Editor’s Note: Some of what follows may be emotionally difficult for some readers. I wrote it originally for someone who has been told there is nothing more her doctors can do for her and wanted to know how Jane prepared herself and me for her death. 

Preparing for death

“Everybody is dying of something,” Jane’s mother told us after she was diagnosed in 2004 with pulmonary fibrosis. “I just know what it is I’m dying from.” Jane brought that same attitude to her own death half a dozen years later.

None of us know what is lurking in a lab somewhere.

But while both women accepted their deaths with enormous grace when they came, neither went willingly or easily. They went on their terms–and only when a fighting chance had become no chance at all. Jane and I were both convinced three days before her death that she would come home–that in February we would go to New Hampshire together and sit looking out over the lake again as we had on our honeymoon.

Into the past

That is not to say we were neither of us prepared for her death when it came. We had begun to prepare for that possibility the moment her doctor said the lump in her liver was probably cancer–even before we had the final diagnosis of carcinoid/NET cancer–even before we went in for the biopsy.

‘Everybody is dying of something.’

The morning we got the preliminary diagnosis, Jane said she wanted one more week of pretending everything was fine. We would not talk about the cancer until the day of the biopsy. We would go back to the Lakes Region, where we had spent our too short honeymoon nearly 21 years before. We would take shorter walks–but we would take them. We would take shorter drives–but we would take them.

Creating memories, recharging love

The cancer haunted the trip from the first day, but we tried to ignore it. The day we arrived, Jane was exhausted and had no appetite. She sent me out for dinner on my own. It was the most painful dinner of our entire married life for me. It was the foretaste of too many dinners bolted down in haste and sorrow over the 28 days she was in the hospital–and the foretaste of the hell of all the solitary dinners since.

…Jane said she wanted one more week of pretending everything was fine.

It was the last meal I ate alone on that trip. We took turns pretending we were hungry or not hungry. We tried to buoy up each other’s spirits–and in large part, we were successful.

Taking what’s given

The hotel we had honey-mooned in had no room for us when I called for a reservation. But they had another, even nicer, hotel in Meredith and they arranged a room for us there. It had an enormous four-poster bed that existed in two different zip codes, a small seating area, a jacuzzi, a window seat overlooking the lake and a small balcony with a similar view. There at last, for a few hours, the cancer slid away.

The cancer haunted the trip from the first day…

Jane wasn’t very hungry, but wanted some chowder, so I went down the hill to a take-out place and brought some back to the room. We sat in the window seat with our legs entwined and ate and talked and dreamed. Eventually, we climbed the ladders on either side of the bed and slept in each other’s arms.

A final photograph

In the morning, we took a short walk around the bay. Jane loved taking pictures of landscapes and water scenes. She took her final pictures that morning. Then we recruited someone to take a picture of the two of us together. It is grainy and out of focus, but I framed it after she died and put it on a table where I can see it.

There at last, for a few hours, the cancer slid away.

We sat on the balcony, read the papers and had a small breakfast. Then we came home. We were rested and ready for the war ahead.

Power of shared memories

I tell this story because it was the beginning of how we prepared each other for her death. We created a final, powerful and beautiful memory that would sustain us through all the painful struggle that was ahead of us. The first step in preparing for death is to remember how much and how deeply you love each other.

We were rested and ready for the war ahead.

The trip was painful in very many ways–but it was also a joyful celebration of who we were–of who we still are. It was more important than any bucket list because it gave us a pool of remembered strength we could draw on when things became more difficult. And they did become much more difficult.

Facing death together

The morning after we came home was the day of the biopsy. I wish they gave spouses the same drugs they give the patient on days like that. Jane said they could have told her she would be dead within the week and it would not have bothered her. She said she finally understood why people became drug addicts.

…it was also a joyful celebration of who we were…

In the days after the biopsy we spent lots of time talking. We spent part of that time remembering the past, but far more of it talking about the future. We would neither of us give up hope until there was no hope. That was our pact. And when there was no hope, it was clear I was to let her go.

Life and death conversations

I did not have to infer that from our conversations. It was what she said. It is supremely important that you have this conversation with your loved ones, regardless of whether you are sick or not. You need to know what they want–and they need to know what you want, in terms of what measures to take when you are no longer in a position to make those decisions.

…when there was no hope, it was clear I was to let her go.

Your spouse–or someone else you trust–needs to have a signed medical proxy. If you want a Do Not Resuscitate Order, you need to sign that as well. But you need to know that the language in those, while legally accurate, is medically vague. Your healthcare proxy needs to know precisely what lines you are willing to cross and which ones you are not. (Each state or province has its own forms for a health care proxy, which is why I am not supplying a link to a specific form.)

Unexpected complications

Jane and I thought the language was pretty clear and went into the hospital with that understanding. When she had her first carcinoid crisis, I discovered just how medically vague the language could be. Fortunately, I had lots of conversations to fall back on–including the words “fighting chance” that we had often used to describe our bottom line.

…they need to know what you want…

Those conversations are not easy to have. They mean you are both admitting and accepting the idea of death. The first time I brought it up, Jane accused me of giving up and wanting her dead. I didn’t, but talking about even the potential of death was a place she was not ready to go yet. But comfortable or not, those are conversations everyone needs to have.

…I discovered just how medically vague the language could be.

The other thing that needs doing–and a thing we both neglected–is to make sure all the financial and other affairs are in order. Everyone should have a will. Probate is a major task without one, even for a married couple. A written list of where to look for everything is also a good idea.

Death and anger

Everyone is familiar with the five emotional stages of dealing with death. They don’t always seem to work very well when applied to grief, but they do seem to apply to those facing a fatal illness, whether their own or of someone they care about. We both went through denial, anger, bargaining, depression and acceptance. Of the five, I think the most difficult for couples–or at least for us–was anger. We tend to take our anger out on those who care about us because they are less likely to fight back.

…admitting and accepting the idea of death.

Jane’s anger was sometimes explosive. I think sometimes she wanted me to explode right back. There were times I probably should have. But I couldn’t because I was too aware of where the anger was coming from–and that made her even angrier. You are going to get angry. Your spouse is going to get angry. It is important–in that anger–to remember you really do love each other. Building that final honeymoon reservoir buttressed our reserves–but it was still a near run thing.

Answering death with patience

Jane asked me once why I never seemed to get angry–either with her or the cancer she was fighting. I told her I was enormously angry about it, but I could not afford to let it control me even for an instant. I needed to keep my mind clear because I could never know when I’d have to make a decision that would require all the knowledge and logic I had.

You are going to get angry. Your spouse is going to get angry.

“When we’ve killed this thing, I’ll be able to afford to feel again. Until then, for both our sakes, I have to stay lucid.” That sounds cold and heartless, but Jane understood it for the deep and abiding love it demonstrated. We both knew the cost of controlling our emotions to that degree.

Sources of anger

She also wanted to know how I put up with the constant mood swings she was throwing at me. “Why don’t you ever get angry at the things I say and do to you?”

We both knew the cost of controlling our emotions to that degree.

“I know that anger is not entirely you,” I told her. “Most of the time it’s the pain of the cancer talking. Sometimes, it’s that I’ve screwed up and deserve the anger. Whatever the case, me getting angry with you isn’t going to help anything.”

The power of listening

Of course this makes me look like a saint–and I was anything but. I was insanely angry a great deal of the time. I took it out on rotting tree limbs and recalcitrant rocks. I didn’t mow the lawn so much as I systematically attacked it. As Jane’s body weakened, she had fewer and fewer such outlets–and her anger had to go somewhere. I was willing to become that target.

‘…me getting angry with you isn’t going to help anything.’

Through it all, we talked and listened constantly and consistently. I cannot tell you what it is to watch the person you most love slowly waste away, becoming more fragile with every passing day. Mark Twain says that efforts to accurately describe grief would bankrupt all the languages of the world. Trying to describe Jane’s slide into death would bankrupt all the languages in the universe for me.

The power of forgiveness

We had one important conversation the day before she went into the hospital. She told me that I had saved her life–that before we met she was simply passing through a joyless life to a joyless death; she told me that she knew I believed I had done a lot of things wrong in our life together, but that this was not true–and that she forgave me for all the things I thought I had done wrong and all the things I would think I had done wrong in the days ahead; she told me that she did not expect to die from this operation–that she fully intended to live–but that if she did, she did not want me to stop living–that she wanted me to keep moving forward and doing good in the world; that she did not want me to mourn her longer than necessary; that she wanted me to fall in love again;  that she wanted me to find happiness again.

…she forgave me for all the things I thought I had done wrong…

I said many things to her that afternoon, as well. But none were so eloquent or as powerful as what she said to me. She had accepted the possibility of her death by then. I had not. My denial was based not only in my own need but in my role as cheerleader-in-chief, as well. It was my job to stay as optimistic as possible and keep her hope alive.

Remembering who you are

My wife had a huge heart. I cannot tell you precisely how she came to terms with her death. It was the one thing we never really discussed. She knew it was coming–though not when or where or how. She spent some of that final fall going through her books and papers–not so much organizing them as reading them and looking at them and realizing the huge impact she’d had on so many lives. She was a teacher, and a great one.

…we talked and listened constantly and consistently.

But we all touch many lives and change the lives of all we touch. Some we change for the better if we are careful. Some we change for the worse, though rarely intentionally. We all of us do the best that we can with the time and wisdom and knowledge that we have. I know Jane thought a lot that fall about the lives she had touched and changed and made better. She found in her heart the forgiveness she needed for her failures. It was that understanding of the power of forgiveness she tried to leave me with. It was her final gift.

The end

Twenty-six hours before she died, Jane came out of her coma one last time. I told her there was nothing left for us to try–that the balance had finally swung from fighting chance to no chance–and that in the morning they would disconnect the last of the tubes that were keeping her body going.

…we all touch many lives and change the lives of all we touch.

“You’re going home to the garden,” I told her.  She closed her eyes. I kissed her forehead, brushed her lips with mine. “Good night, my warrior princess,” I whispered. I knew her soul was gone, then. It was simply a matter of waiting for her body to die and let the last of her go.

My purpose

I started out here to try to help those who are dying–not just of this cancer, but of all the hopeless diseases we still cannot cure or heal–come to terms with death–and help them bring their loved ones to terms with it as well. I cannot say whether I have succeeded in that–or in bringing you any kind of solace.

‘You’re going home to the garden.’

Everyone, as a friend reminded me this morning, faces a different death. What we each need is different depending on what we are facing, what our relationship with each other is, and what our past experiences are. This is our story. But it may not be yours. I only hope our story proves helpful to you under the circumstances you are in.

My death experience

I do not fear death or dread it for myself. It is an inconvenient fact that these bodies wear out. Jane and I saw these bodies as vessels for our souls to travel in this earth upon. I feel her soul about me sometimes, but I miss the body that she animated, the sound of her voice, and the touch of her breath when we turned to each other in the night. Death has stolen those things from me–and that loss has changed me in ways neither of us saw coming.

Living your death

Do not give up hope. None of us know what is lurking in a lab somewhere. Some doctor or researcher may have some treatment just getting off the ground. Jane’s heart surgery was simply a first step that we hoped would lead to liver ablation, perhaps a transplant, and then a bowel resection. Each of those, we believed, would buy us a year or two more–and in that time perhaps someone would find an answer–or at least something that would buy us more time.

…that loss has changed me in ways neither of us saw coming.

Jane was a woman of science. She was also determined to find a way to beat this thing, if not for her, then for the next patient. That, too, helped her come to terms with the long-odds choices we were making. The knowledge that what she went through would ultimately help others was another way she came to terms with death.