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.
“One person caring about another represents life’s greatest value.”
—Jim Rohn
When Did This Happen?
I remember the day my mom got old—or more precisely, the day I noticed that she was slowing down. We were out shopping for a gift and I was chatting away, looking at the window displays, when I suddenly noticed she was no longer walking next to me. When I stopped and turned around, I found my mom several yards behind me and struggling to catch up.
“Are you okay?” I asked with concern. Now, you have to understand that I’ve been conditioned to walk fast. My mom always moved at a brisk pace, and I spent most of my childhood trying to keep up with her!
“I’m fine,” she answered, her voice tinged with frustration. “What’s your hurry? You’re practically running.”
I apologized and slowed my stride, but as the day went on, I began to notice other things I hadn’t before: Her gait seemed slightly off balance and she used the back of the chair to help herself up and down. In fact, once my eyes were opened, I began to detect signs of aging in both my parents. It was as if they had gotten old overnight.
Of course, they had probably been slowing down for quite some time, but because I was with them so often, I hadn’t noticed the gradual changes. As they say, it’s sometimes hardest to see what’s closest to you. Or, perhaps, I just didn’t want to think of them as getting older. My parents had always been active and full of life, and even though they were both in their early 70s, they didn’t act “old.” My dad was always busy building something—from birdhouses to decks—tending his large vegetable garden, or repairing things around the house. It was just hard to imagine my parents as elderly.
But then reality hit hard. At 72, my dad had a near-fatal heart attack. After a long, difficult surgery, from which he never fully recovered, the doctors told us he was suffering from congestive heart failure. Over the next two years, his health declined rapidly. Although my mom was able to take care of most of his daily needs, I began doing their shopping, running errands, and helping around the house as much as I could. My son, who was only two years old at the time, served as spirit brightener. Even as my dad lost his appetite and became increasingly frail, his face would light up as soon as my son burst through the door looking for “Pa.”
Before long, I was assisting with meals and adding nutritional supplements, helping my mom understand the long list of medications my dad was taking, and making nearly daily visits, which was no easy task as they lived nearly an hour away. Amazingly, my dad never lost his wonderful spirit, and when his heart finally stopped he was in mid-sentence, telling a nurse about his grandson with a smile on his face. He was 74, and, in my opinion, far too young to be gone.
At the time, I thought losing my beloved dad and helping my mom through the aftermath was the most difficult thing imaginable, but I was wrong: The years ahead proved to be much harder. Like many
