In the last weeks, fatigue is profound. Everything is fading, energy leaking away. In a profound way, this is how we die, this is death, the utter dissipation of energy. If you want to help, do the small things that seem as though they should be easy but are not. A person may want to finish a few chores, as much to spare the living from the work as for her own wish for it to be done. People need to tie things up. To finish. (I think of that moment after the adventure ends—that tired satisfaction.) Help to write letters or wrap gifts. If her most avid wish is to finally get the hall closet organized, get cracking. She can’t do it by herself anymore.
You can also remember skin. Fatigue means she is spending a lot of time in bed or curled in the same chair. She may not move for hours, and she has lost weight. The skin is a thin and friable organ now. In old age, skin can become paper-thin, and it can tear like paper. Pressure is dangerous. Remind her to change position. Help her to change position. If you are helping with personal care, watch for areas of redness that won’t go away, especially over what are called the bony prominences: hips and heels, knees and elbows, the tailbone, shoulder blades, and vertebrae. Gentle massage can be good, a real help now, but you have to be careful. Any injury or sore on the skin should be reported to the nurse immediately.
Breath. Breathing. On and on, we breathe. When people have difficulty breathing, our own breath will catch in a kind of organic fright. A condition called dyspnea, sometimes simply known as difficult breathing, often happens toward the end of life. This may be related to a disease process like chronic emphysema, or just the body’s failing strength. It may be worse with activity or emotional distress. Unsurprisingly, dyspnea often includes anxiety, restlessness, a feeling of tightness in the chest, and sometimes panic or dread. There may be no clinical signs—no change in oxygen levels or blood pressure or heart rate. A person may look relaxed and still feel breathless, what is called “air hunger,” when every breath feels inadequate.
Dyspnea should be evaluated by the nurse and medical provider to determine if there is a cause other than the dying process, because several causes of dyspnea can be treated. People assume oxygen will fix it, but dyspnea often doesn’t change oxygen levels in the blood. A lack of oxygen is not the problem, and it should be used only if it genuinely makes the person feel better. Lots of people find oxygen annoying. Nasal cannulas and masks are uncomfortable and interfere with physical intimacy. Oxygen can cause dry mouth and even nosebleeds. Unless the person has abnormally low levels of oxygen in their bloodstream, oxygen is simply an unpleasant intrusion. Is the oxygen just making the caregivers and family feel better—feel like they are doing something?
There are lots of other things to do to make breathing more comfortable. Pursed-lip breathing is efficient and can relieve the struggle. Simply purse your lips as though about to whistle while you breathe through your mouth. Breathe with the person: regular, even breaths. If a person is anxious and gasping, breathe slowly and deeply with him for a few minutes. Place a fan or open a window to allow cool air to blow gently across the person’s cheek. The reason this works is unclear, though it may be a stimulation of one of the cranial nerves affecting the respiratory center. It may simply be a psychological trick, a reminder that there is air available. Provide space around the bed and chair so that the person does not feel crowded, and raise the head of the bed a little. A person may be more comfortable leaning forward with their arms on a table or pillow. Finally, morphine often helps; no one knows exactly why.
People eat and drink less, and eventually will stop altogether. Even a person with severe dementia who needs to be spoon-fed will stop turning toward the spoon, stop opening his mouth. Most dying people don’t choose to quit eating and drinking; they simply cease wanting to. The point comes when a dying person is unable to eat or drink. Food and water keep us alive; hunger and thirst are the reflexes of a living body, meeting the needs of a healthy body. Turning away from what is no longer needed is part of dying.
Digestion is slowing down and the kidneys are becoming less efficient. A dying person simply is unable to digest food like a healthy one, and becomes much less able to manage fluids. The ability to swallow begins to fade, and choking becomes a concern. Do not force food or fluids. Instead of fretting about calories, help them brush their teeth or suck on a moist washcloth. If a person is not drinking, the family may want intravenous fluids. Needles are uncomfortable in the best of circumstances, and as a person fails, it will be difficult to start a line. The tubing is often in the way, especially if a person is restless or needing frequent changes. What is it—who is it—you really want to feed? Does it feel like neglect not to insist that a person eat? Nothing is being withheld. Instead, you are no longer forcing food and fluid on a person who is neither interested nor able to take it. A person who doesn’t want to eat may seem like a person who doesn’t want to live. Remember that wanting has nothing to do with it.
If you are with a person who is dying, you will see them shrink: not just with lost weight but into a kind of gauntness that seems in part metaphysical, a stepping out of things. They are shrinking out of life. I get thirsty; you get thirsty—isn’t the person in bed thirsty? Aren’t they hungry? Probably not. I know it’s hard to believe, but not eating and drinking may actually make people more comfortable. Dying people do experience thirst sometimes, but water and fluids don’t relieve it. This peculiar thirst seems to be a symptom of dying. Nurses and doctors can recount endless stories of people who have no food or fluid at all for a week or more, who never express thirst or pain, and have a peaceful death. People who are clinically dehydrated sometimes live longer than people getting intravenous fluids.
Why is a state of dehydration a boon? The person may be nauseated or have pain or difficulty breathing whenever they try to eat (and as appetite ceases, she may be trying to eat only to please her anxious caregivers). The kidneys and heart become less able to manage extra fluid. Water accumulates in tissues and the abdominal cavity, causing painful swelling and edema. Dehydration can partly reverse these conditions and reduce swelling around tumors as well, decreasing pain. The fact is just that after being allowed to stop eating and drinking, people often perk up. They feel better, and they die more peacefully.
A special note on artificial feeding, also known as tube feeding. If a person cannot swallow, a tube can be surgically inserted into the stomach for liquid nutrition and medications. For a person with a neurological disorder affecting swallowing, this can be a lifesaver. After certain surgeries, tube feeding is a good temporary treatment. For a person who is dying, it is a special kind of torture. Tube feeding has many complications, including pain, infections, and ulcers. But even if it were without side effects, artificial feeding is futile. It won’t cure anything, and may not prolong life—but if it does, it is prolonging a life that is trying to end. There is a reason that every advance directive specifically addresses tube feeding.
A certain number of people in a slow decline consciously choose to stop eating and drinking. The medical term for this is “voluntary dehydration,” but there is no need to turn this into a clinical issue. Many cultures support the idea of fasting as a religious practice, as a way to focus the mind, and as a way to prepare for death. Even without religious intent, a conscious person may say it is just time not to eat anymore. Eventually, he no longer wants even water.
Scott Nearing—peace activist, writer, radical economist, and passionate advocate of a simple life—often said he wanted to live to be ninety-nine years old. He did, and toward the end of that year, he was watching his wife, Helen, eat. He told her, she recalled, “I think I won’t eat anymore.” She said, “I understand. I think I would do that too. Animals know when to stop. They go off in a corner and leave off food.” Helen started offering him juice: “carrot juice, apple juice, banana juice, pineapple, grape—any kind. I kept him full of liquids as often as he was thirsty. He got weaker, of course, and he was as gaunt and thin as Gandhi. Came a day he said,‘I think I’ll go on water.
Nothing more.’ From then on, for about ten days, he only had water.
“He was bed-ridden and had little strength but spoke with me daily. In the morning of August 24, 1983, two weeks after his 100th birthday, when it seemed he was slipping away, I sat beside him on his bed. We were quiet together; no interruptions, no doctors or hospitals. I said ‘It’s alright, Scott. Go right along.’ ” And then, “with no quiver or pain or disturbance he said ‘All…right,’ and breathed slower and slower and slower till there was no movement anymore and he was gone out of his body as easily as a leaf drops from the tree in autumn, slowly twisting and falling to the ground.”
Hello, caregiver: you are so tired. You need time to be alone, even if it’s just in a corner of the house where you can rest, or a chance to go to a coffee shop for an hour or two. You need time to talk to someone else, about other things, in another room. The dying person may not want to talk anymore, may not want you near, but he doesn’t want to be alone. You can’t leave. What you need most is all the help you can get. Ask for it. Accept it. Night may be the scariest time: long, spooky hours filled with questions. Night, when you are the most worn and just want to be home or need to be caring for children and doing laundry and getting ready for work—this is when the person needs you the most. They need you to be there, and they need you to be willing to be silent or talk or listen or read out loud or stand vigil. They need you to be ready. Get help, so that you can be.
Here at the threshold, one has trouble finding solid ground. The world is as shaky as a crumbling cliff at times, as still as the bottom of a well at others. Kate Carroll de Gutes took care of her mother through a years-long marathon of dementia, moving, surgery, unhealing wounds, and intensive care units, until her mother finally began to die. And then Kate took care of her while she died.
“Death is like this: it’s exhausting is what it is,” she wrote. “Everything feels like a huge fucking emergency. Why is that brown Camry torturing me by driving two miles per hour under the speed limit? Why did the Union Cab taxi dispatcher take thirty minutes to call me back to tell me the cab wasn’t coming? Why! Is! The! God! Damned! Internet! So! Slow!” She couldn’t describe what she was feeling for a long time. “I didn’t understand how the liminal space that the dying person is in can affect your own psyche.” She got lost driving home, forgot appointments, even forgot her age. (“Was I twenty-one or forty-one? Was I here or there?”)
Everything alters; time stretches and recedes; nothing happens. Suddenly a lot seems to be happening. Then nothing happens again. Dying is like this: we walk together down the road, side by side, or one leading the other, until the road diverges into two. We stand there for a while together, waiting. Then a person turns to walk down one path while the rest of us head down the other. We watch her go. We wave, we call out her name, but she doesn’t look back. The time comes when the dying person doesn’t want to chat about the news or the kids or your job. There is nothing else anymore but this solitary walk.
Kate gradually learned how to be in that world, the incomparable world of a dying person, and she learned this the way a graduate student in a really difficult master’s program learns a new vocabulary, a new skill set, and a new identity. She says of people caring for the dying, “We are confused, and in our confusion we are finally able to see clearly and sing out in our full range.” We sing out goodbye.
Death takes many forms. One death is anticipated over months. Another death is stunningly abrupt. And now and then death is held back by technology. I have seen how these deaths are different, and they are all the same, in the end: a person breathes and then breathes no more. He enters a stillness like no other. Breath. Another breath, and then no more. But when the breaths are made by a machine or the blood pressure is sustained by powerful drugs, someone has to make an awful decision.
Many aspects of medical and nursing care become unnecessary or intrusive for a dying person. Will the result of a lab test change the plan? If not, then don’t do it. Why take another vitamin? Are you really worried about the cholesterol level at this point? You don’t need to check blood pressure routinely. But sometimes a person is already hooked up—intravenous fluids and drugs to raise blood pressure and support for breathing—and the only way to stop the intrusion is to unhook. The advent of machines like defibrillators and ventilators created a new kind of crisis for the dying. (One report from the time referred to “this era of resuscitatory arrogance.”) A lecture in 1967 about how medicine should define death was called “The Right to Be Let Alone.”
Futility is a legal term in health care. A doctor, a team of people, even a hospital, can invoke futility and refuse to continue treatment that only prolongs suffering. This doesn’t happen immediately; it’s a drawn-out, painful process. The vocabulary makes everything worse. Doctors speak almost glibly about “withdrawing” or “withholding” treatment. The nurse says, “There’s nothing more to be done.” Which is a stupid thing to say, because there are all kinds of things to be done; they just don’t involve trying to keep someone alive. Such comments create a terrible sense of culpability in a heartbroken spouse or child. But what is really being done is good care.
Virginia Morris pleads for a change of terms: “When we take a terminally ill patient off life support, we are not ‘pulling the plug,’ we are ‘freeing’ the patient to die. We are ‘releasing’ her from excessive technology and invasive treatments. When we allow death to happen, we are not killing people, we are caring for them. We are loving them.”
We want to put it off as long as possible. Even if we are sure that Mom or Dad wouldn’t want to be kept alive “on a machine,” in the moment of crisis when everyone is yelling at us to decide, we’re not prepared. We literally have no experience making such a decision; we may do it only once in our lives.
The hardest part is the loss, but a close second is the need to shove your own fears and desires to the side. Sherwin Nuland said that at the time when decisions about life support and life-prolonging treatments are being made, “everybody becomes enormously selfish.” He emphatically includes doctors and nurses in with the family. We may not recognize that selfishness is driving the words we choose or the kind of advice that’s given. Doctors may not have any idea they are doing this. When they offer yet another experimental drug, they may genuinely believe they know what’s best for the patient. But best: Best is subjective. Best is your point of view. Best is what you want.
Being able to make a decision like this for another requires an understanding of each other, and time for self-reflection. You have to consider the painful, scary, and unwanted fact of separation. You are the proxy for the person in the bed. What she wants is all that counts. You want the person to live. Or you want the person to die your version of a “good” death. Or you want him to live another week until the rest of the family arrives. You want the gasping holler of pain in your chest to go away. Can you choose a course of treatment that will allow the person you love most in the world to die? Can you say no on their behalf to something you would choose for yourself? Can you say yes on their behalf to an end you would never want? Can you set your own beliefs to the side? This inevitable conflict of interest—you are dying and I want you to live—is why a spouse or close family member often should not be the one making all the decisions. You have to ignore the begging chorus in your head, because it’s not about what you want.
In an old Japanese tradition, a person writes a poem on New Year’s Eve that will be read at their funeral if they die in the coming year. A modern addition to this practice includes having a professional funeral photograph taken and picking out the clothing you want to wear, in styles specially made for corpses. The Japanese word jōjū means ever-present or unchanging. I like the translation “everlasting.” The image of jōjū is often the moon. How can the moon, which is never the same from night to night, be everlasting? And yet it is always the same moon. Jōjū is that quality of unstoppable change and the eternal at once. Death comes even while we are alive.
My storehouse burned down.
Now nothing stands between me
And the moon above.
Everlasting.
***
A dying person’s attention turns toward a place we do not see and that they cannot explain. They are done with the business of the living, as it were, and more or less finished with us. Now they are not a mother or a plumber or a friend. Now they are entirely a dying person, and the world begins to shine. In spite of going hours without speaking, in spite of needing help to button a shirt, he is busy. He may not have the energy to talk, because he is waiting for something and that takes everything he has left.
He may be waiting to understand why.
Laugh. Laugh! Sing. The last kiss, the last dream, the last joke to tell. I have been telling you all the many things we might say, and shouldn’t. Things to say as the end is coming: I love you. I hope the best for you. We will be all right. Go with peace.
Then we are listening again. We are returning to stillness, and to hearing what is being said without words. Most of us are not used to silence. It takes getting used to. The background noise of our lives is near-constant: endless voices, television, music, traffic, the ping from incoming texts, the demanding requests of daily life. Because we aren’t used to silence, we don’t understand how to be in it, how full it is. We may struggle against it, but silence is part of this world now. Silence is attention. Attention on this, right here, right now. Attention on the hand against the sheet, the texture of the cotton, the cool cotton. The hand rising to take a cup; the hard, warm curve of the cup. The steam. The heat. The sensation of the bending tendon in the hand, the scratch of a nail along the bedcover. Inhalation. Exhalation. All this in silence, filled with the music between words, what you might call the music of the spheres—the world’s hum. The faint vibration of breath and muscle and time.
Advice for Future Corpses_and Those Who Love Them Page 11