Slow Dancing with a Stranger Read online

  I had long ago sold off the few remaining assets we had, including Harvey’s wine collection. My mother’s pension was not sufficient to cover the cost of a private institution. The only way I could stretch her limited resources as well as ours was to combine the twelve-hour nursing shift to handle both of them.

  Olga, the only female nurse who might have been able to handle my mother’s prickly personality, had been badly injured in an altercation at the nursing facility and forced to retire on disability. Dindo had already trained a hard-working young aide named Rocco to handle a shift. He was very conscientious and kind to my mother; she called him one of her best students.

  So I made Harvey’s all-male nursing team an offer. They would get a nice pay upgrade if they helped me manage the two of them under the same roof. I would still handle the twelve-hour night shift alone. They agreed to try out the new arrangement, and we settled into our new routine.

  At the time, it seemed like the best, even only, option. After my experience with Harvey, I didn’t trust the actuarial tables or the doctors’ prognosis. I had been subsidizing my mother for years, never contradicting her sense of being self-sufficient. The metallic powder-blue Plymouth with a V-8 engine, which now sat in the driveway just to keep her happy, had been my gift. When she boasted to friends that she owned her home free and clear, it was I who had paid the mortgage when the balloon payment came due. I indulged her pride because she deserved it. But it also made her diatribes in dementia more painful. I was not counting on any inheritance as the only remaining child. I wanted to honor her by keeping her retirement free from scrimping to make ends meet.

  Two Alzheimer’s patients under one roof was claustrophobic. I felt like I was locked in a room with no escape. A good daughter, I had always taken on chores and responsibilities beyond my years, starting at age ten when my mother went back to school to get a master’s degree. I was her financial and emotional anchor through every family crisis. Now all I wanted to do was escape her. There was nothing left to give her, and every time I tried, she rebuffed me. We prepared meals every night using her own recipes, but she left them untouched. She made unpleasant comments when she felt something wasn’t done to her exacting standards. She still remembered to say thank you to everyone but me.

  The focus of my frustration and anger was directed toward the disease and not my mother. I couldn’t help but wonder how other caregivers were managing. Were they forced to choose between the dreams for their kids and the needs of their parents? The advice that it was time to put a loved one away when exhaustion exceeded the guilt ignored the circumstances of their lives. What was the episode that triggered their breaking point when they just said, “NO MORE”?

  Long before my mother moved in, I had become increasingly frustrated with the way Alzheimer’s disease was portrayed to the general public. I knew better than anyone that the thirty-second television ads showing a benign image of a little old lady with slowly fading, sepia-toned memories and a comforting daughter close by did not match the reality of living with Alzheimer’s disease. Numerous nonprofits saw their mission as supporting Alzheimer’s patients and families in the moment, but none could bring themselves to be honest about what lay ahead. In fairness, no one really knows.

  My own experience made me adamant that there was nothing to lose in showing the general public graphic images of the disease, just as HIV and cancer advocates had once done. I wrestled with just how to do it. Unlike sufferers of HIV or breast cancer, Alzheimer’s patients lived behind closed doors. At this point, I already knew Alzheimer’s would win at home. Nothing I might do could change Harvey’s fate. But I did start to believe that if people saw the real face of Alzheimer’s, they might be alarmed and offended enough to band together politically.

  Harvey had dramatically progressed into late-stage disease and an even more intense level of care. One night, I called the local poison control center with an emergency when Harvey ingested the mouthwash I used to clean his teeth. The simple act of brushing his teeth daily was now an arduous chore. He would bite the toothbrush or spit at me. Then one day, he forgot how to spit. There was no way to take him to a dentist unless fully sedated. Earlier, a visiting dentist at the nursing home advised me to extract all of Harvey’s teeth. This was a not uncommon practice used with dementia patients to try to reduce tooth infections and avoid expensive procedures. I was repelled at the thought that Harvey wouldn’t be able to chew his food and would need to eat baby food for nourishment, so I rebuffed the suggestion. Now I worried that he might be poisoned or get sick from the Listerine. Not only did the on-call nurse address my concerns, but she called back two hours later to check up on us. The callback was a comfort, but it also led me to realize how little support I felt from the Alzheimer’s community. No Alzheimer’s help center I turned to had ever called me to follow up, even after they switched to 24/7 call lines. I realized that when it came to Alzheimer’s and taking care of patients, I needed to speak for myself.

  Watching our financial portfolio dwindle made my anxiety level soar. I realized that I needed to get back to work. I seized the occasional invitation to moderate industry panels for a speaking fee. I shared the stage with many of the same high-profile guests I had once interviewed as a television journalist. When people asked what I was doing now, I simply replied that my husband had taken ill and I had left my career to care for him. No one pressed further except to say they hoped things got better for us both. I always smiled and thanked them for the concern. I didn’t offer details about Alzheimer’s because I was still not sure what I wanted to say.

  Then I finally had my chance. The Alzheimer’s Association, an umbrella advocacy group whose board I had joined, asked me to testify as a patient advocate before the congressional Alzheimer’s Caucus, headed up by Democratic representative Ed Markey from Massachusetts and Republican Chris Smith from New Jersey. At first, I hesitated. I knew they would be polite, but I wasn’t sure my testimony would make a difference. Members of Congress and the journalists who covered these hearings were used to every group imaginable arguing that their condition was the most challenging, the most overlooked. I wanted to somehow break through.

  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 fr
ont. 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.