This is a wonderful piece from the New York Times on loss by a writer living with her ill husband. It speaks to many of the issues we all face in dealing with impermanence, denial and loss of control. Very often the subject of death can become very clinical and abstract, but the author here shares the very intimate details of her interactions and feelings, and in so doing, communicates some important truths about courage and healing.
A Decade of GoodbyeBy JOAN MARANS DIM
These weeks after the passing of my husband, Stuart, I often think of Joan Didion and her book “The Year of Magical Thinking,” and about how her beloved husband, John Gregory Dunne, died suddenly of cardiac arrest while sitting in his living room.
During Stuart’s illness, I considered Ms. Didion fortunate to be spared a long goodbye. How much more difficult it is when one suffers a decade of caregiving — the dash to hospitals, the languishing in emergency rooms, the years of chemo and radiation. A path that leads only to degradation as a 175-pound man, who scaled mountains and joyously ran marathons, one day transmogrifies into a 118-pound skeleton, with a failing liver and kidneys.
For the last decade death has been hovering, but now it scratches at our door.
“I always hoped in the end the docs would pull one last trick out of their hats,” he says.
Then, “What is it like to die?”
“I don’t know,” I answer.
Departure grows near. He knows it, but rejects the idea. For me, illness has so permeated our lives that I can’t imagine it will ever end. Time has been our only friend. His illness will get worse, of course, but not for a while. There will always be just a little more time.
Then he turns yellow, like a summer squash. But we still watch “Jeopardy” and Brian Williams; traces of normalcy remain.
Until finally, in March, there is the conversation.
“We can’t offer you anything else,” reports the oncologist. Suddenly, the moment is at hand, not unexpected, of course, but somehow unbelievable.
Hospice arrives. He hates the word “hospice” because it solidifies reality.
“People leave hospice,” I offer.
“In a box,” he snaps.
The plan is that Stuart will die at home. The hospice program delivers a walker, an oxygen machine, a hospital bed, a portable potty and a package of medicines, which I am forbidden to open without the nurses’ permission. The critical medicine is morphine, to be administered by mouth in droplets.
I am told Stuart needs 24-hour nursing care. He doesn’t want strangers in the house and protests. I am afraid to be alone with him when he dies. What will happen if I cannot ease his pain?
Each morning he is a micrometer sicker.
On the morning of June 21, he rises and walks to the bathroom without using his walker.
“Please,” I beg, “use the walker. If you fall, you will break bones, and the pain will be unbearable.”
“I can do it. I can do it.”
The night before, the nurse offered to give him a sponge bath, and he refused, saying he was too tired. Days have passed since he has properly bathed.
“Let me give you a sponge bath now,” I volunteer.
He has never let me tend to his most personal needs, but today he willingly sits on the corner of our bed as I help him disrobe. His entire body is jaundiced. I soap a sponge, gather towels and wash him. The moment is intimate, a rarity for us. I massage his back, chest, arms and legs with moisturizer.
“That feels so good,” he murmurs.
Joan Didion never had such a moment, I think.
I dress him, and he asks for his walker. But I am not finished. I want to comb his hair. In 52 years of marriage, I have never combed his hair.
“O.K.,” he says. And smiles.
I am meticulous in this act of grooming. Then I step back and study him.
“You look handsome,” I say, and mean it.
The night nurse has left, and the day nurse has yet to arrive, so I help him into the living room and into his favorite chair. I prepare breakfast. I can see him from the kitchen. He reads the paper and briefly chats with his broker, then says he doesn’t feel well and wants to go to bed.
“Don’t move,” I say. “I will help you.”
As he grips the handles of the walker, I slip my hand under his armpit and with all my might strive to lift him. He rises almost fully and then, abruptly, his arms and legs become as lifeless as a puppet’s as he falls back, unconscious, into his chair. His eyes are closed. He is dead, I think.
I rush to call hospice.
The nurse arrives as Stuart slowly revives; he twists in agony. Morphine is administered, but the pain does not ease. The nurse tells him he needs hospital care — an IV, stronger drugs — and that he will not be able to die comfortably at home.
He ignores her. He wants to rise and walk, but he can’t. Most of all, he wants to live.
“You are dying,” the nurse flatly tells him.
Anger fills his eyes. He will not give in.
“These are probably your last lucid moments,” she continues. “Your wife is here. What do you want to say to her?”
I see something different in his eyes, a softening. Maybe, finally, an acceptance. He looks at me; I am shaken and silent.
The nurse grabs my hand and pulls me to his side.
“Stuart,” the nurse urges, “what do you want to say? This is your last moment.”
He speaks to me. But he says the words so quickly that I now can’t remember exactly what he said. Then he falls into unconsciousness, and swiftly the ambulance carries him to Calvary Hospital, where he peacefully dies.
We were married 52 years. What reasonable person could ask for more? And yet, if I had one wish, I’d add just five more minutes. Even though the last decade was a misery, I feel luckier than Joan Didion.
In my bereavement group, a participant mourning the death of his partner talked about the “honor of being present on the last journey.” I understand what he meant.
Joan Marans Dim is an author, with Antonio Masi, of “New York’s Golden Age of Bridges.”