The impact of the living

When we think about death, most of us think primarily about our own death. If we think about it in terms of its impact on others, we think about whether we have provided for our loved ones sufficiently through insurance or inheritance, whether anyone will miss us, whether we have done anything worth being remembered for in the larger world.

…what the Hell do I do now?

But we don’t spend much time thinking about how our deaths will really emotionally affect the people who love us.  Part of it is most of us are pretty self-centered when we think about death—when we think about it at all. In the United States, we are almost pathological in our efforts to avoid death and avoid talking about it. More importantly, however, none of us wants to think about the psychic pain our deaths will inflict on those closest to us. Contemplating our own impending death is hard enough. Contemplating its true impact on others under those circumstances is beyond most of us.

The proper focus excludes us

Even if we know someone who is dying, our thoughts are rarely on those they are leaving behind. Instead, we focus on the dying person’s last days and hours. The soon-to-be-mourners wrestle with their coming loss in the sickroom, but largely try to put up a brave front for the soon-to-be-deceased in order to ease that person’s movement from life into death. We do what we can to ease that passage, telling them they will soon see the loved ones they have lost, that they are going home to the heaven they believe in, and we ply physicians and nurses with pleas to ease the dying person’s last hours with the latest concoctions of modern medicine.

…most of us are pretty self-centered when we think about death…

Then, the breathing stops, the heart shuts down, and the brainwaves vanish.

Every death is different

Sometimes the death is sudden. Sometimes it comes with agonizing slowness. Sometimes there is time to say good-bye—to say all the things you want to say to each other. Sometimes, there is only a phone call or a knock on the door, and all the things you wished you had time to say can never really be said.

We do what we can to ease that passage…

Whatever it was that animated the body is gone. The survivors make the necessary phone calls to the relatives and friends who could not be at the bedside. They write eulogies, finish the funeral arrangements, and prepare for the wake and the burial.

Ritual thinking, ritual words

Those rituals are supposed to give the survivors comfort. We go through the receiving line and offer our stock phrases: “I’m sorry for your loss;” “At least they are no longer suffering;” “I’m here if you need me;” “Anyone as good as they were has gone straight to Heaven;” “Call me if you need anything.” Some people bring food by the house in the immediate aftermath. Others send flowers or sympathy cards.

Sometimes it comes with agonizing slowness.

The night Jane died, I called her sister and father. I’d told them not to come to Boston on that last day because I wanted them to remember Jane as she was the last time they had seen her. In retrospect, that may not have been the right thing to do—but it seemed so at the time. I asked them to call Jane’s aunts, uncles and cousins.

And now you know

Then, I called my father. He had lost my mother just 10 months before after a long struggle with Alzheimer’s. “And now you know,” he said, “That there is nothing anyone can say to you that is going to make this feel any better.” That may sound cold and heartless, but it was the truest thing anyone said to me in the ensuing months—and somehow there was more comfort in that than in all the hugs and condolences that followed. My father was telling me the one thing I really needed to hear—that the bleak greyness that had crept around me for weeks and now shrouded everything, was not going to go away because of what people said to me, no matter how well-said or well-meant. Jane was gone—as my mother was gone for him—and nothing was going to bring her back to me this side of the grave. If I were going to live—really live—again, I would have to accept that reality and deal with it: there was nothing anyone could say. There were things they might be able to do that would help me get through what I was feeling, but the clichés of the receiving line—no matter how carefully crafted—would be of no use.

Those rituals are supposed to give the survivors comfort.

Strangely, I thought at the time, I felt pretty good in the immediate aftermath of Jane’s death—so much so that I apologized to her doctors and nurses for seeming so unaffected by it. But I had, finally, given her the dignified death she wanted—even if it had been delayed from the earliest moment it might have happened. I was proud of the way she had fought her cancer, proud of the way she had moved the hospital staff with her constant displays of love and courage, proud of the way we had held each other up. I was relieved that she was out of the agony and the soul-crushing embarrassments of the uncontrollable diarrhea she had endured. She was no longer in pain and had moved on to our garden home, where she would be cared for and loved and prepared for her next flight into this world.

Think about impact of different deaths

I have slowly come to realize that this is a normal reaction for those who lose a spouse or a parent to cancer or some other protracted death. We are relieved that their pain—and our own, born in having to watch their final struggle—has finally ended. They are at peace—and so are we.

I was proud of the way she had fought her cancer…

The death of someone we love brings a stunning shock with it that numbs our souls and our emotions for a time. It lets us function in the world long enough to get through the funeral planning and participation. It lets us stand at the head of the receiving line and talk with those who have come to say farewell. It let me serve as a pall-bearer to help carry Jane’s coffin to her grave, as I had once carried her across the threshold the day we were married. It let me convince everyone that I would be fine. I even had myself convinced.

I wasn’t fine

But I wasn’t fine—and I should have known I wasn’t fine. I should have known the moment I entered the empty house the night Jane died. The quality of the silence was different—different even from the silence of the times I had come home to water the plants and pay the bills while Jane was in the hospital. It was the silence of a house that no one lives in—a silence that can only be experienced and never really described.

I should have known by the way my body curled into a fetal ball in the extreme upper left corner of the bed—as far from where she should have been sleeping as possible.

I should have known from the way I aimlessly wandered the house the next morning—finding myself now in this room and now in that with no idea how I got there or why I was in that particular spot.

They are at peace—and so are we.

I should have known from the way I could not bring myself to open the bag of clothes we had taken to the hospital for her to wear during her physical therapy in the step-down unit—the bag of clothes that we had never opened.

I should have known from the way I could not open the plastic bag that contained the clothes she had worn the day she checked into the hospital for the surgery to replace the valves in the right side of her heart that her cancer had destroyed.

I should have known from the volume I played the music at to break the silence and fill my mind with something beyond the thought that she was dead and never coming home again.

There were a thousand other things that should have told me then—and in the days that followed–that I was not OK—and that I was never going to be OK in the way I had been ever again.

It is nothing…

I’ve lost both my parents. I know what it is to find myself an orphan at 62 years old. I know what it is to suddenly be the oldest person in my immediate family. I know what it is to stand over the body of my father’s corpse. It is nothing compared to losing Jane.

We lost Jane’s mother four years before Jane died. It was the most horrible death I have ever witnessed. She spent the last three days of her life suffocating from the effects of pulmonary fibrosis. It was like watching someone drown for three days and not being able to do anything about it. I know what it is to lose a mother-in-law who has adopted you as her own son. It is nothing compared to losing Jane.

I should have known…

I have lost students I cared about deeply—every teacher does. I have cried uncontrollably for those losses. But they were as nothing compared to losing Jane.

I have never lost a brother or a sister. I have never lost a child as a parent does. I don’t know what those things feel like. I may experience the first. I will likely never experience the second. Perhaps they are like losing Jane was for me. Perhaps they are worse.

What we say and what we do

But we don’t talk about any of these things until they happen to us. Even those who have been through them only talk with others who have had those experiences. And most only do so briefly. We are like soldiers who have experienced combat. We do not speak of it to the uninitiated.

It is nothing compared to losing Jane.

We have this bizarre belief that grief lasts a year, at most—that anyone who has grief that lasts beyond that needs professional help because that kind of grief is abnormal, at best—and unhealthy, at worst.

A different vision

I work with an online grief group that has a very different attitude toward grief. We say, “The deeper the love the longer the grief.” We talk about adjusting to the “new normal” that is never the same as the “old normal” even if we fall in love again and remarry. If we were given to laughing at ignorance, we would laugh at the idea that once around the calendar through all the firsts—the first Christmas, the first New Year’s, the first Valentine’s, the first birthday, etc.—cures grief and returns one to the person he or she was before their spouse’s death blew their world into smithereens that make the task of putting Humpty Dumpty together again look easy.

We have this bizarre belief that grief lasts a year…

Our experience is that often the second run through the calendar can be just as hard as the first. Perhaps it is because of the belief that after the first go-round everything is supposed to be normal, which raises our expectations too high to be met by the reality. I can’t say. I know only that I am facing my fifth Christmas without Jane—and that it still is not right, despite putting up a tree every year and decorating the house.

People think we’re fine

One of my neighbors lost her husband to a heart attack more than 15 years ago. She tells me she still has not healed from his death. My father died 54 months after my mother. He was still mourning her death when he died. My father-in-law, over eight years after his wife died, still has not recovered from her death—nor has he recovered from Jane’s. Neither has Jane’s sister.

I know only that I am facing my fifth Christmas without Jane…

Of course, we all look fine. We do the grocery shopping, keep our houses tidy, read the newspaper, watch television, go out with friends, work—some of us even date—though I haven’t yet. I even have two friends who have remarried.

But the world is different for all of us. We do not see the world in quite the same way. We do not experience things in quite the same way.

Experienced voices

When Jane was in the hospital, I ran into a younger couple whose experience was similar to ours in some respects. The husband had gone through serious heart surgery with a long recovery and poor prospects of success. He had survived—and more.

We do not see the world in quite the same way.

He spent 30 minutes telling me what Jane needed from me—and his perspective as a patient was invaluable. But when he went off to answer a phone call, his wife took me aside.  Her role had been what mine was now.

Our point of view

“Everything he told you is true,” she said. “But he was a patient—not the caregiver—not the spouse. Our experience is different from his—and different from you wife’s. They don’t know the things that we know—they don’t know the things that we experience. They have no idea how hard it is to be positive every minute we are with them. They just expect it—and get angry with us if we fail even for a second. He threw me out one day—said I clearly didn’t love him enough if I couldn’t stay positive.”

Her role had been what mine was now.

Her husband had survived, she told me. But there were times the doctors had told her things he never heard. It was a miracle he survived—and a miracle the stress had not driven her crazy. She told me to get out and walk for a while every day—even if Jane wanted me there every second. She told me I needed to eat whenever I could—and that I needed to eat as healthy as I could.

Actions have consequences

“You’re going to lose weight,” she said. “You probably already have.  You are putting huge stress on your body—and no matter how this turns out, you are going to get really sick yourself if you don’t take care of yourself. And after the hospital thing is over, no matter what, you have to keep taking care of yourself. You have to force yourself to laugh—no matter how miserable you feel. Go rent the funniest comedy you can find—and make yourself watch it. It will help you get through the aftermath.”

‘They don’t know the things that we know…’

She was right on every count. By the time Jane died, I had lost 20 pounds—over 10 percent of my body weight in less than six weeks. The night before Jane died, I realized I had stopped walking the way I had—I was using an old-man-shuffle to get around. I was 58 years old. And I couldn’t remember the last time I had really laughed.

Complications

Of course their situation was very different from Jane’s. He had faced one major, high risk, heart surgery. It had gone well. Jane’s heart had been much more badly damaged than expected. Her surgeon had to get creative to make it work—but he had succeeded. Jane’s heart was healing normally.

By the time Jane died, I had lost 20 pounds… 

But her cancer complicated her recovery. Unlike most cancers, her tumors came with the power to create any of the 24,000 hormones and peptides the body manufactures. Her tumors had settled on serotonin, a hormone that controls digestion, blood pressure, and respiration among other things. Any operation or physical stress can kick the tumors into high gear, creating what doctors call a carcinoid attack that crashes blood pressure and respiration while causing dehydrating diarrhea.

God is an elephant

And Jane’s heart operation was the first of three procedures we would have to have done—including, potentially, one that had never been done on a patient with her cancer before.

Jane’s heart was healing normally.

I am not a traditionally religious person. I think most views of God(s) are like the three blind men sent by their busy king to find out about the elephant. The first describes it as a great snake that blows out hot air. The second calls the first an idiot and says it is a great dusty wall. The third calls down curses on the other two for their clear ignorance, for the elephant, he says, is like a rope that ascends to heaven—and when you pull on it all this smelly stuff comes down and hits you in the head.

What no one tells you

But if someone asks me for proof of an interested divinity, I point without hesitation to that chance encounter in the lobby outside the sixth floor cardiac ICU one day in early December, 2010. Between the two of them, I learned some things I desperately needed to know that I had no idea I needed to know.

I am not a traditionally religious person.

There are lots of articles and books for patients about the challenges they face as they deal with cancer or heart disease or a host of other diseases. When you visit a doctor or surgeon, they will patiently explain what the procedures are they will do and how they will affect your body. But no one explains what your role as spouse/caregiver needs to look like. No one explains to you the emotional rollercoaster you are about to embark on. No one tells you just how murky the lines are when it comes to making life and death decisions about your unconscious love’s treatment. No one tells you anything except that you need to take notes, keep the list of questions that need to be answered and ask those questions when your other half—caught up in the breathtaking moments of treatment and confusion—forgets to ask them.

Then it all changes

We and the doctors and nurses focus on the patient—as we should.

And just about the time you figure out all the things you really need to know and do that no one has told you that you need to know and do, you turn from caregiver and assistant to chief mourner and executor. And no one tells you about any of that in advance, either.

There are lots of articles and books for patients… 

If you get lucky, a social worker comes to talk with you in your spouse’s last hours when all you want to do is hold her hand and whisper final words to her that will comfort her and guide her home. You are numb and torn by a range of emotions that includes anger, sorrow, guilt, and failure. There is no one there to take notes or ask the questions you should ask but don’t know you should ask—nor how to ask them even if you do. Maybe there are other family and friends there at that moment, but they are nearly as torn up as you are.

The question

And if you are like me, you look and sound competent and aware and healthy while every dream you had turns into insubstantial dust that gets picked up by the ventilation system and blown out over the city.

You are numb and torn by a range of emotions…

One thought kept coming back into my mind unbidden over and over again: I am too young to be a widower and too old to be a bachelor—what the Hell do I do now?