Women are at the epicenter of the Alzheimer's crisis.

That's why we must be at the heart of solution. - Maria Shriver

How Loss Strengthened My Faith in Love

BY SALLY QUINN

Architect of Change Sally Quinn is a veteran Washington Post reporter and the wife of the late Ben Bradlee, the paper’s legendary former executive editor. In her new book Finding Magic, Sally bravely opens her heart and shares what it was like to gradually lose the love of her life to dementia. It’s a touching tale of true love and will allow you to see the personal effects of this disease in a whole new light. Read an excerpt from her new book below and check out her book here.

I always thought that my marriage was perfect, that our love was inviolable and eternal, but on January 8, 2003, Ben and I sat in the waiting room of a highly respected Washington psychiatrist named Steven Wolin. We were miserable. Our once glorious marriage was tense and strained. Neither of us understood what was happening, and it is only now, nearly fifteen years later, that I can more fully understand the why of it all.

I was devastated by Ben’s change in attitude and behavior toward me. His personality had always been sunny and optimistic. Suddenly he had become moody, downbeat, and in some instances outright hostile. Nobody else saw that side of him. It was only directed at me. I was crushed by the changes in him. They had come on gradually, but now it was clear that this behavior was intensifying and not going away.

He didn’t like the idea of being “put on the couch.” He also didn’t like to be on the defensive, which he definitely was once I described the situation from my point of view. Ben seemed a bit confused when he heard me relate our problems, as though I were talking about somebody else, not him. He kept saying things like, “I can’t believe I said that or used that tone. That’s not who I am.” He would say, “But I love her. Why would I talk to her that way?”

In 2011, a reporter called Ben at the Post, where he maintained an office as a vice president at large, to interview him about something sensitive that had happened at the paper. Ben was very forthcoming — in fact, too forthcoming. He told the reporter much more than he should have, much more than he knew. After the piece came out, I went to Washington Post Company Chairman Don Graham and suggested that it might be time for Ben to stop going to the Post. Don, the kindest human being on the planet, refused to even consider it. However, we did work out a plan. All the secretaries and assistants on the floor were advised never to put a call through to Ben without checking with his secretary Carol or Don or me. Everyone was told to turn down all interview requests. Ben never knew about it.

It had been five years since he had been diagnosed with early-stage dementia, but few outside the family knew it. Almost every day he went down to the Post cafeteria for lunch and would be immediately surrounded by a coterie of reporters and admirers, and that seemed to perk him up. There was always a group conversation and as long as Ben gave somebody the finger or told somebody to “f— off,” people didn’t seem to notice the forgetfulness that much. I organized a lunch group at the Madison hotel across from the Post, where I had a running tab. Carol had a sign-up sheet and up to five people could join. It was always full. We called it “Tuesdays with Ben.”

One night we went to George Stephanopoulos and Ali Wentworth’s house for a party. We were all standing around having cocktails when Ben, suddenly pale and weak, collapsed on the sofa and proceeded to have what looked like a seizure. His eyes rolled back in his head, his mouth dropped open, and he blacked out. Within minutes, we were speeding to George Washington University Hospital. Within a half hour, Ben was alert and talking, telling anyone who would listen to “get me the hell out of here.” He was fine.

It was only a day or two later that I realized he was behaving differently. He wasn’t as sharp. He had lost something. I was the only one who noticed.

We continued to live our lives as normally as we could. He continued going to the Post every day. Between episodes, Ben was alert, insightful, and aware. The awareness made the lapses all the more painful. What was so compelling was that I never knew when I was going to have the real Ben as opposed to some stranger. By the fall of 2012, though, I knew it was time to come clean. I was going to have to tell people that Ben had dementia.

Ben was in his office and I stopped by. The phone rang and Carol picked it up. It was our old friend, British editor and publisher Harry Evans, the husband of editor Tina Brown. I took the call. “Harry,” I said, “Ben can’t take calls anymore. He has dementia.” There was dead silence on the phone and then Harry plaintively said, “Oh dear, I’m afraid we’re all going to end up that way at some point, aren’t we?”

It was done. We were heading into a new life, a life I was dreading, and yet a life that would be fulfilling in a way that I never could have imagined. The A-word is a killer, which is why I always said “dementia,” even though it was never clear which he had. Somehow Alzheimer’s sounds like something one could catch. Dementia sounds tamer, more like gentle aging. At dinners, I would ask my friends to seat me next to Ben so that I could protect him. I’d make sure the person on his other side was aware of Ben’s situation.

I suggested once more that Ben give up his office. Again, Don wouldn’t hear of it. He was resolute. Ben’s office was there for him until he died.

The geriatric psychiatrist recommended a fabulous support group called “The Friends Club” that met in a church in Bethesda. There were twelve men at various stages of dementia who met three days a week. I thought I was in for a big fight with Ben, that he would never agree to go to some “candy ass” program. I never described it as a club for men with dementia. I told him it was a group for old Navy men and foreign service types and journalists (all true). Sandra Day O’Connor’s husband, John, had been in the group and so had Sargent Shriver.

For reasons that I will never understand, Ben agreed to go to the support group. On the first day, I sat in on the whole session, next to Ben. One man sat quietly, not participating at all. There were others in the group, the newer ones, who seemed quite normal until, after an hour or so, they began repeating themselves. Every once in a while, one of them would stop in the middle of talking and say, “I can’t remember s—!” The others would totally crack up with appreciation. Ben did too. He began to relax.

I found myself holding court, keeping the conversation going around the table, telling stories, basically standing on my head. I was trying so hard to entertain them all so that they would like Ben. It was emotionally exhausting. I had become Ben’s protective mom. Ben held my hand during most of the meeting. I could see how dependent he was on me. He was so nervous and looked lost. I had never seen Ben like that. It killed me. Any hostility he had been showing to me simply disappeared. As I drove him home he just put his hand over mine and said, “I love you, babe.” I felt in some way that God had given me Ben back.

In August of 2013, Jay Carney, then Barack Obama’s White House spokesman, called me to say that the president was going to award Ben the Medal of Freedom but that it was to be kept a secret until it was announced some weeks later. Ben was ecstatic, although I’m not sure at that point that he really understood what was happening. That night we had people for dinner, a number of journalists, and Ben announced to everyone that he was getting the Medal of Freedom. He had forgotten it was a secret.

The ceremony was to be in November, and Ben was obsessed. Night after night he would get up at all hours and try to dress for the ceremony. At that point he had lost track of dates. The night before the awards I invited all his children, his grandchildren, his stepchildren, his step-grandchildren, and his nieces and nephews for a family party. Ben was in his element.

I was surprised at how important this medal was to Ben. Public affirmation of his achievements was something he had never really cared about. Especially in his later years, he was constantly being asked to be celebrated at various events. He almost always declined. Yet, here we were, as Ben was about to receive the highest civilian honor an American can get, and he was beside himself with excitement and anticipation.

He must have known that he was coming to the end of his life. He had been reminiscing more than usual about his past. In some way this medal represented to Ben so much that had given his life meaning. He had served in World War II, defending his country and its values. He had worked as a journalist for nearly sixty years, devoted to finding the facts and exposing the truth, defending the Constitution and the First Amendment and all that it stood for. He had fought the good fight, he had finished the race, he had kept the faith.

The plan was for me to go early to the White House for the rehearsal to stand in for Ben and he would come later. There was no way he could stand around for hours beforehand.

Among those who were being honored that day were Bill Clinton, Oprah Winfrey, and Gloria Steinem. I had walked through the drill along with the other recipients. They had to walk up the aisle of the East Room to the podium, get up the stairs, wait for their citation to be read, walk up to the president, receive the medal, get back to their chairs, and then get back down the stairs. I was frantic. I knew Ben couldn’t do it by himself. He was particularly out of it that morning, probably out of nervousness and excitement and lack of sleep. He had his good days and his bad days. This was a bad day.

In desperation I went to Clinton and asked if he would help Ben get through it. He took Ben by the hand and guided him up the red carpet to the podium and helped him to his seat, signaled him when he was to get up, helped him over to the president, guided him back to his seat, and then took his arm and led him out of the room when it was over. I was so grateful.

At the reception the former president came over to me laughing. “Do you know what Ben asked me? He said, ‘Did I ever piss you off?’ ” Clinton told me he had responded no, “but that’s only because by the time I became president you had already stepped down as editor.”

Ben went home and slept the rest of the afternoon. Miraculously, when he woke up, he was himself again so we were able to go to the president’s dinner for all the honorees, present and past.

President Obama made a point of going around the table and greeting everyone. He spent an especially long time talking to Ben who held his own in the conversation, laughing and joking. It was as if he had had a giant bolt of energy come down from the sky and infuse his body with his Ben-ness. I couldn’t have been more proud or loved him more that night.

It was Thursday, September 11, 2014. Ben would be dead in a little over a month, but I couldn’t have predicted that. We were moving forward with life as usual, our new normal. Ben was tired but in a good mood. He was always happy to see his doctor, Michael Newman, and we had a jovial conversation about Ben’s overall health. Ben said he was slowing down but felt fine. Michael asked the nurse to take Ben for a blood test, then shut the door and sat down.

“I’m putting Ben in hospice care,” he said.

“I’m sorry?” Clearly I hadn’t heard him correctly.

“I’m putting him in hospice care.”

“What does that mean?” I asked. “He’s not dying. He’s healthy as a horse. There’s nothing medically wrong with him. He sleeps a lot and is confused, but the geriatric psychiatrist said he could live for five more years.”

“I know,” said Michael quietly. He was always honest with me, and beyond empathetic. He loved Ben too.

“How much time does he have?” I asked finally.

“Maybe four months but I doubt it,” he said. “Probably two.”

Ben’s hospice nurse, Vallerie, began visiting regularly. Ben still had no idea she was a hospice nurse. Or maybe he did. He hadn’t asked a single question about his health.

I was moving full steam ahead with funeral planning. It was a strange yet welcome distraction, a way to keep my hands busy and my mind occupied. I had called the National Cathedral to set up an appointment with the staff. I had lined up the choirs, a tenor, a band, the food and a tent for the reception, the programs, the evergreens for the church. I hadn’t cried. I had too much to do and not enough time, although I still hadn’t accepted it yet. I was planning all this just in case. . .

A week or so before Ben died, Vallerie was conducting a “routine” checkup on Ben. Suddenly he turned serious.

“When am I leaving?” he asked.

“What do you mean, Ben?” I responded.

“When do I have to go?” I looked at Vallerie. Was he saying what I thought he was saying?

“Go where, Ben?” I asked.

He appeared frustrated and impatient. “When am I going home?”

“You are home, Ben,” I said, taking his hand. “You are home.” He closed his eyes and leaned his head back on the sofa.

Vallerie motioned to me to leave the room with her.

“He’s asking when he’s going to die, isn’t he?” I said, barely able to keep it together.

“Yes.”

I knew that “going home” was the closest we were going to get to speaking about his death. His spirit was in me and mine in him. We didn’t need to say anything to each other. He knew and I knew. We both knew.

What did Ben’s death mean to me? I got religion or some sense of spirituality from the idea of love, self-sacrifice, mystery, and magic. It happened to me in a much clearer way at that moment. It illuminated for me the story of my life.

Being in love with a man on his deathbed is not romantic in the traditional sense, but I was more in love with Ben then than at any other time. I was in love with him every minute of every day, until the day he died. And I was more in love with him the day he died than I had ever been before.

I have faith in the power of love. Ultimately loving is the most important thing a person can do. Giving and receiving love is encapsulated in another of my favorite words, albeit a rarely used one, redamancy, which means “the act of loving in return.” George Sand was right when she wrote, “There is only one happiness in life, to love and be loved.”

Finding Magic is in stores now and available online here.

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