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THE HARDEST DECISIONS AND THE GREATEST OPPORTUNITIES:
All the passages below are taken from Dr Ira Byock’s book, “Dying Well”, published in 1997.
I remember the day I learned that Janelle Haldeman had been referred to hospice. I was reviewing a pile of patient records in preparation for the weekly hospice meeting when I saw her name and list of diagnoses. Seventeen years old, Huntington's chorea, seizure disorder. Two thoughts flashed through my mind: Oh, God, Janelle is dying and Thank goodness, someone referred her. Thank goodness we'll get to take care of Janelle.
I knew Janelle and her mother, Carla, from my position as an emergency physician at Community Hospital. Every so often, Carla brought Janelle in with minor injuries after she had a seizure, or a minor cut from a fall, or when she was ill with a chest cold or stomach flu. The ER nurses and I would patch her up and send her home, but I always knew I would see her again. Janelle had a rare, juvenile onset form of Huntington's chorea, a hereditary disease that attacks the nervous system and brain, causing uncontrollable muscle spasms, progressive mental deterioration, and ultimately death. The adult form is sometimes referred to as Woody Guthrie's disease, because the famous folk singer died from it. Normally, children do not show signs of this familial illness, but Janelle was one of the few exceptions. Her first twitches had begun around age eleven, and the disease had advanced steadily. The fact that Janelle was being referred to hospice meant, of course, that she was now dying.
While feeling that Janelle's dying was tragic, I also hoped that it could open her and Carla to acknowledging, and savoring, the achievements in her young life. Each, in her own way, had spent her life fighting. Well before I met her, Carla had been constantly battling one bureaucracy or another--the school system, the county or state health system, the hospitals and clinics--always pushing for a little extra, some special service or better handicap device for Janelle. Janelle's battles were more directly with her illness, which was an unprincipled, vicious enemy. She also had regular clashes of wills with her mother and other members of her family.
The family was a stew of emotions: Carla's guilt over Janelle's disease; anxiety over conflicting demands for attention from Tommy, Janelle's brother, and Joe, Carla's live-in boyfriend; Janelle's teenage temperament, exacerbated by the irritability and depression brought on by the disease. The family was in constant turmoil. This final chapter in Janelle's life could be more of the same, but it also represented one last opportunity for them to pull together--for her sake, and for all their sakes.
In talking with family members about the decisions they can make and opportunities they can provide for a dying loved one, I occasionally ask them to imagine a time months after the person has died when, perhaps in the intimate quiet of early morning, they might ask themselves Did we do the right thing? Did we make the right decisions? Did we give up too soon or hang on too long? Was there anything else we should have done? Did we seize every opportunity, take every action, for a loving, peaceful end? I want them to be able to review what happened and confidently conclude: Yes, we did it right. My hope is that, without reservation, they will be certain of this.
Progressive terminal illness, in contrast to sudden death, offers a chance to reconcile strained relationships or to complete relationships. Completion does not require ending interaction or severing a relationship; rather, it means that there is nothing left unsaid or undone. When a dying person and a loved one feel complete between themselves, their time together is marked as much by the joy of being together and by mutual affection as by the sadness of impending departure. And the history of a relationship and family is transformed when the story of two persons ends well.
Immediate events or goals also take on special significance for someone who is dying. Meaning and purpose for the dying person is frequently anchored in individual events, achievements, and expectations, or in long-term goals that have become immediate. Often the goals are simple, such as yearning for rich interactions with family and friends. People say things like "I want to rest today so that I have the strength to visit when my sister/son/ daughter comes this weekend."
For children who may not have the life experiences or capacity for abstraction to imagine distant, intangible goals, events such as birthdays, holidays, and celebrations are especially important. Although it was not noted anywhere in the pounds of Janelle's medical records, it became clear early on that she had a critical goal to accomplish before she died: Janelle needed to graduate from high school. Completing her education and experiencing the reward of the ritual and ceremony of graduation became the driving force in her final months and weeks. It was also clear that for her to participate in her graduation, Carla and the health care system had not only to make peace, but actually to work closely and creatively together. A friendly, funny, likeable kid, Janelle also needed to complete her relationships with school friends and the small rural community where she grew up, or almost grew up. Finally, she needed to feel closeness and achieve a sense of completion in her relationship with her mother. At the time of her hospice referral it all seemed like a real long shot, but, for Janelle, it was worth a try.
No one was happy about Janelle being moved to Heatherfield Nursing Home, a sprawling facility surrounded by shopping centers on the outskirts of Missoula. The medical professionals and the county child protective services staff had concluded that Carla could no longer adequately take care of Janelle. They probably disapproved of her rather chaotic living situation, including Carla's live-in boyfriend, Joe, an admitted alcoholic and ex-convict. Several incidents in which bystanders reported Carla yelling at and at least once shaking Janelle had led to a family hearing and a court-appointed guardian for Janelle. Janelle's natural father, who had developed symptoms of Huntington's when she was a toddler and was now also dying, had left the family years earlier. They lived in a trailer in the woods near the town of Jefferson, about sixty minutes outside Missoula, and this distance undoubtedly also fed the decision to send Janelle to Heatherfield.
Indeed, Janelle needed the medical care Heatherfield offered. She required twenty-four-hour attention, not only for daily living activities such as eating, bathing, toileting, and grooming, but also because of recurring episodes of choking and seizures. Eating had become difficult, food would not stay down, and she had become dangerously thin. Three times within the last eight months she had developed pneumonia from aspirating particles of food. About five feet, four inches tall, with curly blond hair that had once flowed to her waist but was now short, making it easier to wash and maintain, Janelle had an impish grin and flashing, mischievous eyes. From my first contact with her in the ER, five or so years earlier, I remembered her as a preteen on the skinny side. When she went into the nursing home she was almost eighteen years old, and she weighed just seventy-nine pounds.
Carla Haldeman, having battled authority figures all her life, regarded Heatherfield as an extension of an insensitive, stingy health care system. On the receiving end of low-paying jobs and government assistance, she had always seen the proverbial glass to be half empty and believed that help had to be forced. Quiet and serious, she trudged through life with a chip on her shoulder. When it came to Janelle's illness, however, her scrappiness had proven an asset. For years she had insisted on the best treatment for her daughter, refusing to accept second-class fare. It was inevitable that she would butt heads with the nurses and administrators of Heatherfield.
A modern facility, Heatherfield is designed with a functional layout; specialized residential wings radiate from a central living unit. It has a wing for patients requiring skilled nursing care, a wing for more stable long-term care, and a wing just for Alzheimer's patients. With more than ninety residents, there are always people shuffling to and from the dining hall and recreation areas, or staff in green or white scrubs hovering over medical carts, conversing in clusters or tending to residents. It is clean, brightly lit, and thoroughly sterile. For residents, it must feel like living in a Holiday Inn.
Janelle disliked being at Heatherfield even more than her mother disliked having her there. She was lonely and, at times, uncomfortable. Her double room was furnished with the usual hospital furniture, a VCR, which I think she never used, and a boombox so she could listen to her idol, Garth Brooks. While she had the basic creature comforts there, what Janelle craved was people who would talk to her, read to her, and touch her. Given the nature of nursing homes, it was inevitable that Janelle's demands for attention or needs for care were ignored at times.
One of the first times Carla and Joe visited Janelle at Heatherfield, they found her twisted in knots, both literally and figuratively. Locating Janelle's room was complicated enough, a matter of turning left, right, left, left, and right after the reception area. Her room was in the middle of a long wing at the rear of the building; as soon as Carla turned the corner at the nurses' station, she heard her daughter's distinctive howl. Months earlier the disease had robbed Janelle of articulate speech, so she expressed herself with sounds or by slowly, painfully enunciating individual words. Her speech was now similar to that of a person with severe cerebral palsy.
Joe entered the room first, frantically glancing over the bed and the corners of the room for Janelle. He quickly spied her caught under the bed, twisted around the lowered guard rails.
"Baby, baby!" he exclaimed and scrambled to extract her. Over six feet tall, with long, wavy gray hair and weathered skin from outdoor work, Joe looked like a mountain man. Yet his tough exterior disguised a soft, sentimental core. When Janelle needed attention and patience, Joe was there.
Carla hung back as Joe untangled Janelle's limbs from the cold chrome bed. She scowled as she surveyed the room and silently criticized the makeshift mat on the floor that had been provided for her daughter. The middle of the floor was the safest place for Janelle, because there she could not fall or flail and bang herself. Joe cradled and rocked Janelle as she vented her frustration with staccato outbursts of "Help" and "No one."
"Janelle, calm down, you're not hurt," Carla stated flatly. "Don't you have something around here to push for help?" Not seeing a call button, Carla wandered into the hall looking for a nurse. She returned a few minutes later with a young woman in tow who looked just a little older than Janelle and seemed flustered at being collared by this irate mother. Joe had pulled the mattress from the bed to the floor, where he sat beside Janelle, stroking her arm with a slow, soothing motion.
"I ... I ... get ... so ... mad," Janelle said, her voice wavering like a tape player being shaken, her head rigidly cocked to one side.
"Take your time, baby," he said.
"She needs a better floor mat," Carla scolded the nurses' aide. "And a blanket. Look how thin she is, she gets cold very easily."
"Don't blame us," the young woman snapped. "She keeps pulling off her covers and yelling if someone's not here right away. We've got lots of other residents to take care of."
"I know she's not easy to take care of. God knows, I know," Carla conceded. "She could've even got caught under the bed on purpose." She nervously cast her eyes about the room, avoiding looking at the aide or Janelle. "She'll do that, you know. If she's angry and wants attention, she'll do that. She's bullheaded that way, like me. But she needs a blanket, and a real mattress on the floor."
"I'll see what I can do," the aide said, sidling from the room.
Carla knelt and kissed Janelle's forehead. "Look what we brought you." She held a small bouquet of dyed purple carnations low enough for her daughter to see.
Janelle responded with an appreciative, wavering coo.
In less than a minute, however, Carla was back on her feet. "Come on, Papa, we've got to go," she announced impatiently. Janelle's plaintive eyes bounced from her to Joe and back again. "I'm sorry, baby, but we got a bunch of errands. We got to get to Costco before it closes." She gave Janelle a kiss, scooped up her purse, which she had dropped near the door, and scurried out with an unprotesting Joe lumbering behind her.
The visit was vintage Carla: a cool assessment of how Janelle was doing, a skirmish with the staff, and a quick exit. Fifteen or twenty minutes max. It was not a lack of caring; quite the contrary: it was escape behavior, more avoidance than denial. This was how she handled grief. Around Janelle, Carla was in constant motion, busy fussing with something in the room or getting something from the office or dashing off to talk to a nurse or the Heatherfield administrator. While fiercely protective of her daughter, she kept a safe distance from the intense emotions of dying.
Like her mother, Janelle, too, was unsentimental and shunned displays of emotion. She liked things light and humorous, and turned stoical and snide when strangers expressed sympathy or pity. But temperament aside, she was still a child who craved motherly affection.
Janelle had two best friends: Connie and Davie. Connie was a teacher's aide for Janelle's freshman class when she was still being mainstreamed. They bonded early on, and Connie had continued to tutor Janelle at home when she could no longer attend school because of her deteriorating health.
Janelle's diminished endurance and mild but progressive dementia limited her attention span so that schoolwork was partly ceremonial. Most days Connie spent time reading to Janelle, or playing cards--usually Crazy Eights--or listening to tapes. Officially, however, Janelle remained in school. Connie was a regular visitor at the nursing home, where she acted as her protector and comforter. Davie, who had a serious learning disability, was in Janelle's class at school. They were partners in the special education track in their rural school and became an unlikely but inseparable pair: Janelle, the brains, and Davie, the brawn. He would push her wheelchair about the school, and she happily picked their route and directed their games. Even though distance and his own therapies prevented Davie from visiting Janelle often in the nursing home, their friendship was central to the completing act of her life. Janelle had strong opinions about some things, and her graduation was one of them. She made it clear that she was going to graduate with her class, and that she and her friend Davie were going to be together when they received their diplomas.
Janelle's health rapidly slipped in the nursing home, and a string of harrowing incidents threatened to shorten her time even further. Connie visited one Monday to find Janelle and the nurses in distress. As soon as Connie appeared, Janelle shrieked a grateful greeting. She was on her floor mat, limbs akimbo, her attention roaming between the soap opera on the television and the snowstorm outside.
"Connie! Connie! You're here!" Janelle blurted.
"Hi, Jan, I'm glad to see you, too." Connie knelt on the mat and smoothed Janelle's short, curly hair. Janelle's obvious relief at the sight of her friend made Connie think of puppies in an animal shelter, desperate for attention. "Has your mom been here?" Janelle's forehead felt warm, almost hot.
Connie waited for Janelle's answer, which was a jerky shake of the head, indicating no.
"Oh, Janelle, I'm sorry. Do you want warm fuzzies?"
Janelle's response to the question was a crooked smile. Connie laughed as she grabbed a teddy bear from the bed. "OK, I'll give you one fuzzy, then I want to find a nurse." Connie tenderly rubbed Janelle's face with the bear. She swooned with pleasure.
Connie left the bear in Janelle's arms and marched to the nurses' station at the end of the corridor. A man and a woman in white polyester uniforms were behind the counter talking to each other.
"Excuse me," Connie said, with firm politeness. As neither a family member nor a medical professional, she was on shaky ground to complain or ask for special attention. "I'm visiting Janelle Haldeman, and she feels like she's running a temperature. Could one of you take a look at her?"
The woman, who looked like a seasoned nurse with a hedgerow of instruments sticking out of her breast pocket, looked up.
"Not again," she exclaimed, and headed straight for Janelle's room, talking as she walked. "Janelle had a bad night. The night nurse said her light was on almost constantly, and she was thrashing about a lot. They couldn't keep her covered or figure out what was wrong."
"Did she get her sleeping pill?" Connie asked.
"No, I think she has to ask for it. It doesn't look like she's gotten it for the past few nights."
The nurse pulled a chart from the plexiglass hanger outside the room. Connie dropped onto the mat beside Janelle, who was curled in a ball, totally rigid, with her eyelids fluttering.
"Easy, easy, it'll be over soon," Connie comforted, stroking Janelle's forehead.
"Umm. It says here that Dr. Byock had wanted the sleeping pill given every night and that he ordered an extra evening dose of Tegretol. I wonder why she didn't get it?" The nurse studied the chart.
"Can't you see she's having a seizure?!" Connie interrupted. "Can't you do something?"
Startled, the nurse looked up from her chart. "Oh, Jesus, you're right. Just keep her on her side, I'll run and get some medication," she declared, and hurried from the room.
As she had done countless times before, Connie stayed with Janelle as she endured the electrical tempest swirling through her brain. Her annoyance at the nurse not noticing Janelle's seizure was tempered by the knowledge that, at other times, nurses had thought she was having a seizure when it was just her body jerking as she reached for something or repositioned herself. With Janelle it was sometimes hard to tell. Yet Connie fumed, thinking of how the Tegretol, an anticonvulsant, might have spared Janelle the seizure. She reflected that Janelle must feel this helpless and twice as angry a lot. By the time the nurse returned, the seizure was over. Once Janelle's body relaxed, Connie mopped her brow and stayed with her, saying soothing things and giving her "warm fuzzies" until she fell asleep.
At one point in the afternoon, Connie overheard the nurse talking with a Heatherfield social worker in the hall outside Janelle's room. "We tried to reach her mother last night, but someone said she's away. And we couldn't find the county woman who's Janelle's legal guardian. We didn't know who else to call. And then there's her primary doc and Dr. Byock and the hospice people." She paused. "This stew has too many cooks."
When I finally heard from the nursing home about the delay in Janelle receiving her nighttime medication and the quickening pace of her seizures, I was furious at the nursing home, and I suspected that the staff was avoiding Janelle out of annoyance with the family. I immediately visited her and, after an examination, ordered a blood count and measurements of serum electrolytes and anticonvulsant drug levels. If necessary, I would make daily visits to force the institution to pay attention. I tried to reach Carla, but, without a phone in their trailer, had no success. I contacted Harriet Davis, Janelle's court-appointed guardian, and discussed the situation with her. She agreed with my feeling that this child deserved better care, and I proposed a meeting of the principal players to discuss coordinating that care. The following Tuesday afternoon, seven of us gathered in a conference room off the Heatherfield dining hall.
The atmosphere in the meeting room was tense and frosty, like the harsh early spring outside. I hadn't actually seen Carla in well over a year. She had aged--more salt now than pepper in her hair--and, I thought, looked tired, especially her furrowed eyes. After thanking everyone for being there, I related my simultaneous shock and relief at first learning that Janelle had been referred to hospice. I asked Carla to remind me when I last saw Janelle. She brightened just a bit and recalled a visit to the ER when her daughter had fallen from her wheelchair and needed ten stitches in her scalp. "You complimented Janelle on her pretty purple dress and matching hair ribbon and put her at ease. While you sewed Jan up, I guess the nurses washed the blood out of tile ribbon and blow-dried it. After you were done, you tied it back in her hair and gave her a hug. Janelle talked about that for weeks. She always liked you a lot."
"It sounds like the last couple of years have been pretty lousy for Janelle. From reviewing the medical records, I know she's been having more stiffness and jerking, and trouble eating, and now, more seizures and medication side-effects. But all that doesn't tell me what it's been like for you and your family."
Carla had been intently regarding me while I was speaking; now she looked down and paused. "It's been hell." She spoke softly. "Everything I did seemed to make things worse. Janelle is such a trooper; such a fighter. It has killed me to see her lose weight and suffer like this, hurting herself in falls and seizures. I get so impatient and angry with her sometimes." She looked mournfully at Harriet and then fell silent.
"She has been a fighter, and so have you, Carla," I continued. "I think you know that I've always had respect for you as an advocate for your daughter. I can remember times in the ER when you told me that you had brought Janelle in partly to document the need for some protective device or new piece of equipment and to build a case for the state to pay for it. All that she has been able to do in the last five years is a tribute to you and your commitment. Despite whatever happened and the court appointing a legal guardian, I know full well how much you love this little girl." I said these things mainly for Carla's benefit, but I was also deliberately speaking to Harriet and the nursing home staff. They needed to know that Carla could not be dismissed as another dysfunctional or abusive parent.
"From hearing you describe her deterioration in the last year and a half, and from reading her medical records--especially the hospital records from her admissions for aspiration pneumonia--it seems that Janelle may finally be coming to the end of her illness." I waited for a moment. Carla looked up and nodded enough to let me know she wanted me to go on. "I long ago stopped predicting how long people had to live. But as I graph Janelle's decline in my mind, it's hard to imagine her still being with us in the fall." I chose my words carefully, trying to be as gentle as possible while saying the hard things that needed to be said. "Her body seems to be trying to find a way to die." After a moment for all this to settle, I asked, "What do you think?"
Carla was composed but quietly crying. Joe had put his arm around her shoulder and was holding her close. "I think you're right, Dr. Byock. It breaks my heart to say it, but I know you're right."
"You know, I think we have some serious decisions to make. Because she is the court-appointed guardian, Harriet now has the final vote on what treatments are given, but I think we have a chance to make decisions we can all agree on."
Harriet quickly chimed in with her support. "I want Carla and Joe and Tommy to all feel we're doing the right thing. That's why I'm here today."
"Carla, I think it's inevitable that some night, perhaps three or four months after Janelle has passed away, you will waken in the early morning dark and remember that she has died. Typically, a person's first reaction to realizing it was not just a dream is a wave of sadness. But at such times people often ask themselves, Did I do the right thing? It is my goal that if and when you ask yourself that sort of question you will be able to recall the sequence of events and confidently answer yes. I want to promise you that we will not let your little girl suffer. I simply will not stand for it, and neither will anyone else on our hospice team." Once again, I was speaking to Carla, while putting everyone in the room on notice. "But more than this, I think what we need to do today and in the next few weeks is to create a plan of care that leaves you feeling not only confident that your child is comfortable, but also feeling that she is honored--and even celebrated--in her passing. That's my goal, and I think we can achieve it. But it will require us to work together--all of us."
I panned the room, making brief eye contact with everyone. For a moment no one spoke, but the mood had notably softened; their faces told me it was safe to continue. "Carla, if we can accept the hard fact that Janelle is dying, what would make the rest of her life the best it could be?"
"Graduation!" The reply was quicker and louder than the conversation had been.
Connie's sigh of relief was audible. "Oh, thank God you said that!" Carla and Connie smiled at each other. "That would make Jan so happy! And Davie could wheel her down the aisle."
The tone in the room changed again. A few people had become a bit misty during the last interchange--even, I noted, one of the crusty Heatherfield nurses. Now there was a palpable sense of enthusiasm. Hearing Carla speak of Janelle and seeing her emotion, every person in the room was moved on a gut level. Despite her faults and demanding behavior, no one there could ever doubt the love this mother had for her child.
Because she was still an aide at the school in Jefferson three mornings a week, Connie knew the when and where of graduation day, and the schedule for the event. We discussed logistics and possible medical obstacles. It was now March; graduation was in late May. It was a long shot at best, and we all knew it. We would need to boost Janelle's nutrition and treat her recurring respiratory infections if she was going to live to see graduation. This would require considerable medical care. Planning for the actual day--from making a special gown with Velcro closures that would fit her contorted body, to transportation, to emergency plans--all would require considerable creativity. A tone of camaraderie now pervaded the multiple conversations that broke out over this or that detail.
We decided a dry run was a good idea, an afternoon trip to Janelle's school to see if she could take the long drive and the excitement of seeing her friends without becoming overly stimulated or utterly exhausted. In addition, a plan was needed for seizures or other medical crises that could arise on the hour's drive between towns. Connie and Carla agreed to be trained in administering medications by injection (through a subcutaneous "button" a nurse would insert) in case Janelle had a seizure. The group was so enthusiastic it reminded me of teenagers planning a prom.
As we talked about Janelle's health and getting up her strength, the previous miscommunication snafus were raised. Susan Brannigan, a Heatherfield social worker, offered a solution.
"I remember when I worked with a patient at St. Pat's and there were lots of people involved, what we did was set up a journal. This was a notebook we kept in the patient's room with absolutely everything written in it. Not only updates of the medical situation, but family notes and communication between the aides, and notes to family and aides from the nurses and doctors, too. That way, everyone knew what was going on."
"Sounds reasonable," opined Lily Day, a staff nurse on Janelle's wing. "We certainly wouldn't have any problem with that. As long as everyone else holds up their end," she added snidely.
The meeting broke with the insistent beeping of my pager. As I stood at the wall phone talking with a hospice nurse about a patient's medication, I watched Janelle's newly invigorated team gather their papers and purses. Carla no longer looked angry but simply guarded, and the nursing home social worker lingered to assure her she could visit any time, even spend the night.
Connie and I were the last two to leave. "I thought I'd drop in on Janelle," I mentioned.
"Oh, she's not in her room, she's in physical therapy I'm going there now. I'll show you the way."
Noticing Carla heading down the opposite corridor, I raised my eyebrows to Connie.
"Nope, she's got to get home. Joe's dinner. Between Joe and Janelle, Carla's like a puppet on a string, back and forth. I wish Carla would spend more time with her. Last week, after Carla just flew in, said hi, kiss-kiss, then left because Joe needed cigarettes, Janelle cried herself into a seizure." Connie's voice was sad, not disapproving.
We passed the aviary with its chirping finches and canaries, where many of the home's elderly residents spent hours in wheelchairs, watching the birds. The combined occupational and physical therapy room, tucked into a corner of a wing, was a large open space with crafts benches as well as parallel bars and mats and lots of chrome training apparatus. Janelle, in shorts and a T-shirt, lay on her back on a bright red mat, and a male physical therapist was helping her with stretching exercises. Standing over them and laughing was Janelle's other therapist, a young woman named Diane.
"You're breaking Kevin's heart, Janelle!" Diane exclaimed.
The handsome, muscular Kevin looked crestfallen. "Come on, Janelle," he was saying as he gently manipulated her leg. "My girlfriend doesn't think I look that bad." He implored, "She thinks I'm cute. Why don't you?"
"You're ugly!" Janelle blurted out with a puckish grin, and Diane laughed some more. Teasing the good-looking therapist looked like a favorite pasttime for Janelle and her friend. We did not want to interrupt, so we hung back until a break in Janelle's routine; we said hello, Connie gave her a hug, promising to return, and we left.
Janelle breezed through the pregraduation trial run; she rode up and back to her school and saw her friends, and the excitement and fatigue she felt did not cut the trip short. A week before her real graduation, however, our optimism was dashed when the seizures and another infection hit with a vengeance. Each seizure rendered her more spastic or more rigid, and the infection wracked her with fevers and left her utterly exhausted. As if this were not enough, one night she had a frightening episode of bloody diarrhea. Consistent with the plan to which we had agreed, the hospice team and I jumped in to prolong her life. We ordered tests and gave her
antibiotics and ulcer medication to forestall her inevitable demise.
Distraught that Janelle might not live to reach her final achievement, Carla and Connie hastily planned a commencement ceremony at the nursing home. The teacher's aide telephoned Janelle's school, enlisting various administrators and friends, while the mother hurriedly finished sewing her daughter's gown and located a mortarboard.
But Janelle endured, and the mock graduation was canceled. Joe visited that week; lying on the mat beside her, he listened patiently to her halting words. "She never quit," he says in recollection. "I held her and rubbed her and told her it was OK, because she was fighting so hard and she was hurting so bad. I don't think she fought death because of the fear of dying, I think she fought death because she wanted more life." The Monday before graduation, Janelle's temperature completely resolved, the seizures subsided, and her GI upset abated. Connie, following Janelle's direction, decorated her wheelchair with crepe paper in the school colors, purple and gold.
On Saturday the Jefferson High School gymnasium was packed with hundreds of parents and teenagers. Rows of folding chairs covered the shiny wood floor, and a raised platform occupied one end of the gym, right below the basketball net. A sign pasted on the wall behind it read "Home of the Knights" in large block letters, and listed the names of each graduate. Janelle's stood out on the end. The noise of the band, crying babies, and people calling out to one another bounced off the bleachers and almost drowned out the first speaker.
Carla and Joe, along with Connie and Diane, sat in the audience as the school band played a squeaky version of "Pomp and Circumstance" and the twenty-five grads filed in, led by Janelle in her wheelchair, pushed by Davie. Janelle was in deep purple from the top of her head to the spokes of her wheels. Occasionally a spastic leg kicked out, but she did not seem to mind. She beamed and giggled when her mortarboard tumbled from her jerky head. On the way to the stage, each grad carried a single red rose and detoured to present it to his or her parents. Davie steered Janelle to the end of Carla's row, and people scooted back as she rolled up to her mother and presented her with the flower. Carla bawled, and Joe grinned.
The normal order for awarding diplomas was to begin with the eight-graders and then honor the high-schoolers. This year, consideration for Janelle and the stress of the long ceremony put her at the head of the line. The first speaker was a woman all the kids knew well, a checkout clerk from the local grocery store. In this small mountain town of barely eight thousand inhabitants, Mrs. Macafee had watched each of them grow from toddler to teen. A small, dark-haired woman in a tailored dress, Mrs. Macafee did not have to read her tribute to Janelle. She announced, “Janelle Haldeman: Those of us who know you are better for having known you. We love you, Janelle. God bless you." As Davie and Janelle moved forward to receive her diploma, the entire audience and all the graduates spontaneously rose to their feet and loudly applauded. The ovation lasted for two minutes, but it seemed suspended in time. Another senior girl leaned over to whisper to Janelle as she passed, "That's for you:" Davie gave the thumbs-up sign to anyone who caught his eye. Janelle wept with joy.
This recognition was another landmark for Janelle and signaled the completion of her relationship with lifelong school friends and the community. With their standing ovation, these people acknowledged her spirit and specialness, and in receiving it she, in turn, told them how important they were to her determination to be there. There was nothing left unsaid. Love and admiration had been readily given, and received.
Following the ceremony, there was a party for Janelle in the special education room. It was decorated with balloons, streamers, and lilacs from Carla's garden, and Janelle presided over the festivities like a queen. Ensconced in her purple chair, she admired the sheet cake with her name on it and greeted her friends. A classmate brought her a teddy bear, and someone else gave her a new tape player. Connie hovered nearby with a small, battery-operated fan in her hand to cool Janelle. Connie watched for signs of exhaustion or an impending seizure; two syringes filled with exact doses of medication were in a zipped nylon bag close at hand. But Janelle was in a happy, healthy fog, miles from her disease. A couple of times Connie asked her, "Are you tired? Do you want to go, honey?" and each time Janelle shook her head.
Janelle continued to bubble with delight even at the end of the long day on the ride back to the nursing home. She did not want to lie down in the van and nap, but insisted on staying in her chair and continuing her barely intelligible chatter to Carla and Connie about all she had seen and done. In Missoula, the Heatherfield Nursing Home was waiting for her arrival. As Carla pushed her through the front door, they were greeted by a long banners and signs with drawings of her that proclaimed: "Congrats, Janelle!" Purple and gold balloons were everywhere. Janelle roared with pleasure. There were hugs and tears all around. Then, finally, Janelle announced, "I'm so tired," and her glorious day ended.
I was afraid of a letdown after graduation, not only for Janelle but for everyone else. Despite the exuberant success of graduation day, Janelle was actively dying, and while we could not alter her fate, we still needed to pull together and attend to her every need. We had to make sure she was comfortable and stay alert for any opportunity to enrich her waning life. I arranged for another meeting at the nursing home; it included the same people as before, plus Janelle's brother, Tommy.
We gathered in the same room, but now, instead of icicles outside, we saw an early spring chartreuse on the mountains. In contrast to the previous meeting, the mood was tinged with sadness and solemn resignation. In the week since graduation, Janelle had been having more frequent episodes of crampy abdominal pain, despite continuing adjustments in her tube feedings and medications; she was losing weight, and anything we gave her to add calories just made things worse. And her seizures had resurfaced, as they did whenever her general condition deteriorated.
Adding emotional insult to physical injury was the news that Janelle's father, long estranged from the family, who had lived for the past three years in another nursing home in town, had just died of complications of Huntington's. We needed to decide whether, and when, to tell Janelle.
Before moving to the more somber decisions that awaited us, I wanted to recapture the spirit of the last few weeks. I suggested that we begin with Carla and Connie describing graduation day for those who were not there. The rapt attention, smiles, and teary eyes of the nursing home staff increased my confidence for the task ahead.
The issues of whether to use antibiotics and whether to diminish and ultimately discontinue tube feedings had been introduced during our earlier meetings but put on hold as we had focused on graduation. Now we had to revisit them in earnest. "Graduation was a wonderful chance for us to honor Janelle," I began. "In the days and weeks ahead, we still have an opportunity to celebrate her in her passing. Right now Janelle is having a harder and harder time. The tube feedings are causing painful intestinal cramps and diarrhea, despite our having tried various different formulas and tricks. And she is still vomiting occasionally. It's only a matter of time before she gets another pneumonia. And her seizures are coming more frequently again. It's as if her body is searching for a way to die. The hard question for us now is: What would be the best way for Janelle to die?"
I turned and spoke to Carla. "The decisions we need to make about her care should be based on Janelle's comfort and pleasure. You have done all you can. Now all any of us can do is love her and maybe even pamper her in her dying."
Carla's flat expression might have been mistaken for a lack of feeling, except for the tear rolling down her cheek. She knew the end was near, and somehow my words gave her permission to grieve for her daughter and, for a moment, loosen her control.
"Carla, now that graduation is over, I want to ask the same question I asked a couple of months ago: If Janelle were to die suddenly, would there be anything left undone?" She dabbed her eyes and sniffled, and Joe held her hand. But she remained composed as she nodded.
"Dr. Byock, the research people have told me about a hospital in Massachusetts where brain tissue can be sent for study. Janelle is only one of seven kids in the world, you know, to get this at such a young age." From her purse she dug out forms from the Brain Tissue Resource Center at McLean Hospital. "I'd like her brain sent here."
Although I suspected that part of Carla's decision was a way to defer her feelings, I applauded the fortitude it took to contemplate Janelle's autopsy and the desire to give further meaning to her tragic life.
And Carla had made another decision. "Janelle needs to be told about her father having died. I'm worried that she'll be confused and frightened if she sees him in heaven after she dies and doesn't know he died. I'd like to tell her with Tommy," she said, casting an inquiring look toward her other child. Her children had never known the reasons behind their parents' breakup, and Carla had been scrupulous in saying only nice things about their dad. Janelle loved her father, though he was almost a fairy-tale figure--almost a fairy godfather--built upon dim memories of early childhood. And she knew he was very sick.
We confronted other tough issues at that meeting. Feeding Janelle via the tube into her stomach was to be gradually decreased, and her morphine would be supplemented by a continuous infusion of a small dose of Versed to keep her muscles relaxed and help control the seizures. I think everyone left the meeting feeling we had done everything humanly possible to make Janelle's passing painless and of value.
Over Janelle's last days, Carla and Connie visited her daily, often more than once a day. Harpists from the Chalice of Repose visited each day. As they played and softly hummed, Connie and Janelle lay on her new thick mattress surrounded by pillows; Connie rubbed Janelle's shoulders and Janelle rested, semiconscious. Carla arrived. As Connie had always done in the past, she indicated she would gladly relinquish her spot beside Janelle. Until Dow, Carla had always declined. This time, she slid onto the mat beside her daughter and stroked her.
Janelle died two days later, not long after her mom and Tommy told her about their father's passing. "I think it sort of eased it or made it OK with her," Carla says. "I think her dad's dying was like him coming to her and saying, `Come on, Janelle, it's time for us to run and play. It's OK. It's nothing to be afraid of.'"
The day after Janelle died, Carla, Joe, and Tommy returned to the nursing home for her things. They packed her clothes and teddy bear and music tapes in boxes and carried them out to the car. Tommy asked to keep the purple and silver Mylar balloon that Janelle had got at graduation and that had been floating around her room. He tucked it into the back of the car, but when he opened the door to load more boxes, it almost escaped. He tied the string around his finger. As they were loading the last box, the balloon slipped out the door and floated away.
"Let it go. It's meant to go, Tommy," Carla said. And they sat on the parking lot curb and watched the silver orb climb higher and higher, twinkle in the bright afternoon sun, and disappear. Everything's OK with Janelle, they thought.
The decisions people make to complete their dying days, or to help someone they love complete a life, are rarely easy. They are often gut-wrenching and may challenge basic beliefs about who one is and what is important. Nevertheless, these end-of-life decisions create opportunities for new experiences and discoveries that range from the fairly mundane to the frankly extraordinary. The opportunity for Janelle was to confirm her self-worth and to receive well-earned recognition from her family and community. There were a couple of times in the weeks leading up to her graduation when I doubted whether she would be able to hold out. Some days I was sure her seizures or another pneumonia would consume her.
Like Janelle, Carla found opportunities in ordinary routine and daily struggles. Her emotional calluses prevented her from doting on her daughter, but she showed her love by warring with the bureaucracies that ignored them. And ultimately, when the love was overwhelming, she expressed it with the simple gesture of lying down beside her daughter and soothing her rigid body.
As people struggle to make the right decisions in the midst of the staggering crisis of an imminent, untimely death, startling opportunities may be revealed--opportunities for nurturing, honoring, and celebrating the person departing. Very often I have seen families build living monuments to their dying member by the decisions they make and the care they give. And despite how much these challenges may threaten firmly held beliefs, it is remarkable how often they are made without wavering. To me, this willingness, and even determination, to venture into the unknown is the essence of courage. [119-137]
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