Slow Dancing with a Stranger Read online

I feel ambivalent about my presence in this room—not the caregiver today but the potential future patient. I have signed up to participate in an Alzheimer’s longitudinal study. As a volunteer, I will be tested once a year. Psychologists will probe to see if my memory is waning. Doctors will analyze my blood and urine for markers of impending disease. I like to think by contributing my data that I am making a difference. If enough people participate in this and other similar studies, then scientists will be able to find patterns and make discoveries. Perhaps they will use the data to test drugs or find ways to intervene earlier; hopefully Alzheimer’s will not cloud the next generation.

  Nonetheless, even after all I have been through, I feel worried about someone testing my cognitive abilities. I want reassurance, but under the terms of the study protocol, I will not get any. Even if I show some early sign of the disease that affects Harvey and my mother, the clinical team cannot share the information with me.

  Knowing this, I might have chosen another way to allay my personal fears, but outside of joining a study, testing is an expensive proposition. It requires a battery of tests, including a special type of PET scan. My personal physician could access these procedures for me, but the cost of the scan alone is around $3,000 out of pocket. The expense seems frivolous when there is nothing to do but live with anything the tests reveal. I would rather participate in a study so that my data helps move the science forward.

  My anxieties help me understand why it is so difficult to recruit for large-scale Alzheimer’s prevention studies and trials. I sit in this uncomfortable metal chair hoping that I will notice if, year-to-year, there is a change in how many words on the list I can remember, or how quickly I answer the doctors’ questions.

  One of the biggest obstacles for me personally was the requirement that I be accompanied today by an “informant,” an unsettling term the researchers use for someone who knows you well enough to spot changes in your activities or behavior and agrees to come with you each time to give a report.

  I understand the reasoning behind this request but balk at the idea. Any viewpoint this person has is highly subjective. Moreover, knowing that someone is always peering over my shoulder is likely to change the dynamic of a relationship. The condition leads to another realization. My women friends don’t see me frequently enough to be able to fulfill this role. I certainly don’t want my son or his wife to question my every move. So who is left? I am truly on this journey alone.

  Earlier that morning, I grabbed the 6:30 shuttle to come to Boston for the testing. I even put in a 4:00 A.M. reminder to the nurse who usually comes at 7:30 to replace me.

  I continue to push myself hard, even as Harvey wastes away. His legs are now the size of my arms and his rib cage skeletal. The nurses are amazed that his body has not returned to a fetal position as it shuts down, but we continue to stretch him several times a day and uncurl his fingers rather than letting them knot up into fists.

  Given how ill Harvey is, there is a do-not-resuscitate order in place. I run through the other parts of the protocol with the nurses to follow in my absence. There will be no 911 call. The first call is to hospice. There will be no feeding tubes, and he will be kept at home whatever happens.

  Others who have lost loved ones to Alzheimer’s have admitted to me privately that, as hard as they try, all they remember is the agonizing end. Perhaps they had anticipated a sense of relief that it was finally over and were surprised to feel the grief of loss. I try not to think too much about it.

  The study session begins with a short preliminary interview in a small, claustrophobic cubicle that only has room for two bodies and a desk. The first series of questions make me feel like I’m in the wrong clinic. I have listed “caregiver” as my occupation.

  “Do you have any hobbies?” If I did, I don’t have them now. No time.

  “Do you find yourself depressed at times and drawing away from social interaction?” I feel endless sadness. I’m too worn out to be social, so I tell myself it doesn’t matter.

  “What do you do for pleasure?” I try to spend time with my grandchildren. I escape to their world from time to time. They say I wear black too much. I agree.

  I think most people are worried about their own risk if they have seen Alzheimer’s in their family. I worry all the time. When I walk up the steps to retrieve something and pause to try to remember what it was, I fear that I have begun to slip. When I mistakenly walk out without my house keys or misplace my jewelry or money tucked away for safekeeping, I panic. Is this the beginning? Can my forgetfulness be explained by a genetic effect?

  Other memories are so vivid that I feel as if they happened just yesterday. I remember every detail of when my son was born forty-four years ago and every detail of the day Harvey and I met. At the same time, I try hard to forget how difficult my journey has been. For one thing, it is not yet over. Besides, I refuse to complain because I just see pain everywhere.

  There is the day I go to a doctor’s appointment. The elevator door opens for a woman clutching medical charts followed by her husband moving stiffly and slowly. I empathize with her immediately. I can tell she is impatient. I identify with the sense of exasperation that rises up unbidden and is hard to quell, even when you love someone.

  One evening out at the neighborhood Chinese restaurant, I overhear a couple in the booth behind me quietly arguing when the husband asks his wife where to sign the check. The wife accuses him of drinking too much. I lose my appetite because Harvey and I were once very much like that couple. She, too, may be missing the earliest of warning signs for Alzheimer’s.

  On the few occasions when I go out, I try to leave the disease behind and feign normalcy. This attempt rarely succeeds. There are some days when I am convinced that my life will always be confined by Alzheimer’s.

  As I move through a reception or party of friends and strangers, I am alert for subtle telltale signs of the disease.

  Lately, I find they are everywhere. On a rare night out to dinner, I find myself wondering what lies ahead for the man who asks me to check on his wife in the ladies’ room because she has been away too long.

  I can’t take my eyes off a woman who stands lost and staring at the buffet table, uncertain and confused about how to navigate or where to start. I feel a wave of sadness and recognition when she returns to her seat with an empty plate.

  In cocktail conversation, I am aware of a gentleman filling in words as his wife recounts their family vacation but can’t recall where they went. They’d just returned two days earlier.

  At a ninetieth birthday party at a country club for a community business leader about to embark on a solo trip to Madagascar, I marvel at his eloquence and his still-sharp mind. Over the course of the evening, I am introduced to three men in their midseventies, dapper and tan longtime golfing buddies. One man keeps repeating a story about a recent high-profile business deal, except the outcome keeps changing. No one seems to notice, or if they do, it’s attributed to too much alcohol during a festive evening.

  One encounter or episode may mean nothing. Perhaps the confusion is simply the result of drug interactions, stress, or not enough sleep. Any suggestion that it might be wise to see a neurologist if this pattern of behavior continues will likely be taken the wrong way. Even when I am almost certain there is an issue, I am at a loss for how to begin such a personal conversation. Doctors aren’t very good at it either, and it’s their job to deliver hard news.

  I think I would feel negligent about my silence if there were some early intervention or disease-modifying therapy that might buy more intelligible time, but there are still none. So I err on the side of being polite and say nothing, and wonder once I return home if I am doing them—doing all of us—a disservice by not speaking up.

  I used to think of myself as the well spouse, but now I realize this isn’t the case. My vulnerabilities are great. Any hint of forgetting, whether real or not, gnaws at me. I want to believe that I will know what to do and not be robbed of that final act o
f control. But when I look around me, I can’t help but think this won’t be the case.

  My mother used to squirrel away prescription drugs. When I confronted her about what she was doing, she always replied, “What happened to your husband won’t happen to me. I’ll take care of it. That’s not living!” But Alzheimer’s often robs people of their abilities in an incremental fashion; few of us know when too much has been lost. My mother never used those drugs, and now her mind is too demented to have a say about deciding when enough is enough.

  Each time I bathe and feed my mother, I fear for myself. I used to pride myself on being well organized and meticulous like my mother, but now I look at my cluttered desk and feel like I live in a state of chronic disarray. It was one of the first symptoms that something was wrong with Harvey. That makes me worry even more. Sometimes I can’t retrieve a document, even when I file it away for safekeeping.

  Experts say the barrage of incoming e-mails, phone calls, and texts taxes the prefrontal cortex, inhibiting the brain’s ability to focus. Some of us can handle the overload, but most cannot. That thought doesn’t make me feel any better.

  If I begin to sleep, I never fully rest. Perhaps that’s why I have trouble concentrating and review my work over and over. Researchers tell me that as once-robust networks of nerve cells start to weaken and connections get lost, it gets harder to remember things and keep track of people, objects, and events. At this point, I assume that my hippocampus—a hub of 100 billion nerve cells deep in the brain that helps make and store memories—is too worn out to activate and encode new memories or ever grow new nerve cells again?

  My ability to remember things like names and faces stumps me more often than not. I’ve read it is a problem of retrieval and not storage—misplaced but not missing. I like to think I can compensate with lists and mnemonic triggers, but I still misplace my keys and now seem to be forgetting how to spell. That’s not a good sign for a former school spelling champion.

  These days I blame it all on the stress that seems to blanket my brain. Stress was the first explanation given for my husband’s erratic behavior and moods. Now it, along with a heightened sense of vigilance, are the emotions I most keenly feel. My efforts to resist comfort food when I am tired at night are not working. My prescription for antidepressants needs to be refilled. I keep forgetting to reorder. Or am I just too busy?

  At Mass General, the psychologist hands me pen and paper, and I prepare for the next test. I am a little surprised that I can’t seem to control my anxiety. No one except the researchers will see my test results.

  I already went public several years ago, opening my genetic profile test results on camera on ABC’s Nightline. Anchor Terry Moran and I went through the genetic testing experience together to open up a dialogue about the potential risks and benefits of knowing your predisposition to a disease when there are no cures.

  As one of nine children of a mother with early-onset Alzheimer’s, Terry was relieved by his results. I, on the other hand, found out that I have one of the genetic markers that researchers say is associated with increased risk of getting Alzheimer’s disease. I did not worry about sharing the information on television. I had already let television cameras inside my home to see life with Harvey; it seemed less invasive to let them film me opening an envelope that contained results I had long assumed anyway. But I will never forget my son’s reaction. No sooner had the piece aired than the phone rang. It was my son shouting. “Mom, what the hell did you just do?” he asked me. “You’ll never be able to get health insurance.”

  I had told Jason that I was doing a television feature and that I was taking the test. He later admitted that he hadn’t considered the impact until he saw the program. I understood his reaction. Fear of repercussions is why many people refuse to get tested. In almost every circumstance, I consider myself a very private person. The only reason I agreed to go public was to try to spark an important conversation.

  I believe knowing my risk lets me prioritize what’s important. I want to get my life in order now while I can still make decisions and plans that neither Harvey nor my mother got to make.

  I have two long-term-care policies. Unlike Harvey, I’ve left clear directives about what to do if I am incapacitated by Alzheimer’s disease. I want to be cared for at home, in my own home, not a facility. If I can no longer lift my hand to feed myself, I don’t want to be fed or given water. This hopefully guarantees that I will not live with Alzheimer’s for very long. I do not think Jason will feel comfortable with my decision, but being a burden haunts me more than death.

  The images of Jason I hold close are the best of my memories. Dana is tolerant when I call exactly at 8:10 A.M. on his birthday to wake him on the moment he was born. I marvel at the authentic man he has become, but I am not sure what he will remember or cherish most about me.

  We were alone together for most of his early years. Now when I watch him enjoy his children at play or indulge them with tennis and riding lessons that I could never afford, I regret that I left him an only child. Jason has borne the brunt of what happened to Harvey and me. Alzheimer’s has changed him too. How could it not? But this is not something either of us wants to discuss.

  Lately, I have been trying to get my papers in order. Sorting through letters and mementos, I admonish myself not to be sentimental and toss them in the trash. Why leave curious and unanswered questions behind for Jason as Harvey did for me?

  On my night shift, I take comfort in sitting alone in a living room surrounded by sentimental souvenirs we collected on our travels. There is no room on the coffee or side tables for even a drink. This is my memory shrine. It is the only place where my mind can go still. Many of the objects have small slips of paper underneath. My grandchildren are picking out—at my invitation—things they would love to have from Nana’s collection. I am curious about what they treasure most and prefer to know now.

  Hope sits in our kitchen taking endless photos of GG on her iPhone and recording their awkward attempts at conversation. Now fourteen years old, she is sensitive that just sitting with GG is the best way to connect. Her brother Eli, who just turned twelve, entertains us with a trumpet serenade while Benjamin, age nine, wheels himself past me in Grandpa Harvey’s transport chair. This is how we make it through the holidays from one year to the next.

  Dana and Jason have carefully coached them past their early fears. Over years we have built the lore of grandpa Harvey—athletic, full of fun, a special doctor and most of all, how much he would have loved and been proud of them. Researchers say our earliest memories fade by ages six to eight. It’s not that we forget, but our brains aren’t developed enough to retain them. But what happens to children who have to live face to face with Alzheimer’s all their lives?

  Alzheimer’s creates a vacancy that cannot be filled. I want to enjoy being with those I love while I can still make memories with them.

  A celebrated columnist asks me over dinner a question that has been troubling her: “Can you have true intimacy with another human being without shared memories?” She has started to write a column, but it remains unfinished, tucked away in a drawer. There is no easy answer to her question when you have lived the disease.

  Everything I have done for my husband has been intimate, more than any adult would ever consider desirable. A caregiver must cross personal boundaries. The intimacy of total dependence and loss of control is one we all fear.

  Over the years with Harvey, the care became clinical. I always took care of him with respect and love, but my attentions came without a hint of sexuality because Harvey cannot communicate either pleasure or gratitude. Shared memories must be built on both. Memories warm us. Separated from our memories, good or bad, who are we? In this sense, we have both lost out on an intimate life. But unlike Harvey, I still have memories that intensify my sense of loneliness. Long after the dinner with the columnist is over, I want to go back and offer her my answer. No. The answer is no. You cannot have intimacy with another human being w
ithout shared memories.

  Why are the walls in testing rooms always a dreary white, devoid of visual distractions? Why does the time between tests seem interminable? I am already starting to fret that I won’t be able to remember the preceding battery of word associations when asked to recite the words back. Why can’t I relax? Though tempted, I don’t dare pick up my iPhone to check messages. I worry that I will lose focus and not perform well when the psychologist calls me back in. I do not want there to be a problem. Even more, I do not want the psychologist to notice I have a problem.

  When Harvey became mute, so did I in many ways. When Tom Hutton, Trustee of the Geoffrey Beene Foundation, reached out, I found my voice again. It was a lifeline for which I will always honor him.

  Every day I ask myself if I am doing anything that makes a difference. It surprises me a little that I am back taking the same kinds of tests Harvey once took. Doctors were the ones who kept telling me privately that Harvey couldn’t last long. Their words strengthened my resolve to see him through to the end. But closure still seems far away.

  The last of the husbands and wives with early-onset Alzheimer’s in our small circle of care and support have all passed away. Their spouses—my friends—have moved on to recapture what’s left of their lives; some more successfully than others. One man cannot erase the haunting image of his petite wife being carted off on a stretcher in a straightjacket from their upstairs bedroom in the middle of the night by police and medics. In their need to escape the past, they have stopped calling me. I understand and wish them well.

  Strangers still reach out to commiserate and question me. For many, their journey with Alzheimer’s has just begun. I make no pretense about having answers. Nonetheless, I am unable to brush aside their pain. I am a listener and sounding board more often than I am prescriptive.

  After all that has happened, and given the unknown that lies ahead, I am still not sure that I could or even would have done things any differently.