Who cares for the caregivers?
The role of caregiver is rarely a calm or brief one, says elder-care expert Barbara McVicker, author of the book, “Stuck in the Middle.” It usually unfolds in a time of crisis. “It can tear people apart, make families so they never speak to each other again, or it can bring families closer together,” says McVicker.
Most people have heard of the Sandwich Generation — those middle-age adults who are still working, have children in the home and are also caring for aging parents. With people living longer, an increasing number of young adults returning home to live with parents for a time and the economy forcing delayed retirement of baby boomers, the sandwich is getting bigger and more difficult to hold together.
A comparison of findings from national surveys on caregiving, published in 2004 and again in December, show the average caregiver age in 2004 was 46.4 years and the average recipient of that care 66.5 years. In 2009, the average caregiver was 49.2 years and the average recipient was 69.3 years old. The studies were published by the National Alliance for Caregiving, AARP and the MetLife Foundation.
The 2009 survey revealed the amount of caregiving provided per week is 19 hours, on average, indicating caregivers working full-time are adding a part-time job to their responsibilities.
The average length of time a spouse or an adult child or sibling cares for an elderly loved one is 4.6 years, according to the 2009 Caregiving in the U.S.A. study.
“We have more chronic illnesses, are finding them earlier and there are a lot of people with cognitive impairment,” McVicker says, noting, “I feel very strongly that we need to go in this with a long-haul expectation.”
McVicker, who was born in Fort Wayne and now lives in Columbus, Ohio, speaks from experience. For a decade, she was the caregiver for her parents while maintaining a career as a nonprofit development director and raising children. Through her educational business, called Stuck in the Middle, McVicker now speaks to corporations and health care and community organizations on care-giving issues.
“The speed bumps of caregiving are truly universal, whether you’re in Chicago, San Diego or Fort Wayne, Indiana,” she says.
Caregiving usually falls to one person, McVicker says. It may be the family member who is closest geographically to the care recipient or who is not working at another full-time job. Sometimes male siblings assume the sister is to take on the responsibility. Even if one family member willingly accepts the role, discussion among all is needed to ensure she or he has breaks, has emotional and physical support, and is valued.
This caregiver can be the hidden patient, McVicker says. Outwardly, he or she appears to have it all together. But inner stress builds, and the health of the caregiver may worsen at a faster pace than the identified patient.
McVicker tells families when they call mom and dad, “Ask the caregiver, ‘How are you doing?’ Send flowers to that person.” A problem can also develop when a brother or sister who lives far away flies in for a week or two.
“Mom and dad dote on the visiting (child). The visit can be helpful but also very painful and hurtful” for the caregiver sibling, she says. Such issues can add to the “mud” of already-stressed individuals. “Even good families become dysfunctional when they become caregivers.”
McVicker advises adult children who are beginning to see signs of an elderly parent’s physical or mental decline to do thorough assessments.“Things are always worse than they look,” she says, pointing out that, on the surface, things may appear OK, but “you need to be a detective.” Look for mail or laundry piling up, dents in the car, lack of food or spoiled food in the fridge. Check their medications, the prescribing information and when they were last filled to ensure mom or dad are taking them.
Have a discussion with parents about their finances sooner rather than later.
“What I find is that about 70 percent of adult children have never talked to mom and dad about their finances,” McVicker says. She recommends the “40-70 Rule,” which encourages adult children by age 40 to discuss these issues as a family no later than when the parents reach age 70.
One of the healthiest actions caregivers can take is to openly share with family and friends the ups and downs of caregiving. So often when doing a presentation she hears from those in attendance, “‘I thought I was all alone. Your speech made me realize I wasn’t alone” (taken from “Sandwhich Generation” by Jennifer L. Boen, The News-Sentinel).
A care-giving education paradigm shift needs to occur. Expectant parents read volumes in preparation for the birth of their baby, yet we wait until crises occur before seeking knowledge and resources on caring for our national treasure of older adults.
http://www.aginginfousa.com/ Caregiving Resources for People in the Real World