About two years ago, Karon White Gibson of Plainfield, Ill., became a caregiver for her burly ex-cop husband, Ralph. Then 84-years old, Ralph Gibson had developed a minor heart condition, followed by an injury that caused him to lose balance at times. Then while he was at a rehab center, an over-bed serving tray struck his foot, leading to a severe infection and complications.
A former nurse, Karon, now 72, had taken care of many people. But that didn’t prepare her for the new caregiving role she had at home. “It scares you,” she said. That was especially evident during her frequent rehabilitative walks with Ralph: When he lost his balance she couldn’t hold him up and had to gently let him slide down her side onto the floor.
“I’m a nurse and I thought I could take care of him up to the end. But I’m not a 20-year-old nurse anymore,” she said.
Need for caregiving is huge and growing
Gibson is far from alone. The need for caregiving is huge, and growing. The Family Caregiver Alliance, a San Francisco-based nonprofit, says 43.5 million Americans have given unpaid care to an adult or child in the last 12 months. About 40 percent of them care for an adult with a disability or illness.
43.5 million Americans have given unpaid care to an adult or child in the last 12 months
The economic value of caregivers’ unpaid contributions was $470 billion in 2013, the latest year for which statistics are available, up 25 percent from $375 billion six years earlier, according to the AARP Public Policy Institute in Washington. The 2013 contribution by caregivers was just shy of the $477 billion in sales tallied that year by Wal-Mart, the world’s largest company by revenue. The economic value of unpaid care given to victims of Alzheimer’s disease alone was $217.7 billion in 2014, according to the Chicago-based Alzheimer’s Association.
In 2016, almost four in five caregivers (78 percent) reported having to incur out-of-pocket costs for their services, mostly for related household expenses and medical costs not covered by insurance, an AARP study found. Family caregivers spent an average of $6,954, or almost one-fifth of their income, on caregiving.
“The strain can be enormous, and may put their own financial and retirement security at risk,” said Nancy LeaMond, chief advocacy and engagement officer at AARP.
Strain can be overwhelming
In the AARP study, 40 percent of family caregivers reported feeling overwhelmed by the task. The pressures they experience sometimes cause them to lose control and act violently against the very people they are caring for.
That is especially likely if the person being cared for is disabled, according to a study by the Ruderman Family Foundation, a private philanthropy in Boston. Based on an analysis of media reports, the study found that people with disabilities were killed by their family caregivers at a rate of one a week between January 2011 and December 2015. The analysis didn’t break down the victims by age.
Feeling overwhelmed is understandable, said John Schall, CEO of the Caregiver Action Network in Washington, D.C., which provides free resources ranging from the nuts-and-bolts of caregiving to dealing with the emotional issues caregivers face.
“None of us are born knowing how to do caregiving. It’s something you learn by doing,” Schall said. “What’s important is that new caregivers not feel alone and try to figure it all out for themselves. There are resources out there for you.”
“What’s important is that new caregivers not feel alone and try to figure it all out for themselves. There are resources out there for you.”
Support groups can help
Caregivers do often feel they are on their own, said Amy Goyer, AARP’s family and caregiving expert. “Caregiving for family and friends can be very isolating because all of our time and energy is devoted to our loved ones and juggling the other parts of our lives,” she said. “Relationships fall aside when friends don’t understand what we are going through and we don’t have time for our usual activities with them.”
There are many ways to get help, she said. Caregiver support groups help family caregivers connect with each other and learn about available resources. Local agencies on aging can put caregivers in touch with nearby support groups hosted by faith-based and other groups or hospitals. Many organizations battling specific diseases host support groups, among them the Alzheimer’s Association and the American Heart Association. The Department of Veterans Affairs also provides help to family members caring for veterans, Goyer said.
Eight Caregiver Resources to Know
- Caregiver Action Network (CAN). Whether a caregiver is new to the role or many years into it, CAN offers help. Its website has a section called “I Just Realized I’m a Caregiver.” Resources also exist for long-distance caregivers. Other services: videos on caregiving, insights on managing medical information and opportunities to ask questions of other caregivers. caregiveraction.org.
- Family Caregiver Alliance (FCA). The organization’s website offers a library, information sheets, webinars, videos and online classes. Two FCA monthly newsletters examine family caregiving and policy regarding caregiving. FCA has in-person, online and community support groups. caregiver.org.
- AARP. Caregivers can post questions to experts on AARP’s website. AARP’s family caregiving site offers insights on managing health care, legal and financial issues, care delivery and a downloadable Prepare to Care guide. www.aarp.org/caregiving.
- Lotsa Helping Hands. Caregivers can post updates on their loved one’s condition, receive well wishes from friends and the community at large, ask for help with meals or rides to doctors, and more. LotsaHelpingHands.com.
- Well Spouse Association. This group is dedicated to tackling the unique hurdles of caring for spouses. It offers a newsletter called Mainstay, information brochures and respite events. A recent one was a September weekend at an inn in Wildwood Crest, N.J., featuring a meet-and-greet and dinners with other members, mixed with relaxing on the boardwalk and other cathartic pursuits. wellspouse.org
- Alzheimer’s Association. The association sponsors support groups, provides online message boards, helps members locate local resources and publishes blogs by families dealing with the disease. alz.org.
- National Adult Day Services Association (NADSA). Adult day services permit caregivers to continue working and get a break from caring for loved ones by providing day care in a group setting. Services include finding appropriate day care centers, door-to-door transportation, socialization, meals and health-monitoring of those under care. nadsa.org
- American Association of Caregiving Youth (AACY). More than 1 million young people from age 8 to 18 provide care to adults. This organization helps these caregivers continue with schooling, find support groups and learn about ways to get a break, including camps for youth caregivers. aacy.org.