Copyright © 2015 Robin Porter
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Spry Publishing LLC
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Library of Congress Control Number: 2015940121
E-book ISBN: 978-1-938170-71-3
Disclaimer: Spry Publishing LLC does not assume responsibility for the contents or opinions expressed herein. Although every precaution is taken to ensure that information is accurate as of the date of publication, differences of opinion exist. The opinions expressed herein are those of the author and do not necessarily reflect the views of the publisher. The information contained in this book is not intended to replace professional advisement of an individual’s doctor prior to beginning or changing an individual’s course of treatment.
In loving memory of my dear parents, Bob and Lorraine I miss you every day.
CONTENTS
CHAPTER 1 BECOMING A CAREGIVER
CHAPTER 2 IMPORTANT CONVERSATIONS
CHAPTER 3 PRESERVING INDEPENDENCE
CHAPTER 4 OTHER LIVING ARRANGEMENTS
CHAPTER 5 NUTRITION AND EXERCISE
CHAPTER 6 MENTAL WELL-BEING
CHAPTER 7 DOCTORS, HOSPITALS & OTHER FACILITIES
CHAPTER 8 CAREGIVER SUPPORT
EPILOGUE
RESOURCES
ACKNOWLEDGMENTS
INDEX
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