Many people don't imagine taking on the role of primary, or even partial, caregiver to a loved one. The responsibilities of providing that kind of medical assistance and interactive social care are simply not part of their reality — until they are.
The term "caregiver" is fairly broad, but caregivers are either unpaid or professional care providers for people in need of medical assistance or help with everyday tasks. They can be live-in help or operate out of formal institutions.
According to a 2009 survey by the Centers for Disease Control and Prevention (CDC), approximately a quarter of U.S. adults provided care or assistance to a person with either a chronic illness or disability over the previous 30 days. All of these people fall into the category of "informal or unpaid care" since the caregivers are family or friends rather than paid professionals. Another CDC report, in tandem with the Kimberly-Clark Corporation, found caregivers in one of every five U.S. households, and that 83 percent of those caregivers are unpaid.
Professional help is available through organizations like Home Care Solutions in Metairie. Megan Muller, human resources manager, says they are, first and foremost, here to help. "We offer a range of companion care, transportation and whatever else is needed in the home of someone in need of a caregiver," she says.
Home Care Solutions has a team of social workers who can accompany family members to doctor appointments and follow-up visits, as well as a team of trained caregivers. "It can really save the families a lot of time," Muller says. "Caregiving, especially when the responsibility is unexpected — as it often is — is a time-consuming task."
Home Care Solutions also connects clients with related resources in the area, including assisted living and nursing homes. It also provides financial planning and resources like attorneys specializing in issues that the elderly face.
According to statistics from the Caregiver Action Network (CAN), roughly 66 percent of caregivers are women. The average caregiver is a 49-year-old woman caring for her 69-year-old widowed mother, who does not live with her, and 37 percent of these caregivers have children or grandchildren living with them at the same time. Most unpaid caregivers also work full time.
Muller is familiar with this trend and has a term for them.
"We call them the 'sandwich' generation because these people typically also have children of their own that they care for in addition to having to be the parents for their parents," she says. These people are "sandwiched" between dual responsibilities, and Muller says the elder parents often are resistant, which can enhance the stress.
The pressure that comes with the responsibilities of caregiving can have profound mental, emotional and even physical effects. The CDC report cites high levels of depression and anxiety, as well as a resultant increase in the use of psychoactive medications, as risks for caregivers. The stresses of their duties also are associated with self-reported poor physical health and compromised immune systems. Overall, CDC data shows more than half of caregivers say their ability to provide adequate care is compromised by a decline in their own health.
The medical community has given the symptoms a name: caregiver burnout syndrome. It's roughly defined as a state of physical, mental and emotional fatigue brought on by caregiving. Defined symptoms are similar to depression: withdrawal from family and friends, loss of interest in previously pleasurable activities, loss of appetite, disruption of sleep patterns, irritability, getting sick more often and others.
The condition can be brought on by a number of issues, including the stress of being upended by sudden caregiving, unreasonable expectations and a lack of sleep and exercise.
Muller is familiar with this syndrome. "Caring for family members often causes one to neglect caring for themselves," she says. "Knowing when and where to ask for help can cause some guilt in the asking and some anger that can lead to burnout."
She says caregiving for someone with Alzheimer's or dementia can be especially stressful. The CDC report confirms providing care for dementia-related ailments can have "profound consequences" for caregivers, who can become responsible for everything from managing behavioral disturbances to attending to physical needs.
Caregivers — professional or not — could benefit from assistance from a community that recognizes their challenges and sacrifices. There are a wide variety of online communities with resources, Q&A forums and social media groups, including Comfort Finders and The Caregiver Space. The Comfort Finders website (www.comfortfinders.com) has a long list of support groups for caregivers, including local chapters of the American Cancer Society and the Alzheimer's Association with offices on River Road in New Orleans and Causeway Boulevard in Metairie, respectively.
The New Orleans Council on Aging (NOCOA) on Canal Street also offers support. It provides access to an array of resources and services related to the elderly, including social services, as does the National Family Caregiver Support Program (NFSCP). This program provides everything from counseling and outreach to in-home respite (which allows a caregiver a four-hour break from his or her obligations), to material aid for caregivers. The group also has a support group that meets on the second Thursday of every month.
Many organizations, including the AARP, CDC and CAN, recognize caregiver burnout syndrome and offer tips for proactively managing it. The AARP recommends alerting your doctor and other medical professionals of your caregiver status, getting regular exercise (no matter how brief), mapping out priorities and to-do lists, and establishing a network of friends or relatives with whom you can communicate.