Caregiving: The Emotional Toll
Arthur Kleinman spent 10 years caring for his wife, Joan, who was diagnosed with a rare form of early Alzheimer’s disease when she was 59.
Kleinman, a professor of psychiatry and medical anthropology at Harvard Medical School, said he studied illness and caregiving throughout his career; yet, he was not prepared for being a caregiver. To make matters worse, Kleiman said he and his wife were not getting the support they needed from doctors and the healthcare system.
Kleiman echoes sentiments of unpaid caregivers nationwide who feel neglected, frustrated, and stressed out while caring for their spouse, family members, or close friends with complex health needs, chronic illnesses, or disabilities.
Although caregivers may feel alone, they are not alone. An estimated 53 million adults in the United States provided care to an adult or a child with special needs at some time in the past 12 months, according to the 2020 Caregiving in the U.S. research report conducted by AARP and the National Alliance for Caregiving. When it comes to caring for adults only, the estimated number of U.S. caregivers stands at 41.8 million, up from 34.2 million in 2015.
The report suggests that the increase in caregiving is due, in part, to an increase in the baby boomer population, workforce shortages in healthcare or long-term services, and a push toward providing more home- and community-based services.
Caregivers Juggle Multiple Responsibilities
Caregiving, in and of itself, is a full-time job, and frustration and stress mounts when primary caregivers work outside the home. The type of caregiving provided depends on the care recipient’s disability. So, caregivers can do anything from daily bathing, dressing, and grooming the care recipient to do housework or feeding the recipient.
If that isn’t enough, some caregivers coordinate medical care for the recipient, and that means finding doctors and transporting the recipient to and from medical or physical therapy appointments.
Depending on the care recipient’s health condition, some caregivers may have to provide the same care as trained healthcare professionals, such as changing catheter tubes and drainage bags, and cleaning and dressing wounds.
Caregiving Impacts Personal Finances
Besides causing emotional strain, caregiving also places financial pressure on caregivers since some healthcare plans do not pay, or partially pays, for the supplies and equipment recipients need for their care.
The AARP and NAC report, which involved 1,392 respondents, found that 1 in 5 caregivers said they experienced high financial strain as a result of caregiving while 4 in 10 caregivers reported at least one financial impact due to caregiving. In addition to that, nearly 1 in 4 respondents said they have taken on more debt while 15 percent said they borrowed money from family or friends.
Caregivers miss substantial time from work or take time off under the Family Medical Leave Act, a federal law that provides job-protected, unpaid leave from work for certain family and serious medical reasons.
Gail Gibson Hunt, NAC’s founder, recommends caregivers consider the future impact that taking off work has on their Social Security and other benefits.
Michelle Murphy, a California resident, is feeling the financial impact of taking care of her partner, Jeffrey Senne, for 11 years. Senne was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.
Murphy, the founder of an executive coaching firm, said she reduced her work hours and used her savings so she could cut back on her work hours, and pay for outside caregivers. She also set up a hospital bed, a hydraulic lift to move Senne from the bed to a chair, a nebulizer, a suction pump, a cough-assist machine, and oxygen tanks.
Unfortunately, Murphy, 68, was diagnosed with Stage 3 leukemia last December. She said she does not have immediate family to help her and questions who will care for her when she needs it.
Caregivers Must Take Time To Care For Themselves
Studies have shown that the demands of caregiving can emotionally and physically affect even the most healthy person.
In one study, researchers reviewed 151 studies related to the health of caregivers for people with dementia. The study, published in Neuroscience & Biobehavioral Reviews in 2017, found that in a majority of studies, cortisol (a hormone released when the body perceives stress) was increased in caregivers. In addition, caregivers performed more poorly on attention and executive functioning (the set of cognitive skills needed to control behavior) tests.
The Mayo Clinic recommends that caregivers manage their stress by:
- Seeing their doctor and discussing any concerns or symptoms they have
- Accepting help from others and letting them choose the type of assistance that they would like to offer
- Setting realistic goals by prioritizing, making lists, and establishing a daily routine
- Setting personal health goals
- Getting connected to caregiving resources in your community
Caregivers may also find comfort in a caregiver’s support group and workshops specifically designed for caregivers.
Organizations Providing Support For Caregivers
Some states and local organizations are stepping up to help caregivers. For instance, some states pay caregivers through their Medicaid program. Veterans Affairs has a family caregiver program that trains and pays family members who are living with and caring for disabled veterans.
The Area Agency on Aging (AAA), a nonprofit organization that provides resources for older and disabled adults, is doing its part, too. More than 600 AAAs nationwide offer services that support caregivers with stress-relief programs that include physical activity, cognitive behavioral therapy and meditation, and backup caregivers.
Caregivers say they appreciate any type of support that eases their burden, but they would also like to get more help from the healthcare system.
While caring for his wife, Kleiman said he discovered there were two health care systems in America. One is the high-technology system that deals with trauma and acute disease and this system works well, he said. The second, he said, is the chronic illness system, which primarily consists of human interactions, and that’s where the system is failing,
Kleiman said no one knew how to talk to him about what he could expect as his wife’s disease progressed. “They simply weren’t trained for any of that,” he said.
After his wife was diagnosed with Alzheimer’s, Arthur Kleinman shares what he learned