Slow Dancing with a Stranger (16 page)

I worked hard on my testimony; every word had to count. Thinking back on it now, I admit that it was exhilarating to walk through the alabaster-columned halls where I hadn't been since Harvey got sick. The hearing room was filled with advocates; the expansive, semicircular seating reserved for members of Congress was empty except for two committee chairs. The hearing was being fed live on C-SPAN. Did close-up shots hide the insult of the congressional no-shows?

The Association staff had insisted on editing my remarks for the public record. They wanted the caregivers to stick to a narrative about pain rather than offer policy changes. In the end, I left the House chambers frustrated. This had been an expensive lesson for a newly minted advocate: extra nursing charges and I hadn't been able to say what I wanted. I vowed not to let that happen again.

Three years earlier I had met George and Trish Vradenburg, politically connected and committed philanthropists to the arts and Alzheimer's. George's corporate acumen and inclusive leadership style was punctuated by Trish's charismatic charm and Comedy Central wit. We were all at dinner to broker a joint gala between two Alzheimer's non-profits. The organizations went their own way, but we bonded as best friends. Trish had a knack of making everyone genuinely feel that way, except when she was hounding elected officials to support our cause. Even then, they vied to be her dinner partner.

Time spent in their company became both my respite and refuge. Neither of them had ever known Harvey and sadly, there was no way to know him now.

They encouraged me to join with them—first, through a series of Alzheimer's galas they chaired for the National Alzheimer's Association, that over eight years raised over 10 million dollars for care and research. But galas lost their glitter and no longer matched our priorities. We were frustrated by so little progress on the research and political front. Together we launched an alternative, more activist series of advocacy networks, under the flagship USAgainstAlzheimers, and made possible by their largess. We believed in the power of US and our fight was personal: Trish to honor her mother and out of fear, George out of love for Trish, and for me, a desperation that Alzheimer's was not going to take me down too.

I started with a few personal articles, opinion pieces tucked
away in journals like
Alzheimer's & Dementia
. I was testing my voice, trying to find a way to convey the growing sense of urgency I felt that something needed to change.

No disease should be allowed to have as its victims both the patient and the caregiver. But that is exactly what is happening every minute of every day.

I wanted people to understand the magnitude of the problem. The kind of care I gave Harvey was hard and labor-intensive and unending. I did not want my son doing for me what I had done for my husband and mother.

We have juggled work and caregiving, abandoned careers for part-time employment, been forced into early retirement, and jeopardized our own retirement futures. None of us think of ourselves as a martyr or selfless. We are just doing what needs to be done for a loved one. But what happens to them if something happens to us?

It was a start. But even in those pieces, I never dwelled for long on the details. I struggled constantly between my feeling that people needed to see what happened behind closed doors and my natural preference for privacy.

Then, in the summer of 2006, I had an invitation to go public.
Susan Dentzer, then a health correspondent for Jim Lehrer's
PBS NewsHour
, called to inquire whether I would consider being interviewed for a segment on Alzheimer's disease. She had already reported on the science and economic burden. This segment needed a human face and a willingness by the subjects to let the camera crews into their home. I briefed Dentzer and her producer on the challenges for both patients and family caregivers. By this time, Harvey was no longer verbal. He spent all day confined to a wheelchair.

There had already been interviews in the media with newly diagnosed adults in their early fifties and sixties. I applauded their advocacy, but worried out loud that the public image being put forth by early-onset patients might neutralize rather than advance research funding. To their credit, they did not act or appear impaired so it was hard to understand the personal tragedy of Alzheimer's disease unless you knew the disease. In interviews, these patients were unable to concede how dependent they were on their spouses to get through each day. Their protective caregivers were reluctant to say anything more than a few tight-lipped comments that acknowledged that daily life had its challenges. After all, who among us takes away a loved one's last hurrah?

Even among Alzheimer's support groups, the unspoken rule was not to speak publicly to protect our loved ones' dignity. I couldn't help but worry about the reaction if I decided to let a camera into our home.

The only fresh angle I might offer was one rarely shown: the intensity and physicality of daily care. It made sense to expose the caregiving reality at a time when politicians were promoting keeping patients at home as a solution to Medicare's looming insolvency.

As a former television reporter, I knew the rules better than anyone. Once I let a camera inside my home, I lost control of the narrative. I would have no input editorially, no right to approve the video used in the final feature. I consulted my son and daughter-in-law, who were strongly opposed. They refused to be interviewed on camera or allow their kids to be photographed, and they threw out a series of questions that bothered me for weeks.

“Do you really want anyone to see Harvey in his condition?”

“Do you want strangers criticizing and second-guessing your decisions?”

“Would Harvey want people to see him the way he is now?”

As I wrestled with these questions, I couldn't help but think back to 1994, when former President and Nancy Reagan revealed to the nation that he had been diagnosed with Alzheimer's disease. It was a courageous act that gave the disease a public face and left analysts debating whether there had been early signs of disease during President Reagan's second term. I had watched that interview while seated next to Harvey. Out of the blue, as the doctor he used to be rather than the Alzheimer's patient he was becoming, he said, “This is a horrible disease and so unfair to the families.” He was either totally unaware or deliberately in denial.

Nonetheless, after that one television appearance, Nancy Reagan had refused to discuss anything more. The public never saw the former president diminished; her devotion was to honor her husband and protect his legacy. The public could attach the name of the disease to a famous and familiar face, but the disease itself was still hidden from view.

There was risk involved in showing our life in all its vulnerability. Would viewers misread my motives for letting cameras into our home? Would families with relatives suffering from Alzheimer's disease resent the fact that I exposed demeaning details no one wanted seen? I debated the value of letting people see Harvey diminished instead of remembering him at the height of his career.

My reluctance to give up our privacy was weighed against seemingly overly ambitious goals: trigger a public wake-up call to the personal devastation of Alzheimer's and spotlight the crushing societal burden of the disease. In my passion to change things as an advocate, was I being too naive?

I debated these questions in my mind for over three weeks before finally calling back the producer and accepting to be filmed on two conditions. I insisted on discretion when it came to footage around the intimate care of bathing and dressing. I also asked that there be no video shots while I washed Harvey from the waist down or diapered him. Within those limits, the public deserved to see the harsh reality of the disease.

It was time to bring Alzheimer's disease out from behind the shadows of fear and stigma. Living behind closed doors did not honor his dignity. I had to believe Harvey would understand.

Even the celebrated PBS documentary,
The Forgetting
, which originally aired in 2004, never showed the real hands-on care. The general public and even families, who paid professionals to do the hard work, missed the details we were about to expose. Would my kids forgive me?

The night before the television crew arrived, sleep evaded me, just as it always had before I covered a major news event. The morning of the taping, I looked in the mirror and began putting on my makeup, but then stopped in the middle and washed my face. I did not want to hide the toll the disease takes on caregivers. The audience needed to see the emotional burden of the disease. I felt vulnerable without my makeup and the pain unmasked.

Fortunately in 2006 my mother was not yet living with me. There was room for only one story at a time. The crew arrived at 6:00
A
.
M
. and spent all morning shooting daily care. Susan arrived later for the sit-down interview. The crew needed to move on to another assignment, but they were missing footage that captured the kind of trauma that forces families to put loved ones away. So the producer left behind a special camera on a tripod for me to capture those unexpected moments.

One came late at night. After changing Harvey's diaper, I was trying to get him back into bed when he slipped and landed on the floor. I couldn't lift him and he couldn't help me. I turned on the camera. I let people see Harvey, totally helpless in his underwear and splayed on the floor, groaning unintelligibly. The camera recorded me in Harvey's old checked terry cloth bathrobe, trying unsuccessfully to get him up.

“I'm going to try to get you up, Harvey,” I told him. “Harvey, sit up for me.” Harvey's only response was, “No, no, no, no, no.”

At that moment, I didn't care whether I looked inept. I didn't think about how the room, once a library filled with wonderful books and now stripped bare like a hospital room, must look to a television viewer. There was no time for vanity or the normal considerations that once bounded my life. I wanted to capture the daily occurrences, the routine incidents and indignities that took such a toll on caregivers. Later, friends asked me what was going through my mind in that moment. I was not even sure. It had happened before. Another time in the middle of the night, it was a call to 911 to the firemen to help get Harvey off the floor. When I watched the tape, I heard the despair in my voice as I pleaded with Harvey, words that went unheeded because he did not understand what I was saying. “Harvey, please help me, love,” I begged him. “Harvey, I can't do it. Honey, I can't do it.”

I told only family and a few close friends about the scheduled
airdate. I knew they would be honest with their feedback. Even those closest to me were incredulous when they saw our daily life on the screen. The reality was I hadn't even let them in about the full details of my life.

The professional television journalist in me couldn't bear to
watch the two segments for months after they first aired, worried about what I would see. Nonetheless, telephone calls and e-mails arrived with a deluge of mixed emotions. Lisa, who had visited our home in the early days, called dismayed that things at home were so difficult. Trish and George wouldn't take no for an answer and insisted on dropping by.

The
NewsHour
segment triggered numerous unexpected conversations with people who recognized me from the program and thanked me for being willing to tell the truth. One day in the supermarket, an older woman hovered close until I noticed her.

“Alzheimer's destroyed my family too. Only after my sister and brother saw your story on TV did they call to apologize for not helping me more when our father had it. You made it possible for us to talk again. Thank you.”

A nurse from Copper Ridge called, expressing concern that I was going to badly hurt myself. She offered to teach me how to use a Hoyer Lift to move totally disabled patients like Harvey.

A well-dressed man in his midfifties caught up to me walking on a downtown street to say, “Your story was hard to watch. Too bad your husband doesn't know how lucky he is. I don't think my wife would be as good to me. I'm afraid to ask and find out.” Then he turned and crossed the street before I could respond.

On a shuttle to New York, a sleep expert from Scripps recognized me and offered that lack of sleep over time increases the risk of dementia. “Be careful not to become the other victim of this disease,” he warned. I smiled, then closed my eyes. I had been up all night.

At a dinner meeting, a scientist to whom I had just been introduced, pulled me aside to ask, “Please forgive my blunt question. Are you doing what you do for your husband out of love, or are you just trying to do the right thing?” I must have appeared perplexed because he quickly added, “I struggle with this question myself, which is why I asked. My wife was diagnosed three years ago. The woman I live with is becoming less and less the woman I fell in love with and married. I fell in love with a person, not a body. How must my relationship evolve? I asked you because you have had almost three times longer to think about it. I also asked you because I believe you will tell me what is real, not what is ‘correct.'” He deserved an answer, but then was not the time. I offered him my business card with a hug and a whisper to call me.

Professional women, most of whom I didn't know, contacted me out of the blue through e-mails. They both admired me and admonished me for sacrificing my career. A few shared the toll Alzheimer's had taken on their own marriages. One woman e-mailed me that she thought I was brave going public. She added that she would draw the line on caring for her husband when he either became incontinent or wandered away. Most said they did not plan to take care of their spouses at home.

I was mulling over the varied reactions when, one day, a woman I knew professionally called me and said she urgently needed to meet. Over breakfast at a neighborhood bakery, she confessed that she was struggling to get both her husband and herself through the early stages of his Alzheimer's diagnosis. No one yet knew that her handsome husband, a Washington insider, was in the early stages of disease. For now, at least, she preferred to keep it that way.