by Sally Quinn
* * *
By now, our psychiatrist, Steven Wolin, and I both knew about Ben’s dementia, which explained everything about his behavior, especially the recurring bouts of hostility aimed at me and only me. I also had read enough about dementia by this time to know that the patient usually takes out his feelings of anger, frustration, and fear on the one closest to him. That was me. With everyone else, he was still fabulous Ben, but there were times when he would be sarcastic, contemptuous, and even verbally abusive to me. I understood why, but it was still unbelievably painful. I wanted to get back what Ben and I had had together. By this time, Ben was no longer seeing Steven.
At one session with Steven I told him about a poem I had discovered in high school, “Maud Muller,” by John Greenleaf Whittier. I thought it was one of the most poignant things I had ever read. It’s about a young country maid and a judge who comes by on his horse and asks her for a drink from the stream. They chat for a while and then he rides away. She can’t help wishing she could be his bride and he can’t stop dreaming of her. She marries a poor, uneducated man and has a passel of children. He marries a cold, social-climbing wife. They each live out their days longing for the lives they might have had with each other. The poem ends with the line “Of all the sad words of tongue or pen, the saddest are these, ‘it might have been.’”
Nothing could be sadder, I thought even at the time, than to have regretted not doing something you wanted to do, not taken that road, opportunity, risk, adventure, that leap of faith. I vowed I would never be the one to say to myself wistfully one day it might have been.
Yet here I was with my beloved Ben seeming to turn on me, and me not knowing how to deal with it. I couldn’t bear the idea of having him die and be left with a lingering sorrow, thinking I could have done something differently.
Steven found the poem, read it to himself, looked up, and sighed, then asked me to read it aloud. I told him I couldn’t. He insisted. I started to read and only got through the first few lines before I broke down, barely making it to the end. He told me it was up to me to make sure that I would never have those regrets. I needed to keep loving Ben as much as I could and would. Stroke him. Cherish him. Be grateful for him. It worked.
Not that there weren’t episodes after that, but the unconditional love I showed him and he returned to me really changed things. After that, I never had to say or even think to myself it might have been. I had him and all the love I could ever want or need.
* * *
At one point, PathNorth, a group I belonged to, was having a meeting in New York. PathNorth was started by AOL’s Steve Case and Doug Holladay, a hugely successful businessman who had also been to Princeton Theological Seminary. It’s a group for leaders, CEOs, and executives who get together in informal settings and talk about the meaning of life. Doug would ask questions like “What makes you feel alive?” “What truly matters?” “How can we be better versions of ourselves?” “How can we do well by doing good?” There is a spiritual but not a religious component in the sharing of new ideas and connections to become deeper people.
Doug and Steve invited Ben to participate in a conversation with Jon Meacham in front of about 150 CEOs. I wasn’t sure it was a good idea, but Ben wanted to do it. I explained to Doug Holladay, the head of the group, that Ben had become somewhat forgetful and I also discussed it with Jon. They thought it would be fine so we scheduled it.
We went up to New York two days early to see friends and go to galleries. The day before the lunch we were walking up the wide steps to the Metropolitan Museum of Art when Ben started to collapse. I got him off to the side of the stairs where he sat down and blacked out, his eyes rolling back in his head, his mouth open as had happened at George and Ali’s. I didn’t panic right away but held him for a few minutes until he came to. We sat there for about half an hour until he said he felt okay, then got up and slowly walked to the street, hailed a cab, and went back to the apartment where he slept the rest of the afternoon.
I told him we could cancel the event the next day but he insisted he wanted to do it. Even as we were getting dressed that morning to go to the lunch, I could see that he wasn’t in full Ben form and again suggested canceling. Again he insisted he was fine.
We got through the lunch somehow. Ben was at a table with me and everyone was talking to him and he appeared to be having a good time. It wasn’t until after the lunch when we went into the next room for the talk that I began to feel nervous. Ben and Jon were seated on a platform in front of the packed house. I was in the first row. From the beginning I was worried. Jon started by asking Ben questions about his navy experience in World War II, and Ben had a hard time articulating his responses. Jon kept trying, bringing up the Pentagon Papers, Watergate, the state of journalism, anything he thought Ben might respond to and be able to talk about. Ben, however, was shifting in his chair and looked anxious. I could see Jon’s concern.
Finally Jon asked Ben another question. Ben looked down at me and said, “Help me, Sally.” I prompted him. Jon looked at Doug, Doug came up to the platform, thanked them both, and started the applause. Ben stepped down and was immediately surrounded by people.
I told Jon I had to go to the ladies’ room and rushed into a stall, afraid I would throw up. As I was there a group of women came in and began talking about Ben. To my surprise they exclaimed excitedly about how wonderful it was to get to hear Ben Bradlee.
* * *
Happily, Ben had recovered from the blackout as he would from others and went back to being his old self, though still confused at times. We continued to live our lives as normally as we could. He continued going to the Post every day.
One of the things I learned from the doctors was that these lapses were unpredictable, infrequent, and unexpected, which made them particularly alarming. 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 that fall, though, I knew it was time to come clean. I was going to have to tell people that Ben had dementia. This was one of the hardest things I ever had to do.
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. They had actually gotten married at our house, Grey Gardens, on Long Island years earlier. Harry was twenty-five years her senior. 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.
Once people—family and friends, everyone at the Post, and those who knew Ben only by reputation—found out, our lives changed, as I knew they would. 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 when we did go out. I’d make sure the person on his other side was aware of Ben’s situation.
Again, Don Graham was amazing. 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. Everyone on the ninth floor was clued in. Ben was welcomed and embraced with open arms.
* * *
The geriatric psychiatrist recommended a fabulous support group called “The Friends Club” that met in a church in Bethesda, Maryland. There were twelve men at various stages of dementia who met three days a week from 9:30 A.M. until 1:30 P.M. 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) to get together and hang out several times a week. Sandra Day O’Connor’s husband, John, had been in the group and so had Sargent Shriver. In fact, they apparently got into a pissing match one day when John told Sarge he talked too much.
At a cocktail party during that time, at Walter and Cathy Isaacson’s, I saw Sandra, who had been a close friend of my parents through the Arizona connection with Barry Goldwater. She took me aside, put her hands on my shoulders, and with glistening eyes, said, “I just want you to know this is horrible, horrible, horrible.”
For reasons that I will never understand, Ben agreed to go to the support group. On the first day, I took Ben to “school,” which is what he called it. I hadn’t been that nervous since I first took Quinn to nursery school, knowing he was learning disabled and had a speech defect and terrified he wouldn’t be accepted by the other kids. I sat in on the whole session, next to Ben. The people who ran the group were brilliant with the men. The men were clearly at different stages. 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 shit!” 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. All I could think of was all those years I tried to attract friends to Quinn when he didn’t have any by being funny and talking too much, trying too hard. 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. He had never been so loving in his life. As I drove him home he just put his hand over mine and said, “I love you, babe.” It was like a miracle. It was a miracle. I felt in some way that God had given me Ben back. He loved me that way until he died.
* * *
I was beginning to have to help Ben get dressed and undressed, to help him shower and shave and brush his teeth. At night I laid out his clothes for the next day. He had forgotten how, and I wanted him to look well groomed and sharp.
At this point I rarely left him. I moved my office from the third floor of the house and turned an old pantry next to the library into a little retreat for me so I could be near him all the time.
One day I had to go to New York and stay overnight for work. Carmen, our fabulous house manager, had also become a caretaker of Ben’s. She said she would sleep on the sofa in our bedroom because I was afraid he would try to go downstairs and hurt himself. He refused to let her, so she kept the bedroom door open and slept in the room across the hall. The next morning she came in to wake Ben up and was shocked to find that he had completely destroyed my dressing room. He had turned over the chairs, torn the skirt on my dressing table, taken all the clothes out of the closet, trashed the medicine cabinet, cracked a mirror, broken a metal lamp with his bare hands, and knocked over the TV. He was sprawled across the bed dressed in my clothes, sound asleep. She couldn’t get him up for school. She called me frantically, and I came home immediately. According to the doctors, this was a psychotic episode. He had absolutely no recollection of it. It would be the first of many. Oh, Ben, oh, Ben, where have you gone?
I tried to protect Quinn from as much of this as I could but still let him know that I needed his help. I didn’t want him to be afraid of his father. He worshipped Ben. There were some things, though, that I thought would be too hard for Quinn to confront. Happily, Quinn and Pari were living in the house attached to ours, a house we had rented out until he came back from school with a group of roommates. Sadly, they were about to separate amicably. We never told Ben.
When things began to get really bad, Quinn and Pari were an enormous help to me and wonderful to Ben. There wasn’t an evening they didn’t come over to give him a hug, have a cocktail with us, and watch the news. This was his favorite part of the day and mine too. They and Carmen, as well as all my wonderful friends and family, sustained me.
* * *
Still, I needed to get away again. I was losing myself. As it happened, PathNorth was having its annual silent retreat at Holy Cross Abbey, a Trappist monastery in Berryville, Virginia, acres and acres of rolling hills on the Shenandoah River.
I drove to the monastery on January 7, 2013. I had no idea what to expect and I was particularly self-conscious about going. We were to spend nearly three days in absolute silence. Even at meals. No phones, no TVs, nothing.
I could feel the tension dissipate as I drove in and saw the old manor house where meetings were held, the chapel next to it, and the retreat house to the right, sitting up on a rise overlooking the wide flowing river.
Steve Case and Doug Holladay had arranged for twelve of us to be together for these few days. My friend Tim Shriver, author and chairman of Special Olympics International, was also a participant. The entire group met first to talk about our expectations before we began our silence. This was not necessarily meant to be a religious exercise. For some it was, for others it was simply a time for quiet. That was what drew me in.
The discussion we had that afternoon was stunningly candid about why each of us had come. I talked about Ben and the exhaustion of taking care of him. One man talked about how he had gotten a very harsh letter from his wife, which ultimately led to a divorce. Given that everyone there was considered an extremely successful, privileged person there was a lot of pain in that room. After the meeting, we did not speak.
Our rooms at the center were comfortable but spartan. A window, a single bed, a chair, a dresser, and a lamp. No locks on the doors. I had brought a few religion books to read and there was reading material available and even a small library. The “dorm master” was a monk who lived in the building. Right down the hall from my room on the ground floor was a beautiful small simple two-story-high chapel with a cross at the altar and a stone font in the front. I went in there just to look around and found myself sitting silently for a long time just looking at the cross. My mind was a blank. A rare blissful blank.
The monks prayed the “Divine Office” or “Liturgy of the Hours” five times a day: vigils at 3:30 A.M., lauds at 7:00 A.M., midday prayer at 2:00 P.M., vespers at 5:30 P.M., and compline at 7:30 P.M. I decided I wanted the full experience so I went to all the services. I went to the first one at 5:30 before supper. The services—short, maybe half an hour, with readings and chanting and prayers—were in the main chapel attached to the monks’ quarters and the manor house up the road. I liked being there alone but not alone. I felt comforted. It was already dark and freezing cold and we trudged through the ice and snow back to our quarters. A simple supper—meat, vegetable, and a starch—was self-served at a long U-shaped table. No alcohol of any kind. I didn’t really feel like a drink. We ate in total silence with the strains of monks chanting over the sound system. The silent meals were my least favorite part, in fact the only thing I didn’t like about the experience. There is something unnatural to me about sharing a meal, breaking bread with others, and not communicating with them. A meal is a ritual. It should be sacred. It should be a holy communion of sorts. There should be wine and candles and laughter and joy and shared experiences.
I finished eating in about fifteen minutes, washed my plate, grabbed an apple to take back to the room, and left. It wasn’t long before the 7:30 compline. We had to take flashlights to guide us through the pitch-black to find the chapel and get back. Nobody spoke. I went to bed immediately, knowing I had to get up for the 3:30 A.M. vigils. I was surprised at how many of us actually showed up for the 3:30. Again, it was a calming experience. Back we went with our flashlights and
fell into bed. The 7:00 A.M. lauds was the hardest to get up for. I felt I had barely slept. I came back, got some oatmeal, and fell back into bed, not to awaken until lunch. After lunch I went to the 2:00 P.M. midday prayer.
I decided to take a walk. With twelve other guests at the monastery, I expected to run into someone but didn’t see another soul. I headed down the long road to the entrance and turned toward the river. I went past the open-air chapel where services were held for the Cool Spring Natural Cemetery overlooking the Shenandoah River. At Cool Spring bodies are covered only with a shroud and lowered into the ground with a river stone as a marker. I rushed past the cemetery. I didn’t want to think about death.
I found my way to the riverbank. The sun was getting lower and it was very cold, but I came upon a thick log right on the edge and sat down, leaning back against a tree. The water was dark and frigid, the sound of it rushing was urgent yet oddly soothing. Maybe because it seemed alive. I thought about Ben and was shocked to realize that it was the first time I had thought about him since I’d been there. How was that possible? He consumed me.
I don’t know how long I was there. Maybe two hours, staring at the turbulence below me. I had unconsciously picked a pointed branch off a small tree near me, covered in dead leaves. Slowly, methodically, almost meditatively, I began to pick off each leaf until it was completely bare. It was only after I had finished that I understood what I had done. Each leaf represented something in my life that I had had to give up or was about to give up in order to care for Ben the way he needed to be cared for and the way I wanted to care for him. I had divested my life of all the nonessentials and I was happier for it. I felt free instead of burdened. I felt content instead of agitated. I felt gratitude that I was able to do that and to devote myself to him. He wouldn’t be with me for long. I was losing more of him every day. I wanted, no, I needed to concentrate on Ben until the end. Only then would I be able to deal with what I knew would ultimately be my great loss.
