Muriel R Gillick - The Caregivers Encyclopedia: A Compassionate Guide to Caring for Older Adults

The Caregivers Encyclopedia

A Johns Hopkins Press Health Book

Note to the Reader: This book is not meant to substitute for medical care, and treatment should not be based solely on its contents. Instead, treatment must be developed in a dialogue between the individual and his or her physician. Our book has been written to help with that dialogue.

Drug dosage: The author and publisher have made reasonable efforts to determine that the selection of drugs discussed in this text conform to the practices of the general medical community. The medications described do not necessarily have specific approval by the US Food and Drug Administration for use in the diseases for which they are recommended. In view of ongoing research, changes in governmental regulation, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert of each drug for any change in indications and dosage and for warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently used drug.

2020 Johns Hopkins University Press

All rights reserved. Published 2020

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Library of Congress Cataloging-in-Publication Data

Names: Gillick, Muriel R., 1951 author.

Title: The caregivers encyclopedia : a compassionate guide to caring for older adults / Muriel R. Gillick, MD.

Description: Baltimore : Johns Hopkins University Press, 2020. | Series: A Johns Hopkins Press health book | Includes index.

Identifiers: LCCN 2019015992 | ISBN 9781421433578 (hardcover : alk. paper) | ISBN 1421433575 (hardcover : alk. paper) | ISBN 9781421433585 (pbk. : alk. paper) | ISBN 1421433583 (pbk. : alk. paper) | ISBN 9781421433592 (electronic) | ISBN 1421433591 (electronic)

Subjects: LCSH: Geriatric nursingEncyclopedias. | Older peopleHome careUnited StatesEncyclopedias. | Older peopleMedical careEncyclopedias. | Older peopleCareUnited StatesEncyclopedias.

Classification: LCC RC954 .G55 2020 | DDC 618.97/023103dc23

LC record available at https://lccn.loc.gov/2019015992

A catalog record for this book is available from the British Library.

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The Caregivers Encyclopedia

Dear Caregiver,

Caregiving is one of the loneliest jobs, even though its performed regularly by forty-five million people in the United States, most of whom are caring for an aging parent. Usually that means the person you are helping is over age sixty-five but, in practice, she is probably over seventy-five, quite possibly over eighty.

You will find many authorities telling you what to do in your role: exhorting you to take care of yourself, urging you to join a support group, instructing you how to manage distressing symptoms such as belligerence or incontinence. Im not going to tell you what to do. Rather, the idea behind this book is to provide a kind of tour guide to the land of medicine. Based on my experience as a physician, I will tell you what I think you need to know about the lay of the land, about the local customs, and the relevant background. For the tourist using a travel guidebook, the background might be history, geography, and politics; for you, the background might be geriatric medicine, Medicare regulations, and health services research. Ill share with you some important information about basic geriatric syndromes such as delirium, dementia, and falls; Ill discuss what Medicare covers and what it doesnt; and Ill bring you up to date on different approaches to care such as PACE (Program of All-Inclusive Care for the Elderly) and Guided Care that you might want to explore for your family member. Sometimes, I will make a strong recommendationjust as the tour guides tell you about cant miss sitesbut much of the time my goal is to inform you of your options and let you choose the one that makes most sense to you. I will tell you what is fact and what is my opinion, and when I offer a personal perspective, I will tell you why I think what I do. For example, I will tell you that the hospital is a perilous environment for a frail, older person. Thats a fact, not an opinion. I will then go on to say that it is often better to be cared for at home than in the hospitalbut thats my opinion since we dont have much information on how home care (even with physician and nursing involvement) compares to hospital care in terms of either beneficial outcomes or hazards, except in a few select cases. Finally, Ill suggest that whether you choose home or hospital care should depend both on the services available and the particular kinds of risks your relative is willing to take.

The reason for providing you with information is twofold: first, so that you can better manage the medical problems your family member has, both acute and chronic problems; and second, to help you think through medical decisions. With respect to managing diseases, you are likely to find yourself playing an increasingly large role in dealing with everyday issues such as taking medications, going to medical appointments, monitoring health indicators (for instance, blood pressure), and administering treatment (for example, changing dressings on a wound). Ideally, your relative will be engaged in her own health care, but various disabilities may prevent her from doing everything herself. You will also need a partner in your family members physicianor the nurse practitioner or physician assistant who works with her physicianbut you will be an effective partner only if you are knowledgeable about your relatives medical conditions.

With respect to medical decision-making, you and your relative will have to make all sorts of choices: whether to get care in the hospital or at home, whether to enroll in hospice, whether to sign a do not attempt cardiopulmonary resuscitation order, and whetherand howto fill out a POLST form (Physician Orders for Life-Sustaining Treatment). You will be involved in decisions about whether to perform screening examinations such as colonoscopy and mammography and whether to use potentially burdensome but possibly life-prolonging treatment such as dialysis or chemotherapy. The list goes on and on. I hope to equip you to engage in the complex process of decision-making, recognizing that it will often appear daunting. I will spend a good bit of time talking with you about your relatives goals of care and how figuring out her priorities can shape the decisions you make together. You will soon discover that managing your family members medical problems is intimately related to making medical decisions: dealing with a problem, whether its acute or chronic, necessitates making decisions about what strategy is best in a given situation.

One of my first dilemmas in setting out to write this guide was figuring out what to call you. Technically, you are an informal caregiver, which is a euphemism for saying you are not paid and you are probably not a professional. Some people refer to you as a care partner to emphasize the collaborative nature of your work; in England you would be called a carer. I have decided to stick to the term commonly used in the United States, which is caregiver, because in this book I focus on all that you are