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Accepting the gift of Dependence and the Burden of Care

 

All the passages below are taken from Dr Ira Byock’s book, “Dying Well”, published in 1997.

 

Often when I ask patients to tell me about their suffering, they talk about being afraid of becoming a burden to their loved ones. Sometimes, more than dying, people dread becoming dependent on caregivers and making them feel responsible for both financial and physical needs as well as the inevitable emotional demands. Of course, caring for someone who is dying requires fortitude. Family members may have to provide constant attention to physical comfort, such as easing dry lips and fever. They may sit for hours and days with someone, offering love and reassurance with their presence. The dying person may moan incomprehensibly or breathe noisily, adding to the caregivers' ordeal. This is all made even more poignant and intense by the nearly universal sleep deprivation that caregivers endure.

However, to speak of this time solely as a "burden" misrepresents the nature of the experience. Although a patient may feel that this care and attention is unduly taxing or unpleasant, caregivers frequently tell me that they regard this time as precious. The burden is rarely too heavy. Far more often, they say it feels like a sacred responsibility that they want to shoulder--that they need to shoulder. I frequently ask patients to imagine how they would feel if they were well and another family member were dying. "Oh, I would be sad, but I would want to care for them," they often reply.

Caring for a dying loved one is a powerful way to express love, devotion, and reverence. Allowing a spouse or grown child to care for one becomes a final gift from the person dying. The physical acts of caring can help family members in their own grief. This was certainly true for Jake Edwards and his family. Jake had always felt like an outcast, and he had left Missoula as soon as he was old enough. So when he contracted AIDS, he came home reluctantly. He loved his mother and sisters, but he abhorred the idea of them having to care for him. His feelings of unworthiness reinforced the feeling that his care was a burden, and for a time he adamantly refused to let them tend to his physical needs. But at some point, Jake realized the nature of the burden he presented and allowed his mother and sisters to nurse his deteriorating body. Jake's act of self-sacrifice--giving up his desire for independence and allowing himself to become defenseless and vulnerable to his family--might, at first, appear passive. In fact, it was a difficult, active decision and a conscious gift he gave to his family. By accepting their care and their love, he helped ease the pain of their grief in a way only he could. The healing and growth that Jake and his family experienced in his dying can only be adequately conveyed by telling the story.

 

 

Jake lived in the old part of Missoula, which was carved into the edge of the winding Clark Fork River and built around the flour mill and sawmill that served homesteaders coming west. The people of Missoula have always been a collection of unconventional characters. In its frontier days, it lured railroad tycoons and wranglers, Indians and artists. Its immigrants today are writers, film stars, medical professionals, fly fishermen, and students. Nevertheless, Missoula's old section, fenced in by highways, seems immutable. It is easy to get lost in this part of town, with its assortment of one-way streets chopped up by railroad tracks and overpasses. The dwellings here are an incongruous mixture of Victorian houses and pastel-colored mobile homes on bare lots. Landmarks tend to be things like a large vegetable garden or a new motorcycle in a front yard.

After numerous wrong turns, I found Jake's house in the shadow of an interstate overpass. The air was heavy with the smell of sawdust from the pulp mill on the other side of the highway. He lived in the first-floor apartment of a two-story house with a barbecue grill on the front porch and a laundry line around the side.

I had first learned about Jake, who was forty-three at the time, from Charlotte, a home health nurse, who had cornered me in a parking lot outside the hospital. "I've got this AIDS patient," she said. "I'm going to talk to his doctor about referring him to hospice. I think it's time for you to see him."

"What can you tell me about him?" I asked.

"Well, he's having lots of problems." She paused as if she had thought of something more important to say. "He's a problem patient, giving everyone fits, but I just love him." I raised my eyebrows in surprise. Charlotte was a veteran of the oncology units, had cared for countless dying patients, and had the gruff exterior of a traffic cop. In the coming weeks I would come to understand. Jake Edwards was ill-tempered and irascible, but he grew on people and melted even the coolest professional.

As the hospice's medical director, one of my jobs is to review each patient's regimen of pain and other medications and make sure patients are as comfortable as possible, while coordinating with a hospice nurse and a hospice social worker. We function as a team; each of us plays a different position, but we all work toward the goal of comprehensive care. At times I feel like the conductor of a small, talented orchestra, keeping everyone in tune and in tempo. I have a strong sense of what the finished piece should sound like. I want patient and family to feel emotionally safe enough to regard the final weeks or days as an opportunity for meaningful interaction. In Jake's case, my job became especially satisfying, because ultimately the music sounded far better than we could have imagined.

Jake lived alone with a rambunctious mixed Labrador retriever named Kate, although by this point in his illness, his mother Pauline was at his home constantly. This was a sore spot between them. Jake hated losing his independence, and Pauline refused to back off; even for a day. A small woman with white hair and tender eyes greeted me. She was agitated and distressed, and glad to see me. Jake had had an awful weekend, with recurring nausea, vomiting, and an unremitting headache, and he had been blaming her, his only target, for his discomfort.

His bedroom at the back of the house was tiny, with a mattress on the floor and bookshelves on both sides within easy reach. On this cold January afternoon Jake lay in bed smoking cigarettes and, occasionally, pot, a heaping ashtray on his chest, the room hazy with smoke. A country western song wailed from the radio. He looked like he had led a hard life, and he reminded me of the frayed people I see going into Narcotics Anonymous meetings. His hair was sandy, long, and stringy, and his light blue eyes were deep-set. It was his face that spoke volumes: a fierce visage with pale, sunken cheeks and a pitted and pocked complexion.

I introduced myself and asked how he was feeling, expecting to hear about his pain and weakness, and braced for his wrath. I have grown used to angry patients, especially patients with end-stage emphysema, AIDS, or cancer. Sometimes they lash out at me just because I am there, or because I represent a medical system that cannot save them. They may be irate over a string of bad experiences with doctors and hospitals, feeling they have been deceived and ignored, and suspicious of any new medical person. But anger is often more than a reaction to a cruel fate. It is a mask emotion, and behind it lies sadness. People can become angry when they are losing something or someone precious and when the fundamental emotion within them is sadness, an ache they can do nothing about. Anger is a way of directing this pain outward.

Jake gave me the details of the rough weekend, but said he was feeling better. He could take fluids, and a small appetite had returned. Nevertheless, he was bed-bound and extremely weak, and lancing pains down his legs, plus nightmares about tubes being inserted into his head, made sleeping fitful.

"That gancyclovir really kicked my ass, it really messed me up," he declared angrily. He complained about his various drug therapies, an intestinal tract infection, and the gradual loss of sight in his left eye. A few days earlier he had blasted his primary doctor about the "stupid medication" and had demanded an herbal treatment. He spoke in a hoarse, bitter tone, and occasionally paused for sips of water and long silences. Pauline stood near the doorway, offering to help each time he moved. "Stop hovering!" he snapped, as he struggled to reach for a glass of water. She disappeared into the kitchen.

I asked what I could do for him, and we talked about his headache. Jake was dehydrated, which was probably adding to his headache, and had enough medical savvy to ask for a liter of IV saline.

With many terminally ill patients, I find that my responsibility for helping manage their symptoms is my ticket in. It allows me to talk about what's happening to them without getting touchy-feely--it gives us both a safe, somewhat impersonal way to broach the subject of dying.

I wondered if he had any questions about the course of his illness. He stated brusquely that he knew AIDS was fatal, he had seen others die from it, but he was going to beat it, at least in the short run. I hoped he was right and that his optimism was not complete denial but more the suppression of painful possibilities. Jake's path to the end was unclear, and I was going to try to make it safe for him to look beyond denial, when and if he chose to.

We talked about ways to help him feel a little stronger. "I think it's likely we can get you feeling better," I began. "But what if something unexpectedly happened today or tomorrow? What if you suddenly became more ill or if there was a hurricane and the roof caved in and you were trapped, knowing you had only fifteen minutes to live? What would be going through your mind as you lay dying? What would be left undone? Is there anything you haven't done or said to someone important?"

"Yeah ..." he began slowly. "There are some things I'd like my kids to have." I explained that we could help him with the formalities of a property will and a power-of-attorney form. He kept coming back to his daughters. "There's so much I want to tell them," he said, barely able to lift his head, his urgency muted only by weakness. With the mention of his daughters he seemed to relax; the anger faded like a receding wave, and he talked of his life.

Jake had grown up in Missoula, the only son in a family of six children. Number two in the string, he had been fiercely attached to his older sister, Gerri, serving as her confidant and protector throughout their childhood. The bonds with his younger sister, Arlene, were more tenuous, strained by the wounds of previous years of impulsive behavior and sibling strife. She had not visited him since the AIDS diagnosis. Jake was a born musician. His mother remembers him as a toddler banging on pots and pans. Unlike most kids, he did not grow out of it. The family was poor, living in the country, getting by on little. There were no tears when Jake's father, an alcoholic who had regularly beaten his only son, died of a heart attack when Jake was seventeen. As soon as Jake was old enough he had left Montana for California and the life of a drummer in a rock band. Living in the world of late-night clubs and with the stress of uncertain employment, Jake fell prey to the family predisposition for alcoholism. Nevertheless, he struggled and survived years of heavy drinking and IV drug abuse.

Jake was complex, more than just a burned-out musician, and his California years had been an emotional roller coaster. He had married Jeannie, a small, dark-haired woman, who, like his music, would be a passion for life. They had two daughters, Cecilia and Shawnee, two years apart, whom Jake had alternately spoiled and disciplined harshly. The marriage had been stormy and rancorous. He fought constantly with Jeannie and was mercurial around the girls. At Jeannie's insistence, he gave up his music and the late nights. The pain of sacrificing one love for another ultimately proved too much for the marriage to bear. Even before the divorce, Jake resumed his drums--and drugs--with enthusiasm. It was during this time, he figured, that a dirty needle had sealed his fate.

Jake returned from California after twelve years. Though he told his mother he had come back to play in a band with childhood friends, I have always suspected that somehow, even then, he knew he was corning home to die. Finally, when he had a sore throat for five weeks straight, his mother's nagging forced him to see a doctor, and he was tested for HIV. At first he did not tell his mother that he tested positive; he claimed that he had emphysema, and, before he was old, was going to be "one of those people dragging a tank around." I think he feared she would smother him if she knew the truth. He kept the news to himself for three days. When he finally told her, after she finally stopped crying, he extracted from her promises that she would not move into his house and that she would never hospitalize him.

Part of Jake believed he could beat the disease, repeatedly reassuring his mother, "Don't worry, something is going to happen." Maybe it was just a front to give her hope. Occasionally the tough exterior slipped, and he would castigate himself for being "such a fool," the doctors for their useless medications, and even his mother for her constant crying.

Jake and I talked for over an hour that first visit. I sat on a kitchen chair at the foot of his bed. He insisted that all he wanted from me were IV fluids to stem the headache, and a drug for his infected mouth sores. While we talked I wondered whether he had stashed away a supply of painkillers, just in case he wanted another option, another possible ending. It is a common reflex with AIDS patients, given their indefinite, though unequivocally finite, prognosis. And Jake's life certainly reflected a man independent perhaps to a fault, who made his own decisions. A note in his medical records written two weeks earlier by a hospice nurse revealed some of his thoughts. He had said to her, "I want to be in control of the situation, then find the correct drugs to make me die."

Ironically, I believe his drug history pushed him away from attempting suicide, however. In California he had been through detox at least three times, and the excruciating withdrawals had left him with a strong distaste for drugs, except pot. This aversion explained his rejection of anything his primary doctor prescribed, and his seeking out a naturopath for herbal remedies.

As I left Jake and his mom, I felt both hopeful and overwhelmed. My hope arose from the aching familiarity of Jake's case. There was so much to do, so much ground for Jake to cover, and I feared we only had a few weeks. I could ensure that he would not die in pain, and, along with the hospice staff, help him finish his will and maybe write a final letter to his daughters. But Jake's life had been tumultuous and troubled, an endless string of shattered dreams and fractured relationships, and there was much unfinished business. Yet his humanity shone through. As I had been warned by coworkers, I found I liked Jake. I could see in this hardened young man the boy his mother still saw. Behind the mask of fury, I could see his innocence and I could see his love. I did not want him to die alone, save with his mother, and I did not want him to die feeling unworthy. Without denying the seriousness of his mistakes, I perceived a fundamental beauty in him, and I hoped he could experience unconditional love before he died.

Jake's ordeal was on my mind the following day at the regular hospice team meeting. Every week about a dozen hospice workers gather around a large conference table in a windowless conference room at the hospice offices. It is a sterile, stuffy room, but we have humanized it by hanging framed photos of patients and their families on the walls. Tom King, the chaplain, usually starts the meeting with a brief description of the patients who have died, followed by a few words of memory and moments of silence; then we launch into discussion of the current cases.

I clipped through Jake's medical condition--his diagnosis, symptoms, treatment and medications--because I wanted to press the team to think about his personal situation. They did not need a lecture from me on tending the dying. They are pros in gently steering patients and families toward achieving the landmarks that underlie dying well-saying "I'm sorry," asking forgiveness, accepting forgiveness, saying "I love you," acknowledging self-worth, and saying goodbye. Inching toward these achievements is as fundamental to our daily visits as taking vital signs. But I was worried about Jake, so I slipped into the role of the stern maestro.

"Let's not lose sight of how much opportunity we have here," I urged, anxious for everyone to understand Jake's plight. I wanted to make sure they were all listening. Throughout the meeting we circulate sympathy cards for families, and each of us writes a note; it's easy to become distracted.

"Look, this guy has been the family outcast, the black sheep. He left Missoula years ago, propelled by his own surging impulses and the stormy family dynamics. But now he's come back to die. He could have stayed in California and shot himself, or OD'd on something, or died in a hospice in L.A. or San Francisco. Why didn't he? Why did he come home to die? Because on some level, this family means a lot to him. We've got to help him reconnect. And we'd better hurry; I don't know how much time there is." I don't harangue often, so they were duly attentive; even writing in the sympathy cards ceased. Jake's case was one of eight we covered that day--at any one time we care for fifty families--but it made an impression.

Over the next two weeks I followed Jake's progress through the hospice team. Andi Dreiling had been assigned the primary nursing responsibilities, Vickie Kammerer covered the social-work tasks, and Tom was doing his chaplain thing. After Jake took a bad fall, his mother moved in, sleeping on the living-room couch. Her closeness only heightened his feeling of embarrassing dependence. He could not accept her help or tolerate her unrestrained emotions. "Don't be wimping out on me," he cautioned, whenever she started weeping.

One afternoon he flew into a rage when he realized that she was scrubbing the bathroom floor; he had given her permission only to clean the floor in his kitchen. Pauline was as persistent in her care as her cleaning. "He knew I wasn't leaving," she told me during a later home visit, when Jake was sleeping. "Knew it didn't matter what he said, what he did. Wet his bed, whatever. I would always be there."

She never backed off. As the days passed, his outbursts were followed sooner and sooner by tender apologies. Ultimately, I think Jake taught himself the real value of being cared for--that it was not so much for him as for her, and accepting care was the most important thing he could do for her. His mom needed to clean and dote on him as a way of caring for herself it was her way of dealing with the inner turmoil and grief she felt. During the last few weeks, Pauline was never far from his room--"floating," as she called it. When she sat by his bed, stroking his head, he complained one minute about her messing up his hair, and the next minute would gently squeeze her hand. "This anger comes on me and I've got to get it out, then I feel so bad," he explained to Andi.

Self-loathing sometimes consumed him. He berated himself for being stupid and foolish about drugs and AIDS, and for over disciplining his precious daughters. Nothing had gone right in his life, and his weaknesses and failings had just made it worse. Vickie visited regularly, and they seemed to be kindred spirits. A gentle earth mother who lived on a farm outside of town, Vickie also eschewed conventional living and prodded him into reminiscing about his days as a musician. With his OK, she took notes as a keepsake for his daughters. She sat on the only "chair" in the room, a portable bedside commode, and they frequently joked about his thrift-store furniture, sharing tips about the best alleys in which to find castoffs. They talked about what possessions he wanted to leave to his daughters, and together they began to compile a list. This led to making out a written will. Each of these tasks inched toward completion as the days drifted by and he lay in bed, semiconscious much of the time, his eyesight failing and his memory dimming. Aside from the hospice team, his only visitors were two friends from his band-playing days, Heather and Starlight. Although he was usually too weak to converse, they would sit on either side of his bed, one massaging his feet, the other stroking his head, and talk quietly to him or with each other.

As Jake's body deteriorated, Pauline grew exhausted from the round-the-clock changing of bed linens, doing wash, cooking, and cleaning. Vickie arranged for a hospital bed to be delivered to the home. She also persuaded Pauline to allow a hospice volunteer to stay with Jake for a few hours during the day while she got some rest. And Vickie proved her mettle in managing the practical matters of dying when she helped Pauline contact the International Red Cross, enabling Jake's beloved older sister, Gerri, an army nurse stationed in Italy, to come home.

The household changed with the arrival of Gerri, who took over the daily care giving duties from their drained mother. She remarked that Jake had "mellowed out like an old man." His cantankerousness now flared only sporadically. Gradually, he had stopped resisting and, instead, began letting his family express their love by caring for him. At times their attentiveness reached comic proportions. One night when Gerri had been dozing beside Jake's bed, she woke up, touched his arm, and asked if he was cold. Although he said no, he felt cool to her, so she tucked his blanket over his shoulders and asked if that was all right. He nodded slightly. A few minutes later Pauline came into the room; noticing that his arms and shoulders were uncovered, she asked if he were cold. "No," he said, but he lifted his arms, knowing she would cover him up. After she left the room, Gerri glanced at her sleeping brother and saw that his arms and shoulders were once again lying exposed across his chest.

His younger sister, Arlene, arrived, and they had the makings of a family reunion. The three women fussed over him like a new baby, and Jake, still crusty, tolerated their nurturing. The care and tending of Jake was more like a blessing than a burden. Even his bedwetting gave Pauline a chance to freshen his sheets and fuss over him. He and Gerri frequently watched their mother putter about his room, folding and arranging everything. "Yup, Mom's sure tidy," Jake wryly joked.

Andi was also a regular visitor, and Jake won her over immediately with a mixture of charm and honesty. When they met he was smoking pot; instead of hiding it or apologizing, he teasingly quizzed her on where to find more. Andi always had a soft spot for people like herself who used charm deftly to get their way. They developed a routine. As Andi took vital signs, emptied his urine drainage bag, applied ointments, and swabbed sores, Jake recounted the previous night's dizziness or nausea or leg pain. After attending to medical matters, she would draw him out, and he would eagerly offer his views on a variety of subjects, from the topical to the philosophical.

Audi was a good listener. Jake's divorce had soured him on religion, and he insisted that he would allow no "Bible-thumpers" in the house. But he agreed to meet our chaplain, an ordained minister and gifted counselor. She astutely described Tom as someone "who used to be a hippie and doesn't have a church." Tom visited Jake a couple of times, slowly learning about the family and Jake's history. While Jake expressed strong opinions about everything and was not reticent about religion, he surprised us by accepting Tom's offer to celebrate communion.

The afternoon Tom brought communion for Jake and his mother marked a dramatic turn. Jake acted indifferent to the service and seemed unmoved as he sipped the wine and ate the wafer, his mother kneeling beside the bed. He looked steeled against any spiritual experience. Yet at the end, he let out a long sigh, gratefully thanked Tom, and muttered to no one in particular, "I've made my peace with the church."

Tom sat with Jake after the service; they had previously spent many hours sitting in peaceful silence. As Tom was about to leave, Jake told him that he felt the end was near and that he was ready to die. Tom's response took Jake aback: "You can't die without saying goodbye to your daughters. I think you need to call them or ask them to come."

Later Tom told me, "You know, I'm almost never that forceful, I don't know where that came from. It was intuitive, I guess, but it was clear to me that it was something Jake had to do."

It was as if our chaplain had looked into Jake's soul and knew his dearest wish. Jake had long been estranged from his family. The divorce had been messy, with many recriminations, and he had hardly spoken to Jeannie or his younger daughter in years. Nevertheless, Tom's emphatic encouragement moved him to take the first step toward reconciliation. He asked his mother to call California. The family's meager resources posed a challenge, but the hospice team devised an affordable plan.

In the meantime Jake grew sicker, unable to leave his bed, drifting in and out of consciousness. At times he stared into space, as if watching an invisible tableau of people. On the wall over his bed, his mother taped pictures of his daughters. Everyone knew he was holding on, waiting for his "girlies," as he called them, to arrive.

Jeannie and the girls traveled by bus from Long Beach, arriving in the early evening. Stepping into Jake's bedroom, they hung back, shocked by and unprepared for the sight of his emaciated, diseased body. Jake opened his eyes and slowly focused on his ex-wife. As she came closer, he held out his arms to embrace her, and he whispered, "You have always been ..." Jeannie bent into his arms and then lay down beside him.

I saw Jake again two days before he died. The outside of the house had not changed; it was still wrapped in the pungent smell of freshly cut lumber and surrounded by a blanket of dirty snow. Against the gray winter sky, however, the inside of the house was aglow. This family had not always been close or warm, but the atmosphere in the home that day would have thawed the coldest cynic. Jake's illness had refocused the Edwards family. Now that the children were grown, it was their turn to take the full share of responsibility for making this family what it could be. The knowledge that Jake was dying caused grief, but it also provided a critical opportunity. They reminded me of something psychologist and theologian Gerald May said: "Grief is neither a disorder nor a healing process; it is a sign of health itself, a whole and natural gesture of love. Nor must we see grief as a step towards something better. No matter how much it hurts--and it may be the greatest pain in life--grief can be an end in itself, a pure expression of love."

Pauline and Gerri greeted me at the door, eager to talk about Jake and introduce the latest family arrivals. Over the past few days he had been semiconscious, but at times clear and alert. When I arrived he was sleeping, so I sat with the family for a little while before going into his room.

"He hasn't lost his orneriness," his mother noted, almost with pride. "He's just putting up with us better." She and Gerri recounted the latest incident, each adding a piece in an affectionate duet. The night before, Gerri had crawled into bed with her brother and tucked her arm around his frail shoulders. As she snuggled her head next to his, he remarked in a hoarse voice, "I crapped on that pillowcase, you know. Crapped on the sheets, too." She chuckled. "I don't mind, I'm sure Mom cleaned them," she said.

Each daughter spent hours with him, sometimes lying down beside him. "Cecilia told him how she loved him," Pauline recounted, "and he told them about his AIDS and drugs, and how sorry he was and how much he loved them." Her eyes teared up, but she smiled with the knowledge that Jake had finally forgiven himself for the pain he had    caused his daughters.

Andi described Jake's growing peacefulness: "One afternoon, out of the blue, he turned to me and said, `You're beautiful.' But he wasn't really talking about me. He had that dreamy, faraway look. I know he was talking about himself." At last, Jake was at peace with his imperfections; he could accept and love himself.

Jake had withered since I last saw him. His skin was gray, and his hands and feet felt cold. He was alert only a fraction of the time and swallowed only small sips of water and tiny bites of food. He shook his head when I asked if he was in pain or uncomfortable; earlier he had accepted Andi's suggestion of a simple pain medication and could swallow Dilaudid, a morphine-type drug.

Over the next two days, his sisters, mother, ex-wife, and daughters stayed close, taking turns sitting beside him, mopping his brow, wetting his lips, holding his hand. In hushed tones they giggled about the time he cut Arlene's finger with an axe, and both of them worried more about their mother's wrath than the sister's injury. Each time someone entered or left the room, they hugged, but their eyes were dry. They were letting him go. Jake died on a Friday afternoon around four o'clock, surrounded by his family.

I spoke with Pauline a number of times in the months following Jake's death. She missed him terribly, and it would take her more than a year to relinquish his ashes and scatter them over Blue Mountain, as she had promised him. Nevertheless, she was grateful for those final days with her son. If I was the conductor for this concerto, then surely Pauline was its first violin, its virtuoso. Despite Jake being unconscious most of the time, alert for only moments and unable to see, Pauline described it as a "special, special time. We all shared with him what was happening. We have never before been that close, that intimate, as a family. If there is such a thing as a wonderful death, Jake was blessed with it." [159-171]

 

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