Calistoga Press - Understand Alzheimers: A First-Time Caregivers Plan to Understand & Prepare for Alzheimers & Dementia

Copyright 2013 by Calistoga Press, Berkeley, California

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ISBN: Print 978-1-62315-300-7 | eBook 978-1-62315-301-4

Introduction

W hile you may not know much about Alzheimers disease, you most likely do know someone in your lifea relative, a friend, or a neighborwho has been diagnosed. You have heard how this devastating, elusive disease changes people and their families irrevocablyaltering behavior, reducing normal functioning, and robbing people of cherished memories.

If you are reading this book, you are probably grappling with a recent diagnosis of someone close to you and wondering how you can best support that person, now and as the disease progresses. You may even be considering becoming that persons primary caregiver. But what does being a primary caregiver actually mean and require? Are you the best-equipped person to care for your loved one, and if so, what do you need to know to manage the care of the patient, as well as yourself? As you search for answers and validation, you also may be searching for a clear understanding of what an Alzheimers diagnosis means both medically and emotionally. Finally, you may be unsure whether the important role of caregiver is the best option for you or your loved one and need a resource to help you weigh options and provide facts necessary to help you commit to this life choice.

This book endeavors to supply the facts and separate them from the myths you may have heard about the disease, and to give you useful, step-by-step, up-to-date information throughout each of the progressive stages of Alzheimers disease. This information will help you make the decision about the level of participation in caregiving that will match your abilities, your loved ones financial situation, and the realities of your own life and commitments.

Caregivers take many roles and come from many different relationships with the person who needs care. Instead of becoming a primary caregivermaking a round-the-clock, live-in commitment to your loved oneyou can make certain that the person with Alzheimers lives in a safe environment, receives the assistance he needs with activities of daily living, and has an appropriate level of supervision without taking care of all of his needs yourself. Your loved one may not need round-the-clock supervision until the disease reaches its severe stage, making it possible for you to serve as a part-time caregiver for a few hours a day. Perhaps the person only needs help with managing finances, mail, and transportation, allowing you to provide these services on an as-needed basis.

You may find that you are able to share the caregiving responsibility with other family members: siblings, children, grandchildren, or nieces and nephews. Even if you are unable to directly support your loved one, you may still be instrumental in providing support to the primary caregiver(s). The more information you have about Alzheimers disease and its progression, the more genuinely helpful you can be to your family members.

Its also possible that your loved one with Alzheimers has the financial means to allow you to hire support from a home health agency or to relocate the person to one of the many excellent assisted-living facilities that provide memory care. If so, while you will not need to provide the primary care yourself, your role in supervising your loved ones care in such a living situation is just as instrumental to the persons quality of life. It will be up to you and your family to provide outings, visits, shopping, financial management, and other services as your loved one loses the ability to perform these tasks. You will also need to be vigilant, making certain that the facility youve chosen provides the high-quality, compassionate care your loved one needs and deserves.

While this book is a guide to understanding the caregiving role in general, many of the chapters are directed toward the role of the primary caregiver. If you decide to take on this role, you will face elements of the caregiver job that task you physically, mentally, emotionally, and spirituallybut you may also be embarking on one of the most rewarding experiences of your life.

Caution: Life Changes Ahead

When you become the caregiver for a person with Alzheimers, you can expect your life to mold itself around the daily routine and needs of that person, not the other way around. You are likely to take on tasks you never imagined yourself doing with adults, especially if they were once caregivers to you. You will need to keep them safe in their own home and eventually assume more responsibility of their daily needs such as assisting with bathing, dressing, and personal hygienea role reversal that you may find challenging on many levels. You may find your sleep interrupted and your paid work difficult to complete. You may have no idea what will come next as control over your well-ordered life transfers to forces outside yourself.

This guide will help you navigate the twists and turns of Alzheimers disease, from the minor forgetfulness that marks its early stages to the dramatic effects of the late-stage illness. Becoming familiar with the symptoms and behaviors of Alzheimers will help make the advancement of the disease more predictable, and will help you prepare your home, your loved one, and yourself for the situation that comes next. Each chapter addresses a specific aspect of the disease and the way it may affect your caregiving role.