Read an Excerpt

Introduction
 
Mary was engaged in one of her favorite activities—doing the crossword puzzle in the daily paper. “I don’t know what’s the matter with me,” she said to her husband, Jerry. “The clue is ‘ “Blank” Velvet,’ the name of a song. I know the first word is a color, but I can’t remember what it is.”
 
“Well, it’s not as bad as forgetting the name of our mailman, which you did yesterday,” Jerry teased. But beneath his teasing tone, Jerry was worried. Mary’s memory lapses were occurring more frequently. Something was wrong with her, and that realization frightened him.
 
Mary is in the early stages of Alzheimer’s disease, a devastating illness that ultimately leads the sufferer to a state of total dependence on caregivers. The most insidious aspect of the disease is that it begins almost imperceptibly; moments of forgetfulness, among the first symptoms, are easily attributed to distraction, emotional upset, or simply a “normal” part of aging.
 
But there is nothing “normal” about Alzheimer’s. It is an organic brain disease that takes a tremendous toll on the person with the illness, the caregiver, and society at large. Currently more than four million Americans suffer from Alzheimer’s. The prevalence increases dramatically with age. People age sixty-five to seventy-four have a one in twenty-five chance of having Alzheimer’s; for those age eighty-five and older this likelihood rises to a staggering nearly one in two chance. This eighty-five-plus age group is the most rapidly growing sector of the American population, which means we may expect a dramatic increase in the overall number of people with Alzheimer’s in the coming century, unless preventive treatments and cures are discovered.
 
Alzheimer’s disease affects the cells of the brain, producing progressively severe intellectual impairment. At first the individual experiences only minor and almost imperceptible symptoms that may be attributed to emotional upset or other physical illnesses. The person may forget to turn off the oven, misplace things, recheck to see if a task was done, or repeat already answered questions. As the disease progresses, memory loss increases and other changes, such as confusion, irritability, restlessness, and agitation are likely to appear. Judgment, concentration, and speech may also be affected.
 
There are many different patterns in the type, severity, and sequence of changes in mental and neurological functioning that result from Alzheimer’s disease. Although the symptoms are progressive, there is great variation in the rate of change from person to person.
 
During the early stages the person with Alzheimer’s is likely to be aware that his or her mental faculties are becoming impaired. This realization can be agonizing to the person with the disease and may trigger depression and other mood changes. The decline may also have terrible emotional consequences for the spouse and children of the person with Alzheimer’s, especially when they are the caregivers.
 
During the later stages Alzheimer’s can cause complete dependency. The person with Alzheimer’s may eventually lose the ability to walk and to eat and swallow, and may need round-the-clock care at home or in a nursing facility.
 
THE DIFFICULTY OF CAREGIVING
 
Caring for a person with Alzheimer’s takes courage and fortitude. As the National Institute of Aging points out, the caregiving burden is not simply a matter of money, though care can be costly, especially when patients are repeatedly hospitalized during the course of their illness. In addition active caregivers, as well as family members and friends who take on part of the caregiving responsibilities, may suffer from depression, exhaustion, isolation, and increased health problems. For example, Peter told himself, “I’ve had it. Mom is getting worse and worse. I feel as though I can’t stand the sight of her anymore. Then I feel guilty.” Peter eventually decided to ask his sister to share in caregiving so that he could take some much-needed time for himself.
 
If you are a caregiver, you may be reluctant to ask for help, feeling that the person with Alzheimer’s is your responsibility or that you must be stoic and handle everything yourself. These are mistaken beliefs. All caregivers can benefit from support from others and from the practical information contained in resources such as this book. No one has to “go it alone.”
 
HOW THIS BOOK CAN HELP
 
This book can help you in three very important ways. First, When Someone You Love Has Alzheimer’s lets you know that you are not alone in your feelings, frustrations, and difficulties. No matter how much you may love a person with Alzheimer’s, there will be times when you lose patience or feel distraught, angry, and helpless. This book will help you understand that such feelings are perfectly normal, and not a cause for guilt or self-recriminations.
 
You’ll also learn how others like yourself use specific techniques to help the person with Alzheimer’s live as full a life as possible through each stage of the disease. This book contains practical strategies for dealing with the stressful symptoms of Alzheimer’s, including memory loss, behavior problems, and physical dysfunction, and explains the roles of proper nutrition and exercise in helping to lessen the severity of some symptoms.
 
Finally, this book provides suggestions for ensuring your own health and well-being by asking for help from others. It also gives you important information about financial and legal planning for the future.
 
Chapter 1 covers your role as a caregiver and describes the many responsibilities you will need to undertake during the course of the disease. You’ll also learn what to expect after a diagnosis of probable Alzheimer’s disease is made.
 
Chapter 2 answers the most commonly asked questions about Alzheimer’s disease, including how it is diagnosed, the symptoms, and treatments that may help alleviate symptoms. It also covers the steps entailed in enrolling the person with Alzheimer’s in studies to test experimental treatments.
 
In chapter 3 you’ll learn strategies for coping with the memory and communication problems that can be among the most difficult for caregivers to handle. Techniques will include the use of memory aids, exercises to help the person stay oriented in the environment, and strategies to improve communication skills, which are often affected by memory loss.
 
Chapter 4 presents techniques that help alleviate mood and behavior problems. You’ll learn how to reduce the person’s feelings of depression, anger, or listlessness; how to handle suspiciousness and hallucinations; how to respond to combative or inappropriate behaviors such as clinging, making constant demands, losing or hoarding things, and repetitive actions.
 
Chapter 5 offers strategies for helping with physical problems so that the person with Alzheimer’s is as safe and comfortable as possible in the home and community. Physical aids that assist in maintaining balance and coordination are covered. Techniques for helping with personal hygiene and incontinence are also addressed.
 
Chapter 6 covers your role in helping to manage the person’s medical problems, such as vision, hearing, dental problems, and pain. Medications that are sometimes prescribed to treat symptoms are covered. This chapter also contains a section on selecting a physician and other health professionals who are experienced in caring for people with Alzheimer’s disease, and what to do if hospitalization is required.
 
Chapter 7 covers the importance of good nutrition in helping to reduce the severity of certain symptoms. Meal planning and preparation tips are offered, as well as information on helping with eating and swallowing.
 
Chapter 8 discusses the benefits of exercise, socializing, and other activities in helping the person with Alzheimer’s make the most of his or her remaining years.
 
Chapter 9 provides guidelines for making other living arrangements, such as a nursing home or other long-term care facility, when appropriate. The types of facilities available and tips for evaluating them are discussed.
 
Chapter 10 covers the financial and legal issues you must consider when the person for whom you are caring can no longer handle these matters. Concepts such as power of attorney and living wills are discussed, as well as other documents you will be asked to complete on the other person’s behalf.
 
In chapter 11 you’ll learn strategies for coping with the emotional and physical stresses of caregiving so that you can stay healthy and avoid burnout.
 
Chapter 12 is a Resource Guide that includes names, addresses, and phone numbers of organizations to contact for more help and information.
 
Remember, caregivers around the country and around the world face many of the same problems and experience many of the same feelings that you do. You are not alone, nor should you be.
 
By trying the strategies suggested in this book, communicating with knowledgeable health professionals, and securing appropriate support when needed, you will succeed in providing the compassionate care a person with Alzheimer’s needs to preserve as much happiness and dignity as possible during the course of this devastating illness. You will also be in a better position to preserve your own health and well-being during this painful process.