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INTRODUCTION

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 women, 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 and/or medical conditions—statistics from the National Alliance for Caregiving and AARP 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, one who has suffered a stroke and the other who has Parkinson’s disease; 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. Again, the amount and type of care each of these people provides vary greatly, as do their respective support networks of family, friends, and professional assistance. However, nearly all caregivers report the same challenges, including having difficulty finding time for one’s self, managing emotional and physical stress, and balancing work and family responsibilities.¹ Furthermore, in a study conducted by the National Alliance for Caregiving/AARP, caregivers said they do not go to the doctor because they put their family’s needs first (67 percent) or they put the care recipient’s needs over their own (57 percent), and more than half said they do not have time to take care 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 both my parents, first my dad and then my mom, while I was in my 40s. Like many women in this age group, I was also raising a young son and working part-time, and similar to a significant number of caregivers, I eventually gave up my job entirely to provide the care my mother needed. I, too, found it difficult to balance family and caregiving responsibilities and manage the stress that goes along with the role. For a time, I also neglected my own health because I felt “I didn’t have the time” or was just too exhausted to make the effort. I was, in fact, “guilty as charged,” for putting everyone else’s needs above my own—until I learned better.

Over a 10-year period, my caregiving duties evolved from part-time to nearly full-time; from assistance with errands and chores to help with the basics of daily living and medical treatment. Along the way, I learned many valuable lessons—some by seeking and following 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 my parents have both 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 iron infusions for chronic anemia. At times, the wait was aggravating for both of us, and the slow drip of the infusion was seemingly interminable. Yet, some of our most meaningful conversations occurred during these visits, and afterward we created a ritual of stopping to get her favorite dessert—a hot fudge ice cream puff—as a treat. Despite my unintended weight gain, I found that I enjoyed these biweekly 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 the caregiver to care for one’s self, which I realize is easier said than done. Unfortunately, there are no easy solutions—no “one-size-fits-all” answer guide for caregiving. Without a doubt, it helps when others share similar struggles and experiences. With that in mind, the information on the following pages is intended to help caregivers learn from both professionals and those who have lived through the process; to help you be more prepared, thus avoiding some painful mistakes. It also includes tips to help you stay organized, which makes a difficult task a little easier and, perhaps most importantly, to take care of yourself.

Though I did my share of wound care and injections, this book is not a medical guide and is not meant to replace the advice of your healthcare team. While caregiving does involve many medical duties, from changing bandages to monitoring blood pressure, I have found that it’s better to learn how to administer medical care from healthcare professionals. Never hesitate to ask physicians, nurses, or therapists detailed questions or ask them to teach you how to care for your loved one properly. In most cases, they will be more than willing to oblige.

Besides the practical advice, I hope this book makes you feel that you are not alone. Caregiving can sometimes be a lonely and unappreciated position, so it’s comforting to know that others understand what you are 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—more challenging than college, a full-time career with demanding deadlines, and even child rearing (though raising a teenager may take a close second!). Nevertheless, caregiving is also vital and meaningful, and in some ways, fulfilling. As you navigate the road ahead, which is sometimes smooth, but more often twisting, bumpy, and unmarked, I want you to know that my thoughts and prayers are with you. May you find the light that is sometimes difficult to see, but is always there if you look hard enough.

—Robin Porter

Take a few minutes to jot down some questions that you hope to have answered by this book. What challenges you most about caregiving? Then, either as you read through or when you’ve finished the book, come back and make some notes to help you resolve the issues.

1 National Alliance on Caregiving/AARP, Caregiving in the U.S., 2009.