Alzheimer’s and Dementia: A Practical and Legal Guide for Nevada Caregivers

By Kim Boyer and Mary Shapiro

            Individuals or families receiving a diagnosis of Alzheimer’s disease, dementia, or brain damage from a stroke face daunting questions: how to provide for care when the patient can no longer manage his or her own affairs, how to protect their rights and property, where to go for help, and how to cope with the day-to-day challenges of fading memory and diminished cognition. Here is a comprehensive guide specifically for aging Nevadans and for family members, professional caregivers, and health care workers who help them.
The authors—an elder law attorney and a specialist in geriatric care management—offer readers useful advice from the perspective of Nevada resources and Nevada law, addressing such topics as the legal and financial steps that patients and their families can take to protect themselves and their assets, paying for long-term care, arranging for guardianship, and tending to the details that follow the death of a loved one.
 This edition, updated in 2011, includes information about recent changes in laws that affect seniors, new research and treatments, and a new guide to resources throughout the state that can provide assistance to people afflicted with these medical conditions.

• Language: English
• Publisher: University of Nevada Press
• Release date: Oct 1, 2011
• ISBN: 9780874178630

Book preview

Alzheimer's and Dementia

A PRACTICAL and LEGAL GUIDE for NEVADA CAREGIVERS

KIM BOYER

MARY SHAPIRO

UPDATED

UNIVERSITY OF NEVADA PRESS

Reno & Las Vegas

University of Nevada Press, Reno, Nevada 89557 USA

Copyright © 2006 by University of Nevada Press

New material © 2011 by University of Nevada Press

All rights reserved

Manufactured in the United States of America

Design by Barbara Haines

Library of Congress Cataloging-in-Publication data

Boyer, Kim.

   Alzheimer's and dementia : a practical and legal guide for Nevada caregivers / Kim Boyer, Mary Shapiro.

              p. cm.

   Includes index.

ISBN 0-87417-660-3 (pbk. : alk. paper)

   1. Alzheimer's disease—Nevada. 2. Alzheimer's disease—Law and legislation—Nevada. 3. Dementia—Nevada. 4. Dementia—Law and legislation—Nevada. 5. Caregivers—Nevada. I. Shapiro, Mary. II. Title.

RC523.B69 2006

   362.196'831009793—dc22

Updated edition: 978-0-87417-858-6

ISBN 978-0-87417-863-0 (ebook)

To my parents, Benjamin and Theresa Klein, who taught me the meaning of compassion; to my beloved sister, Cornelia, an equal partner in caring for our mother; and to my husband, Leonard, whose support means everything.

Mary

To Mom and Dad, thank you for all your love, support, and encouragement.

Kim

And together,

we dedicate this book to the heroes we have met on this journey.

CONTENTS

Preface

Acknowledgments

CHAPTER 1 The Journey Begins

Beth and Alice's Journey

Harry's Journey

Is It Dementia or Just a Normal Part of Aging?

Dementia

Alzheimer's Disease

Vascular Dementia

Lewy Body Dementia

Parkinson's Disease

Obtain a Diagnosis

Avoid a Misdiagnosis

Normal Pressure Hydrocephalus

Depression

Medication Overload

Loss of Vision or Hearing

Poor Nutrition

Are You on a Journey?

CHAPTER 2 Getting the Right Medical Care

Finding the Right Physician

Preparing for the Doctor's Appointment

The Comprehensive Assessment

Cognitive Testing

The Caregiver's Interview

Receiving the Diagnosis

What to Tell Your Loved One

Treatment

Clinical Trials

The Progression of Alzheimer's Disease

Alan and Martha's Journey

CHAPTER 3 Techniques to Help the Caregiver

Beth and Alice's Journey

Alan and Martha's Journey

Recognize Loss of Control

Call a Family Meeting

Hate the Disease, Not the Person

Eyes and Ears

Pick Your Battles and Go with the Flow

The Best Time to Get Things Done

Eating

Keep It Simple

Medication Management

Bathing

The Car Dilemma

I Want to Go Home

Go with the Flow

Nonverbal Communication

Keep It Light

Avoid Big Changes to the Environment

Clear Out the Closets

Anger and Violence

Mary and Jim's Journey

What about Sex?

Activities

Support Groups for the Caregiver

Support Groups for the Memory Impaired

CHAPTER 4 Planning for Incapacity

Advance Directives for Health Care

Living Wills

Steps for Completing a Living Will

Steps for Revoking a Living Will

Limitations on Living Wills

Durable Power of Attorney for Health Care

Steps for Completing a Health Care Power of Attorney

Limitations on Health Care Powers of Attorney

Patient Self-Determination Act

Common Questions about Advance Directives

Do-Not-Resuscitate Orders

HIPAA Authorization

CHAPTER 5 Finding the Type of Care You Need

Care Options

There's No Place Like Home

Home Health Care Agencies

Social HMOs

Geriatric Care Managers

Moving Your Parent into Your Home

Respite Care

Senior Centers

Adult Day Care

Assisted Living Facilities

Memory Care Facilities

Group Homes

Homes for Individual Residents

Nursing Homes

Hospice

Choosing a Facility

Understanding Patient's Rights

Nevada Patient's Rights

Federal Patient's Rights

Monitoring the Situation

Handling Possible Abuse

CHAPTER 6 Paying for the Cost of Care

How to Pay for Nursing Home Care

What about Medicare?

What Is Medicaid?

Applying for Medicaid

Exempt Assets and Countable Assets

What Must Be Spent?

Joint Accounts

Medicaid Planning for Married Couples

Spousal Support

Case Study: Division of Assets and Spousal Support

Case Study: Equal Division of Assets

Case Study: The Income Cap

Giving Away Assets

Exceptions to Transfer Rules

Tax Consequences of Gifts

The Medicaid Spend-Down

Basic Spend-Down for Married or Single Applicants

Spend-Down for Married Couples

Trusts

Will I Lose My Home?

Other Payment Sources

Veterans' Nursing Home

Veterans' Aid and Attendance Benefits

CHIP Program

Long-Term Care insurance

Legal Assistance

CHAPTER 7 Getting Financial and Legal Matters Organized

Financial Steps

Assess Finances

Review Benefits and Insurance

Handle Finances Wisely

Plan Your Estate

Why Plan Ahead?

Updating Your Planning When a Loved One is Ill

Power of Attorney for Assets

Wills

Trusts

Living Trusts

Irrevocable Trusts

Testamentary Trusts

Supplemental Needs Trusts

Steps to Take

Joint Tenancy

Pauline's Journey

CHAPTER 8 Guardianship and Probate

Guardianship Overview

Functions of the Guardian of a Person

Functions of the Guardian of an Estate

The Appointment Process

Level of Capacity for Obtaining a Guardianship

Emergency or Temporary Guardianship

Tax Issues

Exploitation

Stop the Exploitation

Consideration of Legal Action

Challenges When a Family Member Is the Exploiter

Nevada Law Regarding Financial Exploitation

What to Do Following a Death

The Probate Process

Conclusion

Appendix 1: Guide to the Family Meeting

Appendix 2: Community Resource Guide

Appendix 3: Advance Directive Forms

Suggested Reading

Index

PREFACE

By taking on the responsibility of caring for your parent or spouse, you are embarking on a difficult journey. Your emotions can range from denial to heartbreak. Your relationship with this person is no longer the same. It is easy to feel overwhelmed and isolated. In this book, we provide practical information and useful suggestions to make the everyday things of life easier for caregivers. Following is a summary of the steps to take to help you get the best care for your loved one.

1. Confirm the Diagnosis It is important to confirm the diagnosis so that your loved one can receive the proper treatment. A surprising number of people are falsely labeled with the diagnosis of dementia. Chapter 1 discusses the signs and symptoms of memory loss, and differentiates between normal aging and dementia. It also clarifies the difference between Alzheimer's disease and dementia, and discusses some of the most common dementias.

2. Select the Right Doctor Finding the right physician is crucial to getting good care. In chapter 2, we describe where to go for the proper medical diagnosis and what that assessment is like. Only by finding the right physician can the proper treatment begin. Chapter 2 discusses how to select the right doctor and how to make the most of your doctor's visits. The caregiver has to know the right questions to ask and how and when to tell the loved one about his or her illness. A good doctor can provide helpful suggestions in dealing with caregiving dilemmas and can help you understand the progression of the disease.

3. Learn Practical Strategies for Dealing with Your Loved One Chapter 3 is devoted to helping the caregiver manage the most common challenges. You will get tips on many issues, ranging from how to deal with unsafe driving to intimacy issues, violence, and bathing. Our goal in this chapter is to give the caregiver practical tools and strategies. One tip that works for you can save you and your loved one much frustration. Consider joining a support group. It is often beneficial to have the support of others who are going through what you and your family are experiencing. Not only can you begin to feel a sense of community and to learn the types of resources that are available, but you can also gain a better understanding that the concerns, fears, and anger you may be experiencing are quite normal. If this sounds like an avenue worth pursuing, then call the appropriate association for a list of support groups. A list of associations is contained in the resource guide in appendix 2. If you are not the type to join groups, that is okay, too.

4. Discuss Health Care Planning and End-of-Life Issues It is important to get advance directives in place as soon as possible. If you wait too long, your loved one may not even remember how to sign his or her name. Ask your doctor if he or she is comfortable with your health care treatment wishes. Some physicians may not be comfortable with the way you and your loved one would want to handle things as the disease progresses, or they may be in total agreement with your wishes. In either case, the time to find that out is now, when the conversation can be held in a non-emergency-type setting and when everyone may still be able to participate. Chapter 4 discusses advance directives for health care. It is important to have this discussion while your loved one can still express wishes.

5. Get the Best Care for Your Loved One Family and friends may want to help out but don't know what to do. If you ask for help, some will be relieved to know what they can do, whereas others will decline, but it is okay to ask. At some point, you'll need professional help. Chapter 5 discusses the steps you can take to help find the best and most appropriate care for your loved one whether at home, an assisted living facility (ALF), or a nursing home. We also discuss how to protect the rights of your loved one in a facility.

6. Develop a Plan for Paying for the Cost of Care Medicare and private insurance do not cover the cost of custodial care. When one spouse is admitted to a nursing home, the average couple's entire life savings can be wiped out within one year. For both spouses, control over their money is gone, and with it go the security, independence, and dignity that they worked all their lives to attain. But this doesn't have to happen. We will provide steps you can take to protect your assets. You may not want to think about government benefits. But most families are financially unprepared to pay many of the health care costs a dementia patient incurs. Paying for the cost of care is discussed in chapter 6. With proper planning, you can help protect your family's financial security and provide peace of mind. Unlike other books that provide general rules that may not apply to your state, we concentrate on Nevada law so you know what the rules are in Nevada.

7. Get Your Financial and Legal Affairs Organized It is critical that you and your loved one have a chance to put the proper planning in place while there is still time. When a loved one is diagnosed with dementia, the situation becomes more complicated. The law requires that the person with dementia have the legal capacity to execute documents. For that reason, it's important that these steps be taken now. Items to consider are a power of attorney for financial decisions, will, or trust. You may not have wills and trusts in place, or your current legal documents may no longer be appropriate. It is important to review title to real estate and other property. In some cases, if this is not handled properly now, then dealing with the property later could require a court proceeding. Chapter 7 discusses these important documents and Nevada law.

8. Plan Early to Avoid Guardianship and Probate Without proper planning, the legal aspects of protection become much more complicated, expensive, and many times disagreeable. Acting early can save you money and time, and provide peace of mind. Your loved one may refuse to engage in early planning, or the illness strikes suddenly and there is no time for planning. When that happens, a guardianship or a probate may be needed. Chapter 8 discusses the guardianship and probate process in Nevada.

9. Ask for Help Many caregivers do not know how or where to start getting the help and support they desperately need and will continue to need during this journey. There are many resources available in the community, and we've included a resource directory to help get you started. This resource directory is specific to Nevada and contains a variety of resources that many people do not access because they don't know about them. Use this resource directory to get information, referrals, and assistance.

10. Enjoy the Precious Moments Take time to enjoy each precious moment you have with your loved one. Our culture stops short when thinking about the life cycle. We plan for childhood, adolescence, youth, and the middle years, but not our own aging. Death is a word seldom used and certainly not in relation to those we love. But denial will not make illness go away. Growing old is part of the natural order of life. Aging is not a disease. Dementia is.

The vignettes we offer will sound familiar to many who read this book. They are culled from experiences related to us from our clients and are meant to let you know that you are not the only one dealing with the challenges of dementia. By combining the professional experience of an elder law attorney and a geriatric care manager, it is our hope that our advice will lead to successful and positive solutions for the Nevada caregiver.

Caregiving is a life-changing experience. It can be the worst thing that ever happened to you and the best thing you have ever done. We wish you Godspeed on your journey.

ACKNOWLEDGMENTS

We gratefully thank all those who helped and guided us with this book.

Charles Bernick, MD, neurologist at the Cleveland Clinic Lou Ruvo Center for Brain Health, Las Vegas, graciously reviewed the medical portions of the book and made wonderful suggestions. Kenneth Doka, Ph D, professor of gerontology at the College of New Rochelle, New York, Lutheran minister, sociologist, associate editor of Omega, and editor of Journeys, was so generous with his sage advice and comments. The team at Boyer Law Group has provided constant support and encouragement. Cornelia Kopp made sure we crossed the I's and dotted the T's.

We are indebted to our professional colleagues Marjorie Slavin, MSW; Jo Voege, MS; Jeri Giallanza; and Joyce Brozovich who read our manuscript and offered great suggestions and kind praise. Margaret F. Dalrymple, editor at the University of Nevada Press, helped us each step of the way to see this book to its completion and publication, and we are extremely grateful for her good counsel and patience. Much thanks to managing editor Sara Velez Mallea