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Letting Go and Growing On to Spiritual
All the passages below are taken from Dr Ira Byock’s book, “Dying Well”, published in 1997.
I first met Mo Riley at her insistent request, which is unusual. Only occasionally do terminally ill patients ask to meet me. I suspect that some people regard "the hospice doctor" as a harbinger of death who appears on their doorsteps after modern medicine has exhausted its arsenal of possible cures and treatments. My presence may confirm their darkest fears. But not Mo. She had heard about me from friends whose families we had served in town, and she fearlessly asked me to visit; she was full of questions about me and hospice care.
Everything this woman did in her dying days reflected not just acceptance of her impending demise, but curiosity, anticipation, and even pleasure. She typified full, rich living through her very last breath. Mo also showed me how someone who is dying can transform herself from a vibrant, loving mother and person living in the world into an almost lofty being of beauty and spirit. The butterfly metaphor that is overused in hospice logos and sentimental pamphlets surely has its origin in passings of this type. In her dying, Mo epitomized a blessedness that comes with letting go of both the burdens and the delights of daily life--ultimately letting go of life itself and willingly slipping into another realm.
Yet for all its beauty, in fact because of its beauty, I hesitate to tell the story of Mo's dying. My hesitation relates to feeding critics who say that in focusing on dying well I am sugarcoating the dying experience. Skeptics of the idea of dying well like to remind me that death is hardly beautiful and is often messy and unpleasant. And I readily agree. Even for people who do die well, the process of dying is rarely enjoyable; indeed, it is commonly a wrenching time in one's life. Many people do struggle for a period of time in their dying. Every now and then, however, I meet a person who while dying seems to flow smoothly out of worldly concerns and relationships and toward an ethereal, spiritual state. Such people may have worked hard earlier in their lives on relationships and on aspects of themselves, acquiring in this way the skills to accomplish the taskwork of dying. Their lives were, thus, fairly well in order before the time of dying, freeing them to focus on growth within the realms of spirit and soul. Growing up, growing old, growing on--this was Mo Riley. Her confidence in who she was and what she had accomplished, and her faith, enabled her to let go of her worldly self and move into another sphere of existence. This experience for her, I believe, was marked by a joy and exhilaration that deeply touched all who knew her.
Yet even Mo's dying was not a fairy tale. Relinquishing her life and letting go of her sense of self were not effortless. An elegant and outgoing, yet private, woman, she suffered assaults on her sense of dignity during her physical decline and dependence. Before letting go, she had to say goodbye to six grown children and grandchildren. But she approached these tasks unflinchingly, with love and acceptance. Having created a life that brimmed with family and community responsibilities, she adjusted not willingly, but gracefully, to her infirm condition. She consciously shed anger and personal resentment, including any bitterness toward those who had failed her. Throughout her life and relationships, Mo did not lug around a lot of emotional baggage. She tended to express her feelings early and often, rather than allowing them to fester. And she took care of herself, cultivating a healthy, independent, and satisfying life apart from her grownup children. Not surprisingly, the same values predominated as she was dying. Rather than struggle against the waning of her strength and her life, Mo transformed the experience into an adventure full of wonder.
Months before we met, Maureen Catherine Riley had began her journey, when she noticed a seemingly innocuous tingling pain in her wrist. After three weeks of trying to ignore the sensation, she saw her doctor, who diagnosed the problem as carpal tunnel syndrome and fit her with a brace. Yet neither this nor subsequent visits to a chiropractor, acupuncturist, and naturopath helped. Instead the discomfort moved up her arm into her shoulder and neck. Mo (as she insisted on being called) suspected something was wrong, but she hesitated to trouble her doctor again. She did not like to complain. But she began having difficulty with daily activities. Her fingers felt like hot dogs, she could barely work a zipper, and she had to stop wearing earrings because her left hand felt so clumsy. It was a great nuisance, interfering with her stretching class, her volunteer job at the jewelry counter of the Bargain Corner shop, and helping out at Loyola Sacred Heart High School.
When the numbness spread and became a throbbing pain in her shoulder and neck in early June, two months after her first visit to Dr. Campo, she returned to him. He was concerned that her symptoms had not improved. He seemed irritated when he told her, "I wish you had come back sooner." Mystified by what ailed Mo, he referred her to a neurologist, who took an even more extensive history and examined her thoroughly. When he had finished, he did not tell her what he thought was wrong, but instead said simply that he strongly recommended an immediate MRI.
Until now the only notable entry on the list of problems in Mo's medical chart had been hypertension. She did not smoke, she barely drank, and her only habit was a great fondness for chewing gum, which she was never without. Sixty-five years old and retired, she had raised six children on her own, and she thoroughly enjoyed a healthy independence.
One of her favorite lifelong pastimes was collecting sayings, epigrams that she clipped from magazines and newspapers. With construction paper and paste she arranged them and inserted them into a premade wooden frame. Although gathered from a variety of sources, many of these sayings expressed a similar theme: "Do not dwell on the past but forge ahead." I wonder if she had these words in mind in the days following the MRI scan of her brain.
The scan showed a large intramedullary lesion, that is, some kind of mass or tumor at the base of her brain. The medical team at St. Patrick's Hospital moved quickly; within a day Mo underwent an angiogram to map the blood supply to this mass. Three days later she was taken to the operating room for an open surgical biopsy of it.
Mo's children had already mobilized, making sure she was not alone when she heard the pathology report. She had called her oldest son, Bill, who also lived in Missoula, before going into surgery, and he had alerted his siblings. Twenty-six-year-old Emily, seven months pregnant with her first child, immediately drove down from her home in Glacier National Park.
The biopsy revealed a grade four glioblastoma, a very fast-growing cancer lodged at the top of her spine and entwining the base of her brain. Dr. Campo told her that she probably had only a handful of weeks to live.
Being naturally reserved, Mo quietly absorbed the news and mulled over the implications. Over the years, the one saying that had become her mantra was: "Don't worry about the mule going blind, just load the wagon." True to her temperament and lifelong style of not fretting over what she could not change, she was pleased by the diagnosis in a perverse way. After hearing it she told the doctor, "This is great. I thought I would go quickly in the middle of the night, and never wake up. But actually, with a few weeks, I can say goodbye to everybody. This is better."
Remarkably, Mo never expressed any regret or irritation over the delay in diagnosis; anger was simply not a color on her emotional palette. Now that she knew what she had, it seemed to her that a month or two would not have made that much difference. Furthermore, women of Mo's generation were raised to believe that it was disrespectful to second-guess a doctor or question a doctor's advice. As far as she was concerned, her physician still knew best. After the surgery and biopsy, Mo stayed at St. Pat's to begin radiation therapy. The treatment was not going to eradicate the cancer, only temporarily shrink the tumor and ease her pain.
Mo's room at St. Patrick's resembled a florist's shop, with huge bouquets and vases of cut flowers lined up along the window sill and on her bedside table and dresser and spilling into the corners. Every day, she asked her children to take the flowers to other patients' rooms, and every morning, more were delivered. She had legions of visitors: women who knew her from the Bargain Corner, fellow volunteers and other parishioners, and her sizable family, which extended beyond her six children, with assorted spouses, to five siblings, assorted aunts, uncles, nieces, and nephews, and a handful of grandchildren. Mary McCall, a hospice nurse who was a friend and regular customer at Mo's Bargain Corner jewelry counter, stopped by to see her pal almost daily. On her first visit, she brought flowers, and a card on which she had written "If you're going to die, you can't do it without tattoos!" enclosing a washable "tattoo" of Betty Boop. The two women howled with glee as they debated where Mo should put it; long ago they had promised each other that someday they would decorate themselves with something permanent. Upbeat yet honest, with a quick wit and an easy laugh, Mo had many fans.
The day before she was to be discharged, a meeting was held in Mo's hospital room. The two sons who lived in Missoula, Bill and Bud, crowded around her bed, while daughter Emily occupied the sole chair, and Dr. Karen Stegner, the radiation oncologist, stood at the end of the bed. Blond and tanned, Emily looked remarkably trim for a woman in the third trimester of pregnancy. The men fussed with Mo's pillow, checked her water pitcher for fresh ice, and straightened the arrangement of greeting cards propped up on the dresser.
With Mo's chart in hand, Dr. Stegner spoke in a dispassionate but respectful tone as she described the cancer in medical detail: its exact location, size, and shape, and its effect on nearby tissue and the spinal cord. She reviewed the potential benefits and possible risks of radiation and chemotherapy. It was evident that this doctor had had these sorts of discussions many times. She avoided outlining Mo's prognosis in terms of cold statistics, as is so often done. Although she presented the relevant numbers, Dr. Stegner intentionally painted what lay ahead as an impressionist might--in broad strokes, shaped by expectations of disease progression and colored by likely symptoms and diminished functions.
"This is a high-grade astrocytoma. It is likely that very soon it will begin to affect your gross neurologic functions: balance, coordination, movement, sensory loss. You may experience headaches or more of the electrical sensations you had initially. We'll be asking about these things frequently, and you should be sure to let us know whatever you're feeling. We can adjust your medicines or do whatever is necessary to make sure you're not hurting too much." She paused and softened her voice. "You probably know the outlook is not good. We can possibly buy you a little more time, but there's no guarantee.”
Mo listened with a slight smile. She had prepared her children for this day years ago. As a single mother, she had always been concerned about what would happen if she died. She had made plans and told the kids about her will, funeral preferences, and organ donor wishes. She had clipped and given to everyone an article from the Missoulian about grown children caring for terminally ill parents, writing marginal notes like "Yes! Let's talk" alongside an explanation of Comfort One, Montana's "do not resuscitate" directive.
"Is it all right for Mom to be at home?" Bill asked anxiously.
"No problem at all. We'll get the hospice folks involved." The doctor looked at Mo, acknowledging a previous conversation they had had about hospice. Mo had brought the subject up, having heard about our hospice through Mary McCall. Dr. Stegner also knew that this would be the first time the family would be hearing hospice mentioned with regard to their mother's care.
"And we'll discharge her with a small moving van of stuff. Hospital bed, commode, quad cane, wheelchair, walker," she continued.
"I don't like a lot of mess and fuss," Mo said, with good-natured sternness. "I don't think we have enough room for all that stuff! Sounds like you're outfitting me for a garage sale!"
"Don't you worry, Mom," Emily interjected. "We'll find a place for it."
"If I know you," Mo teased, "you'll just shove it anywhere, and the place will look like a junkyard." Emily chuckled and rolled her eyes; when she had lived at home, this had been a constant arm-wrestling match between them. The daughter was a casual housekeeper with a healthy tolerance for chaos and clutter, and the mother loved order and clean surfaces. Now Emily had decided to move to Missoula to live with and care for her mother, while her husband stayed in Glacier Park. Their two temperaments would initially clash again. But this time the conflict would be a source of amusement more than acrimony. Emily's brothers in Missoula had offered their homes, but their complicated family lives made her move the best arrangement for everybody.
The group would have continued to banter and tease each other if Dr. Stegner had not sobered them up with her next remark.
"Your mother tells me she has decided not to pursue any further treatment. No more radiation therapy, no chemotherapy. She will accept medication for pain and other symptoms, but that is all." She waited a moment before continuing.
"Of course, the decision is hers, and I have no doubt that it is an informed and considered decision. I and the rest of the doctors will certainly respect it. But oftentimes family members have lingering doubts, and I wanted to meet with you all so that I might answer any questions."
She flipped through Mo's chart as she spoke and made no eye contact, but waited.
The three children looked at their mother. Mo waved her right hand in dismissal, breaking a bubble of tension.
"They know everything I know. I'm dying, and nothing's going to change that, so let's get the show on the road. I'm tired and I want to go home." Mo was not glossing over this momentous decision but summarizing hours of earlier conversations with her children over the last four days. While she had made up her mind that she did not want more treatment, until now she had hesitated to say so, because Dr. Catnpo was pressuring her to continue radiation therapy. Emily, irritated by her mom's reluctance to assert herself, had been urging her to do what she wanted to do. They had argued about what Mo should say to Dr. Campo.
At one point, while defending her acquiescence to beginning the radiation treatments, Mo had exclaimed, "But it seems so important to him, Emily!" Hearing her own words, she had looked sheepishly at her daughter, shook her head, and smiled slightly. Her expression admitted she would ultimately have to do what she thought was right. "I'm the one who's dying, after all," she softly chuckled.
In preparing to meet Mo and reviewing her chart, I was struck by two notes written just before she was discharged. The consulting neurologist summarized her condition and concluded: "Prognosis is abysmal." But his last progress note included the entry: "Patient cheerful. Has decided against further treatment."
My visit with Mo was at the house that she, and now Emily, occupied in a neighborhood of duplexes with carports, small lawns, and broad-limbed maple trees. Her home was sparsely furnished, with area rugs over hardwood floors and a few simple pieces of Scandinavian-style furniture. Mo's penchant for order and simplicity was apparent. Most of the walls were bare; centered on one wall was a colorful God's eye, a remnant of Emily's counterculture days, I suspected. A chair in the corner of the living room, however, was selected for comfort as well as function. Large, upholstered, and pink, it reclined or contracted to help the occupant lie down or stand up. This was Mo's throne. On both sides of it were tables stacked with note cards and stationery, and behind it, underneath the window, was a full bookshelf. She spent most of her waking hours here, writing thank-you notes or watching the hang gliders who soared in the summer skies over Mount Sentinel. At her side was a schedule book to manage the daily flow of visiting friends.
Petite, white-haired, and perky, Mo presented her medical history succinctly, in a businesslike manner, the way an intern might present a case to an attending physician. "The pain began as a tingling sensation--at times it burned--in the thumb and index finger; that's the C7 and C8 nerves," she explained. We reviewed the various medications she was taking: Tegretol to prevent seizures, Decadron to reduce swelling around the tumor, Lortab to treat her pain. She reported little current discomfort, except for a stiff neck and feeling like "a board is pressing on my shoulder." Not only was her appetite healthy, but she was enjoying regular splurges; probably a side-effect of the Decadron, I thought. At one point during our conversation she said, "When you visit again I'd be most grateful if you would stop by the Dairy Queen up the street and pick me up a Nut Whip. Of course, I'll reimburse you. They're awfully good--my days just aren't complete without a Nut Whip!" Mo had let me know that I was OK, one of the people she would like to have come around. I felt honored.
When I broached the subject of the limited time left to her, she expressed a unique sadness.
"I'm a bit disappointed that I'm still alive or not sicker," she declared. "When I found out about this astrocytoma, I was glad it was this great big tumor rather than some dinky little polyp that was going to get me. I've said my goodbyes, my life is in order, the kids are taken care of. Actually," she reflected, "I've been ready for a while."
Her high-spirited conviction took me aback, and I wondered whether the Decadron was also causing a touch of mania. I asked Emily, who was pregnantly propped on the edge of the couch, "Does your mother's attitude shock you?"
"Oh, no," she laughed. "That's normal for Mom! Nothing by half-measures and no regrets."
Still, I wondered whether it was totally true. "I gather that you're due soon," I commented.
She beamed. "Yup, at the end of August. We're going to have a little girl."
"Perhaps you would like to record or write down some of the stories from your youth," I suggested to Mo, "for your new granddaughter and other grandchildren. You might enjoy telling the stories, and I am sure your family would love to have them."
Mo frowned. "I don't think so. It would be nice if I'm still here when the baby is born, but if not, so be it. I don't think a tedious account of `the old days' would be of much interest to her or anyone else. As I said earlier, Dr. Byock, I've had a wonderful, full life, and if I died right now, there'd be no regrets or loose ends."
We talked about the timing of her passing. I explained that if her symptoms ever reached the point where the quality of her life was untenable, she could selectively choose to stop taking her Decadron medication, and probably hasten her demise. By reducing the tumor swelling, the Decadron was providing Mo with a relative plateau of function and comfort; its withdrawal would result in a steeper angle of decline. I emphasized again, for them both to hear, that under no circumstances would I or the hospice team allow her to suffer physically.
Patients often exhibit an uncanny control over the timing of their death. The basic time frame seems to be fixed by the primary diagnosis and the patient's general constitution, but a person may consciously or unconsciously decide to stay alive for an anniversary, Christmas, or another special holiday, or to complete an important relationship. In my experience, one person may live weeks or months beyond initial expectations in order to accomplish such a goal, while another with a similar condition may die suddenly during a period of apparent medical stability after an important occasion has passed. If anyone could exert this kind of control, it would be Mo. Yet she denied any such motivation. I probed a bit, wondering about the upcoming birth of her new granddaughter, and hoping her conviction to die quickly was not a facade that obscured deeper reservations.
After talking for at least an hour, Mo said she was tired and wanted to take a nap. I rose to leave; Emily helped her mother from her chair and readied the walker. We said goodbye, I gave her arm a gentle squeeze, and then I stood aside.
As they shuffled toward the bedroom, Mo told her daughter, "Now, I just want to make one stop. I need to fold that towel and put it in the linen closet."
"All right, Mom, but just one," Emily replied. They paused at the hall closet, and Emily casually stuffed the towel into the cupboard.
"Dear, not that way! Folded." Mo affectionately swatted her daughter. "Now, one second. I need to move that vase--it doesn't belong there."
Emily snorted in amusement. "OK, just one more detour, then you're really taking a nap!" I quietly slipped out the kitchen door.
Despite the doctor's prediction and Mo's desire to "go out like gangbusters," she lived through June and July and well into August. I visited twice a month, mostly to check on how she was doing, adjust medications, and continue our ongoing discussion of her preferences regarding one detail or another of the treatment plan. On a visit in late July, I met Mo's newly arrived granddaughter, Lindsey. Emily took me into the baby's room; Lindsey cooed and gurgled as I stroked her downy newborn hair. It was an usually hot August; a small fan whirred over the crib and swung the mobile suspended above it, mesmerizing the baby.
"How's your mom doing? She must be very happy to meet her new granddaughter," I ventured.
"Oh, definitely. She can't do much, but she loves just holding her, and rocking her with her cane." Emily replied. She looked tired. Given the dual responsibilities of caring for a newborn and an ailing mother, she was no doubt running on adrenaline. The brothers who lived locally, Bill and Bud, came over in the evenings to relieve her, and the Seattle siblings, Jason and Greg, drove over to visit and help out on the weekends, but the bulk of the care still fell to this exceptional young mother.
"I'm surprised she's done as well as she has for as long as she has," I said. "Do you think the thought of Lindsey was keeping her going?"
"You know, we never really talked about it after that first discussion with you. She's been very accepting of whatever's going on, living one day at a time. If Lindsey's birth was a motivation, it wasn't a big one. She isn’t the type of person to set herself up for disappointment. It wouldn't be in Mom's nature to say, `I want to live until the baby comes.'" Emily spoke without sentiment, but I could not help wondering whether little Lindsey would add a new note of sadness in Mo's dying.
Emily picked up her cherubic daughter and joined Mo in the living room. The curtains were drawn to keep the room cool, and the air was still, with a faint smell of talcum. Gall Kerscher, the hospice nurse, had just finished changing Mo's urinary catheter and was tidying. Physically, Mo's appearance had changed since I had seen her just two weeks earlier; her face was more edematous, having puffed up from the medications. Her clothes, once neat and tucked in, now tended toward oversize smocks and casual shirts. But she was still ensconced in her pink throne, looking cheerful and comfortable, if slightly sweaty. Wisps of white hair were matted against her temples. I gave her a small hug and sat down beside her. Emily put Lindsey in a rocking crib on the other side of Mo, then disappeared into the kitchen. Mo gave her granddaughter a brief, tender glance, then smiled at me.
"Gorgeous, isn't she," she declared.
"Yup, sure is. A little doll." I paused. "How are you doing?"
"Oh, not bad. Better now that Gail's changed that confounded catheter," she said.
Mo had lost control of her bladder and required a catheter to stay dry, but she had enough residual sensation in the area to be bothered by annoying catheter irritation. While these plumbing problems had begun before her first hospitalization, they had been aggravated in the hospital when an X-ray technician had inadvertently pulled on the tubing of her urine bag in transferring her from her wheelchair to the radiology table and nearly yanked the catheter out. For days afterward her urine had been tinged orange, and she had intermittent discomfort from bladder spasms. The nurses changed her catheter several times in an attempt to quell the symptoms--procedures that, for someone as modest and particular about her appearance as Mo, were surely upsetting, I thought.
"I'm sorry you're still having so much trouble with all this. Do you need any more supplies, like the soothing gel, or those B&O suppositories?" I asked, referring to some of the things that had recently been helping.
"You'll have to ask Emily. She's in charge of that kind of thing." She chuckled to herself. "Whenever she changes Lindsey, I'm next, no matter who's around. I might as well be walking around the house with no clothes on!"
I shook my head in amazement. Out of necessity, Mo had shed her modesty as one might set aside a favorite wool coat for the spring. Emily served us a cup of herbal tea, and we talked about the new baby. After a time, Mo asked me to look out the window; she pointed to a hang glider high above Mt. Sentinel and told me she had read about one who had sailed all the way to Bozeman. As I prepared to leave, Mo's sister, Ruth, arrived. An older, sterner version of Mo, wearing a long, shapeless skirt, starched blouse, and a small cross pendant, Ruth was a nun. She visited Mo every day. A weekly churchgoer and active parishioner, Mo nevertheless was quiet about her religious beliefs. She never spoke of spiritual matters, and I never saw any of the usual signs of Catholicism--crosses, rosaries, prayer books--around the house. We exchanged greetings, and Emily showed me out as Ruth sat down and, while speaking to Mo, deftly extracted a rosary from her bag.
Emily and I stood next to my car for a few moments in the hot, dry sun.
"I usually slip out when Ruth shows up," Emily said. "Oh?" I said neutrally.
"Yeah, I'm not much for church things. My brothers and I did the whole bit growing up--Catholic schools, catechism, Sunday school--but none of us stayed in the church. I guess I'm an agnostic now." She pushed her blond hair off her forehead and squinted into the sun.
"How does your mom take that? Do you think it bothers her that you and your brothers are not more Catholic?" I asked.
"Nah. Mom's amazing. She never said a thing when I stopped going to church. I've got my own ideas of faith and spiritual matters, which have a lot to do with nature and the land, and Mom knows this and it's fine with her. She really respects that I have my own beliefs. Mom's own spirituality is strong. She's not threatened by my brothers and me making our own choices--she doesn't need our agreement to boost her own faith," Emily softly boasted. I got into the car and she waved goodbye.
Two weeks later Emily telephoned me, sounding worried. Reflecting on her confidence and competence, I knew that something serious must have happened. She explained that for days Mo had been sleeping a lot more and feeling lousy. She was bothered by headaches, which were not severe but were interfering with her ability to sit up and enjoy visiting. At times they lasted for hours, despite the current pain medicine, and they made her so dizzy that she could not stand up. Her vision was so blurry that she could not read or watch television, and over the last week her appetite had diminished to nil. Mo was not complaining, but Emily felt that I should see her and become more actively involved. Before I could ask Emily what she thought might be causing these changes, she told me that the previous week Dr. Campo had cut the Decadron dosage in half and was recommending that Mo be put in a nursing home for twenty-four-hour care. I was surprised, because the Decadron was a critical component of her current medical care.
"You know Mom. Always taking care of everybody. She'd do it for his sake. She'll do whatever her physician wants," she said, her voice full of frustration. "And Dr. Campo, he doesn't see my mom, he's just thinking that it will be easier for him. He only sees a medical situation, not a person."
I told Emily that I would come by later in the day and talk to her mother and, perhaps, adjust her medications. Mo was napping when I arrived. Emily, Bill, and Bud were in the kitchen doing dishes and talking quietly. The house smelled of tomato sauce and garlic. I sat at a faded Formica table under the window as they puttered.
"Do you think the tumor's growing?" Bill asked, as he dried the plates Emily handed him. "She's been good for so long, like a remission. Maybe it's started to grow again. We were going to eat out on the patio tonight. Mom loves to sit outside, but she couldn't get that far. She's really weak."
"Very possibly. These things can move in fits and spurts, with long periods of stability, then rampant growth. It also may be the smaller dose of Decadron," I replied. "Cause and effect are a little jumbled, but your mother certainly can steer the course of events here to some extent. Going back up on the Decadron dose might well buy some more time. Like the decision about chemotherapy, the medication and retirement home questions are up to her, and you. This is a personal decision for her and your family to make"
Bud, who was sitting on the other side of the table, chimed in. "Retirement home?! No way, Dr. Byock. We all think it's a stupid idea, and Dr. Campo only suggested it because he feels guilty over not diagnosing her sooner. Mom's staying right here."
"Would it help if she went back up on the Decadron?" Bud asked, as if to pin me down.
"It might. We'd have to see."
As if on cue, Mo called from the bedroom, and we all trooped in to see her. Curled up on her right side, she looked pale and frail, and had clearly lost weight. She was wearing a lightweight housecoat with a V-neck; it revealed the walnut-sized washable tattoos that Mary had given her of Betty Boop, hands on tilted hips, winking. Her room was minimally furnished and clear of clutter. A vase of orange marigolds decorated the dresser.
"Gee, Dr. Ira, what does a girl have to do to get a little attention around here?" she teased, and coquettishly batted her eyelashes.
"Just whistle, and I'll come running," I retorted.
She puckered up, but no sound came. "Oh, well," she sighed, "there goes another one of my talents out the window." I noticed she went back to chewing, and that the ever-present gum now helped to keep her mouth moist.
"Mom, we think you should reconsider your medication," Bud offered, as he sat on the edge of her bed and indicated a side chair for me. He was not a large man, but he had a strong, square face and bright blue eyes. He was an attorney in town and spoke with authority. Emily had left the room to see to Lindsey, and Bud leaned against the doorjamb.
Mo looked toward me for an answer. "According to your chart, Dr. Campo has halved your Decadron, and as I mentioned before, it can have a noticeable impact on how you feel," I said. "Tell me, Mo, how do you feel you are doing? How's the quality of your life these days?"
At first, she looked at me with the most somber expression I'd ever seen on her face. She appeared almost suddenly ill and older than I'd previously noticed. "I've been feeling pretty crappy these last couple of days. My head has started to ache, even to lift it, and I've been sick to my stomach unless I lie very still." She was quiet for a moment, and then looked up at me. Her eyes twinkled. "I have a good life visiting with my friends and being around my children and watching little Lindsey. Yes, I have a good life,” she said.
"I know the subject of a nursing home and radiation treatment have been raised. Are these things you want to do?" I tested. Emily had returned, but she hung back, possibly keeping an ear open for sounds of Lindsey.
"I don't want more treatment, Dr. Ira. I don't have much interest in dragging this out, and it seems to me that any new treatment would do that. The nursing home is another matter. I'm enough of a burden for these kids. I've already lived far beyond my time." Mo smiled at her three children, and I noticed a small line of tears rolling down her cheeks.
"Oh, Mom, don't say that!" Emily exclaimed.
"You all must be very tired of helping me to the bathroom and changing this confounded pee bag and cleaning up after me." Her voice trailed off, and for the first time, I saw Mo overcome with tears. Her children swarmed around her like bees protecting their queen, each reassuring her. I wanted to speak, but this was not the time; I waited until a look from Emily invited my help.
"Mo, I know you hate being a burden to your children." I spoke to the whole family. "I know you don't like being unable to do things for yourself. But in fact they need to care for you, for their own sake. They need to do it for their own grieving. This is an important part of how we grieve the loss of those we love. This is something you can give them, letting them take care of you. They love you very much, and want to do this. They need to do this."
"He's right, Mom," Bud said. "This is something we want to do. We love you, and we need to take care of you," he emphasized, picking up on my cue. "Think of all the years you wiped our noses and bandaged our scrapes and tucked us in. What's a couple of tubes and a little pee between friends? This way you can see how well you raised us! It's our turn, please." His is voice trailed off.
"Yeah," Bill added. "And I'll make sure you get a Nut Whip every day!" We all burst out laughing, though Mo was still teary.
"You are dear children," she said sweetly, "but you have your own lives and your own children. You can't be always running over here to fuss over me.”
"Mother!" Emily protested. "We want to be here. Really, nothing would make us happier. If you went to a nursing home, we'd be miserable, worrying about you all day, and having to take shifts to be with you there. I love living here with you. This has been the greatest summer of my life, the best time we've ever had together. Please, stop arguing. Let us be your children, let us love you."
Mo's assent was a simple smile and a steady stream of tears, as she and her children gazed lovingly at each other. They had decided to push on. "What a privilege to be here!" I thought, and I was aware that my own eyes were full. I wondered what the family must think of this doctor in their midst, as I wiped away tears with the back of my hand. For the moment, Mo's life seemed too rich to let it slip away. We revisited the options, I encouraged her to let me boost her Decadron and adjust her pain and nausea medications, and she readily agreed.
With these changes, Mo's condition temporarily improved; her discomfort diminished and her vision cleared. She again began to enjoy her days--and for several weeks the simple pleasures of visiting, answering letters with Emily's help, and holding Lindsey. In late September she again began to deteriorate significantly. The numbness in her left arm had graduated to nearly total paralysis on that side. She was wheelchair-bound and beset by dull, nuisance headaches. The weather was still warm enough, but she was now unable to sit outside under the spreading maple tree. Although her appetite was now nil, she still relished her daily spoonfuls of ice cream and other treats and regularly sipped juice or herbal tea. She was losing weight rapidly and sleeping much of the time.
When I stopped by the house on a Saturday morning, Mo was sleeping, and Emily nursed Lindsey while we talked. Emily's husband, Dean, who came down from Glacier Park every weekend, was outside changing the oil in their car. The sky was deep blue; it was a crystal clear day, and the living room was washed in sunlight. The metallic sound of Dean's wrench clanging inside the car could be heard. Also visiting were two harpists from the Chalice of Repose program at St. Patrick's Hospital. Trained to play for seriously ill patients and their families, they were here at hospice's request and with Mo's consent. The Chalice music is deeply soothing to many people who are anxious or distraught, and is always a gift of beauty. Its almost ethereal quality makes you understand why angels are often depicted playing harps.
Not wanting to interrupt, I stood at the door and listened until the harpists had completed their musical vigil.
"She's been sleeping a lot, but when she's awake, she seems pretty content," Emily explained. "She's cheerful and she smiles often, but she hasn't been saying much. You know, it reminds me of some of our Christmas mornings as a family. When we were kids, she was always Mom--in charge, organizing meals, and saying when we could open our packages. But as we got older she played less of the role of the parent, and more of just being there with us. She kind of stepped back into the background and just enjoyed watching us have a good time."
The memory of those times choked her up for a moment; she cleared her throat and continued. "She's stepping back now, too. At times, Mom seems detached and stares off into space, as if she's not here."
"That's not uncommon," I said. "It's like she's letting go of worldly attachments and focusing on someplace beyond."
Emily looked uncertain. "But every now and then, she perks up. This morning she woke up and announced she really wanted a cheeseburger with fries and a beer! And a Nut Whip, of course! It was wonderful. I've never seen Bud move so fast for the Dairy Queen!"
"Was she able to eat much of it?" I asked.
"Only a couple of bites, but she enjoyed them,” she said.
"Emily, can you give me an idea of just how many hours a day she's sleeping?" I was trying to get a more complete picture of Mo's current status.
"At least fourteen or even eighteen hours for the last three days or so. At times it's hard to say whether she's actually sleeping. When she is awake she seems truly happy, as if she is gently floating. I thought she slept through the Chalice music, but she was just resting, and I saw in her eyes that she really liked it. She's awake now. I know she wants to see you."
Mo was in bed, curled up on her right side. She looked tiny and white, a wisp of a woman. It is a paradox of dying that a person can seem to grow strikingly in the realms of spirit and of soul as her physical self dramatically shrinks. I sat in the chair beside her bed; after three or four minutes, she opened her eyes. The Chalice harpists were quietly putting away their instruments. When I next turned around, they had left.
"Hi, Mo, you don't need to talk," I said softly. "I just wanted to come by and make sure you're all right."
She opened her eyes, which were still clear and brilliant. They seemed to be emanating light. We gazed into each other's eyes, and as she gave me a smile, her eyes teared up, and so did mine. She was radiant! I was half-crying and half-laughing in wonderment at this marvelous lady.
"Are you OK in there?" I asked, knowing the answer.
For a moment, she seemed to concentrate, as if grasping for the right answer. She began working her tongue and mouth. I wondered what she was trying to say. Her mouth opened, and there on the tip of her tongue was a small pink wad of gum! Mo still had her gum, and this was her way of letting me know that she was still "in there." While her body was barely alive, her spirit was strong and soaring.
I stayed for only twenty or thirty minutes. As I walked down the hall from Mo's room, I noticed a picture frame with a display of her collection of favorite sayings. I paused to read them, and one stuck with me: "Every death is a door opening on Creation's mystery." Mo was moving toward the mystery, and I knew she was well and unafraid.
Gail telephoned me later that afternoon. Mo had died fifteen minutes earlier, with Emily and Bill by her bedside. About an hour before she died, her breathing had become labored, each cycle a loud rattle and wheeze. I had ordered that a small amount of morphine be on hand for just such a purpose, and it promptly provided comfort. She rested, her breathing eased. Emily had just wiped her brow with a cool washcloth when Mo turned her head and quietly expired.
As much as any patient I have known, Mo personified the possibility of a joy within the process of letting go, transcending this world, and growing into an unexplored, spiritual realm. At the end of life, Mo had "self-actualized," to use Abraham Maslow's term, having mastered critical landmarks within the interpersonal, intrapersonal and transpersonal--or transcendent--realms of the self. She seemed to have achieved a sense of meaning about her own life and an inexpressible sense of meaning or profound appreciation about life in general.
A person dying may or may not use religious terms to describe this type of experience, but may speak of feelings of inner expansion and a connection to a whole that is elemental and absolute. Of course, for many people it is natural to describe themselves as feeling closer to God. These are not deathbed conversions; this deepened sense of connection typically occurs within the tradition in which one has been raised or has practiced. Emotionally, the person letting go of all that is worldly may feel exhilaration or a deep, still serenity. Outwardly, she may be joyful and, to the extent that strength allows, engaging. Or she may appear to withdraw, paying less attention to conversation and showing less interest in visiting, even with her closest loved ones. During this time a person may be quiet for long periods and, when asked, answer that she is in no pain or discomfort.
To family, as well as to caregivers who are unfamiliar with terminal care, people who have begun to focus on internal processes and concerns beyond their immediate world may appear confused. A person may seem to be watching or listening, and speaking, to others who died years earlier. These others, whom family and caregivers cannot see or hear, may or may not be real in some absolute sense. But they are certainly real to the person. This phenomenon of "nearing death awareness" is not rare. It has been beautifully explored and explicated by two experienced hospice nurses, Maggie Callanan and Patricia Kelly, in their book Final Gifts.
The taskwork that underlies the transcendent landmarks involves developing a new sense of self, a transformation from worldly person into a new spiritual identity. One's old self, including the pain of personal loss, drops away as one's focus shifts to matters of the spirit. The only taskwork necessary here may be to acknowledge that one is "new" and that one's experienced identity is fluid, evolving in an ever more meaningful direction.
Although she only alluded to it on occasion, Mo was helped in her journey by prayer. Her faith and religious conviction provided a foundation of confidence for moving toward the unknown without fear, ultimately allowing her to let go even of the pangs of loss. Perhaps her sister's daily visits to say the rosary strengthened her even further.
Religious beliefs and formal prayer are not the only source of spiritual guidance for people. In a manner similar to "non-intercessory" prayer, practices such as meditation can help a person to center his swirling thoughts and calm his emotions. From this plane of peace, one can begin to explore the transcendent realm of self. While meditation tends to be associated with Eastern spirituality, meditative practices are found within every religious faith. During meditation, a person's mind is alert and attentive yet still, grasping at nothing. By cultivating this skill of pure awareness, a person can develop the perspective of a witness, counterbalancing the sense of being an unwilling actor--or victim--in life's drama. The contemplative practice of prayer or meditation can provide a place of safety and distance--not from, but within, the experience. This ability to remain centered and "well within oneself" in the middle of distraction, doubt, anxiety, and bodily discomfort is recognized by many cultures and religious traditions as being critical preparation for the transition from life.
In addition, a number of what have come to be called alternative or complementary therapies are resources for inner growth. Hatha yoga can serve a purpose similar to meditation, through the gentle practice of holding postures. A variety of massage therapies can provide moments of peace and generate positive physical memories to balance the pain of illness. Therapeutic touch is an increasingly accepted nursing technique that projects the therapeutic intent of the practitioner to help unblock and move energy within the patient.
Insight therapy, a general term for a variety of talking therapies, can often help a person explore her spiritual depths. Dreamwork, for instance, can uncover rich and valuable material from the field of the unconscious. Breath work, which may range from the ancient yogic practice of pranayama to Holotropic Breathing, recently developed by Dr. Stanislav Grof, can allow access to otherwise hidden domains of personal and transcendent experience.
Each of these disciplines has its enthusiasts. A person's culture, values, beliefs, and temperament will all have an influence on which, if any, practice will be helpful. All these techniques and therapies foster a sense of composure and openness-- "vulnerability" is perhaps a better word--despite the fact that lack of control is a dominant characteristic of dying. By relaxing body and mind, a person can become more open to the mystery that awaits: what a poet has called "the close and holy darkness.” This tender vulnerability seems a prerequisite for the deepest tasks of inner development.
Death is the cosmic bell whose ring we hear, ever so faintly, even at the beginning of life. As its peal begins to ache in our ears and rattle our chest, how hard it must be to stay open! In my clinical work with people who are dying, I find that some form of contemplative practice is invaluable, if not essential, for myself as well. At some level of clinical care and counseling with dying persons, it is not what I do but rather how I am with a person that seems to matter most. In order to interact authentically and naturally with a dying person, while providing a space within which she can say--or not say--whatever she needs to, I, too, must cultivate some distance, not from, but within, the experience of impending mortality.
Of the various techniques just mentioned, I have direct familiarity only with meditation. For me, meditation is the quintessential practice in achieving comfort with chaos. Some days there is nothing so chaotic as sitting quietly and watching my mind--not following a particular train of thought or achieving any tangible goal, just watching and staying open.
Art is a natural expression and evocation of the deeper self that for many people provides another important source of guidance within the transcendent or spiritual aspects of life. "Good art" is good because it exposes and successfully conveys a valuable perspective or insight. Whether it is visual, theatrical, or musical, high art resonates within the viewer or listener. In being receptive to artistic works or expression, a person opens up and exposes a deeper self. Music can also evoke a sense of expansion and an experience of connection that, at times, gives rise to exhilaration. At its best, music can stir the spirit and soul, drawing the listener into a sense of connection that the composer or performers experienced at its creation. Similarly, participatory chants such as Hindu kirtan and Sufi singing and dancing invite direct experience of the transcendent.
In Missoula, the Chalice of Repose program provides musical guidance for a number of patients at this most critical time. The Chalice program is based on the work of Therese Schroeder-Sheker, a virtuoso harpist, vocalist, and accomplished medieval scholar, who has ministered at the bedside of dying persons for over two decades, offering gifts of profound, audible beauty and transcendent serenity. The clinical services of Chalice workers have become a valuable component of the care we provide for patients who are agitated or experiencing a pervasive sense of "dis-ease." We offer Chalice services for patients who we sense would benefit from a gift of beauty.
Doctors often seem unsettled by transcendent experiences and tend to regard them with some suspicion. A physician might not believe that Mo's ethereal state was real and might seek to explain it in terms of medications and metabolism. He might see her euphoria as a "toxic state" and thus discount it. Anyone who has been in the presence of someone in a state like Mo's knows that the question of whether or not the experience is "real" is irrelevant. Transcendence may well elude medical authentication. So what? Real or imagined, no one can deny the legitimacy and enormous value of euphoria for the patient who experiences it, and for the person's family.
At the edge of the transcendent--in the midst of "letting go"--a person who has completed the work of development does not disintegrate in dying. Rather, she dissolves out of life, becoming increasingly ephemeral--less dense or corporeal--but no less integrated, in the passage from life. Personhood becomes gauzy and translucent. Having completed and released the various realms and spheres of his or her previous self, the person who is surrendering to the transcendent is little more than the process itself. "Letting go" is all that is left.
Work on the realms of spirit and soul is, of course, influenced by one's culture, religious tradition, family life, philosophical perspective, and life experiences, but it is inherently intimate and deeply personal. In this last phase, as a person grows on out of life, there may be little for the family members or caregivers of a dying patient to contribute. Sometimes the best we can do is simply acknowledge the importance of the process, encouraging and protecting it by explaining the process to others whose own grief might interfere with the inner work of the dying person.
Maureen Riley's transcendence was surely aided by the way she had lived her life. Living well throughout her adult life provided invaluable preparation for dying well. Raising six children by herself, she chose early on to communicate fully and clearly with her children and friends. While nurturing her family, she did not neglect her inner self, her independence, and her identity as someone more than Mother of Six or Bargain Corner Volunteer. Mo was as complete a person as I have ever known. In dying, this completeness gave her freedom to let go of her self and grow on into pure spirit. [217-239]
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