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

Preface

Iwill begin with an apology to readers who have enjoyed The Parent’s Guide to Business Travel or Islands in the Sand, my other nonfiction books. I am a strong believer in approaching nonfiction in a way that blends fact with lightheartedness and humor as appropriate. I write to entertain as well as to provide 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 that can 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

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 grand-mothers 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,