Living Well in a Nursing Home: Everything You and Your Folks Need to Knowby Lynn Dickinson, Xenia Vosen, Severine Biedermann
While life in a nursing home is rarely considered a first choice, at times it's the best choice. Still, the decision to put a loved one in a home is incredibly difficult. This book concentrates on the positive aspects of nursing homes and offers strategies for identifying the best facilities. Among the topics covered are how to recognize signs that a family member needs extra support, determining whether in-home care is a viable option, the different types of long-term care, working and communicating with the staff and preparing for the end of life.
The book includes exercises for working through emotional reactions to the nursing home decision and how to maintain and improve family relationships in these circumstances.
Uplifting stories of people and staff in nursing homes illustrate the concepts in the book, which is clearly written and filled with practical and positive advice.
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Living Well in a Nursing HomeEverything You and Your Folks Need to Know
By LYNN DICKINSON XENIA VOSEN Severine Biedermann
Hunter House Inc., PublishersCopyright © 2006 Lynn Dickinson & Xenia Vosen, Ph.D.
All right reserved.
Chapter OneStepping into New Territory
John and Martha had been married for more than fifty years. They still lived in the same house where they had raised their two children. Their son, John Jr., served in the military overseas. Their daughter, Catherine, lived about an hour away with her husband and two young children. For over twenty years John had suffered from Parkinson's disease. What began as occasional minor episodes of stiffness and trembling had gradually progressed to serious attacks, rendering him more and more helpless. John had always been an athletic, outdoorsy man, and he hated the idea of being sick. He had long ago decided that nobody would ever know about his problems. The disease was his and Martha's "little secret," and Martha simply took over caring for him whenever he needed extra help. At first Martha enjoyed her new role. It made her feel powerful, needed, and important. But as John grew more helpless and less communicative, she began to resent his sickness and the toll it was taking on her body andmind. Martha wasn't getting any younger, and she was often exhausted from caring for John and managing the household without any help. Sometimes she scolded John, cursed his stiff muscles, or even accused him of not "cooperating" when she found it particularly difficult to dress or clean him. Keeping John's condition a secret worked fine until the day Martha fell and broke her hip. She lay whimpering on the floor, and John could do nothing to help her. He simply sat and stared at his wife until she passed out from the pain. Several hours later, on the other side of town, Catherine, John and Martha's daughter, was outside raking leaves when her phone rang. She was shocked to learn that her mother was in the hospital and had just come out of hip surgery. Her father was there too, but couldn't be sent home by himself. Could she come immediately? As she jumped into her car and headed for the hospital, Catherine felt baffled. She had spoken to her mother on the phone just that morning, and Martha had assured her that everything was fine. Whenever Catherine had asked about Dad over the years, Martha had reassured her that he was "just getting older, that's all." Although she had long suspected something wasn't quite right, Catherine never imagined the full extent of her father's condition or her mother's responsibilities. Now, out of the blue, these had suddenly become her responsibilities, and she had no idea what she was supposed to do.
Catherine, John, and Martha are real people with a real problem. We have changed their names, but their story is true and could be similar to yours. Like Catherine, you may have been taken completely by surprise by your parent's need for intervention and care. Or perhaps you knew it was coming, and now it has. What is the first thing you need to know? Here it is:
You can get through this and you will
We'll revisit Catherine later to see how her situation with John and Martha unfolds. For now, just know that you are not alone. If you are responsible for the well-being of a parent or another loved one, whether you came by that responsibility suddenly or gradually, know that there are millions of other people in the same situation. In North America and Europe, more than half a million residents will enter a nursing home for the first time this year. In the United States alone, 257,000 residents went into nursing homes last year.
Why We Feel So Bad about Nursing Homes
Most of us have heard negative things about nursing homes. From what we've observed, there is almost a knee-jerk reaction against the idea of being "put into" a nursing home. In many people's minds, a "good" son or daughter would never do such a thing to his or her mother or father. The very idea often brings up issues of abandonment and feelings of guilt, anger, hostility, and betrayal.
Why do we hear so many awful things about nursing homes? We believe there are both internal and external answers to this question. The biggest internal reason is the fact that none of us like to think about aging or death. Nursing homes are constant reminders of both. When we see our loved ones needing care, we can't help but realize on some level that one day we will very likely need the same kind of care ourselves. We don't like to think about this, so we blame the nursing homes for reminding us of our own vulnerabilities.
Among the external reasons why we hear bad things about nursing homes is because "nursing home" is an umbrella term that covers many different facilities and even types of facilities (see the next section, "What We Mean When We Say 'Nursing Home'"), some of which have real problems when it comes to care and funding and others which deal with resident populations that are difficult to provide care for. However, media bias also colors our view. The major media-radio, television, and print-are in business to make money. They are experts at discovering what sells and, simply put, negativity sells. People tend to be drawn to the dark side of things. This is why you will never turn on your television news program and hear how many thousands or even millions of people made it home safely last night. You will hear about the two or three who didn't-because this is the kind of news that gets people hooked. It is also part of what leads many people to develop a skewed and fearful view of life in general.
When was the last time you saw a news story about the active social communities, friendships, or even romances that develop in nursing homes? When did you last read something positive about the creative, patient, and dedicated people who care for our elders day in and day out? We make the mistake of thinking that because we don't hear about the positive aspects of nursing homes, they don't exist. Just like the people who make it home safely every night, in the world of nursing homes many people have positive and satisfying experiences. We share some of their stories with you in this book.
Another reason why nursing homes are easy targets of criticism is because a nursing home is an institution, while the victim of harm, when there is one, is always an individual. Whenever we hear stories of an individual versus an institution, we almost automatically identify with the individual. The institution becomes the "bad guy." The truth is that nursing homes are busy, active communities populated with real people, some of whom live there and some of whom work there. They interact with each other every day in close and personal ways, and, just like in "real" life outside the nursing home, sometimes there are problems between two or more of them. That's how life is. Unfortunately, if one of the people accused of wrongdoing happens to be a staff member of a nursing home, the story is usually reported as though the home itself were the culprit, which can make nursing homes in general seem like scary places indeed.
We're not saying that all nursing homes are created equal or that a nursing home should always be your first choice, but for some people, making the move to a long-term-care facility can be the very best option. For Mary-Ellen McKay it presented a whole new beginning.
Eighty-two-year-old Mary-Ellen lived alone in a third-floor Santa Monica walk-up apartment she had shared with her late husband. Her only visitor was a friend who stopped by once a week. The two women had worked together as physician's assistants some twenty years earlier. Mary-Ellen's children all lived busy lives of their own, and though they called frequently, they were much too far away to look after their mother.
The stairs leading up to Mary-Ellen's apartment were difficult to manage, so she rarely went out except for an occasional walk to the corner market to pick up a few necessities. After a while even this became too challenging, so she stopped going out. Then she started falling down. It was clear that Mary-Ellen needed help. Her friend encouraged her to move into a quality nursing home nearby. Once she did, her life changed dramatically for the better. First, the facility's doctor evaluated her medications. He determined that she was severely overmedicated and vulnerable to some potentially dangerous drug interactions. As soon as her medications were changed, Mary-Ellen showed a renewed interest in what was happening around her. She perked up, stopped falling, and started participating in the facility's community activities. She now has a boyfriend, several confidantes among the other residents, and an immense enjoyment of life. Her newfound happiness and improved health would never have been possible had she stayed isolated in her lonely apartment.
What We Mean When We Say "Nursing Home"
Before we go any further we want to clarify some terminology. Throughout this book we tend to use the phrases "nursing home" and "long-term-care facility" interchangeably. We do this only for convenience. There are differences. "Long-term care" (or "LTC") is an umbrella term that applies to any kind of care that someone receives on an ongoing basis. It may include long-term care at home, or more commonly, at the various kinds of facilities we refer to in this book. Some examples of long-term-care facilities are the following:
* Assisted-living centers
* Nursing homes or skilled nursing centers
* Convalescent homes
* Board-and-care facilities
* Retirement facilities
* Alzheimer's or memory-impairment facilities
In Chapter 6 we describe these various types of residential programs in detail, with a specific focus on those that care for people who really can't live alone any longer (for whatever reason). In the book's title we use the phrase "nursing home" because it is the term most people are familiar with, but it will be up to you, using the information you find in these pages, to determine what type of facility is right for yourself or your loved one.
What We Mean When We Say "You"
Throughout this book we speak to you, the reader, in two senses of the word "you." We speak to you as the adult child of an elderly parent (or as the person responsible for the well-being of another elderly loved one) who needs your help and assistance. We also speak to you if you are trying to make the long-term-care decision for yourself. As we said in the Introduction, even though throughout the book we refer to the nursing home resident as "your parent," this book isn't just about parents.
We are aware that many potential long-term-care residents are perfectly capable of evaluating their choices and making decisions for themselves. If this describes you, you may be tired of doing your own housekeeping, or you may need a little help getting dressed in the morning, but you are still of sound mind and are just exploring your options. This book is for you whether you are considering making the move to live with one of your children or whether you simply want to know more about long-term-care facilities. It is also for you if you are already a resident of a long-term-care facility and want to know how to make your stay more satisfying and pleasant. Although this book is written as though it is addressed to the adult sons or daughters of elderly people, all the information in it can be applied to oneself as well.
We are also aware that readers will come to this book at many different stages in the process of either making the nursing home decision or learning how to live well in a nursing home. If you haven't done so already, please review the section in the Introduction titled "How to Read This Book" to help you determine where in the book you can find information addressed to your particular circumstances.
This book was written with two simple assumptions in mind that you'll need to know to get the most out of reading it. The first assumption we make is that each person is responsible for his or her own level of happiness and satisfaction. We may not be able to fully control our life circumstances, but we can control our reactions to those circumstances. You are not responsible for your parents' happiness any more than your parents are responsible for yours. You may be able to help your parents cope with their circumstances, but you are not responsible for their situation.
We know this is not as simple as it sounds, so we spend plenty of time in Chapter 5 exploring the various feelings that arise when the nursing home decision becomes a necessity. Don't worry if you're not fond of or familiar with working things out on the emotional level. We provide a simple primer that anyone can use to learn more about emotions in general and also about what to do with uncomfortable feelings when they pop up.
The second assumption we make is that in a relationship with your parent you would prefer to be a "love-giver" rather than just a caregiver. A caregiver is someone who attends to another person's survival and physical comfort needs. Caregiving can be an act of love, but it is not about the relationship between the caregiver and the care recipient. A love-giver attends to the emotional and relationship needs of another person. The two roles are not mutually exclusive, but all too often people exhaust themselves and their resources (emotional and physical) providing basic care and, as a result, have nothing left for the important and rewarding tasks of maintaining a loving and fulfilling relationship. If you have to spend all your time feeding, washing, and assisting your parent at the expense of your own interests and self-care, it can be very difficult to also enjoy a satisfying relationship with him or her. In this book, we assume that, whenever possible, it is better to delegate the caregiving role and to use one's limited life energy to fill the love-giving role.
* * *
When an elderly loved one needs your help over the long haul, there is a lot to think about. You may feel the instinctive desire to bring her or him home to live with you. Or maybe you feel pressure to do that from within yourself or from outside sources, such as your siblings, other relatives, or even your parents themselves. You may be resigned to having to put your mother or father into a nursing home, but you don't feel very good about it and don't know quite where to start.
If you are in a situation where you need to make decisions about the care of an elderly loved one, you've come to the right place. In the chapters that follow, we'll walk you through the decision process step-by-step and point out the most important things for you to consider at each stage along the way. We'll assuage your fears and doubts and help you make the most of your remaining time with your loved one. As we've pointed out before, you can get through this and you will. Follow the advice in this book and you'll be able to make your elder-care decisions with the confidence that comes from being fully informed.
Excerpted from Living Well in a Nursing Home by LYNN DICKINSON XENIA VOSEN Severine Biedermann Copyright © 2006 by Lynn Dickinson & Xenia Vosen, Ph.D.. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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