by Katy Butler
When Kathy was in her forties, her mother, then in her seventies, developed breast cancer. The disease metastasized despite surgery, chemotherapy, and radiation. A little more than a week before her death, her mother was admitted to the hospital. Over the phone, she said to her daughter Kathy, “Don’t come. I don’t want to see you.” Kathy got on a plane on the advice of a friend who told her that if she didn’t fly back, she would regret it for the rest of her life.
Kathy walked into her mother’s hospital room. There she found a tiny figure curled up in a hospital bed—“shrunken, yellow, bald, bronzed by jaundice,” as she later described it in a poem. This was the mother she had feared for so long. The two women looked at each other in silence. Kathy’s mother said aloud, for the first time that Kathy could remember, “I love you. I’m sorry.” That was it.
Kathy replied, “I love you and I’m sorry.”
“Those few moments,” said Kathy, “cleared up a lifetime of misunderstanding each other.”
When you think of how you’d like your own death to go, I suggest you make plans for the basics—comfort, adequate help, and pain control—and then expand your horizons. One man dying of multiple sclerosis in a nursing home, who’d formerly worked as a forester, was gurneyed out into the woods by volunteer firefighters for a last view of his beloved trees. In Australia, paramedics have taken dying people to the beach for a few minutes to gaze at the ocean or to lick an ice cream cone, before delivering them to the hospital. One of my closest friends will never forget the look on her dying mother’s face when she cued up Frank Sinatra on her mother’s headphones.
Are there particular words you’d like to hear that might help you die in peace? Might you need reassurance, for instance, that a vulnerable family member will be taken care of? One agitated man, who’d made his living putting up holiday decorations on the Main Streets of several towns, died peacefully after his hospice nurse told him that the season was over and all the decorations were put away.
GETTING HELP FROM YOUR TRIBE
Coming together to help someone prepare for and experience a good death, just as our ancestors did, is a rite of passage worth reviving. Everyone benefits, as long as caregiving burdens are spread widely enough, because helping others makes people feel better about themselves. For those without substantial assets or Medicaid, most bedside care will be provided by friends, volunteers, and relatives, as has been done for centuries. The excellent handbook Share the Care shows ways to divvy up tasks so that people do what they’re good at, get satisfaction from it, and don’t burn out.
Share the Care suggests picking an organizer to convene a face-to-face meeting of everyone interested in helping out. At that meeting, those involved can parcel out tasks, including a hands-on point person who can live in the home or nearby; someone to coordinate volunteers, using an online calendar or a website like LotsaHelpingHands.org; and someone to match volunteers with the types of help they’re best at (shopping, running errands, bedside caregiving, or researching outside sources of help like public benefits and community groups). The most critical role to fill is that of a health care agent, if one hasn’t been chosen yet—someone to make sure that appropriate and wanted medical care is delivered (including pain management); that end-of-life paperwork is up to date; and that when the time comes, all unwanted or painful medical treatments are stopped.
Don’t turn down even the smallest offer of help. When my former dance teacher, Stephanie Moore, was diagnosed with ovarian cancer, her daughter and dozens of people she knew took care of her round the clock for five months. Tall and blond, and possessed of extraordinary energy, drive, and talent, Stephanie was divorced and lived alone and on a shoestring. But she was rich in social connections. When she was weakened by cancer, surgery, and chemotherapy, and unable to drive or shop, she drew on the deep “gratitude bank” she’d built over decades of teaching writing and dance classes, and in her membership in a recovery program. Whenever anybody said, “Let me know if you need anything!” Stephanie would whip out her calendar; she always had an answer.
Her daughter was there every day. Another well-organized woman with a full-time job handled the calendar of helpers online in the evenings. I used to bring a chicken dinner to share on Monday nights, while others took regular four-hour weekly shifts to keep her company. Because the commitments were shared and well organized, no single person was overwhelmed. Those who showed up were not necessarily those she expected; some close friends didn’t come much, while others who barely knew her drew deep satisfaction from being part of her support team.
My husband, Brian, drove Stephanie to her chemotherapy sessions and slept in a sleeping bag on the floor by her bed on the many nights when she was afraid to be alone. When she had trouble breathing in her last two months, he also paid for oxygen equipment that her health plan refused to provide.
Stephanie insisted until her last week that she was going to beat her cancer. She tried, unsuccessfully, to get the “maximum chemo,” which her doctors said would kill her. She was particular about how she wanted things done, and she refused the support of hospice until a couple of weeks before her death. She spent her last three days in a hospital because she became too agitated and delusional to be adequately cared for in her own home.
She was in her mid-fifties when she died, with many ambitions and yearnings unfulfilled—to publish a novel she’d written, and to once again be in a committed, loving relationship. Nothing about her dying was easy. Those who cared for her could not make her peaceful. But shortly before she entered the hospital, she invited Brian and some of her closest friends to help her plan her funeral. And after she died, everyone who helped her could look back with pride on the job they did.
Ways to Prepare:
• Call a hospice for an informational meeting, even if you don’t think you’re sick enough yet. Ask yourself what stands in the way of your dying in peace, and work to address it.
• Consider the five emotional tasks of dying: thank you, I love you, please forgive me, I forgive you, and goodbye.
• Enlarge your circle of support. Convene a meeting and assign roles.
—CHAPTER 7—
Active Dying
The Tree Needs to Come Down • This Is What Dying Looks Like • Preparing for a Home Death • Preparing in a Nursing Home • Giving Care • The Final Hours • Humanizing a Hospital Death • Improvising Rites of Passage • Welcoming Mystery • Saying Goodbye
Late Fragment
And did you get what
You wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
Beloved on the earth.
—RAYMOND CARVER, written not long before his death in 1988
You are, or someone you love is, likely to find this chapter helpful if you are within a few weeks or days of dying, as shown by several of the following signs.
The gravely ill person:
• Stops eating.
• Talks about needing to pack, “go home,” cross a river, or move to a higher floor of a nursing home.
• “Sees,” dreams of, or speaks of attending a party with the dead.
• Talks of wanting to join dead loved ones.
• Sees spirit guides, such as a coyote, the Virgin Mary, or something more idiosyncratic, like a man in a top hat sitting on the roof outside the window.
• Cannot get out of bed. Needs to be helped to the bathroom, or uses a diaper.
• Says “I’m dying” or “There isn’t much time.”
• “Rallies,” reviving briefly with a burst of joy, exuberance, and expressions of love that may last several hours or occasionally days, followed by a collapse of energy.
• Withdraws, naps for hours, speaks little, and keeps eyes closed.
If you, or someone you love, is dying in a hospital, these commonsense harbingers may be obscured by a hubbub of medical technologies. In that case, look for the followin
g signs:
• Being in an ICU with stage four cancer or with sepsis, a catastrophic whole-body response to infection. The older and more fragile the person, and the greater the number of coexisting serious illnesses, prior hospital stays, and prior days in the ICU, the more likely it is that death is close.
• Having ICU doctors argue about treatment, order dialysis, or speak of “multiple organ systems failure,” often code language for “dying” or a predictor of its imminent arrival.
• Having a doctor suggest meeting with a palliative care or hospice team, or talk about “goals of care,” “discontinuing life support,” or “withdrawing care.” These sometimes insensitive phrases mean they think it’s time to shift from fighting death to relieving suffering, providing comfort care, and preparing for the best possible death.
THE TREE NEEDS TO COME DOWN
Modern death takes many shapes. Arranging a peaceful one poses different challenges in a private home, a nursing home, and a hospital. Nevertheless, most deaths share a few simple commonalities, notably the need for physical comfort, human connection, and pain control. All are easier to provide when death is anticipated. But dying has become so hidden, medically drawn out, and ambiguous that many of us no longer trust our gut sense that it is on its way. Experienced doctors, aides, and hospice nurses tend to be more attuned, but they have learned never to precisely predict the moment of death, and they, too, sometimes miss its harbingers. Only in retrospect did Diana, a former social worker who serves as a paid companion for aging people, recognize the signs shown by one of her favorite clients, a retired engineer named Gordon Lechenger.
Gordon was ninety-six and lived in an apartment in a luxurious assisted living complex in a small town in Minnesota. In the six years that Diana served as his companion and aide, their relationship evolved from an employer-employee transaction to an intimate, reciprocal friendship. Gordon was a widower with two loving daughters and several granddaughters and great-grandchildren, the kind of man who during the winter holidays would ask the staff at his residence what they were buying for their children. He regularly dressed in suits, ties and hats, and Diana remembers him as “very nice-looking, a dapper man, a gentleman. The kind of man who would open doors for you and feel good about it.”
Diana first met him when he was in his mid-eighties, after he injured his shoulder. She was hired by his daughters to help him dress, and to drive him in his big leased car to tour the countryside, to visit art fairs, and to go to an old-line department store, where he’d buy new shirts and hats and schmooze with the staff. Sometimes he’d ask her to Google something—like who invented the fork?—and then talk about it with his fellow residents at dinner.
Gordon could read Diana’s face. If she came to work looking stressed about her own family, he’d say, “Lock the door. I’m turning my collar around,” meaning he was about to play priest. He would hold her hand and look into her eyes, and when she finished unburdening herself, he’d say gently, “This, too, shall pass.”
Over the next decade, a heart attack and repeated hospitalizations and injuries left him weak and fragile. He gradually stopped walking and relied more and more on a wheelchair.
The first sign of his approaching death followed a brief hospitalization for unexplained stomach bleeding. After he stabilized, he went to a skilled nursing home, paid for by Medicare, where he had to share a room. When he learned from his daughters that he had run out of money and could no longer afford to return to his expensive assisted living apartment, Diana saw him change markedly. Previously, he’d thrown himself into physical therapy. This time, he refused to go.
One morning at the nursing home, Diana found him looking out the window at a majestic old oak tree. He told her that the tree “needed to come down” because it was old and had “had a good life.” Sometimes he’d get a faraway look in his eyes and when Diana asked, he’d tell her that he was remembering dancing with his dead wife, Angela. When Diana got ready to leave for a month to care for her sick mother-in-law in Australia, Gordon barely responded—a lack of interest in her affairs that was totally out of character. His withdrawal, his reminiscing about the dead, and his speaking in metaphors about the natural cycle of life and death, were all foreshadowings.
When Diana returned, Gordon was no longer listless and preoccupied with the past. “He looked at me with such brightness and joy,” Diana said. “Never in my life had anybody looked at me that way.”
It was a warm spring day. She took him for a walk in his wheelchair and then to a St. Patrick’s Day party in the activities room. Everything he encountered filled him with joy. Normally reserved and dignified, he happily wore a green cardboard hat decorated with a shamrock, tapped his feet to Irish music, called the crab cakes “delicious,” and laughed at the Irish jokes Diana downloaded from the Internet. This burst of joy, this final spilling-over of life energy, this gratitude for the world, this letting go of restraint, was the harbinger that hospice nurses call “rallying.”
The next morning, Diana found Gordon in bed, trembling. His doctor made a house call, decided that Gordon had a cold, and reassured his daughters that it was safe for the extended family to take their planned Florida vacation.
The next day Diana found Gordon sitting in his armchair, looking ashen. He said with uncharacteristic abruptness, “You are just in time.”
His lower back, he told her, was hurting badly. She called an aide, and together they moved him back to bed. The aide gave him Tylenol. It did nothing for him.
The next four hours were among the most difficult of Diana’s life.
Uncontrolled pain is a common barrier to a peaceful death, currently affecting 61 percent of people in their last year of life. It is most frequently endured when death comes unexpectedly, without the expert pain management usually provided by a hospice. Gordon, who was usually stoic, kept shifting in bed, trying to get comfortable. Diana rearranged his pillows and called nursing staff, but getting medical authorization for a stronger painkiller was agonizingly slow. An hour passed. She sat on the bed and tried to reach under Gordon’s back to rub it. “The dear man attempted to move over to make it easier for me, which he was too weak to do,” she said. “He was such a kind soul.”
In the meantime, Gordon’s roommate, lying behind a curtain in the next bed, and sensing perhaps that death was near, turned on his television, and then turned it up louder. Another hour passed.
A young nurse came in with a big pain pill and handed it to Gordon with a glass of water. After he swallowed it, the young woman set down the glass and quickly walked out. As the television blared behind the curtain, Gordon’s breathing grew ragged. A more experienced nurse came in, asked if Gordon had a do-not-resuscitate order, learned that he did, and said to Diana, “He doesn’t look good. Just hold his hands.” Diana held him. Gordon choked, took two final breaths, and stopped breathing. Diana believes he had waited to die until she returned.
Because so few of us are exposed to dying as a normal life passage, we are both captivated and tyrannized by death. We are either terrified into silence and avoidance, or we flee into a sentimental narrative of the “good death,” a purely spiritual experience where all is forgiven, the heavens open, and the secretions, smells, exhaustion, and messiness disappear. But a death, like a birth, weds the animal to the soulful. Perhaps a more realistic hope for caregivers, and for ourselves when we are dying, is for a “good-enough death,” where we keep the dying as comfortable and pain free as possible, and leave room for the beautiful and the transcendent, which may or may not occur.
The final letting-go is an inexorable physical process, akin to giving birth. Vital organs shut down one after another or all at once, starved of oxygen, nutrients, and energy. Breathing becomes ragged, lips and toes turn blue, awareness turns inward, the dying person stops responding to others, and sinks into a deep, sleep-like coma before taking a few final breaths. This stage, which hospice nurses call “active dying,” usually lasts three to eight days, but sometimes
less and sometimes more.
Sometimes dying is gentle all the way to the end, and sometimes not. Moments of fear, agitation, confusion, breathlessness, irritability, anger and pain are normal, and although they can often be soothed medically, dying can be wrenching for the dying, and exhausting and distressing to those who are with them.
Keep your heart open and your expectations low. “I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.”
Even if you find yourself looking after a dying person without hospice or experienced help, you and those who love you can do this. The presence of a single calm person in the room can make a tremendous difference. People have been dying, and sitting by the bedsides of the dying, for millennia. If you are a caregiver, the most important thing to do is to take your cues from the dying person, and imagine what you’d want if you were in that bed. Having a map of what you are likely to encounter may help you to manage your own fears and to understand that what you are seeing, while difficult, is normal.
Dying is not an emergency. You can prepare for it, you can cooperate with it, and you can draw on wells of fortitude and love that you may not know existed within you. Dying people and those who sit with them have borne many difficult things. They’ve climbed mountains, built businesses, nurtured children, and lived through chronic illness, loneliness, marriage, divorce, and bereavement. Now comes the final labor of leaving this earth. At times it will be an ordeal. Much will be out of your control. But expressing your caring is never fruitless, and you may look back with pride on how you helped.