On a brisk January morning, ten people assemble in the local community center. Bright winter sun streams through the windows, helping to take the chill out of the small, plain room. Some people are already seated, quietly chatting, while others are getting coffee and shedding layers of coats and scarves. From the back of the room, I notice the group’s diversity: There are five middle-aged women, a man and woman who both look to be in their late 60s or early 70s, an elderly man with a cane, and two young woman, who I guess to be in their early 30s. In addition to the difference in ages, this group represents various ethnicities, economic situations, and family backgrounds. Yet, they all have one thing in common – they are caregivers. And because they’ve taken on this important role, they have similar concerns, frustrations and experiences, which they’ve gathered to share.
THEY ARE NOT ALONE
Though there are wide discrepancies in the estimates of the number of informal caregivers – defined as an unpaid individual involved in assisting others with the activities of daily living or medical conditions – statistics from the National Alliance of Caregiving reveal that more than 65 million or 29 percent of U.S. adults provide care to someone who is ill, disabled or aged. Among this population, the majority are women. In fact, the Centers for Disease Control and Prevention (CDC) define the typical caregiver as a 46-year-old woman who provides more than 20 hours of care each week to her mother. Of course, caregivers and care recipients come in all shapes and sizes, so to speak.
Take the folks at our support group, for example. Four of the five middle-aged women fit the profile of the average caregiver, while the fifth cares for her disabled adult son; the older man and woman each care for their spouses; the elderly man tends to his brother with Alzheimer’s; and the two younger women are military wives caring for husbands who returned home from service with traumatic brain injuries.
While the amount and type of care each of these people provides vary greatly, nearly all caregivers report similar challenges, including having difficulty finding time for one’s self, managing emotional and physical stress, and balancing work and family responsibilities. Furthermore, in a study conducted by the National Alliance for Caregiving and AARP, caregivers said they do not go to the doctor because they put their family’s needs first (67%) or they put the care recipient’s needs over their own (57%), and more than half said they do not have time to take of themselves or are too tired to do so. It’s no wonder these respondents also indicated that their health had gotten worse due to caregiving, which in turn affected their ability to provide care.
JUST LIKE ME
In many ways, I was a walking illustration of the “typical” caregiver. I cared for my mom, while I was in my 40s, and like so many women in this age group, I was also raising a young son and working part-time. And, like a significant number of caregivers, I eventually gave up my job entirely to provide the care my mother needed. As for putting everyone else’s needs ahead of my own, I was “guilty as charged.”
Over a 10-year period, my caregiving duties evolved from part-time assistance to nearly full-time care. Along the way, I learned many valuable lessons – some by seeking the advice of experts, while others I had to discover the hard way! When I look back, I believe I did some things very well, and I’m proud of my role as caregiver, but I also made many mistakes and wish I had handled some situations differently. Caregivers, after all, are typically not trained or experienced, but rather thrust into the role and expected to learn as they go – not an easy task, but one that can be rewarding.
FINDING THE LIGHT
Now that both my parents have passed away, not only do I miss them terribly, but I find myself pining for some of the most mundane caregiving tasks; duties that at the time seemed burdensome. For instance, my mom and I used to spend hours at a clinic while she received infusions for chronic anemia. At times, the waiting was aggravating for both of us, and the slow drip of the infusion was seemingly interminable. Yet, some of our most meaningful conversations took place during these visits, and afterward we created a ritual of stopping to get her favorite dessert as a treat. Despite my unintended weight gain, I found that I enjoyed these bi-weekly visits more than I expected. Though these memorable moments were rarer than the heart-wrenching and stressful times, they seem to shine more brightly in my memory.
No matter what your individual circumstances, caregiving is a huge undertaking that requires many skills – compassion, understanding, knowledge, patience, a good sense of humor, and, above all, organization. That’s right – being organized can save your sanity! It’s also necessary for a caregiver to care for one’s self, which I realize is easier said than done. Unfortunately, there are no “one-size-fits-all” answer guides for caregiving, but there are good resources available, from support groups to books, which can make a difficult task a little easier. I would encourage anyone who takes on this role to take advantage of these resources, learn from others, and most importantly, don’t be afraid to ask for help. One thing is certain, doing it alone is nearly impossible!
Caregiving can sometimes be a lonely and unappreciated position, so its comforting to know that others understand what you’re going through and have experienced many of the same emotions. I can honestly say that caregiving was the most difficult thing I’ve ever done, and yet, it was the most meaningful and rewarding role I’ve had in my life. As you navigate the road ahead, which is sometimes smooth, but more often twisting, bumpy and unmarked, I want you to know that you’re not alone. May you find the light that is sometimes difficult to see, but is always there if you look hard enough.
(For more information, read “The Complete Caregiver’s Organizer: Your Guide to Caring for Yourself While Caring for Others,” by Robin Porter)