David’s palliative care doctor had just predicted that his funeral would be in 3 to 6 months. That brought us to attention. We had not heard 3 before. So, David thought about everything that we still needed to do: obit written, tombstone purchased, funeral reception planned, liturgy chosen, pallbearers selected. I insisted that we had everything planned, “you can relax.” I emphasized, “there is nothing left to do.” Then, he asked, “what about your funeral clothes?”
It was clear that we had to shop for my funeral clothes. No sparring about that. David and I both loved clothes, and we particularly liked shopping for clothes for me. Every year, on my birthday, January 12, we hit all the clothing stores during the January sales. One year, we both went on vacation and shopped for 10 days straight. I really needed funeral clothes.
I searched for the best women’s clothing store in Milwaukee—Aversa. They were having a trunk show. I had never been to a trunk show, but I called the owner of the store, asking for a large dressing room. I told her that my terminally ill husband, and his large wheelchair, were helping me shop for funeral clothes. She stumbled a bit, but reserved about one fourth of the store.
On July 12, David, myself, and a friend got into her car and took off, parking at the back door. David walked the very short distance, sat comfortably in a large chair, surrounded by designer mineral water, and took charge. No one doubted that. The sales clerk was not even second in command. The New York Lafayette 148 designer ran back and forth bringing endless rolls of fabric for David’s approval. I stood stoically, while the sales clerk draped fabric around me. Our friend crouched on the floor behind me, using stick pins to fashion the fabrics, a skirt, slacks, or whatever. At one point, I was enveloped by four layers. This was July, and I was hot. Fortunately, I had thought to wear a very slim silk tank top.
David critiqued: “No, that’s the wrong color for her,” “No, she will be allergic to that,” “I don’t the different texture in the jacket.” After the designer had taken my measurements for two complete outfits, and David had started to work on the third, I asked him, “where do you think I’m going to wear all those clothes?” A fundraiser friend piped up, “I will make sure she wears all those clothes.” David firmly and emphatically responded, “I want her to have enough clothes for the rest of her life.”
At this point, the designer needed to know what size slacks I wore. I went into the dressing room to try on different sizes. I have extremely good hearing, and while I was in the dressing room, I heard David say in a rather loud stage whisper to the ever growing audience, “these are for my funeral. But don’t say anything to Nancy or she will cry.” When I came out of the dressing room, everyone was looking at me, questioningly.
So, I asked David, “What do you want me to wear to the funeral?” He looked confused and said, “why should I decide?” I paused a moment and then said, “it’s your funeral.” The entire store burst out laughing. I’m sure the designer dined out on this for a long time. I suspect all of New York heard the story.
The beauty of the shopping trip, besides the clothes, was that David and I remembered what marvelously good times we had had clothes shopping for forty-seven years. We were excited and happy. But when we returned to the apartment, I realized, “this will never happen again.” Death did not go away. David was too weak to go to the final fitting. But, he gave clear directions on which of the two outfits he wanted me to wear for the funeral: a heavy, gray tunic and slacks in which I felt like a monk. He thought the other one was too flirty, swishy. Fortunately, he did not die in January, but in May. So I wore the flirty, swishy outfit.
Everyone understands the term “midwife,” but there is no term for describing the person who travels with the terminally ill person to their death. I use the term death coach in lieu of any ready-made term. The job is extraordinarily exhausting and emotionally difficult, requiring extreme patience, understanding of the dying person, and the ability to listen without expecting a response. It is like being a psychoanalyst 24/7. And, the job can be long, with no sense of how long it will take. The rewards are love and anguish as the job gets closer to death. When I entered David’s death room, the room radiated love and anguish, the two were inseparable.
In March 2017, at a conference on aging and spirituality that we had funded and I had initiated, I listened to one of the speakers talk about the time spent on birthing. She regretted that no one as paid any attention to deathing: she and her husband spent considerable time thinking about how they will take care of each other when they are dying. Her husband was sitting in front of me, and I told him I had been death partner. Did he want to learn about it? His face looked frightened and eager. They did not have time. But when I was the one to take them to dinner, he asked about being a death partner.
When David was dying I promised myself and him that if I could help someone by talking about it I would. So, I talked about dying without emotion or any obvious affect for over an hour. They took it all in. The husband said, “I just finished taking care of my dying mother for a month. I don’t see how you could do it for that long.” He seemed to know about the sense of inadequacy, incompetence, powerlessness, and helplessness that were part of being a death partner. Before we got up from dinner, he asked me, “what do you need?” I told him: a condominium in DC. He said, “good, you have a plan.”
I thought I had done a good thing. and I felt that I had done the right thing, a good thing, but when I got back to my apartment I collapsed on the bed. Exhausted. That night, I was right back to the months of terror. I remembered how I felt every night, “how can I go through another day like this. I can’t do it.” It was noon the next day before I could escape from the memory. And, again, I feel that if I write our story, I will have to experience it all over again.
As David and I said to each other during the long months, “I can’t go on. I will go on.” I feel Samuel Beckett’s words again as I continue writing our story. I don’t see how I can relive this again, but I can’t do anything else until I write our story. Karma? I’m writing it because I can’t not write it.
No matter how we would like to deny it, we all will die. But, unless we have a heart attack or are killed instantaneously in an accident, some of us can choose how we die. We can spend our last days seeking treatment in the hope of gaining time, perhaps poor quality time, or we can choose how to die, while consciously living to the end.
David and I chose to die, and never looked back on the choice. We looked death in the face every day, every minute, for twenty-six months. Living with this choice was more difficult than either of us could have imagined, but it was our choice, our way. We found that we needed all of the human experience, all of the humanities – history, philosophy, theology, literature, psychology – to live out this choice. When people would comment on how unusual our way of dying was, we would look at each other, in some amazement, and say to each other, “I don’t see how else we could’ve done it.” And, looking back, I would not have missed it. The 26 month death vigil taught us who we were, who we still are.
The experience was “sacred.” The most intense time in my life, the only part of my life that is completely true. Nothing is bigger than choosing death deliberately, and consciously living to the end while waiting to die. I was at my best during this time, and I was most truly myself. This process was so huge and so ultimately beautiful that, after that, everything seems to be insignificant, and not worth pursuing. Three years later, I am unable to write about anything else. I keep trying to capture this ultimate human experience.
We received the deadly diagnosis on September 23, 2013. By the next month, I had started recording our conversations. In early February 2017, I listened to them again, what I heard was very different from what I heard when I listened to them after David’s funeral. Listening to them again, I am struck by how analytical they are, how they all insist on factual information, how they constantly face the inevitable fact of David’s death. We faced it every day, and on some days, not often, we discussed what I would do when David died. In his last few months, he would often ask me, “where will you go when I die?” I would answer, “I don’t have the energy to even think about that now.” It took me two years of energy to decide where to go, and another year to actually move.
Today, May 18, 2018, is David’s third death date. The term “death date” assumes huge proportions. The first year, I went from month to month, from the eighteenth of one month to the eighteenth of the next, anniversary to anniversary, wondering if I would make it to May 18, 2016. Each month became more difficult. The fifth month hit me the hardest because David had never been away that long, except for the five months while recovering from severe septicemia. But, he came back, he always came back. This time, I knew he would never come back. I didn’t know if I could get through the first death date, and I dreaded it.
When it finally came, the death date staggered me. I just hung on, waiting for the day to be over. I did not remember David’s death, I did not imagine it, I reexperienced, back in his death room for his last three days. From earliest morning, I was watching the clock, waiting for the exact time of his death. At that precise moment, 10:30 AM, I sent an email to the people who had been with me during the long months of his death. We all gathered to go to a memorial mass said by the Jesuit who had said David’s funeral mass. Then, the first death date was over.
I was always aware of the approaching second death date, but I was not afraid of it. My friends sent notes and telephoned me, but I had packed the day with activity to distract myself. Besides, at this time I was angry at David. I was sad, but not shaken to my core.
This year, I don’t know what to expect. I have moved from the death place, I’m living in an apartment where David had never lived, and I’m just beginning to believe that I will have a life of my own, no matter how difficult it is to find that life. I’ve been feeling like Nancy Klein Maguire, independent, resourceful, and resilient. But, I’ve been working on the chapter in my book describing David’s last days. Writing that chapter puts me right back in the death room. So, this will not be an easy death date. Send me good thoughts.