Slow Dancing with a Stranger (20 page)

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 of 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 without 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.

I am a person who does not quit once she embarks on something important. There is a price to pay for that type of determination and I'm living it. I apply the same passion to my advocacy. I suppose that Alzheimer's is the final test of whether I can keep up such high standards for myself.

I make no assumptions about what I am doing. I replay constantly whether what I say or do will resonate in any way. I question whether telling my story will make any difference to anyone. Sometimes I think that greater public awareness about Alzheimer's, instead of reducing the ignorance and stigma, has actually increased it. Even those unlike Harvey, who announce defiantly to the world that they have early-onset Alzheimer's, are often marginalized professionally and later socially. A dementia-friendly society is not yet in reach.

There are academic scholars who argue that our fear of forgetting is irrational, a scare tactic of advocacy groups or businesses that want to sell anti-aging products. But I disagree. There is nothing irrational about our fear. Our fear matches the facts.

I worry that people will be offended by my honesty about this disease. I don't think I have done anything that other caregivers haven't done for family and friends they love—though perhaps I have done it longer. But I claim no special expertise, and I refuse to pretend that my way is the right way. My advocacy is all about making sure no one ends up like me.

Today has been emotionally exhausting and a bit unfulfilling.
It is hard in this kind of study—stretching over years and years, the data not available to the participants—to truly feel that one is making a contribution. I long for a way to make research projects and trials more accessible to hundreds of thousands of us doing the same things over the years, all of us working together, a community of citizen scientists. I know that in time there will be an infusion of technology platforms that will make participation less cumbersome and the data more widely available to all who want to study it. Only then will we be able to reach the numbers of people needed to sustain prevention trials and long-term research.

The young researcher reenters the room and interrupts my conversation with myself. She politely asks if I am interested in giving a blood sample for a companion study. I defer apologetically. For now, I have tested my own limits. It is time to get back home.

It has been almost eight hours since I have checked in at home.
The nurses knew that I would be offline, but they had the number to the testing lab in case of emergency. No urgent e-mails or text messages pop up on my screen. I check in anyway. After so many years, I can't imagine the feeling when I won't need to constantly check in—when I won't be needed in such a personal and intimate way. Is that what freedom from Alzheimer's will look like?

A few years ago, I read a study reporting that the public's second biggest fear, after getting Alzheimer's, is being a caregiver. I understand this feeling, and yet it is demoralizing. I became an advocate because I can't handle the pain any other way.