Introduction: A Blueprint for Better Caregiving

AS WE PLAN FOR OUR LIVES, there are many things we prepare for and expect. Many of us go to school, get married, have children, lose love ones, become empty nesters, go to work, etc. Caregiving is not usually part of our expected life plan. Most people do not ask to be caregivers, prepare to be caregivers, and sometimes do not want to be caregivers. Nevertheless, we are caregivers and, more importantly, we have chosen to be caregivers.

The last statement may seem a little strange. We did not choose to have our relative, spouse, or friend become ill or injured and need care. What we did choose, however, was to care for them. Many people for one reason or another do not make this choice and do not provide care to others. So, congratulations for making that choice and being a caregiver! You are a very special person! As the authors of this book, we are here to share our expertise and the best in caregiving research. We also share what we have learned from thousands of people like you as well as our own experiences as caregivers. Together, we hope to help you gain skills you need to take care of yourself and your care partner. Probably the most important thing that these skills will give you, though, is confidence to manage your life and reduce your stress. Our goal is to improve the quality of life for both you and your care partner.

Right now, you may be wondering just what a care partner is. Your care partner is the person for whom you are caring. Your care partner may be Sally, or Jose, your "Sweetie," your "Dad," or your "Old Man." No matter what you call the person, in this book, we use the term care partner to refer to this person. We do this primarily because it is awkward to always say "the person you are caring for." A wonderful group of caregivers suggested this name and it works well for our purposes in this book.

How to Use This Book

Before we go any further, let's talk about this book and how to use it. Throughout, you will find information to help you learn and practice your caregiving skills. Some of these skills will help your care partner, but most of the skills are aimed at helping you to both care for someone else and to care for yourself. This is not a textbook. You do not need to read every word in every chapter. Instead, we suggest that you read the first four chapters and then use the table of contents or the index to seek the information you need. Feel free to skip around. In this way, you will learn the skills you need to negotiate your individual path.

So, what is in this book? You will not find any miracles or cures in these pages. Rather, you will find hundreds of tips and ideas to make your life easier. This is your "Caregiver's Toolbox." This advice comes from physicians and other health professionals, as well as caregivers like you. The content is supported by research and studies and it is as up-to- date as possible.

Caregiving is a great leveler. It does not matter if you went to school for five years or 20 years. Nor are caregiving skills related to race, age, gender, or genetics. Everyone can learn them. The good news is that there is no test, not even pass or fail.

Our assumption is that most caregivers are doing a terrific job under conditions that are often difficult. In addition to being a challenging job, caregiving can also be isolating. You may be cut off from friends and even family. This makes learning from others difficult. To help you overcome this isolation, we have talked to hundreds of caregivers as well as people who study caregiving. What we have learned, we have put into this book. Our hope is that sharing by this wisdom and knowledge from others, we can help you and others like you become better caregivers.

Stress and Caregiving

Caregiving is stressful. This is one of the things that we have been told by everyone who has experience with caregiving and caregivers. It is almost impossible to be a caregiver without experiencing increased stress. For some, this may be a little stress and for others, lots of stress. The figure shown here illustrates stressors — the things that can cause caregiver stress. In this book, we will discuss each of these stressors in detail and give you some information on how to develop the skills needed to deal with these stressors. As you gain more confidence in your skills, our hope is that your stress decreases.

But what is stress? In the 1950s, the physiologist Hans Selye described stress as "the nonspecific response of the body to any demand made upon it." Others have expanded this definition to explain that the body adapts to demands, whether pleasant or unpleasant. In short, stress is how we react emotionally to a stressor. The stressor can be a dog barking, receiving bad or even good news, someone saying unkind words, or fear of the future. For caregivers, it is often the frustrating or difficult behaviors of our care partners (more about this later). When we are exposed to stressors, not only do we have an emotional reaction, such as anger, sadness, or crying, but our bodies also react physically with muscle tension, headaches, fatigue, or pain. Our hearts may beat faster and we might have problems breathing. Stress can cause us to shout, weep, go quiet, flee, or smile nervously.

If all this seems complex, you are right. Stress is complex. Thankfully, you do not have to understand how stress works to do something about it. Consider the following two people and their stories:

John has been a caregiver for Julianna for many months. He has lost contact with most of their friends. Julianna has Alzheimer's disease, and it seems like every day she remembers less and less. John is worried about his ability to cope and one day when Julianna cannot remember his name. John becomes angry, sits down, and cries. Julianna looks confused and frightened.

Ellen has been the caregiver for Jose for many months. He has Alzheimer's disease and it seems like every day his memory gets worse. Ellen is worried about her ability to cope, but she has found an online support group and she also talks to her friends about her concerns. One day, Jose cannot remember her name. Ellen is sad and mourns for all they both have lost. She takes a few minutes for herself and then gives Jose a dish of his favorite ice cream. He smiles.

These two examples are similar. The stressor — a care partner not remembering a spouse's name — is the same. The immediate emotional reaction of the two caregivers is also similar; they both feel sadness. There are also differences. Ellen has some support. She has both maintained contact with friends and joined an online support group. John...