Sara Krieger has worked as a hospice nurse for several years. But when it came time to care for her own terminally-ill parents, she was amazed at how overwhelmed and isolated she felt.
In 2009, Krieger’s mom, Linda Hill, was diagnosed with recurrent breast cancer. Just a few months later, her father, Dave Hill, also became seriously ill, eventually being diagnosed with multiple myeloma — a cancer of the blood. Both passed away in 2010.
Krieger, a registered nurse (RN) and certified hospice and palliative nurse (CHPN), is clinical leader at Iowa City Hospice and was working full-time and taking care of her own young family — her husband and their two children, then two-and-a-half years old and six months old — when her parents needed her care. She contrasts the role of caregiver with that of a new parent.
“It’s every bit as intense as having a new baby,” she says. “But when you are a new mom, you are getting a lot of advice and support. When someone becomes a caregiver, there are not a lot of people giving you helpful advice.”
That’s when caregiver stress — the emotional, physical and financial burdens placed upon someone providing care for another — becomes a startling reality.
“It’s exhausting and underrecognized,” Krieger says.
Statistics related to caregiving in the United States show that while caregivers like Krieger may feel isolated, they are certainly not alone. According to the National Alliance for Caregiving and the American Association of Retired Persons, in 2009, 19 percent of U.S. households were providing care for an older adult — some 43.5 million family caregivers nationwide.
That same survey revealed that 67 percent of those caregivers are women, with an astonishing 55 percent being employed while providing care. The average caregiver spends 19 hours per week caring for her parent, according to the survey.
“The biggest issue with caregiver stress that I have seen are the feelings of guilt caregivers have when asking for assistance because they believe that they should care for their loved ones themselves,” says Lisa Harvey, a social worker at Pathways Adult Day Health Center in Iowa City and co-facilitator of the caregiver support group at Iowa City Hospice. “It’s not only a personal expectation they feel. There are family and societal pressures to be the caregiver — wives should care for husbands, daughters should care for parents. Some people are just not cut out to be caregivers and that’s OK.”
Of those who do end up being caregivers, the financial costs are not often realized. According to the AARP, 20 percent of caregivers have to quit work in order to provide care; of those, 31 percent lose their life savings doing so.
The physical demands placed on caregivers are extreme as well. “Caregivers are doing a lot of strenuous activities,” Krieger says, noting caregivers often put their loved one’s health and needs before their own. “They don’t take care of themselves and they don’t sleep well.” Again, Krieger knows firsthand. “My mom didn’t keep normal sleep hours so I was exhausted. That was like having a new baby too.”
Harvey says her best advice to caregivers is to ask for and accept help before they think they need it. “Stressed-out caregivers often don’t make good caregivers, just as stressed-out workers don’t produce good work, so they need to take vacations and enjoy their weekends. Caregivers need to do the same because caregiving is a job.”
Of course, emotional and mental health risks are perhaps the most apparent challenges with caregiving. “It was emotionally exhausting. I would say I was an emotional wreck and that I was in survival mode,” Krieger says of the year spent caring for her parents. “There can be intense guilt. Maybe there is nothing you can do to make your loved one get better, but we tend to put that weight on ourselves, and that can greatly intensify grief after a death.”
That’s why finding support can be so important. “We have found that connecting caregivers with other caregivers is really beneficial. They learn from each other,” Krieger says.
Several organizations throughout the Corridor offer information, support and comfort for caregivers. They include:
This story originally appeared in the July 14, 2013 Women’s Health special section.