explains.
“I have to go straight home after work,” Bagley adds. “I have maybe a fifteen-minute window in which I have to get home after work before she [the caregiver] has to leave. There is no stopping anywhere, no errands to run. It is very isolating, very lonely. You see people living normal lives — people that you were able to interact with, and who still want to interact with you, but you can’t.”
Respite care is one solution
Help is available to family caregivers through a variety of state and federal programs, one of which is respite care. In this scenario, caregivers are awarded vouchers, typically of $500 to $1,000, that pay for caregiving services under the stipulation that caregivers must use free time gained to do things that are beneficial to their self-interests.
For example, the Access to Respite Care and Help (ARCH) National Respite Network and Resource Center is a federally funded program whose mission is to “assist and promote the development of quality respite and crisis care programs in the United States; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.” Visit https://archrespite.org.
Jill Kagan, ARCH program director, says when family caregivers have little to no support “things kick in — the social isolation, the health effects, the stress levels, the inability to have relationships with former friends or even their family members.”
Bagley was awarded $1,000 last spring for additional caregiver services through a government-sponsored program offered by Lifespan Respite in her state of Washington. It gave her 37 hours of time devoted exclusively to herself that she had to use up over a period of four months.
“I savored every bit of it,” Bagley explains. She went shopping at Costco, visited with friends, saw a movie, stopped by the local farmers market, cleaned her garage, went out for dinner a few times, took her dogs for a walk in the park and sat by the river. “I used it to get at least a little taste of my normal life. I missed all those kinds of things,” she says.
Reaching out for help
Participating in caregiver support groups can also be beneficial. C. Grace Whiting, president and CEO of the National Alliance for Caregiving (NAC), says that “it helps to reach out to disease-specific organizations, like the Alzheimer’s Association, the Alzheimer’s Foundation of America and the American Cancer Society — groups where you can meet other people who are going through what you are going through.”
The NAC also publishes a library of important literature online geared specifically for caregivers, such as guidebooks and resources that are disease-specific. Caregivers can also visit the Family Caregiver Alliance website at http://www.caregiver.org/resources-health-issue-or-condition for a comprehensive collection of family-friendly publications filled with practical information on caregiving issues and health conditions.
An important place to start a journey for caregiver support is the Eldercare Locator, a public service of the U.S. Administration on Aging, located at https://eldercare.acl.gov/Public/Index.aspx. Site visitors can connect to a wide range of services for older adults and their families in their communities by entering their ZIP codes into the Eldercare Locator website’s search function at the top of its home page.
Avoiding self-inflicted isolation
Yet, despite all the services and support groups available, it is not uncommon for caregivers to avoid them and self-isolate. Enter Peter Rosenberger, the passionate, highly empathetic and straight-shooting radio show host of Hope for the Caregiver, broadcast twice weekly nationwide on American Family Radio and Family Talk on Sirius XM-131. (Visit http://www.hopeforthecaregiver.com/ .)
Caregivers can call in to talk about their experiences and get advice from Rosenberger, who has been the primary caregiver for his wife, Gracie, for more than 30 years. Rosenberger is also author of a book of the same name as his radio show, and, most recently, a second book titled “7 Caregiver Landmines and How You Can Avoid Them.”
In addition to getting counseling from a mental health expert and participating in a support group, Rosenberger suggests that caregivers call three people they can trust and talk with them without going into a deep conversation. “Just ‘sip’ the friendship slowly,” he says.
This article is part of an ongoing series by the Diverse Elders Coalition, examining different aspects of the senior population.
George Lorenzo is an independent writer and publisher from Ann Arbor, Mich. He writes about aging at http://www.oldanima.com.