DISCOVERING YOU ARE A CAREGIVER
Take our quiz to see if you're a caregiver...and then see how recognizing your role is the healthiest thing you can do for you!
BY:CAROLYN MCINTYRE, LCSW-R, CEAP
If you answered yes to any of the questions in the box on the left, you are a caregiver.
So why do some people who provide hours of care—whether it's for a child with special needs, an elderly parent, an ailing spouse or another loved one with a disability-see themselves as caregivers while others providing just as much care do not see themselves as such? Michelle Stone, senior program manager of dependent care at Fannie Mae, the major financial-services company serving the American home-mortgage industry, believes there are several reasons.
Stone, who's program at Fannie Mae has provided an on-site eldercare consultant to make phone calls to hospitals, discharge planners, Medicare/Medicaid offices and more for over 1,200 employees since 1999, says many people don't consider themselves caregivers because they don't live with the loved one. And, she adds, if both of the caregiver's parents are alive, the caregiver does not see herself as such because she views the care recipient's spouse as the caregiver.
Another reason Stone provides deals with the caregiver who is so busy juggling work and care responsibilities that she doesn't have time to reflect on the metamorphosis of the role she plays. Stone also explains that a caregiver can be unaware of having assumed that role because of how gradually the scope of caregiving responsibilities has emerged.
Lastly, she notes, many caregivers do not consider themselves to be such because they think a caregiver is someone who is paid to provide care. For example, in many families, an adult child's role has long been understood to include caring for aging parents. So when it happens, the adult child doesn't see it as a new role in life.
I didn't see myself as a caregiver for the first year or more of my caring for my mother upon the onset of Alzheimer's disease. Her companion was bearing more of the burden than I, and the tasks I performed had not yet significantly affected my life. Once I began taking my mother to appointments and doctors provided us with her diagnosis, I realized I was a caregiver along with her companion. I became part of a caregiving team that included her companion and my two sisters. Over time, the team would expand to include doctors, social workers, nurse's aides, my uncle, a lawyer, an accountant and the staff of a day program.
Adjusting Your Vision
As a social worker who has met with many caregivers over the years, I'd add that we can't underestimate the power of our desire to hold on to seeing a parent or loved one the way we have always seen that person. The denial can come from the caregiver or the care recipient, or both can be caught up in the dance of denial together. The move toward seeing a loved one as vulnerable, frail, needy, or weakened-no longer the Mom or Dad we have always known and relied on or the spouse who's been both your helpmate and soul mate-is an emotional journey. Becoming a caregiver to a parent upsets the parent/child hierarchy and being the caregiver to a spouse with whom you shared life's responsibilities can disrupt the balance of any relationship, so it is no wonder we have difficulty talking with our ill or disabled loved ones about helping them with their health and managing their finances. And taking on the issues of a chronically ill child—well—this is not the way life is supposed to be....
Gracie Ortiz, Fannie Mae's on-site eldercare consultant, has identified the most common times when a caregiver sees herself as a caregiver. It happens when:
-There is a formal diagnosis of the care recipient
-The care recipient is discharged from the hospital
-Caregiving disrupts work schedules or normal routines
-The caregiver's physical or emotional health is negatively affected
-Decisions are made to move the care recipient
-Out-of-pocket expenses increase significantly, and/or
-Informal adjustments to work become more regular
Even though it may be hard or take a long time to see yourself as caregivers, there are benefits to doing so. The National Family Caregivers Association 2001 survey of family caregivers found that when caregivers identify themselves as such, they "become more proactive about seeking resources and skills they need to assist their care recipient. Self-identification...leads to increased confidence when talking to healthcare professionals about their loved one's care."
Taking Care of Yourself
Even with those who do self-identify, according to the NFCA study, "fewer caregivers seek prompt attention from a doctor for their own health problems than they did before they were caregivers (47 percent versus 70 percent)." Exercise, the report notes, is the one activity that is most likely to go by the wayside, with only 30 percent of caregivers getting exercise compared to the 61 percent who exercised prior to becoming a caregiver.
Remember the importance of self-care. Most healthcare professionals with whom you interact may focus solely on your loved one's health. Your primary responsibility as a caregiver must be to maintain your own well-being.