Preface and Chapter One of

Your Room at the End: Thoughts About Aging We’d Rather Avoid

Preface

I will begin with an apology to readers who have enjoyed The Parent’s Guide to Business Travel or Islands in the Sand, myother nonfiction books. I am a strong believer in approachingnonfiction in a way that blends fact with lightheartednessand humor as appropriate. I write to entertain as well as toprovide information. Your Room at the End is different from those books and my usual style because it discusses a vastly different topic. The subject of dying is not a comfortable one, and the thought of descending into fragile helplessness prior to death is undeniably unpleasant. These are not subjects thatcan be dealt with in a lighthearted manner and while I have attempted to be as gentle as possible about certain topics, Your Room at the End is meant to provide insight into and information about how our bodies and minds may cease to respond as we wish them to—and especially how they will cease to respond as we thought they always would.

This book came about as a result of grim months that I spent by the side of a woman that I admired as I watched her literally wither and die. I came to understand how unprepared I was for such an occurrence and how incorrectly I had perceived the aging process. At times I unburdened on a neighbor and dear friend, who urged me to write this book. “Use this experience to help others if you can,” she said quietly.

I have spoken with numerous specialists and incorporated what I personally observed in order to reach out to those of my generation and my son’s generation. Even if you have not yet dealt with the decline of a parent, that unfortunate circumstance is not in the too distant future, and soon after that it will be your turn to require care. The ability to adequately plan is based upon genuine knowledge of what

can and does happen to us as we age. Notwithstanding the disconcerting nature of physical and mental decline, facing the reality now can potentially help moderate certain effects and prepare you for those that cannot be moderated. Decisions that you will need to make with or for your parents and those that you make for yourself will impact your well-being and what your children have to deal with when the time comes.

There are many books written about all the topics addressed in this book as well as websites for resources; a number of these are listed in part 2. My intent is to provide you with enough information to determine the areas that you need to explore in greater detail. If you think of your later years as the journey that it is, consider this book the travel pocket guide that you carry for quick reference; it is by no means a detailed travel book, but it shows you the highlights. Your Room at the End is not light reading, but if I can help even one person become better prepared for the later years, it will be a worthwhile effort.

Part I

This Is Not Supposed to Happen to Me

Chapter One

Aging and Death: What to Fight and What to Negotiate

Why This Book?

Three women, all vibrantly strong in their own way, yet dissimilar in many others; two from the Deep South, one staunchly New England. One a woman who stepped out of her era’s traditional role as wife and mother and started her own tax preparation business and assay office. She worked to help her husband gain a foothold as a small-town lawyer, an eventual judge, and later a state court justice. Though

admittedly a “big fish in a small pond” situation, the couple did make their way to England for travel, the woman elegant with her white hair in a French twist and a mink stole draped around her shoulders. The second woman, bound solidly in traditions of rural Arkansas, raised four sons and worked a farm with her husband. Her hands were calloused from churning butter and hoeing the garden that provided fresh

produce. The third woman, cut from the same cloth as Katherine Hepburn, was a pioneer for her generation. She served in the navy as part of Women Accepted for Voluntary Emergency Service (WAVES) during World War II and then entered the world of education. She raised one child and worked all her life to include time as the dean of students at a small college. She retired from education, began new work in medical records at the local hospital, and did not retire from that job until age eighty-four.

These three women—my maternal and paternal grandmothers and the mother of my first husband—shared two tragic aspects of their lives. They survived their husbands, which, though statistically expected, is never easy to cope with. The even more unsettling tragedy was that they each later lost the strength that sustained them for decades and withered into fearful, tearful shadows of what they had been. Their lives ended in a way that none of them would have wanted; a large part of why that happened was that none of them believed it could happen to them. They were not prepared for their worlds to fold into the space of a single room; no doubt they believed that they would die peacefully and quietly at home in full possession of their cognitive abilities.

The first woman, my maternal grandmother, slid into and lingered in an increasingly incoherent state for almost five years despite hopes that she would somehow get better. My paternal grandmother’s decline also culminated in five years of the inability to function on her own, which manifested itself in an increasing suspicion of the people around her and a confusion in regard to everyday actions. I saw them both intermittently and was saddened by their condition, but I was not closely involved. However, the third woman, my first husband’s mother, was the one that I was with throughout the bitter transformation. I watched as she shriveled into exactly the kind of woman that she had never been nor wanted to be—

and there was nothing that I could do to alter the outcome.

What I did learn in those excruciating final months was that I had woefully misunderstood some things that had occurred in the year prior to her decline and that I was not mentally or emotionally prepared for what was occurring before me. I merely thought I understood the process. I had snippets from my own experiences and from sympathetically listening to friends who had gone through similar scenarios. I discovered that my knowledge and, more importantly, my understanding were far more limited than I wanted to believe. As I spent hours on end at the nursing facility and the days stretched into weeks, I had the chance to observe many things firsthand. I spoke with nurses, nurse’s aides, the resident nutritionist, and physical and occupational therapists who dealt with aged patients every day. I consulted with different doctors and a lawyer, and I had numerous conversations with a social worker and ultimately with hospice personnel.

I wept more times than I can count and lost my temper more than I care to admit. I had to let go of what I thought things would be like and see the ugly reality of another person literally wasting away in front of me. I essentially spent the winter with her in Maine with only shorts retreats to Florida. During one of those times snatched at home, a neighbor spoke to me gently, having lost her father a year prior. “Use your talent to write about this,” she said. “Make something good from it, something that can maybe help other people.”

I had already begun to keep somewhat of a journal, partially as a way to articulate my thoughts, but also because I knew that if I did not capture the raw feelings, an exact report of what was occurring, then I would filter the events as we often do. I would change words here and there, misremember, reinterpret, and the value of what I ought to be learning would diluted by how I wanted things to be, how

I wanted to have behaved. While my strength during those battering months was greater than my weaknesses, I would gladly ask for a “do-over” for certain aspects of my behavior and some of the decisions that I made.

Of course, I have the benefit of hindsight as I write this, of knowing that the period of decline lasted less time than I was expecting (that too is something discussed later in the book). As I mentioned previously, the topics in this book are more highlights than detailed specifics; each chapter and section can generate dozens of questions that need answers. My primary intent is to lead you into a subject that most of us would rather avoid or, like the three women in my life, believe won’t happen to us or our parents—and it might not. Some people do die quickly, peacefully, living a full life to the end. I can wish that for you, for me, and for anyone that I care about. In the real world, however, I have already altered some plans that I thought made sense and I will no doubt alter others when the time comes, in accordance with what the actual circumstances are as opposed to what I might wish them to be.

Your Room at the End

“I want to stay in my own home.” That is a common sentiment and the topic of a later chapter; however, even if an individual is able remain at home, the odds are that the physical ability to maneuver around the house will diminish, and in the end, one or two rooms will be that person’s actual domain. Individuals who move in with a child or those who move to independent- or assisted-living facilities will also likely

find themselves in a single room, perhaps two—or perhaps only half a room with shared common spaces. This reduction of space is a significant factor to consider since most of us have far more possessions than fit into one or two rooms. What to do with your “stuff” will also be discussed later, as will practical design features to consider incorporating into building or remodeling situations.

Beyond Madison Avenue Hype

“Today’s sixty is the old forty.” In many ways, that is true. Changes in lifestyle, medical advancements, and increased access to information do often extend the active stages of life. The advertisement of an octogenarian water skier and a sixty something skydiver are good to see and serve as reminders to continue doing what you love—or to take up something new. The promotion of products for baby boomers is alive and well; it is a generation to be marketed to. There are cosmetic solutions, joint supplements, cholesterol-reducing medication, aspirin for the heart, preventative osteoporosis medication,

hearing enhancement—speaking of enhancement, there is the gold mine of erectile dysfunction medication—home and personal monitoring systems, renewed financial retirement planning, and the list goes on. As with the same advertising that shows the glamorous Victoria’s Secret models, the active

seniors in commercials and print ads are the “new forties, fifties, and sixties”—men and women who are “only as old as they feel.” There are products, services, and organizations that are either specially designed for or particularly useful to an aging population. Hopefully as we have grown older, we have become better equipped to sort through the hype and know where to go for information as to the effectiveness of products and services.

Advertisers stop short of the scary parts though: the time when all the expensive face creams in the world will not re-plump the wrinkles; when you will look honestly at your finances and realize that some of those cruises that you intended to take will leave less for the care that you are likely to require in your later years; when your children will offer to drive to keep you from behind the wheel of your car. It is difficult to put a positive spin on these very real outcomes. This is when the marketing campaign fades the older person into the background and goes after what the product or service can do for the adult child “to make this time easier” for everyone. This is what advertising does—it sells a dream, an idea. There is no more reason for you to buy into their version of aging than there was for you to believe that using a particular mouthwash actually would suddenly make the love of your life appear out of thin air. Looking honestly into the details of products and services is what is important.

The determination to hold on to good health and be “sharp as a tack” or “still going strong” are excellent goals—goals that those three women in my life shared. In two cases, the decline set in so rapidly that they lost the ability to make decisions on their own; in the third case, she chose to ignore the warning signs, to make minimal (and as it turned out, inadequate) adjustments in order to maintain her fiercely desired independence. There is no question that willpower and a positive attitude matter, but they do not overcome the physical and mental losses that accompany long life. Each individual is different, of course, but muscle and joint deterioration, impaired balance, loss or diminishment of hearing and sight, blood pressure issues, the weakening of the heart, lungs, and other organs, inclination to depression, and changes in the body’s response to medication are aspects of aging that catch up to all of us. For some, it can happen as early as the sixties, for others, the seventies, eighties, and beyond, but understand that if you live long enough, these things will happen. All the determination and medical intervention in the world will not prevent all of the decline until whatever the final cause of death may be.

As of the writing of this book, the average life span for men and women in the United States among non-Hispanic Caucasians is 80.6 years and 75.7 years respectively. For African-Americans, the figures are 69.7 years for males and 76.5 years for females.¹ The Social Security office shows a different type of statistic to use for planning. Their 2010 data says that “the typical sixty-five-year-old today will live to age eighty-three; one in four sixty-five-year-olds will live to age ninety; and one in ten sixty-five-year-olds will live to age ninety-five.”²

As the title of this chapter indicates, understanding what you can truly fight and what you need to negotiate to get the “best deal” with your body are realities to be faced. I’m not talking about falling into the anxiety of rushing to the doctor at every joint twinge or insisting that you be prescribed that latest drug being advertised for a myriad of ailments (more about that later). Moments of light-headedness, shortness of breath, or dizzy spells should not be ignored, nor should the fact that your hearing isn’t what it used to be. Those are some of the things that do warrant a visit to the doctor, while others, such as the willingness to acknowledge that you need an afternoon nap or want to get up at five o’clock in the morning and go to bed at eight o’clock at night, are normal behavioral changes that many people experience. Recognizing that the two-hour stretch when you used to be out doing yard work in the hot sun or shoveling snow may be reduced to thirty minutes at a time is a similar consideration. An important point to remember, however, is that relinquishing tasks or activities is not the same thing as becoming inactive. Adjusting the way that you perform certain activities or developing new methods for how you do things are discussed in a subsequent chapter.

Setting your own pace, slowing down, and taking it easy is to be expected, and in all likelihood, this will only become a issue if you are around younger people who don’t understand that it now requires twice the amount of time to get ready to go somewhere or that trying that new, noisy, trendy restaurant just doesn’t hold the appeal that it once might have. The skill in negotiations—whether in business or with your body—is to know your own resources and your opponent, which in this case involves your personal self, your personal situation, and what is medically feasible. Wonderful technologies such as joint replacement and outpatient cataract surgery have significantly contributed to quality of life as we age. Dietary and exercise needs also play an important role and will be discussed in a later chapter, as will other preventative measures that can be taken. There is a limit to what can be done, though, and falsely believing that, “Oh, by the time I reach that age, they’ll have a cure for it” (whatever it is), can lead to denial and a trap of spiraling anger and depression that does more harm than good.

Although part 2 of the book contains a number of ideas about how to sustain quality of life during the aging process and some additional resources to consult, few of us readily embrace the thought of losing the abilities that we once took for granted. It is the candid discussion of this reality that is core to the book, and I hope that I can provide some practical value as you look at the journey that lies ahead. When my husband and I worked logistics for military operations during our army careers, we were schooled in the practice of, “Plan for the worst and adjust if you get better,” and that is the recurring theme here. It is not pleasant planning and I won’t pretend that it is, but I have come to believe strongly in its value.

1 “Life Expectancy in the United States,” last modified August 16, 2006, US National Center for Health Statistics, http://aging.senate.gov/crs/aging1.pdf.

2 “Thinking of Retiring? Some Things to Consider,” last modified January 2010, US Social Security Administration, http://www.socialsecurity.gov.