Slow Dancing with a Stranger (19 page)

A man in a motorized wheelchair approached me after this particular talk. “You know that your husband would not consider this living, and he wouldn't want you trapped either,” he told me. He asked for my card and said he would call me to continue our conversation some other time.

Less than a week later, the call came. At first, I assumed he was just lonely and wanted someone to listen. He described how his life had changed when he was paralyzed from the waist down in a motorcycle accident when much younger. His interests centered on end-of-life considerations. He shared in detail, without my request and to my horror, how to use a plastic bag to assist someone to die. The helium gas tank that I often bought to fill balloons at birthday parties would be lethal when turned on inside a plastic bag secured firmly enough not to leak.

This was the side of being an advocate that always haunted me. As the main caregiver for Harvey, I made decisions for him every day without any advice, since he had left no specific instructions. Even when he could no longer say my name, I felt he trusted me and knew I was there. When he was in pain, no one knew better than I how to adjust his body and comfort him.

Yet in my role as advocate, I was questioned all the time. People I didn't know heard me talk and felt that they knew me. They debated my choices, second-guessed my decisions. They called me late at night to talk or offer unsolicited advice.

But here tonight, with Harvey's breathing getting shallower and shallower, and during many similar crises over the years, I realized that I was alone. Being an advocate hadn't changed this essential reality of my life. Lying on the bed next to Harvey, I was the one on guard. I couldn't help but wonder when Harvey's brain, having forgotten almost everything else, would simply forget how to breathe.

Harvey survived the night. The disease did not seem to want to
let him go. The following day, I was scheduled to announce the winner of the Geoffrey Beene Global NeuroDiscovery Challenge at the Alzheimer's Global Summit in New York. I didn't want to cancel, but I was also shaken by the previous evening's events. There had been similar incidents in the past. Each time Harvey had surprised the doctors as he just sunk deeper and more diminished into the disease.

Over the last five months, I had been working on the details of an online innovation challenge, which posed a perplexing question: Why are women more at risk for Alzheimer's disease than men? I knew the statistics well. Women are twice as likely as men to get Alzheimer's disease, and we represent two-thirds of patients because we live longer. Those of us who do not get the disease are likely to be the primary caregivers for someone who has it. I was intrigued by a Mayo Clinic study on aging that had also shown differences between women and men in the onset, course, and presentation of Alzheimer's.

Sometimes, in those dark hours waiting to see if Harvey would continue to breathe, I thought about my own risks. I knew that because my mother has Alzheimer's disease, I was most likely at higher risk. The latest research even indicated that inheritance of Alzheimer's was stronger when it came from the mother's side than the father's. Women also reportedly progress faster from mild cognitive impairment into full-blown Alzheimer's than men—perhaps the reason Harvey was able to hide out for years.

What might Alzheimer's research look like if science and advocacy coalesced to crowdsource such a challenge to a global network of millions of problem solvers and experts worldwide? Why not apply innovative tools from global investigators in multiple disciplines of medical science, as well as engineering, computer science, and mathematics, to elucidate the effects of sex differences on the development of the disease? Both women and men would benefit. What better way to mobilize women than by asking a question that mattered to them?

This rigorous scientific challenge, with $100,000 in awards, had already exceeded expectations in terms of both scientific interest and global outreach, with more than eight hundred open project rooms from sixty-five countries. How could I miss this awards session? I had carefully orchestrated every element, down to betting on the wisdom of the crowd by inviting ordinary citizens to vote online alongside the scientific community for the winning submission. The results of the online finals had attracted 6,500 votes from thirty-six countries in just five days. Wouldn't Harvey want me to go? I owed it to the Foundation's donor to see this project wrapped up the right way. I whispered in Harvey's ear to wait for me and walked out the door, precisely as the morning nurse arrived for duty.

That afternoon, at the New York Academy of Science, I stood before five hundred world-renowned scientists at the Global CEO initiative on Alzheimer's and conceded that there was nothing more I could do to help my husband or others already struggling with the disease. The focus must now be on a new conversation around prevention. I saluted the passion for science shared by all researchers by relating a story about Harvey's long descent into Alzheimer's; how he dragged two bulging briefcases filled with research papers everywhere he went. One day, trying to get him to stop walking in circles, I picked up one of his early published research papers and began to read it aloud. I didn't understand what I read, but the words caught Harvey's attention. I kept reading, but with each line I lowered my voice. To hear me, he had to come closer. It took thirty minutes, but he ended up sitting next to me as I read and reread the pages. It was a breakthrough; a way into his psyche. The depth of his passion for science was intact even though he had long forgotten my name. Even without words, Harvey had taught me the power of discovery—the way it inspires those who give themselves over to research and who never give up in their search to save lives.

Heading home that night after the event, I realized something in my own life had changed. Harvey had made it through one more day in relative comfort, but the events that transpired the night before were disturbingly different. For the first time, I started to focus on the possibility that the end might be near.

O
nce again, I sit in a tiny office, filling out papers and answering questions. Everything seems familiar. There are questions about whether I have noticed any changes in behavior. These are tests to see if there are issues with memory. The appointment is at Massachusetts General Hospital's Alzheimer's Research Center. But there is one major difference. The appointment is not for Harvey. It is for me.

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.