“But I Don't Want Eldercare!” Helping Your Parents Stay As Strong As They Can As Long As They Can
What Others Have To Say
During his 15 years of public service in Washington, Terry Lynch worked to improve the lives of American school children and people with disabilities. This superb book enhances all our lives.
Gene Eidenberg, Assistant to the President and Secretary to the Cabinet, Administration of President Jimmy Carter, 1978—1981
Terry Lynch shares his caregiving experiences in a wonderful, thoughtful and down-to-earth guide to helping elders maintain their independence and dignity.
Ken Dychtwald, Ph.D., CEO of Age Wave and Author of Age Wave, Healthy Aging and The Power Years.
If this unique guide had been available during my time at Yale, it would no doubt have become one of our Worklife program's most vital resources for caregiving employees.
Peter D. Vallone, Associate Vice President for Administration, Yale University (Retired)
Terry Lynch helped me find the courage to resist extraordinary pressure from the healthcare system to place my father in a nursing home after his stroke. Then Terry helped me with a homecare plan that lead to a recovery by my dad that was nothing short of astonishing.
Cory Jacobson, Owner, Phoenix Theatres, Detroit, Michigan
One of Terry Lynch's chapters is "Making Things Happen." It could just as well have been the title of this incomparable book.
Anthony J. (Toby) Moffett, Chariman, PLM Group, Washington D.C.
Terry Lynch shows us that knowledge about services is not enough. Caregiving also takes tenacity and courage. This book is compelling and brave.
Stephanie Sue Stein, Director, Milwaukee County Department on Aging
Invaluable asset preservation strategies for elders and their families.
David P. Jordan, Jordan Financial Life Planning, Kenosha, Wisconsin
With this empowering book as my guide, I helped a dear friend leave a nursing home for a new and fulfilling life in her community.
Genevieve Sesto, Racine, Wisconsin
I know of few professionals more skilled at helping families take control of their lives than Terry Lynch. The illuminating stories in this book, alone, can change your life.
John Pride, Chief, Family and Community Partnerships Branch (Retired) Office of Head Start, U. S. Department of Health and Human Services
A welcome, straightforward resource for families confronting the everyday challenges of caring for frail elders or other family members with disabilities.
Rhonda J.V. Montgomery, Ph.D., Helen Bader Endowed Chair in Applied Gerontology, University of Wisconsin-Milwaukee
Terry Lynch's exceptional book inspired and guided our daughters in their successful efforts to get their grandmother through a hospitalization, nursing home stay and back to her home.
Robert Drisner, Palm City, Florida; Past Member, Board of Trustees, American Hospital Association
Life does not have to end at the nursing home door and Terry Lynch illustrates how families and staff can ensure that it doesn't. Every administrator committed to fostering a "person-centered" nursing home culture must read this book.
Erik Scribner, St. Paul Elder Services, Inc., Kaukauna, Wisconsin
Terry Lynch shows us that eldercare services are not only about coping with increasing dependency — he guides us to solutions that preserve and restore the independence of older people, and their families' peace of mind.
Karen Musser, CEO, Care Wisconsin First, Madison, Wisconsin
"But I Don't Want EldercarePare!"
Copyright
Helping Your Parents Stay As Strong As They Can As Long As They Can
By Terry Lynch
Smashwords Edition
Copyright © 2008 Terry Lynch
Published by The Legal Center for People with Disabilities and Older People
455 Sherman Street, Suite 130
Denver, Colorado 80203
All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without written permission from The Legal Center, except for the inclusion of brief quotations in a review.
This publication
is designed to provide accurate and authoritative information with
regard to the subject matter covered. It is sold with the
understanding that the publisher and the author are not engaged in
rendering legal, accounting, or other professional advice. If legal
advice or other expert assistance is required, the services of a
competent professional person should be sought.
First Edition
Publisher's
Cataloging-In-Publication Data
(Prepared by The Donohue Group, Inc.)
Lynch, Terry (Terry Philip), 1938-
"But I don't want elder care!" : helping your parents stay as strong as they can as long as they can / Terry Lynch. -- 1st ed.
p. ; cm.
Includes index.
ISBN: 978-0-9770179-8-0
1. Aging parents--Care--Handbooks, manuals, etc. 2. Older people--Care--
Handbooks, manuals, etc. 3. Caregivers--Handbooks, manuals, etc. I. Title.
HQ1063.6 .L963 2008
306.874084/6 2008927539
Cover and Book Design by MacGraphics Services
Edited by Terry Folkedahl Backmann (Wisconsin) and
Joyce Miller, Integrated Writer Services
Production coordinated by Mary Anne Harvey and Julie Z. Busby, The Legal Center
Indexing by Katie Banks, Eagle-Eye Indexing
Printing by United Graphics, Inc.
TABLE OF CONTENTS
Chapter 1: What Is It All About?
Chapter 2: Preventing Problems and Overcoming Those You Can't Prevent: Eight Rules
Chapter 3: How Can I Help My Parents If I Can't Get Through to Them?
Chapter 4: Advance Planning: A Very Good Idea
Chapter 5: Take Advantage of Your Natural Resources
Chapter 6: Your Life Is Important Too!
Chapter 7: Getting a Jump on Trouble
Chapter 9: Making Things Happen
Chapter 10: Illustrations: Deciding What Is Best in Difficult Situations
Chapter 11: Prepare for What Might Happen. Be There When It Does.
Chapter 12: Establish Your Authority
Chapter 13: Never Let Your Guard Down
Chapter 14: Work on the Labels Right Away
Chapter 15: Beware the Self-fulfilling "Hopeless" Assessment
Chapter 17: Think Big. . .and Take Small Steps
Chapter 18: Finding In-Home Helpers in All the Right Places
Chapter 19: Creating a Safer Home
Chapter 20: I Want Mom to Stop Driving. But Then What?
Chapter 21: Edna: Almost, but Not Quite
Chapter 22: Your Overloaded Life May Tip the Balance
Chapter 23: Go Out of Your Way to Find Homelike
Chapter 24: How Do We Find the Best Place?
Chapter 26: Managing Life Day-to-Day
Chapter 27: Build a World Within the Nursing Home World
Chapter 28: Handling Bad Situations. And Worse.
Other books published by The Legal Center:
Foreword
I first met Terry Lynch in 1981 when he was the program officer for a newly created national protection and advocacy system for people with developmental disabilities funded by the U.S. Department of Health and Human Services in Washington, DC. He was insightful, energetic, and extraordinarily helpful in advancing the mission of these programs, and he became the standard against which I evaluated the assistance of other government program staff.
When Terry left Washington to return to Racine, Wisconsin, in 1985, we maintained our friendship, and I had the privilege of meeting his mother Leila who was the inspiration for this book.
I also had the opportunity to hear Terry's presentation on caring for aging parents at a conference. I carried the concept of Terry's "campaign for Leila" with me over the years, and it served me well in the final chapters of my own parents' lives not so long ago.
I was delighted to learn that Terry intended to share his experience and his advice in a book. After reviewing Terry's manuscript and deliberating with my colleague Randy Chapman, we recommended to our Board of Directors that The Legal Center publish this book. They enthusiastically agreed.
The Legal Center's history is about people living in the community— either moving people out of institutions and nursing homes—or keeping them from going into these places. In our formal role as Colorado's Protection and Advocacy System, and as the administrator of Colorado's State Long-Term Care Ombudsman Program, we have embraced the values of empowerment, self-determination, independence and inclusion. We understand firsthand what happens to people who are denied these opportunities.
Terry Lynch's book is an important consumer empowerment resource. It is easy to understand, and it is inspiring. We have only to look at the current state of long-term care and the approaching wave of baby boomers to understand how important it is to change how we care for our parents and ourselves in the future. People who are able to stay in their own homes are healthier and happier.
We have a major obligation to educate people about their rights, and we also believe that this information should be accessible and understandable. Neither the law nor human services systems are necessarily consumer friendly. We must provide information to help people understand the law and make their way through the human services and health care mazes they encounter.
Diverting older people from nursing homes after a hospitalization is truly an option, and Terry's book gives life to that possibility. Nursing home care is the most expensive option for individuals or their families, and the publicly funded system often provides inferior care. By helping people remain as independent as possible and supporting them in home or home-like environments, we are able to see better outcomes and better quality of life. We are proud to bring this publication to life and share this message with all of you.
Mary Anne Harvey
Executive Director
The Legal Center for People with Disabilities and Older People
Publisher
Author's Note
Late in 2006 I asked Mary Anne Harvey, Executive Director of The Legal Center, to comment on the manuscript for this book. Mary Anne called to say they had suggestions for improving the book, but, beyond that, "How would you feel about us publishing it?" After collapsing in my chair, I replied, in my most professional manner: "Are you serious!?"
In May of 2007 I flew to Denver to meet with Mary Anne and Randy Chapman, The Legal Center's Director of Legal Services. We had worked together years before, across many miles, on behalf of people with disabilities. Twenty-two years later, The Legal Center was a force within the powerful National Disability Rights Network and I was allied with them in another important mission: promoting the best interests of older people and their families.
Randy Chapman is a prominent legal advocate and author with little spare time. At lunch in his favorite Denver diner he told me he had read my manuscript twice to be sure they should publish it. Then he asked what had motivated me to undertake the most demanding project of my professional life. I told him I could summarize it in three sentences:
“It shouldn't have happened to my mother, to me, or to many others I have met along the way."
“It doesn't have to happen." "
“I have to let people know!"
I am honored that Mary Anne, Randy, the Board and staff of The Legal Center have committed their time, talents and resources to this cause.
Without their help...
This book is much better than it would have been without friends who had little time to help but did so anyway. They include experts in healthcare, homecare, aging and social services, disability rights, financial and estate planning and residential services. The insightful comments of older people and of adult children concerned about their parents have been invaluable.
Many thanks to Therese Ahlers, Suzanne Barney, Suzy Breedlove, Heather Bruemmer, Bill Chandek, Maureen Eisenman, Sandy Engel, Ninna Frank, Bryna Fraser, Sonya Gottfredsen-Kromke, Mary Hanneman, Laura Hanson, Chris Hendrickson, Wendy Holt, Joan Karan, Marilyn Joyce, Todd Krewal, Hunter Moorman, Dave Paulson, Jean Rumachik, Nancy Schutz, Greg Schutz, Barb Tylenda, Robin Wilson and John Wray. You educated and energized me.
Lynn Breedlove, Marcie Brost, Dennis Harkins, Tom Hlavacek and John O'Brien guided me into the Wisconsin world of grassroots advocacy and enriched my understanding of the restorative powers of family, friends and community. And it's about time I told Roy Froemming, Terri Johnson, Pat Kelly, Mark Sweet and Susan Tess how much they taught me.
Lynn Breedlove has been a constant ally throughout the development of this book. Dick Joyce gave many productive hours between matches during two golf vacations. Anna Chavez has been extraordinarily generous with her time and talents.
Sandra Christensen got me through writer's block, inspired and encouraged me along the way and never said "not now" in response to my "please help me figure this out" calls. Terry Folkedahl Backmann brought to this project her enthusiasm, her formidable editing skills, and made me a better writer. Denise Krewal devoted hours of skilled and painstaking work to the Resource Appendix. Jana McLaughlin, a colleague and skilled professional photographer, literally donated her time and expertise to restoring the photographs for this book.
Any writer whose book and cover designer is not only talented and creative but also committed to his cause is more than fortunate. Kerrie Lian: Thanks for everything!
And then there is Wilsons' Coffee and Tea. I can't imagine a better office or community meeting place. Without your hospitality, friendship, support—and coffee — I would probably still be on Chapter 3.
To Leila Lynch
My lifelong teacher and My lifelong friend
How Did I Learn What I Know?
Introduction
In 1985 I left my federal government job in Washington, D.C. and moved back to Wisconsin to start an independent-living consulting business. I specialize in helping older people and people with disabilities remain as self-reliant and involved in community life as possible. Soon after starting my business I was living my work. It was then that my real education in "independent living" began.
Until her mid-70s, my mother, Leila Lynch, had been vigorously involved in life in Wisconsin, with an interlude in Colorado. I will refer to her as "Leila" (pronounced Lee-I-Lah). Leila was raised in western Wisconsin and was known as "a high-spirited girl" who rode ponies bareback on the Erickson family farm. She moved to Racine, Wisconsin at 21 to teach elementary school. Leila met and married my father, Gerry Lynch. On a whim, they moved to Denver, where I was born. I had a year to enjoy the Rocky Mountains before Gerry and Leila decided to return to Racine. Leila stayed home to raise me.
When I began high school she returned to teaching. Then she moved on to a contented and active retirement with my dad. After he passed away, Leila adjusted as well as one can and went on with life. In her late 70s, Leila's strength and vitality began to erode. She had several injuries from falls. During my last two years in Washington, she spent her winters with me.
When I returned to Wisconsin, Leila and I became housemates in our family home in Racine, a small city on Lake Michigan between Milwaukee and Chicago. Leila remained somewhat self-reliant while we were in Washington, but shortly after we moved back to Racine more injuries and a rapid decline in memory stole her ability to manage everyday life. I was no longer just a son. I also was my mother's caregiver.
Although Leila required constant care after that, she continued to find pleasure in life. She remained at home until her death in 1995 at 89. Relatively unique circumstances enabled me to provide Leila the help she needed: She and I were good friends, I could run my business from home, and we benefited from government programs that enabled me to employ in-home workers for several hours each day, often more. Leila had to spend most of her savings before she qualified for this government aid.
During those years with Leila, I:
worked with her physicians to find effective treatments for her medical problems;
helped her survive a series of medical crises;
developed a supportive network of neighbors, volunteers and in- home caregivers; and
tapped into a variety of helpful community services.
Ultimately, I also was able to manage my overloaded life.
This is the guide I wish I'd had before Leila's health problems changed both of our lives. It sums up what I learned in those years and in my work with other adult children, whose relationships with their parents sometimes have been more difficult than Leila's and mine. This book will help you get "smart" faster than I did—much faster.
I use real-life stories to illustrate this guide's themes and approaches to problem-solving. To protect the privacy of the elders and others in my stories, I use pseudonyms and sometimes change locations or facts that do not affect the point of the story (such as changing "son" to "daughter.")
Leila gave me permission long before she passed away to use her name and tell her story whenever it might help other families "...as long as you don't tell people the secrets only my hairdresser knows." When I mention some of her siblings (she had 10), I also use their real names.
This book is not about "how to do it my way." Its message is not that you and your parent should live together or that you should be involved with your parent to the extent I was. It will help you regardless of where your parents live, what the situation is, and what kind of relationship you have.
Keep in mind that I do not have medical training. I am not an attorney, social worker or financial advisor. This is a guide to making informed decisions written by someone who has been where you are.
“Will our parents be able to afford staying at home?” Although this guide is not about managing finances, applying what you learn here can help your parents remain at home and protect their savings.
Making the Most of This Guide
This book contains a wealth of information but navigating it successfully is not complicated. If you are open to new ways of thinking about problems and to taking advantage of opportunities you haven't seen before, this guide will work well for you. Always ask yourself: "How might I apply this story or this information to my own situation?"
The four chapters that comprise "Determining and Safeguarding 'What's Best' " are the foundation for using this book effectively and creatively. After reading them, you can pick and choose where you go next. For instance, "Helping Your Parents Long Distance" may be all you need for now.
However, reading the entire book will be helpful to you even if you and your parents are not in a difficult situation and it might prevent unforeseen nightmares. If you are already overwhelmed, finding time to read this guide from cover to cover may seem impossible. But it will be worth it. Some vital information is repeated, such as how to prevent injuries from falls.
You will learn what is "out there" to give you additional assistance with the issues that concern you and will be guided to valuable Internet sites that should be around for a long time. The book provides excellent information sources on topics not discussed at length, such as long-term care insurance. All information sources are listed in the Resource Appendix. Most are also included in the text.
Key Resources
Some organizations and government agencies are such invaluable information sources they merit listing here. They can guide you to national, state and local assistance on most topics discussed in this book. Their staff often have extensive knowledge of the communities they serve. To use these Key Resources effectively, when you are referred by one of them to another information source ask "Who would be the best person to speak to about this?"
This book refers you back to these Key Resources frequently, but do not limit your contact with them to those instances.
Area Agencies on Aging (AAAs)
AAAs are designated by states to plan and coordinate services for older people within a specific geographic area (cities, counties, or multi-county districts). They can connect you to agencies responsible for managing local aging services, and to every resource listed below.To find the AAA office that serves your parents' area go to the web site of the National Association of Area Agencies on Aging: www.n4a.org. Click on Links.
You will also find these agencies, along with other kinds of assistance, on the Eldercare Locator web site: www.eldercare.gov. You can call the Eldercare Locator at 1-800-677-1116.
Tribal aging offices
Aging services for Native Americans are coordinated through these offices. AAAs can provide the contact information.Independent Living Centers (ILC)
ILCs also serve specific areas within each state and promote full participation in community life for people with disabilities. Their independent living staff members are experts on innovative ways to maintain elders' self-reliance, and are familiar with many government and local services. Staff of our local ILC were among our best sources of assistance.The most efficient way to locate an ILC: Do an Internet search for "Independent Living Centers" + name of state (using Google, for instance).
Aging and Disability Resource Centers
You will find ADRCs in most states. They provide "one-stop- shopping" for community services. To find a local ADRC, call your Area Agency on Aging.Senior Centers
These typically are neighborhood or community centers that offer activities and services for older adults. Look in the Yellow Pages or contact an ADRC or AAA.2-1-1 services
Many communities are establishing information-and- referral services that are contacted by dialing 211. Go to: www.211.org.
You will find help with searching the Internet at your public library and also in many consumer-health libraries. To find the nearest consumer- health library, use the remarkable web site of the National Institutes of Health: www.medlineplus.gov. Click on Other Resources, then Libraries.
Determining and Safeguarding "What's Best"
Chapter 1: What Is It All About?
Derailed
"It's not as bad as it looks, Terry!" I was home from Washington for Thanksgiving 1983 and Leila greeted me at the door with those reassuring words. Not as bad as it looks? It looked pretty bad to me. Leila had two black eyes and a painful back injury. Her glasses were taped together. She had fainted the evening before.
Over dinner, Leila confessed that she had been fainting occasionally for more than a year. Once, her neighbors had pulled her out of the backyard bushes. She not only hadn't told me about these "little problems," she hadn't bothered her doctor with them, either.
Leila, 77, had struggled with health problems before, but this was where I said, "Life is now officially out of control." I had to do something about it before it got worse—for Leila and for me.
I did "do something about it," for the next 12 years. For much of the time, especially at first, I battled for Leila's survival and my peace of mind. Her health problems were a nightmarish mix of
fainting spells, the side effects of medications.
permanent memory loss and confusion, not caused by Alzheimer's disease, but probably by small strokes.
congestive heart failure (Leila's heart was not pumping efficiently).
high blood pressure.
a devastating bone disease, osteoporosis, that caused Leila to suffer multiple fractures. Brittle bones and fainting spells form a terrifying partnership. The worst injuries were painful "compression fractures" up and down her spine.
These health problems generated many crises. Outside forces were in charge of our lives. I worried about Leila. I worried about myself. I wondered if I would ever calm down and get a good night's sleep. I wondered when I would start living my own life again.
Back on the
Tracks
Gradually, surprisingly, life got better for both of us. Life improved because Leila remained motivated to "keep on going" and I learned how to take better care of her, and myself. However, we would have remained derailed had we not learned a vital lesson: We needed help. That help came from many sources, but none more important than the kind of assistance many elders will not accept: caregivers in their homes.
Leila and I learned that "eldercare" is about much more than "being taken care of." We learned that it can be a powerful force that transforms, and often saves, the lives of frail older people. It can preserve the mental and physical health of their family members, as it did for me.
Ultimately, with lots of assistance, I was able to help Leila enjoy a fulfilling life in our home despite her physical disabilities and the memory disorder that stole her ability to manage everyday decisions. My life became simpler, less chaotic and often enjoyable. We regained control over our lives and with that control came peace of mind.
If I knew at the start what I have included in this guide we would have been back in charge of our lives sooner, more of my mother's last years would have been good ones, and I would have enjoyed much more sleep.
Keep the
Flame Burning
The brighter the flame of motivation burns, the greater the power to make it through tough times.
At first, I thought that once things go wrong as you age they inevitably stay that way. I didn't realize Leila's life could get better again. To prepare for the dismal future I learned about medical services, in-home care, Meals on Wheels, wheelchairs and safety bars for bathrooms. It was useful to learn about them, but our situation didn't turn around until I understood that the key to staying in control of our lives as we age rests within ourselves. That key is motivation. If you can keep your parent's spirit alive, you can accomplish remarkable things.
I also learned how important it is to work at keeping your own flame burning. If you don't, you will lose control over your life, harming other relationships and your job performance. If you burn out, your parents are in trouble.
Remember: This is a guide to helping you do what is possible in your situation. It is not meant to make life more stressful if you can't go to the lengths that I did.
Try to
Rekindle a Dimming Flame
Leila's love of life was the force I could call on when things were bad. Not everyone is as fortunate. I hope this guide will help you revitalize the lives of parents whose motivational flame is burning low.
Preserve the
Quality of Each of Your Lives
To see what is "best," look for what it will take to keep life as good as it can be.
Assisting your parents to retain quality and dignity in their lives is the key to maintaining the flame. It keeps hope alive. With hope comes strength and remarkable power. Remembering what life was like when it was good —and seeing what it could be again—kept my mother and me motivated in times of crisis. "Let's get out of this hospital and have lunch on our front porch" worked more than once to get Leila back home and on her feet.
Once Leila was home, the desire to remain on the front porch kept her motivated to stay as strong and healthy as possible.
I made sure our lives were as normal and enjoyable as they could be. We had small dinner parties, went out to eat and took short trips. I had some social life, went on brief vacations and did other things to keep my spirits up. To preserve the quality of my life, I could not simply set it aside and live for my mother.
Being old does not mean you lose the right to decide what makes life worth living or the right to keep on living. Be cautious about deciding for an older person what "acceptable quality of life" means. You may decrease the quality of that life and put out the flame of motivation.
Even in the Darkest Times, Stay Focused on Quality of Life
Leila found that having me and other friends with her in the hospital made even the worst moments more tolerable. Life occasionally even seemed normal because we were with her. Some of you may be facing hopeless situations. Your parent may have advanced Alzheimer's disease or be in the late stage of some other terminal illness. The support and love you provide your parent in those circumstances will mean more than you can know.
Try to take pressure off yourself in heartbreaking situations. Sometimes improving quality means reducing stress and anxiety. This guide will help with this difficult task.
Many times throughout the "Leila-and-Terry Years," I was unable to follow my own advice. I would confide in close friends that I didn't see how I could keep going much longer. Usually, with their encouragement and after a good night's sleep, life looked better. The good times and the bad times taught me what I have included about coping with stress and anxiety in "Getting Strong Enough to Handle It."
I have never regretted those years. I still think of them with a sense of fulfillment. I hope this guide will help you find this sense of fulfillment as well.
Chapter 2: Preventing Problems and Overcoming Those You Can't Prevent: Eight Rules
Over the years I learned Eight Rules to follow as you help your parents keep life as good as it can be. The power of these rules has been reaffirmed many times through my experiences with other families.
Rule #1—"Old"
Is Never an Acceptable Explanation
Rob was repairing the roof of my home. When he learned about my work, he told me about his grandmother. Several years before, she had injured her hip so severely she could not walk safely even after therapy. The family and her doctor didn't want to put her through surgery because she was 82. She moved to a nursing home and used a wheelchair to get around. His grandmother lost interest in life. Her appetite diminished. Everyone was worried about her.
A new doctor took her case. He asked her why she hadn't had surgery to get back on her feet. She said she was too old. He told her she wasn't. Her heart was still strong. Rob remembered telling her, "Grandma, you could live for years. The doctor knows what he is doing. Where do you want to spend those years?" She listened to Rob and her children and took the physician's advice. When I last saw Rob his grandmother was walking again and living in her own apartment.
This rule applies to many situations—for instance, when we consider telling a parent "You should not do this anymore" even though she may have no significant problems with health, hearing, vision or mobility. "This" could refer to living at home, driving, taking vacation trips and other situations where safety becomes an issue. Check yourself. Why do you suggest this change? Is it strictly because of your parent's age? If so, think it over again.
Where there are legitimate safety issues, there may be less drastic ways to reduce the risk in your parents' lives. Steps to safeguard your parents' self-reliance are described throughout this book.
Rule
#2—Prevention and "Old Age" Do Belong in the Same
Sentence
Leila and Virginia, one of our terrific homecare aides, were having coffee on our front porch. I asked whether they had gone on their regular morning walk, which involved getting off the porch and walking partway down the block. Leila laughed and said to Virginia, "He expects me to live forever."
Don't ignore the obvious
As the media reminds us constantly, exercise and a healthful lifestyle can prevent many crises that hit us in old age, including strokes and heart Preventing Problems and Overcoming Those You Can't Prevent: Eight Rules attacks. Leila's aides and I helped her walk as much as possible to keep her strong enough to avoid more injuries from falls. She ate healthful meals. Now and then we talked her into doing safe "weightlifting" exercises approved by her physician. (See Chapter 19, "Creating a Safer Home".)
Leila's experience demonstrated what research has been telling us for some time: Even frail elders with chronic illnesses and mobility problems can benefit from carefully supervised exercise. For information on exercise appropriate for people over 50, see the Senior Health web page of the National Institutes for Health: www.nihseniorhealth.gov. Click on Exercise for Older Adults.
You and your parents should review the "Safety First" guidelines before they begin a new exercise routine. You will find information on healthful diets for elders at www.medlineplus.gov. Search for Nutrition for Seniors.
Many simple prevention steps can help your parents maintain quality of life. These two could have helped Leila remain self-reliant longer than she did.
Watch the
medications
If Leila had known that fainting spells might be a side effect of her blood pressure medication, some of her worst injuries and longest hospital stays could have been avoided. Medication side effects or harmful interactions often underlie life-wrecking events.
Some health problems are caused by medications that have been prescribed inappropriately. Many older people have prescriptions from more than one doctor. This can lead to harmful treatment decisions by a physician who is unaware of this situation. Remind your parent to take all her medications with her on visits to physicians she is seeing for the first time. If she will take them with her every time she sees a doctor, new or not, even better.
Adverse reactions to prescription drugs such as dizziness, dehydration, and loss of appetite can lead to devastating consequences, including falls, depression, confusion, hallucinations and malnutrition. ("The State of Aging and Health in America 2004," a report by the Merck Institute of Aging and Health, the Centers for Disease Control and Prevention, and the Gerontological Society of America.)
A pharmacist reminded me that over-the-counter medications, herbs and dietary supplements also can have harmful side effects and interactions. Emphasize to your parent that he should tell his physician about everything he is taking. Ask your pharmacist about potential problems.
For detailed information on herbs and dietary supplements, see the web site for the National Center for Complementary and Alternative Medicine: www.nccam.nih.gov. See the Resource Appendix, for more information on managing medications.
Prevent injuries
from falls
Helping Leila avoid falling accidents was one of my most anxiety- producing concerns. Falls are the leading cause of accidental death among Americans age 65 and older. Fifteen to twenty-five percent of all older people who suffer hip fractures will still be in long-term care facilities a year after their accidents. ("Preventing Falls and Related Fractures," National Institute of Arthritis and Musculoskeletal and Skin Diseases. Revised August 2005.)
Many of these devastating falls occur at home. Relatively simple modifications can reduce the risk of these accidents. They include improving lighting, removing scatter rugs, and making sure your parents' floors are not slippery. For Leila's protection, we carpeted every surface in our home, including the kitchen. (Not shag.) We even put outdoor carpeting on our front porch.
There is
specialized physical therapy for people with balance problems.
Difficulty with keeping one's balance should be approached as a medical problem, not as a normal part of aging. Always see a physician when these problems occur. Always be suspicious of medications' side effects or harmful interactions. See the web site of the National Safety Council for essential information on falls prevention in and out of the home: www.nsc.org. Click on Resources, Safety Issues, then Falls in the Home and Community.
Also see the web site of the Centers for Disease Control and Prevention: www.cdc.gov. Search for Falls Toolkit. The Toolkit provides a checklist of steps to take and hazards to avoid.
Take advantage of
the preventive services covered by Medicare
If Leila was alive today, she might be able to avoid osteoporosis, the disease that caused her bones to fracture. Now there are screening tests and treatments. Nevertheless, many older people continue to have experiences similar to Leila's. They are not aware that they have this disease until it is too late to prevent the life-changing injuries it causes.
Medicare covers only one-time preventive physical exams for new Medicare enrollees. However, in addition to osteoporosis testing it provides preventive screening for several other major diseases, including:
diabetes,
glaucoma,
heart disease, and
colon, cervical, breast, vaginal and prostate cancers.
Medicare also covers vaccinations against the flu, pneumonia and hepatitis B. It does not provide a number of important preventive services, such as routine annual hearing and vision exams, nor does it cover dental services. Consequently, it is important to watch for sensory losses and to be sure your parents receive regular dental care.
More About
Medicare
Your parents have a choice of two Medicare plans: Original Medicare or Medicare Advantage Plans.
Original Medicare
Original Medicare is administered by the federal government.
Part A helps pay for hospital care, short-term care in nursing homes following hospitalization, some home healthcare, and hospice care. There is no premium for Part A coverage.
Part B helps pay for doctors' services, diagnostic tests, medical equipment, ambulance services and other health costs. There is a monthly premium for most people.
Part D covers some medication costs. (See below.)
You may go to any physician who accepts Medicare payments and to any hospital.
You pay a set amount each year (deductible) before Medicare payment begins. After that, Medicare pays 80 percent of your covered medical costs and you pay 20 percent (co-payment).
Physicians who do not accept the Medicare-approved payment are allowed to charge up to an additional 15 percent of the total bill. If your parent is seeking a new doctor, he might want to find out whether that physician accepts "assignment," which means she will accept what Medicare pays her. Sometimes, paying more for a particular doctor's services may be worth it.
The Medicare web site provides a list of "participating physicians" in each state. These are the doctors who accept assignment: www.medicare.gov, click on Find a Doctor.
States have programs that pay Medicare premiums and in some cases also cover deductibles and co-insurance for people with limited assets.
Medicare supplement insurance (Medigap) is private insurance that covers most Medicare co-payments and sometimes provides additional benefits. Federal and state laws set strict standards for Medigap policies to protect the consumer. Be sure your parent is not sold more than one Medigap policy. He will not need a Medigap policy if he is in the Medicaid program (page 45) or has joined a Medicare Advantage Plan.
Prescription Medication Coverage
Medicare began paying for prescription medications in January 2006 for an additional monthly premium. This prescription medication program is known as Medicare Part D or Medicare Rx. Participation in Medicare Rx is voluntary but there may be a premium penalty for delaying enrollment.
Many older adults can benefit from this program, especially those who could not otherwise afford their medications without skimping on other life necessities. People with limited income and assets are eligible for Extra Help with paying for their prescription drugs. You will find information on Extra Help on the web sites listed below.
The enrollment process can be overwhelming, primarily because the prescription drug benefit is provided through private companies that compete for the customer's business. Your parent will face what many find to be a bewildering array of prescription drug plans and may need considerable assistance. Premium costs are only one important factor to consider in choosing a plan. Other important considerations:
Are all or most of your parent's medications covered by that plan?
Is his pharmacy included in the plan's network?
Are any of his medications covered only under special circumstances?
Be sure your parent knows that there will be a gap in coverage after his medication expenses reach a certain level. This comes as a surprise to some Medicare Rx participants.
For help with understanding Medicare Rx and choosing the best plan:
National Resources:
www.medicare.gov (Centers for Medicare and Medicaid Services) The Medicare helpline telephone number is 1-800-633-4227.
www.aarp.org Search for Medicare Rx.
www.ncoa.org (National Council on Aging) Search for Medicare Rx.
www.medicareadvocacy.org (Center for Medicare Advocacy, Inc.) Click on Medicare Part D.
State Resources:
State AARP offices - www.aarp.org Click on AARP in Your State.
Area Agencies on Aging - Staff expertise includes finding assistance for members of American Indian tribes. (See Key Resources)
If a staff member cannot answer your questions, find out who can. Ask whether there will be Medicare Rx consumer education forums in your parents' vicinity.
Many MedicareAdvantage plans (see below) also offer the prescription drug benefit but you and your parents will need to do additional homework before choosing one of these plans.
Do not wait until
the last minute to help your parent find the best prescription drug
plan.
To find other prescription medication programs that help lower costs for those who meet eligibility requirements:
www.benefitscheckuprx.org - National Council on Aging
www.pparx.org - Partnership for Patient Assistance is an alliance of pharmaceutical companies, healthcare providers and patient advocacy organizations that assists consumers to find inexpensive medications and free healthcare clinics.
www.needymeds.com - NeedyMeds is a nonprofit organization that helps people who cannot afford medicine or healthcare costs. This information includes help for some people with specific diseases and other medical conditions.
Medicare Advantage Plans
These are health plan options to Original Medicare that are approved by Medicare but are run by private companies. To participate in anAdvantage Plan you must leave Original Medicare.
These plans must provide all of the benefits provided under Original Medicare.
Some offer more benefits and services than you will receive under Original Medicare. Service costs may be lower.
Some plans restrict you to certain physicians and hospitals. Original Medicare has no such restrictions.
You will continue paying the Part B premium plus the Advantage Plan's premium, should there be one.
Most of these plans offer a prescription drug benefit. If you join a plan that does not offer this benefit, you may choose any of the Medicare Rx plans offered to Original Medicare participants.
You must choose to receive all your Medicare benefits under an Advantage plan to get coverage under its prescription drug plan.
You may not switch to another prescription drug plan while you are enrolled in an Advantage plan.
If you choose an Advantage plan, you may keep your Medigap insurance but are unlikely to get any additional help from it. You would need to continue to pay for it. You are not allowed to keep its prescription drug coverage. Before choosing Medicare Advantage, find out whether there may be obstacles to re- enrolling in your Medigap plan, if you should decide to return to Original Medicare.
Visit www.medicare.gov to learn more about Medicare Advantage plans. The Medicare helpline telephone number is 1-800-633-4227.
Before moving to a Medicare Advantage plan, no matter how attractive it may seem, it is a good idea also to call your State Health InsuranceAssistance Program (SHIP). SHIP has counselors in every state and several territories that provide free one-on-one help with Medicare questions or problems.
Ask an Area Agency on Aging to help you find the state SHIP (Key Resources, page 248), or go to www.shiptalk.org.
Rule #3—Not
All "Alzheimer's Disease" is Alzheimer's Disease
Marlene attended one of my problem-solving workshops. Her mother was confused and her memory was poor. Marlene assumed it was because her mother was 80 and was in the early stages of Alzheimer's disease. She was wondering about how to choose a nursing home.
I suggested getting her mother a thorough physical examination before considering a move. She did.The doctor found that Marlene's mother had diabetes and began treatment. Within a month her mother's confusion and memory loss had disappeared and no one was talking anymore about a nursing home.
Life-altering confusion and loss of memory are neither normal nor inevitable aspects of aging. Alzheimer's disease is not always the cause. It is Preventing Problems and Overcoming Those You Can't Prevent: Eight Rules one of a group of brain disorders known as "dementia." Symptoms of dementia may be caused by other, treatable, medical problems such as alcohol abuse, depression, vitamin deficiency and adverse reactions to medications.
The national Alzheimer's Association tells us all types of dementia involve mental decline that can be described in all of the following ways:
Occurred from a higher level (for example, the person didn't always have a poor memory)
Is severe enough to interfere with usual activities and daily life
Affects more than one of the following core mental abilities:
1. recent memory (the ability to learn and recall new information)
2. language (the ability to write or speak, or to understand written or spoken words)
3. visuospatial function (the ability to understand symbols, maps, etc., and the brain's ability to translate visual signals into a correct impression of where objects are in space)
4. executive function (the ability to plan, reason, solve problems and focus on a task)
("Fact sheet: Alzheimer's disease and other dementias," Alzheimer's Association, September 15, 2006.)
Do not ignore early signs of dementia. Always obtain an informed diagnosis. Never assume that you know the causes. Stay updated on what we are learning about slowing and preventing the onset of Alzheimer's disease.
It Wasn't "Sudden Alzheimer's"
I was on a short golf vacation in central Wisconsin, 200 miles from home. One of Leila's caregivers, Sherrie, called me: "Leila is acting very strange. She thinks she is in the hospital and keeps asking for you. We keep telling her she is home and you are golfing, but she doesn't get it. It's scary!"
Leila was taking an antibiotic for a bladder infection. I recognized the symptoms: her infection was worsening. I told Sherrie to call the emergency squad and get Leila to the hospital. I rushed home.
Several days of intravenous treatment with an antibiotic knocked out the infection and cleared Leila's mind.
I had learned from our home-health nurse that a sudden change in Leila's mental state should not be confused with dementia. This kind of problem almost always signaled another problem, such as an imbalance in her blood chemistry or the onset of an illness. There are many terms for this kind of sudden disorientation, including "delirium" and "sudden confusion."
Sudden confusion is a common and dangerous problem for hospitalized elders and also for elders in nursing homes. Sudden confusion should be treated as a medical emergency.
Check www.alz.org (national Alzheimer's Association) for information on diagnosing and treatingAlzheimer's disease and other causes of dementia. You can locate your nearest Alzheimer's Association office on its web site. Staff in this office can help you find local programs and services.
The Alzheimer's Association helpline is available 24 hours a day, including weekends. Click on Services, then Contact Center. The toll-free telephone number 1-800-272-3900.
Rule #4—Loss
of Interest in Life Is Not Normal at Any Age
"I have fallen and can't get up"
In a class for caregivers, a man asked me: "What do you do if your father acts like he is saying, 'I have fallen and can't get up'?" I asked if he meant that his father was no longer interested in life and he said that was it.
The most telling sign was his father's loss of enthusiasm for playing cards and bowling with his pals. "He just sits there every day. That is not him." I discussed strategies for overcoming this problem, such as having his dad's friends scheme to get him back on the bowling alleys. I also suggested that his father might be in the clutches of a health crisis as devastating as many of the physical crises related to aging: depression. I wondered if he might need medical care.
The man thought that asking his dad's friends to work on getting him back to their poker games was a good starting place. He might talk to his father about seeing a physician if that strategy didn't work.
Depression is an illness that sometimes accompanies the losses in old age, for instance the death of family and friends and decline of physical abilities. It is often associated with other illnesses such as Parkinson's disease and cancer. Depression frequently is misunderstood. For instance, someone who has had a "negative personality" throughout life may have been suffering from depression all along.
Depression is not a normal aspect of aging. It is not a sign of "weakness." Depression often can be treated successfully. Understanding this disease and recognizing its symptoms can literally save an elder's life. The suicide rate for Americans over 65 is disturbingly high.
For more on the causes, symptoms and treatment of depression and other mental illnesses visit the web site of the National Institute of Mental Health: www.nimh.nih.gov.
"She always
gives me a boost"
Diane, one of Leila's personal care aides, had spent several hours with her in our home while I attended a meeting. When I returned, Diane told me, "Anyone who thinks your mom is not smart just because she can't remember things doesn't know what they are talking about." Diane had been having arguments with her mother about a family matter. Leila had helped her see her mother's point of view.
Later, when Leila and I discussed the day, she told me how much she liked Diane. "She always gives me a boost."
Leila was fortunate. She never experienced depression. Her disabilities and physical discomfort, however, brought her occasional "down days" that could have multiplied in less supportive circumstances. Her mental health depended on more than "taking good care of her." The conversation with Diane had reassured Leila of her purpose in life and of her value to others.
Leila's spirits were lifted frequently by these kinds of experiences. While her caregivers were helping her bathe, fixing her lunch, or simply sharing a cup of coffee with her they would talk with Leila about their boyfriends, their families, their everyday lives. They told me how wise she was and how her insight helped them manage life's problems. The best part: they also told Leila.
Encourage your parents to remain involved in activities that add meaning to their days. Leila had been an excellent cook. Just talking with her about her famous meatloaf recipe and having her mix the ingredients helped her "still feel useful."
"What will
you do after I'm gone?"
One evening Leila asked me matter-of-factly, "What will you do after I'm gone?" I was startled, but, fortunately, did not respond as I was inclined to: "Oh, Mom, I really don't want to think about it."
Instead, I told Leila I would have a very hard time for a while. I would always miss her. But I would do what she would want me to do: keep on living a full and active life. She responded, "Will you stay here? I am worried about you being alone." I told her I didn't know what I would do but that I had good friends to help me figure it out. She smiled and said I should remind her about that now and then.
Then I asked Leila a question I had not asked before: "Mom, are you afraid of dying?" Leila didn't hesitate: "I believe there is a plan for all of us. I was OK before I got here and I will be OK after I go. I will hate to leave you but I am not afraid of what comes next." Then she said, "But we can worry about that later. How about going out to dinner?" Leila and I went out to dinner for several more years and now and then reassured each other we would both be OK after she was gone.
This conversation enriched my understanding of what an adult child can do to help a parent remain engaged in life in old age. Leila had been unusually quiet for a couple of days before this discussion. Her mood was lighter afterward. It was therapeutic for her to discuss a topic I thought she would have preferred to avoid. What might have been upsetting to Leila a few years before comforted her at 85.
Her aides and I recognized that Leila benefited not only from talking about the realities of the future but also from telling us about the past. She had happy memories and it made her happy to share them. Her mother and one of her brothers had "died before their time." She needed to tell us about these painful experiences as well. Look for cues indicating that your parent wishes to talk about something you assumed she would rather avoid.
If a spiritual
life has been important to your parents, go out of your way to help
them continue it. Leila found it physically painful to sit through a
church service, but we helped her stay connected in other ways. Her
pastor visited us. Her spirit was uplifted by discussing her faith
with me and with the caring women who did so much for her.
Rule #5—Rehabilitation Is Not Only for the Young
Leila was hospitalized with a fractured pelvis a few months after we moved back to Wisconsin from Washington in 1985. She was 79. Because she was injured so severely, I feared that Leila's life would never be the same again. I called Dr. Swenson, an acquaintance who specialized in the medical care of older adults. I told her my fears and how helpless I felt. She told me: "I have seen badly injured and very ill older people rehabilitate quite nicely with time. Don't give up." With this hopeful advice in mind and with physical therapy at home, Leila recovered and went on with life.
Don't count your parents out when they are down. They may well be capable of "rehabilitating quite nicely with time." Skilled physical therapy often works wonders even for people well past 90.
Remember, there is specialized rehabilitation therapy for people with balance problems.
Many elders with significant medical, mobility or sensory problems can remain quite self-reliant. They can stay in control of their lives, as long as they are able to use good judgment—and as long as we let them.
I learned not to
make final judgments about a person's rehabilitation potential during
a hospitalization or nursing home stay. When we reach old age,
institutional environments often become extremely disorienting in a
short time. Leila's coping abilities, memory and motor skills
inevitably improved as soon as she was out of the hospital.
Rule # 6—Preoccupation with Safety Can Be Risky
Aunt Alvira's graduate course on living with acceptable risk
My Aunt Alvira was unconscious for days, first in a hospital, then a nursing home. The doctors and staff thought she had suffered a stroke. Then "Alvira's miracle" occurred. She woke up. Because she was tough and stubborn, Aunt Alvira returned home, over the protests of family members, including me. (I protested from long distance since I was still living in Washington.)
A nursing home social worker helped Aunt Alvira find what she needed to remain relatively self-reliant. She paid a neighbor to assist her with bathing, shopping and laundry. A nurse checked on her weekly. Aunt Alvira continued physical therapy. She told me how impressed the therapist was with how quickly she improved.
I visited her a few weeks after she got home. "She has improved?" I remarked to myself. "What was she like three weeks ago?" Aunt Alvira moved around by staggering from doorjamb to doorjamb, stopping to lean on whatever piece of furniture she found in her path. I covered my eyes when she went upstairs to bed. She would cling to the railing and haul herself to the top, stair by agonizing stair.
I tried to talk Aunt Alvira into sleeping downstairs. "Aunt Alvira, why do you insist on going up those stairs every night?" She replied: "Well, Terry Boy, because that's where my bedroom is. If I get tired on the way up, I rest. It's the only exercise I get. Please don't try to take my stairs away from me."
I surrendered and stopped bugging Aunt Alvira. She continued to haul herself up those stairs and to stagger around her home. Now and then she fell but was never seriously injured. We questioned her judgment once more: "Now isn't it time to move to someplace safer?" Aunt Alvira thought otherwise. She told me she chose to live as the lyrics from an old song suggested, "I pick myself up, dust myself off, and start all over again."
Some of her former piano students visited Aunt Alvira regularly. Sometimes they brought their children. They always brought her pleasure. Aunt Alvira spent many hours in her living room easy chair, "watching the world go by." She dined on ham slices, fruit, and TV dinners. She lived like this, stubbornly and contentedly, until she left us one day as she sat in her easy chair watching children play in the schoolyard across the street. Aunt Alvira was 94. It had been six years since she left the nursing home.
At first, I thought that what I was learning from Aunt Alvira was specific only to her. No one was going to tell her how to live her life, so we might as well let her live it. I finally realized she was teaching me much more than that. She was giving me a graduate course on the dignity and power of being "allowed" to live with life-saving risk.