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FINDING DIGNITY AMID DISEASE AND DISINTEGRATION:
WALLACE BURKE, JULIA ROSAUER, HAP VISSCHER
All the passages below are taken from Dr Ira Byock’s book, “Dying Well”, published in 1997.
For many people there is no worse pain, no greater suffering, than when they feel that they have lost their dignity. "I feel so undignified" is a constant refrain among terminally ill people whose personhood is being assaulted from all directions. A dying person may not be able to dress and feed himself or evacuate his bowels and bladder. One may be totally dependent on loved ones, even strangers, for daily care. One may slowly lose those pieces of one's identity that stemmed from one's reputation and self-image as a doer, an organizer, an achiever, or a nurturer. In dying, a person's sense of worth may wane as he or she can no longer fulfill roles and responsibilities as coworker, community member, or parent. Not only does one not contribute anymore, but one has become a burden to the very people one wants to serve. All that gave one's life meaning and dignity is being lost.
When I hear people refer to the indignity of dying as illness dissolves pieces of who the person was, I think of my father's passing and I become sad, and then annoyed. My father taught me that "you play the cards you've been dealt." My dad would rather have died quickly, even suddenly, yet that was not what God or fate had in store. Was my father undignified in his slow decline and dying? For me the answer is a loud no. Sy accepted dependency as an unpleasant but inescapable fact of his condition. He accepted the care he needed with grace and dignity.
Unfortunately, society reinforces the belief that the loss of normal capability and independence renders a person undignified. Our society reserves its highest accolades for youth, vigor, and self-control and accords them dignity, while their absence is thought to be undignified. The physical signs of disease or advanced age are considered personally degrading, and the body's deterioration, rather than being regarded as an unavoidable human process, becomes a source of embarrassment.
While dignity and personhood may be abstract notions, there is nothing abstract about what makes us feel personally valued and worthwhile. When we are active and healthy, we derive dignity from the things we do well and the qualities about ourselves that we value most. And regardless of where we find it, dignity is accompanied by respect for oneself and respect in the eyes of others. Can there be dignity when we can do little for ourselves and nothing for others? When all that we were has passed? It is a fact of the human condition that as we die we need care--is this inherently undignified? I think the answers lie in exploring our attitudes and assumptions about individual behavior and worth. Dignity needs to be accorded the remarkable achievements in personal growth that can occur while someone is dying. The waning phase of a person's life deserves to be a time of satisfaction and to stir feelings of self-esteem and self-worth.
Most people who are dying grapple with the question of how to maintain their dignity. While each person in the next three stories suffered a loss of dignity, each derived dignity from a different source and eventually reclaimed it in different ways. These stories are about people who were afflicted with progressive neurological diseases, because the twin extremes of indignity, from the perspective of both patient and family, are vividly reflected by advanced neuromuscular disease and by advanced dementia. When we think of family members or ourselves becoming ill, we tend to think that dementia or feeblemindedness would be the ultimate loss of dignity. However, for the person dying, the assault may be more acute when functional decline and dependence advances while intellect is preserved. A person with a disease such as amyotrophic lateral sclerosis or multiple sclerosis may feel undignified as the disease inexorably robs him of physical abilities and the capacity to care for himself, while leaving the awareness of his diminution intact. In contrast, by the time dementia, such as Alzheimer's disease, is far advanced, dignity no longer has meaning for the patient. Indignity is suffered vicariously by the person's relatives when their loved one is no longer the person they knew and when her behavior becomes at first childlike and, later, infantile.
For Wallace Burke, dying of ALS, dignity returned when he recognized that, despite the disease leaving him as helpless as a baby, he was contributing to his family and his community. Julia Rosauer, who had multiple sclerosis and a tenuous hold on self-respect throughout much of her life, found dignity when her sisters, children, and boyfriend recognized and expressed their love and respect for her, and thanked her for her years of selfless devotion. Hap Visscher's dignity arose from a strong, singular sense of self: he was a man who could make things work. When Hap felt incompetent and incapable, he felt undignified. His sense of worth and self-esteem were restored by taking on a task that added meaning to the final stage of his life. Even as Alzheimer's was erasing his memory, he could feel that his life had been worthwhile and that he was valued by his family and caregivers.
When I met Wallace Burke, he was petrified, in terror of a plate of scrambled eggs and toast. Although only sixty, he looked much older. He was pale and thin, and the skin around his jaw sagged. He was sitting up in bed, wearing blue striped pajamas, and trembling, with a fork in his hand. I do not think he heard me come in.
"Mr. Burke? Are you all right?" He was frozen, riveted on his breakfast. Almost reflexively I took his wrist and checked his pulse. He looked up and seemed relieved to have company; the distraction temporarily broke the spell of fear.
"Oh, hello," he said apologetically. His words were choppy and breathy. "Are you the doctor? I'm having a difficult time. Swallowing. I'm worried about choking. I don't want to choke to death," he said.
"Yes, Mr. Burke. I'm Dr. Byock. I understand that you have been having problems with choking. It's one of the things I want to talk with you about." I tried to reassure him that I would address his concern, hut I felt we needed to get acquainted first.
Beset by rapidly developing amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, Wallace was being robbed of all muscle strength, even the power to eat and clear his throat and protect his airway. Someone with advanced ALS can choke on anything, even soft foods or tiny bites. Eating for Mr. Burke was not the unconscious, pleasurable activity it used to be. By the time I met him, it probably felt more like tightrope walking.
Wallace Burke had been admitted into Missoula's new hospice house two days earlier. He had been transferred from a nursing home in Lewistown, four hours east of Missoula, and referred to hospice because he was steadily losing control over his bodily functions and would ultimately die from complications related to his disease. He had come to Missoula because his only son, Eric, his daughter-in-law, Jenny, and his grandchildren lived there. While they were unable to care for him in their small home, they were devoted to him and wanted him to be nearby.
I had met Eric Burke years ago when we had served together on the board of the local food bank. Though I had never met his father, I knew of him. Wallace Burke had been mayor of a small town and then a state legislator. He was known throughout Montana as a politician who fought hard to preserve funding for rural health care and education. Years earlier he had run for governor and been defeated in the primary. He had earned a reputation for being that rare politician, a public servant who was both tireless and quiet-spoken. When he retired, the Missoulian referred to him as "The Gentleman of the Front Range."
Just a year earlier, after he had retired from politics and was, as he put it, “perfecting my short game," he had developed an uncomfortable tingling in his hands. He was having trouble climbing stairs, reaching plates from the top shelf of the cupboard, and even turning the car ignition key. He felt a weakness in his legs that was spreading to his arms. His general health had always been good, although fifteen years earlier his doctor had told him that he had coronary artery disease and atrial fibrillation and had given him nitroglycerin to stem chest pain and Digoxin to control his heart rate. Initially, the tests in Lewistown were inconclusive, and his doctor had referred him to a neurologist in Great Falls. The ALS was definitively diagnosed by an electromyogram, which tests muscle contractions, just seven months before he came to hospice.
This disease usually does not move quite so fast, and its precipitous progress stunned Wallace Burke. In less than a month, he had lost control of his "golf hands" and found that he was too clumsy to write a letter or even sign a check. Long widowed and living alone in a house surrounded by wheat fields, he was soon forced by the disease to make changes. He researched his illness, contacted the ALS Society, and quizzed his doctor. Some of his questions were unanswerable: "How did I get this illness?" "How long have I had it?" "How long do I have?" He learned that his weakness would get worse and eventually render him immobile, and that he could do nothing to stem the tide. He asked his doctor in Lewistown how he would die and was told that people with ALS usually just "waste away" or die when they can no longer breathe on their own.
"I've looked forward to meeting you since Eric and Jenny told me you were coming. I know of your work in state government. For what it's worth, I have a lot of respect for what you've stood for and gotten done. It's nice to finally meet you, and it's a real privilege to have you here with us."
"Well, that's kind of you to say, Doctor. The people here have been so nice, and they seem to understand what I'm going through." All signs of his panic had vanished. I moved a chair from the corner of the room to his bedside, unobtrusively moving aside the stand with the offending plate of eggs. He continued, "Eric and Jen have been telling me about this place and I'm intrigued. I'd never heard about a hospice residence. They tell me it's the first one in Montana. Do other places have them?" The inflection of his voice told me that his curiosity was genuine. It also confirmed that his mind remained clear and he was still interested in social welfare.
"Yes, that's right. This is the first hospice facility in the state, and we're pretty proud of it. There are similar places in a number of larger cities around the country. In general, however, hospice in America is focused on helping people to stay at home and live out their days in familiar surroundings. Over the years we've found that it really isn't possible for some people to stay in their own homes. Sometimes they live alone and can't manage by
themselves, and there's no family close by to help out. Other times a person's husband or wife is too sick or frail to provide the care needed, or the care is too complicated or physically demanding. Sometimes the house or trailer is simply too small to accommodate a hospital bed or the equipment needed for home care. And, as you might imagine, in some families there is too much discord and dysfunction to make care at home work."
"Do most of your patients still manage to stay at home?"
"Oh, sure, most of our patients do well at home. At any given time, however, there has always been a small percentage of folks, maybe 10 or 15 percent, who are just unable to make it at home and have had to choose between a nursing home or, for some, even the hospital. We've needed a homelike alternative, and, thankfully, now we finally have one."
"How did you folks pay for this place?" I was struck again by his lucidity and his obvious continued fascination with social systems.
"Actually, the community paid for it, Mr. Burke. Like most hospice programs, ours is just getting by. Medicare, Medicaid, and most insurance companies pay for hospice care, but barely enough to meet expenses and not nearly enough to pay a mortgage. For us to operate a residence we knew it would have to be fully paid for before we moved in."
"How'd you do it?" he asked.
"Well, I might bore you with the details, or maybe not. You and I have some things in common. I've been a community organizer for years, mostly around hospice-related projects, though I've had the good sense never to run for office." I paused long enough for him to see my sidelong glance and to witness his smile in reaction to my friendly barb. "I've helped start several hospice programs in the places I've lived. This project--finding, purchasing and remodeling this house--took over a year and endless meetings and a formal capital campaign to accomplish. It wasn't easy, but it was fairly straightforward. Basically, we defined the problem and our need, presented a proposal to the community, and asked for help. The response has been very gratifying."
"Well, I am impressed, Dr. Byock."
This interaction set the tone of our friendship over the months to come. Despite all the tragedy that had befallen him and that lay ahead, he remained delightful and engaging. The formality of his use of my title seemed to extend from a lifelong habit; his manner was not at all starchy; instead, it was warm and already somehow familiar. I was always aware of his stature, and I often addressed him as Mayor Burke. The formality was feigned, but the respect was real. In return he often called me, with a sense of humor and in a gesture of professional respect, Dr. Byock.
A nurse's aide came in to remove his breakfast tray, and we repositioned Wallace in his bed and straightened his sheets. When she left, I returned to the questions of his declining health. Though I told him that I had reviewed his medical records and had spoken with his family, I asked him to relate the events of the last year from his perspective, and I listened as he detailed the personal effects of his illness and galloping disability.
"Can you imagine, me, a baseball fan all my life, now dying of Lou Gehrig's disease? It doesn't seem fair, does it?" he asked.
"No, it certainly doesn't seem fair. As I listen to your story, I can only begin to conceive how frightening it must be. When I came in today, you looked terrified."
"I was. Doctor, I am so afraid of choking to death."
"I can understand your concern, but I want you to know that we're aware and will do everything we can to prevent that from happening. For what it's worth, hospice patients I have known with ALS or similar conditions do not die by choking. It's far more common for people to die quite peacefully," I said.
“But what am I going to do? Some days I can hardly eat a bite without gagging."
"Does the choking happen only when you are eating?" I inquired.
"Yup, pretty much. It's like the food doesn't want to go down the right pipe."
As I pondered how to explore this subject with him, I glanced around the room. In the corner was an oxygen tank and a muted television tuned to ESPN. The dresser was crammed with framed photos of Eric, Jenny, and their children; an ornately framed wedding portrait of his wife radiantly posed atop steps draped with the train of her gown; and a yellowing picture of Mr. Burke in a uniform standing beside a tank. Well-thumbed sections of the Missoulian, the Great Falls Tribune and The New York Times Magazine were draped across a nightstand and chair. A couple of plaques with state seals hung on the walls alongside a child's crayon drawing.
Normally the option of consciously choosing not to eat is too delicate a subject to discuss on a first visit with a patient, but Wallace's candid fear invited an equally honest response. "Well, this may seem out of line but I'm going to ask you a naïve question. Why are you still eating?"
An impish grin came over his face. "I guess it's just become somewhat of a habit."
I laughed. "Yes, I'm pretty fond of eating myself!" I paused. "But seriously, do you find that you are hungry and look forward to eating during the day?"
"No, hell." He spoke slowly. "I haven't really been hungry for months. I've been eating because everyone encourages me to. I've been losing so much weight, I hoped I could get a little stronger. You know, Doctor, I have thought of refusing my medications. I talked about it with Eric--did he mention it? He said I should ask you."
"Yes, he did, and I've reviewed your medicine list. I don't think there's anything you're currently taking that is prolonging your life."
Before I could continue, he interjected, "What would happen if I stopped eating? Is it a painful way to go?"
"No, you don't have to eat. At some point in diseases like ALS, people find that it's impossible to eat normally. For a time they may be fed, but eventually even that may not suffice. Often people have feeding tubes inserted into their stomach and continue to be nourished that way. That's a legitimate option; not eating is, too. Whatever you choose to do should fit your goals. Really, only you can make this sort of decision. It's obviously a very serious, intimate decision. I don't want to encourage you one way or the other, but I think you need to know it's one place you still have control."
"I already told them, I mean the doctors at home, that I would never want to be fed by a tube. If I stopped eating, how long would it take? How long would I live?" he wondered. "Would it be painful?"
"No, it would not be painful. Over the years I have routinely asked people who stopped eating whether they were hungry, and the answer is always no. Hunger is almost never a problem for the patients we serve. Sometimes when we ask people if they're thirsty, they'll say yes, but when we moisten their mouth and throat and ask again, they say no. It's always hard to say how long someone is going to live, even in this situation. I don't think it would be long, perhaps two or three weeks. Probably less if you stop taking in fluids," I told him. "People usually become increasingly sleepy and gradually drift away peacefully, without any pain or other discomfort. Sometimes people develop a fever, probably from an infection, but we can usually bring the temperature down with medications and cool baths.
"Mr. Burke, whatever you decide about this, as long as you are here with us, we can help with any discomfort. I can't promise you exactly how or when you will die, but especially with you being here at the Hospice House, I can promise that we will not let you suffer."
He nodded solemnly, and we sat together quietly for a minute or two before I spoke again. "It's a lot to think about."
"Oh, that it is, Doctor. But I so appreciate you stopping by. This has helped me a great deal. Will you be coming back?"
"Absolutely. I'll look forward to it," I replied, adding, "I'm a regular around here."
I visited with Wallace for over an hour that first meeting. We agreed to let our conversation sit for a few days. In the weeks that followed I often dropped by to see him. Our visits might begin with small talk, discussing state or national news or the Montana Grizzlies' winning football season. Whenever it fit, I would ask him about his earlier days, eliciting stories about dry land ranching or Montana politics.
The Hospice House sits in the middle of an area west of Missoula that the settlers called Grass Valley. The fifteen-minute drive out of town always gives me a quiet, thoughtful time in the middle of the day. The rural road leading to Grass Valley passes hay fields, small cattle ranches, and an occasional cluster of tract homes. The house is a rambling ranch-style home with six bedrooms, a large living room, and an equally large family-style kitchen. My favorite feature is an expansive wooden deck that wraps around the back of the house and faces a split-rail fence, beyond which miles of open fields roll on in the distance. A favorite pastime for residents is sitting on the deck, even on the coldest days, bundled in blankets and watching hawks soar and hunt. Every now and then deer graze in the field and foxes appear.
One day Wallace was sitting in a wheelchair on the deck when I arrived. It was around four P.M.; charcoal-gray clouds were backlit by the bright setting sun. Beside him sat Eric, his son. He looked like a mountain man, with a full beard, thick brown hair, and his boots and a red-and-black lumber jacket; he shared his father’s hairline and square face. We shook hands. Shortly after I greeted them, he announced that he was leaving and promised his father he would be back the next day. I walked Eric to his car, and asked how he thought his father was doing.
"I think he's comfortable. He's weaker, though. I can see a change, even in the last ten days. It's good to have him here and be able to spend time with him. Emotionally, I think he's still having a hard time. He doesn't show it, though. He is still very much my dad, trying to figure it all out and come up with a rational solution. I left because I know he has some things he wants to talk with you about alone." As he drove off, I returned to the deck.
"Glad you stopped by," Wallace said, in a halting, strangled voice. He looked downcast, slumped in his chair, with a plaid wool blanket wrapped around his legs and torso; he was unable to sit up straight. I knew his lack of breath made it hard for him to string together long sentences.
"How are you doing today, Mr. Burke? Are you hurting anywhere?"
He thought for a moment. "No, it's not that." He hesitated.
"Shortness of breath?" He shook his head. "Tell me what's happening, if you can. Are you hurting inside?" I said, holding my hand to my chest. "Are you suffering?" His eyes grew heavier still, and he gazed toward the mountains.
"It's just that--I feel awful, such a burden. It all seems so undignified. So awful. The nurses, they have to, you know." I leaned closer as he looked at me to see if I understood what he was referring to. The disease had affected his bladder and his bowel function, and he was continually constipated. Although he had sensation, he had no diaphragm power to open the sphincter and push out a stool. So every couple of days the nurses had to manually disimpact him.
"I know it's hard for you--it would be really hard for me to accept, too. But to those of us who are caring for you, it's just part of what we do. I've disimpacted lots of people over the years, and it's just no big deal. Yet I know that when my time comes and I need to be disimpacted or otherwise cared for, it's going to feel lousy. I wish there was a way of making it easier for you." I was standing beside him; I now moved to the rail of the deck and faced him. "But I don't agree with you about one important thing. I do not think that you are the least bit undignified. Years ago when my father was dying, he told me that he felt embarrassed by his appearance and by being ill. It's something I've thought about a lot during my practice. So I think I understand how you feel, but from my point of view, you are just being human. You have this lousy disease and, unfortunately, you're dying, but you're just human. There is absolutely nothing in any of that to be embarrassed about." I paused to give him a chance to respond.
When he didn't, I kept going. "Most of the time I'm careful to speak only for myself, Mr. Burke, but I know the people I work with and can tell you that we all feel this way. You are no more of a burden to us than an infant or toddler is for their parents and caregivers. At the end of life, it sometimes just turns out that we need care like we did when we were very young.
"Think of it, Mr. Burke. An infant isn't undignified needing to be changed, and neither are you. You need help with eating and with your bowel movements. No big deal. You may think we are all a little loony, but we do this work because we want to. In fact, we consider it a genuine privilege to care for people at the end of their lives. You could not be undignified in my eyes or in the eyes of any of the people around here. People are inherently dignified, and they are only made undignified if they are placed in situations that are demeaning."
His eyes were slightly teary, but his expression was relaxed, and his mood seemed to have lifted. I tucked in around his legs a corner of the blanket that the wind had pulled loose. I sat down next to him again, watching swifts swoop after invisible insects in the early evening sky. Five minutes passed before he said anything. "Once again, you have given me a great deal to think about, Doctor. I sure do appreciate your visits."
For the time being, we left it at that. He asked me how I thought Eric was doing. I said, "Other than being understandably sad and worried about you, I think he is doing OK."
"I'm very proud of my son, you know. He's a great boy. He married a wonderful woman, and he's a good father to those kids. They tell me he's also a good geologist." Although speaking took effort, he continued to reminisce and told a story of Eric's earliest interest in rocks; when he was nine years old and the two of them were hunting upland birds, Eric had found a geode.
I suspect that Wallace Burke's feelings of being a burden were magnified by his life of public service. It was especially hard for him not to be contributing in some way. For most of his adult years he had been the helper, the caregiver. He had raised his son, managed the family ranch, and served the people of his city and state. Now the tables were turned, and it was a novel experience.
When I visited Wallace a few days later, he was in bed watching sports on television, but he pushed the off button on the remote control as soon as I walked in. Although he seemed weak and had his oxygen on, he was bright-eyed and eager to chat. I asked if he was comfortable.
"No, nothing is hurting." His voice was a coarse whisper. "I've decided. I want to get this over with. Nothing to extend my life. No more medication. Nothing to prolong my life." I gave him a quizzical look. His primary medication was digoxin to regulate the rhythm of his heart. According to his chart, he had gone off it once before and had experienced tachycardia--a racing heart, breathlessness, and chest pains.
"The only thing you're really taking, other than a small amount of pain medication, is the digoxin. As we've discussed, I don't think it's prolonging your life. It's for your comfort:"
"Well, Dr. Byock, I've also decided to stop eating. Not right away. I've still got a few things to do. But it's time for me to get out of the way. These resources can be used better elsewhere."
"Mr. Burke, unfortunately, it seems to me that you've been dealt some bad cards, and I can only imagine how hard it must be lying here and having things done for you and to you," I said.
"Yeah, it's horrible. Every day I feel a little bit more like a lame duck."
I chuckled to myself, wondering whether he was referring to his life on a ranch or in politics. "You know, the social responsibility that you have so well exemplified is not limited to doing things for others. Interactions just like this, caring and being cared for, are the way in which community is created. I believe that community, like the word family, is really more of a verb than a noun. Community comes about in the process of caring for those in need among us. It's unfortunate now that you're getting to see that side of it, but in allowing yourself to be cared for, and being a willing recipient of care, you're contributing in a remarkably valuable way to the community. In a real sense, we need to care for you. Not just those of us in
hospice, but the community we represent, the community that funds us and supports us." I was sitting on the edge of his bed, aware of the oxygen tube in his nose and his labored breathing. His eyes were clear, and he studied me.
“Community, huh?" he repeated.
I straightened a crimp in his oxygen tube. "Yeah, community, Mr. Burke. Just like you have been all your life, you're still at the heart of it."
Wallace Burke was a philosopher-politician through and through; someone who, I hoped, could be reached through reason. By my reframing the issue of dependency and arguing convincingly for the existence of responsibility and value at life's end, it was just possible that his suffering could be soothed. He was also a proper gentleman through and through. He tipped his head in a half-nod, and in the sad, soulful expression of his ryes I saw the wisdom of his years. "Doctor, you know how much I hate all this, but what you have said does make sense to me. I guess it's time to be on the receiving end." His words, very much in character, let me know I was on the right track.
"I hope it doesn't sound too syrupy or sentimental, but I'm going to say again what I really feel. It's a privilege and a pleasure to know you and to care for you, Mayor Burke," I rejoined. Nodding, he let me know he was, at last, able to accept this feeling and acknowledge the truth in it.
People who pride themselves on being doers and givers find illness and dependency something they are utterly unprepared for and, typically, they resist and protest. Surprisingly, however, with time and what I call "skilled listening," their resistance fades. For someone confined to bed with a rapidly deteriorating physical condition and increasing dependency, conversations about being a burden and the meaning of dignity, can have an immediate impact. To the person dying these are not idle philosophical musings. The conversation often picks up a stream of thought that is constantly on his mind and about which he has been thinking on a
moment-to-moment, hourly basis, turning it over in an almost obsessive fashion. When he hears a fresh insight or perspective, he tends to be immediately receptive.
This was the case with Wallace Burke. Our civics discussions proved to be exactly what he needed, or so he said. His mood continued to be bright, despite the racing pace of his illness. From his bed over the next two weeks he was busy. At my suggestion and with the hospice staff and volunteer’s encouragement, he recorded stories of his boyhood years. He attended his grandson Josh's eighth birthday celebration in the Hospice House living room and gave him a pocket watch his grandfather had given him. He even watched the World Series and was satisfied with the outcome.
A few weeks later, Wallace began leaving his meal tray untouched and limiting his fluids to chips of ice. The hospice nurses asked him if he wanted to eat, and when he slightly shook his head they took the tray away. Although he was offered food every day, he declined it, accepting only a spoonful of pudding from time to time. Eric and Jenny visited daily, sometimes accompanied by the kids, who, when he had the strength, regaled him with stories of school and their activities. Through it all he seemed content. He said he had no discomfort and was delighted that there were no more bowel movements to deal with. Gradually, over several days, he became lethargic and slipped into a coma. Eric was by his side much of the time, cooling his father's brow with a washcloth and moistening his lips with a swab. Mr. Burke never awoke; he died two and a half months after coming to the Hospice House.
I believe Wallace Burke gained a renewed sense of dignity in his passing when he shed his previous notion of dignity, which had been wrapped around physical independence and helping others. He came to understand that care for the frail and the dying is a vital part of the life of the community. By accepting his new role and acknowledging his continuing contributions to his family and community, Wallace Burke achieved a renewed sense of self-worth. Despite his physical dependence--and, in a sense, because of it--he retained his dignity.
Dignity for Julia Rosauer centered less on her physical ordeal than on her self-image, which had been battered throughout her life, first by her parents, then by a husband and boyfriend. In most of her relationships she had been the caretaker, and her self-effacing, obedient nature had allowed her to be exploited and ignored. Until she asserted herself and recognized her own accomplishments, Julia could never achieve a sense of dignity.
When she was admitted to the Sky View Nursing Home, a year before I met her, all she wanted was to die. Suffering from multiple sclerosis, she had been told by a neurologist that her nonfunctioning, neurogenic bladder could not he fixed and that her pain from chaotic, misfiring nerves might prove "uncontrollable." She was becoming increasingly crippled and needed full-time nursing care. When her body became so twisted that simple nodding was almost impossible, the nursing home asked our hospice to help; Stella Pomeroy, a hospice social worker, and I both visited her regularly.
Julia was in bed, her legs braced so she could lie on her back, a pillow propped between her knees to prevent pressure sores, when I first stopped by on a sunny April morning. She shared a room with a much older woman who was sleeping in the next bed. Julia was bony thin with prominent cheekbones and long, thick brown hair, which was lustrous and clean and pulled off her face with a barrette. She looked older than the sixty-two years noted on her chart.
I had barely introduced myself or asked about her pain when she grabbed the conversation. Because of her disease, the pace and volume of her speech jumped wildly as if a mischievous child was playing with the controls of a stereo. Nevertheless, she clearly was a chatterbox.
"Oh, it's too bad you weren't here earlier. You missed Eddie. He's my boyfriend--well, really, the man I live with. We've been together for years," she explained. But I knew that he visited only rarely. "He's really a sweetheart, and feels awful that he can't take care of me, but I understand. Heck, I wouldn't even take care of me if I had a choice! I mean, look. What a mess." She could not gesture with her hands or move her head more than an inch or so, but she could screw up her eyes to express disgust.
"I don't see such a mess, Julia, though I can certainly tell that your illness has taken a toll on your poor body. One thing it hasn't affected is your gorgeous hair," I retorted.
"Pfffttt." She let out a noise of dismissal, which I would get to know well. "Believe me, this bag of bones doesn't deserve the time of day. Anyhow, Dennis--he's my boy--is coming later. He visits all the time. But I worry about him. I don't think that wife of his is feeding him right. He looks thin; I think he's hitting the schnapps again." She sounded skilled at deflecting attention to herself and worrying about others.
Multiple Sclerosis is not usually fatal, and many of its victims live nearly normal life spans, though their mobility is severely curtailed and many are eventually confined to wheelchairs. In Julia's case, however, the illness would clearly be lethal, probably from the combined effects of malnutrition, recurrent infections of her urinary tract, or the bedsores that would never fully heal. Pain was another constant problem: spasms in her contorted muscles, achy pain in her joints, sharp jolts of electrical pain from her diseased nerves, and insistent urges to evacuate her renegade bowels and bladder.
Julia would have continued to chatter if I had not broken in. I asked her about the pain.
"Of course I have pain. Everywhere. It's a three. But when that hot wire hits, Jesus, that's off the chart. But you can't do anything about that." She used a one-to-ten pain scale to pinpoint her discomforts.
"Perhaps we can. I have reviewed your chart, and Dr. Blanchard asked me to manage your medications. Those electrical pains are awful and can be hard to treat. But we're going to try. With your permission I want to start you on a small dose of medication at night called amitriptyline. When we see how you are tolerating that, within a week or so, I would also like to prescribe an epilepsy medication. It'll take time to find out what's going to work best for you, but we'll keep at it."
"Damn, it sounds good to me that you're not giving up. Oh, and while you're at it, I was thinking, you know, I've got sores on my butt. Those aren't a three, they're getting over five. My butt hurts! And my heel hurts. And I hurt in my legs whenever they move me." As if to soften her complaining, she quickly added, "But I love my bath aide. She keeps me clean and smelling good. I wish she came more often." I wondered if the bath aide had also done her hair.
She let me examine her: The right heel clearly needed to be cleaned of infected tissue and dressed. The ulcer extended deep into fatty tissue and was getting larger, according to the notes in her chart, and would probably need repeated treatments. Julia did not seem to notice much pain as I probed, but she reacted to the rotten smell. "God, do I stink!" she declared.
I chuckled. "No worse than most people taking off their shoes!" She insisted that her odor was most foul.
The next time I visited Julia, she and her son Dennis were watching a movie in the television lounge. It was around five in the afternoon, and half a dozen other residents also sat in the lounge, waiting for dinner. Julia sat in a wheelchair, but her arms and legs jutted and twisted, making her perch look precarious. She cheerfully greeted me and introduced me to Dennis as "Dr. Ira" before launching into an explanation of how busy he had been lately with his carpentry work. Tall, beefy, and sullen, he appeared to be in his early thirties, though his behavior and posture were that of an arrogant teenager. He grunted when Julia introduced us and stayed riveted to the television.
Stella, who had made several social-work visits to Julia during the preceding weeks, thought she might be clinically depressed and had asked me to consider medication. I asked Julia if she would mind talking somewhere more quiet. She agreed, and I pushed her toward the sun room while Dennis stayed put, showing neither offense at being left nor curiosity about our conversation. We parked by a window and a rubber plant struggling to thrive in the institutional environment. The weather was rainy and gray, but the hills in the distance had a faint cast of green that signaled the coming of spring.
Many people assume that a terminal illness and depression are natural compatriots. They reason that depression is only logical, given the prognosis. This is not necessarily true. As a hospice physician, I frequently need to distinguish between normal grief reactions and clinical depression. While a person's sadness and depressed mood at the impending loss of all the things and people in her life may be intense, it usually can be treated with non-medical, supportive care and counseling. Clinical depression is not normal, and simple support will not suffice. There is nothing logical about clinical depression. Of course, while disability, discomfort, and a dismal prognosis can contribute to clinical depression, a person's susceptibility may have less to do with the immediate situation than with biology, heredity, temperament, and lifelong self-image and ways of relating to others.
For a few minutes Julia and I made small talk about the length of the gray Missoula winters and the elk she occasionally saw from the sun room as they grazed on the hills across the river from the nursing home.
"I don't know if you can separate what I am going to ask from your pain, but I'd like to get a sense of how you are feeling within yourself." The question How you are feeling within yourself? is something I learned during a hospice fellowship in England. Time after time, after a person’s physical discomfort had been assessed and "the bowels and bladder dealt with," I saw physicians and hospice nurses cut through layers of polite formality and awkwardness with the phrase. At times, the inquiry provoked open grieving and tears; at other times the response was a solemn and genuine reassurance that, despite the sadness, the patient was well within herself. I had never heard quite so succinct a way of getting to what seemed to be the heart of the matter, and I was impressed with how consistently the interaction resulted in feelings of deepened understanding and satisfaction for both patients and clinicians. I remember Julia's response well.
"It's like I'm being squeezed by giant hands. When I was a little girl, I used to think that big storms were really giants or God cleaning house and running the vacuum cleaner, and now these hands are twisting my body. I can't move. My back and gut ache so much, all the time, that I feel like a lump of sticky mud." She bobbed her head forward and whispered, as if to confide in me, "Actually, I feel like a lump of shit!"
I said nothing, knowing she intended to continue. "You saw on my chart that I don't want any antibiotics if I get an infection. You know, this life ain't worth living, that's for sure," she declared.
"I don't know you well, Julia. Only what I have learned in the last little while and what I can glean from your medical chart. I can't begin to imagine all the losses in your life. I noticed in your chart, for instance, that you were divorced and later widowed. Those are two very big losses in anyone's life."
"One loss, in my case," she retorted. "Well, two losses, one husband."
"Huh?" I was confused. "I thought you were married twice."
"Nope, just once. When Frederick left me, I divorced him. It was no big deal by that time. I mean, being married to him was the difficult part. He could be like a pit bull--sweet enough when he wasn't drinking, but when he was, pfftt, look out. He really did love me. But he was hard on me and hard on the kids. He had no patience for kids, anybody's kids. He'd snap and swat at them. Sometimes I got in the way and got swatted, too. I tried to make sure the kids all did what they were told, but he had a temper. Anyhow, when he got sick, I went to be with him. No one else was going to take care of him. And I was with him in the hospital when he died. Though we weren't married anymore, l sort of felt widowed.”
The family history in Julia's chart was sketchy and misleading, as with most other hospice patients, and the real story had to be fleshed out. The process was not strictly information-gathering, however. Conversation often builds a natural friendship and alliance. Listening is sometimes the most powerful therapy.
"When was this?"
"Years ago," she said vaguely, as if the event had been almost forgotten. "Conrad, the older one, was, let's see, in high school, probably around fourteen, and Dennis was still a boy, ten. The hard part was keeping on With Custom Log Cabins while raising the kids, trying to give them everything. I had to work weekends, at the hospital, an aide, cleaning and stuff."
Julia recited the details of her tragic story as if talking about someone else, having probably separated herself from the pain years ago. She described growing up in Darby, a small Montana logging town south of Missoula, the oldest daughter in a family of four. Their father worked as a lumberjack before he left the family, and their alcoholic mother drifted in and out. Julia had virtually raised her younger brother and sisters while her mother worked in a local bar. She sounded disembodied as she revealed the litany of losses: her brother, George, whom she loved dearly, had been killed by a land mine in Vietnam, and Conrad, despondent over a fractured love affair and in the throes of alcohol, had shot himself at twenty-six. When her ex-husband Frederick became ill with emphysema and miner's lung, she stretched herself even thinner, juggling a job, parenting, and nursing until his dying day.
In the same monotone she described her boyfriend, Eddie, who sounded to me so much like Frederick that at times I lost track of the sequence of the story. Eddie was a long-haul truck driver who drank too much, constantly philandered, and had been abusive. After living together for eight years, when her disease began to flare and every bout left her less able to care for him, he had begun complaining that he could not take responsibility for her and had finally insisted that she needed to be institutionalized.
At the time I met her, Julia had not been sleeping well for months. She was disturbed by intense dreams, almost hallucinations, of people complaining. The images in the dreams were grotesque, and her nights were often restless. Her feelings of paranoia sometimes lasted into daylight hours. A medical workup had showed no obvious physiological or metabolic reason for her agitation. As we tried to pinpoint the exact nature of her fears, she realized that these dreams frequently involved people from her past.
We talked about her stormy relationships. I found it painful to listen to the account of her life and contemplate her dismal situation, and I was secretly glad when the smell of macaroni and cheese from the dining room, followed by the arrival of nursing aides to take Julia to dinner, interrupted our visit. I asked the aides for a few more minutes with Julia and they promised to return soon. I was not quite done. Though I knew I was pressing Julia and that my questions made her uncomfortable, I was struck by her suffering, and I sensed that there might well be a way through it. If she was to find peace, she needed to resolve and complete old relationships.
I said, "It sounds to me that although Frederick and Conrad have died, your love for them, and sadness, and even anger, are still alive." She grew quiet and thoughtful. "Even though you understand Eddie and forgive him for placing you here, I suspect it still hurts. You've had more than your share of hardship and grief in your life. It seems that through it all, you've been the one to care for others, always the one who gave.
"Before I go, I want to give you an assignment that I want you to practice every day. It may seem silly, but give it a try. In a quiet time of the day, when you're alone, or at night when you're relaxed, lying in bed before sleep, close your eyes and say to yourself `I am not a bad person.' Imagine these words written on the rim of a large wheel that is slowly turning in front of you, and repeat them every time it goes round. I want you to do this for at least ten or fifteen minutes every day. OK?"
She rolled her eyes in playful agreement.
"As you're saying this, think about how the words make you feel. Just notice what thoughts come up as you repeat the sentence--the conversation it provokes inside you. Let it all just come and go and keep returning to the sentence `I am not a bad person.' Notice whether there's any change in your reactions over the week." I shook my finger in mock warning, imitating a stern music teacher. "I will be back next week to make sure you've been practicing!"
She gave me an embarrassed smile and cried in mock distress, "Help, he's torturing me!"
"And I should warn you, once you've finished this assignment, there's going to be another even tougher one. After you've mastered `I am not a bad person,' you graduate to `I am a good person.'"
"Oh, Dr. Ira! You're so demanding. I can't say that!" The drama was feigned, but the protests were real. I decided to maintain the good-natured banter while persisting in my efforts.
"Why not? Are you a bad person, after all? Really? Who have you killed this week?"
"No one, yet." She laughed as she delivered her warning.
"Listen, I know it feels funny. If it feels self-centered to say these things, even to yourself, well, that's the point. The fact is that you really are a good person, in fact an exceptionally loving, caring person. But, even though it's the truth, it's hard for you to accept, or more precisely, it's hard for you to feel. Like most of us, you weren't raised to feel good about yourself just for being who you are. One of the nurses I work with says that we were raised as human `doings' rather than human beings. So feeling good about yourself is going to take some time, and some practice. So I want you to try, even if it feels silly. OK?"
"For you, Dr. Ira, I'll give it a try."
"Thanks, Julia." I rose as the aides returned to take her to dinner. I helped them transfer her to the oversized adjustable wheelchair and arranged her hair over her shoulders. "I'll look forward to seeing you again, Julia. Thanks for your patience with me today and for your good work."
A week later I returned and was delighted when Julia reported that she had been practicing the drill and was feeling better "within myself." She rolled her eyes yet again when I told her I had another exercise for her to try, and she joshed, "Why am I not surprised?"
"This time, Julia, after taking a few moments to relax, perhaps by thinking about a time when you felt warm and loved and not squeezed, I want you to imagine someone who you have been close to in your life sitting in a chair across from you. It might be your father or mother, or your brother George, or Frederick, or Conrad, but only one person at a time. Imagine that you both know that this is your last chance to speak to each other. Really picture the person sitting there. Imagine how they look, what they are wearing, and the sound of their voice. This is a chance to say the things that matter most. If you are still angry at them, this is a safe time to tell them so; let them have it with both barrels. To the extent that you can, and want to, tell each person you forgive them for the hardship and pain that they caused you. You can also ask forgiveness whenever it fits. This is also a chance to say `I love you' and `goodbye.’"
This time she did not protest. I had the sense that she knew this was something she needed to do. I was drawing, here, on the strength of our relationship and her growing faith in me as a doctor. The work we were doing together was allowing her to begin feeling more whole and at peace within herself. We spent the next twenty minutes practicing the exercise. I asked her to imagine that I was Frederick and invited her to tell me whatever she felt needed to be said. Without a hint of awkwardness she told him about the pain he had caused her and, rather graphically, spit out her anger at him. Then she was able to express love for him and tenderly say goodbye once again. As we brought the session to an end, Julia was excited by the feeling of being unburdened and of satisfaction she felt and said she was eager to continue.
Although I only saw Julia for brief visits during the next month, I heard about her progress every week from Mary McCall, her nurse case manager, and Stella at the hospice team meeting. With their encouragement, she continued to express her feelings in a series of conversations with departed loved ones, and she found the experience liberating.
Julia's bad dreams ceased. She was physically comfortable as we gradually controlled her various pains with a combination of drugs. The meditative "I am not a bad person" training in self-worth and the "empty chair" imaginary conversations helped quiet Julia's critical inner voice and lighten her spirits. Most days she was cheerful, though she still had dark days when she repeated her wish to "just check out."
Over the months, Julia's multiple sclerosis invaded her eyes and slowly stole her vision. No longer able to watch television or play solitaire, she had only the radio and visits to occupy her days and her thoughts. Her general health continued to worsen from the effects of a perennial crop of bedsores and recurrent bladder infections, which she agreed to let us treat with antibiotics, to lessen the discomfort of the bladder spasms. Her crumpled body and contorted arms and legs would no longer permit her to sit in a wheelchair, and she became confined to bed. And she was wasting away, weighing probably less than a hundred pounds, even though she still loved the taste of vanilla milkshakes.
On one of my visits I met her sisters. They had made themselves comfortable on the edge of Julia's bed and in a side chair. Their ease with Julia suggested that they were regular visitors. But from their tones of voice, it sounded like I had walked into a bit of an argument. The youngest, Ingrid, a stout woman with rosy cheeks, was scolding her older sister.
"Nonsense. I don't know how you can talk that way, Jul. Look what you did for us. Isn't that right, Lindy?" Ingrid was looking to her other sister, Linda, a thinner version of herself with the same Scandinavian look and dyed blond hair, who was sitting in an armchair in the corner.
"Don't you remember the time we all thought we had polio, and we had to stay home for weeks? And every two hours you'd come and take our temperature. You were probably sicker than the rest of us, but you did all the cooking and doctoring." Linda explained for me, "It wasn't really polio. Just the flu, but no matter. Jul mothered us day and night. And wouldn't let us out of bed for anything!" The women guffawed.
"Yfftt. I don't know what you're talking about. I didn't do much. No one else was going to take care of you. I really didn't do much. I could hardly read the thermometer," she laughed. "I'd shake it before sticking it in your mouths, but I never knew why. I had just seen nurses do it."
“Jul, that's not true!" Ingrid exclaimed. "If it weren't for you, we'd ..: she looked to her sister to finish.
"We'd never graduated from high school! We'd never gotten out of Darby! We'd be skinny, broken-down cashiers with bad teeth and rotten husbands!" Linda testily spat out this testimonial, then smiled broadly. Her vehemence momentarily silenced everyone. Paged to attend to another problem at a patient's home across town, I excused myself and told Julia I would come back later.
When I returned late in the day, she filled in for me a little more of the family dynamics. As the oldest and most forbearing sister, Julia had virtually raised her siblings, making sure they were fed, clean, in school every day, and home every night. I gathered that she was a strict surrogate parent and as a result always thought of herself as the witchy, bossy sister rather than the fierce mother hen she probably was. Her disagreement with Ingrid and Linda was not the first; for months they had been chipping away at her denial of her sacrifice and importance in their young lives. She was a hard woman to thank. Her chattering self-deprecation was a powerful shield against positive emotions as well as pain.
In the last months and weeks of Julia's life, her sisters became her daily companions. We did not have to teach them about reminiscence; it just happened. Dennis, however, remained uncommunicative, visiting his mother infrequently and only as an obligation. Realizing that time was running short, I took an assertive tack and left a note for Dennis at the nursing home asking him to meet with me to discuss his mom. Although he had been ducking family meetings that Mary and Stella had had with Linda and Ingrid, this time he showed up.
Dennis was a young man who had never grown up. With Julia's unwitting help, he had become a self-absorbed man-child. She had doted on him throughout his life until she became physically unable to do so. Instead of appreciating all that she had done for him, he resented her for becoming disabled. When he had lived at home, Julia, along with her two jobs and constant household work, had ironed and mended his clothes and kept him looking crisp. With little effort on his part, he had enjoyed a middle-class lifestyle. Since he had been living on his own, his standard of living had fallen, despite a string of girlfriends, each of whom took care of him for awhile but were inevitably burned out by his lack of gratitude and irritable moods.
When Dennis arrived at Sky View for our meeting, I thanked him for taking the time to come and invited him to meet with me, Mary, and Stella in the conference room. Our preference would have been for Dennis to realize what needed to be done on his own, but sometimes a more direct approach is required. We did not intend to sit in judgement of his recent behavior toward her. Julia was the focus of this session, not her self-centered son, and we would do everything we could to ensure that she felt honored and complete before she died.
The multipurpose conference room was decorated in institutional calico and had a table large enough for fifteen people; it seemed cavernous and cold for our present purpose. We asked Dennis to tell us about his mom before she became ill. He described their home and said that his friends would always come to his house after school or on weekends. All his friends loved Julia. When one of his buddy's parents had divorced, he had moved in with them for two months. In revisiting their earlier years, Dennis grudgingly acknowledged his appreciation for all his mother had done.
Mary asked him if he knew that his mother was dying and that she would be gone very soon. He tried to hide the tears that collected in the corners of his eyes. "If you love her, Dennis, this is the time to tell her so," I said. "Your morn loves you so much. Her whole life has been built around others--you especially, and your welfare. Before she dies, it would be wonderful if you could tell her how much you love her and that she is appreciated."
Dennis studied his sneakers, but nodded in agreement. I felt like a middle-school principal having a stern talk with the school bully whom no one had confronted before. For most of his life, Dennis had been allowed to get away with his selfish, thoughtless behavior. I hoped that by acknowledging that he knew he'd been behaving badly, he could take a big step toward growing up. The meeting lasted about an hour. Before it ended, we helped Dennis rehearse what he would say to his mom. I told him that I appreciated his willingness to meet with us and respected the courage it took to say these sad things. In return, he thanked me for the help I had given his mom. Knowing that his "conversion" was shaky at best, Mary offered to accompany him to his mom's bedside to say all that he had rehearsed.
Mary colorfully described the scene for Sheila and me: "He said hi, and Julia answered with her typically bubbly `Oh, hi, Denny.' From her tone you'd have thought it was Christmas. Anyhow, he just stood there for a minute a bit stiffly but after a look from me launched the things he decided he most wanted to say. As I'd suggested, he started by naming his feelings.
"`Mom, it scares me to think that you're dying.' She just looked back at him with her big brown eyes, and he melted and started to cry. They ended up hugging each other, at least as much as Julia's arms allowed her to. The rest of his spiel came right from his heart--though I think he appreciated the rehearsal. He called her `Mommy' and told her she was the best mother in the world. And he told her he loved her--and if he ever had a little girl he was going to name her Julia." From that day until the day she died, Dennis came by more often and he stayed for longer periods of time.
A similar strategy with Eddie yielded more paltry results. During the months after hospice became involved in Julia's care, Eddie became increasingly scarce. Busy with his job and a new girlfriend, he rarely came by. Several times he arrived drunk and was loud and out of line with Julia, and the nursing home staff escorted him out the door. To Julia, of course, the idea of Eddie was more tangible than the reality of Eddie; to her, he was still the boyfriend she loved.
I decided to take a direct approach, as we had with Dennis. One afternoon I arranged to bump into Eddie at the Union Club, where, between his long-haul trips, he could often be found drinking beer and playing pool. The cafe in the rear of the Union Club, which makes some of the best sandwiches in town, provided the excuse for our "chance encounter." I told him that Julia was more comfortable physically than she had been months earlier, but that I expected her to die very soon. I added, "You know, Eddie, she still loves you a great deal. I think it would mean a lot to her to hear from you, one last time, that you care for her. Why don't you go by one morning and tell her you love her and will miss her." The only way I could have been more blunt would have been to specify "a morning, while you're still sober." He knew what I meant.
A few days later the nursing home staff reported that Eddie did show up in the morning, before leaving in his tractor-trailer for a cross-country trip. None of the hospice team was present, but Julia told Stella, "It was the best visit we had in years. He has his problems, but he really loves me, you know. And I'll always love him."
Julia died surrounded by Ingrid, Linda, Dennis, and two of her favorite nurses' aides. Family and staff had been paying homage to her for days. The sisters and, at times, Dennis, had continued to thank her for the sacrifices she had made for them over the years.
Two days after Julia Rosauer died, the nursing home staff had a memorial service for her, and the room was packed. People recounted stories from the nearly two years that Julia had lived there, and more than one staff member openly shed tears. When Julia died she was dearly loved by many people. Perhaps most importantly, she knew it.
No single diagnosis prompted Hapgood Visscher's referral to hospice. He was eighty-six years old and, despite the effects of early Alzheimer's disease, had been living with his wife, Hilda, until a heart attack had landed him in the hospital. Things had gone steadily downhill since then. He had become confused and frightened while in the ICU and required tranquilizers. After his heart attack he had frequent chest pain, made worse by any exertion. A coronary angiogram showed "extensive, diffuse three vessel disease," which meant that, particularly in light of his age and dementia, he was not a candidate for bypass surgery. With medication he improved enough over two weeks to be transferred to Heatherfield Nursing Home--to continue his cardiac rehabilitation, and because Hilda was too frail herself to care for him.
One day he suddenly complained of pain in his left leg, and a physical examination could not pick up a pulse in his left ankle or foot, which indicated a blood clot. Despite being given blood thinners, his circulation did not improve. His internist and a consulting surgeon felt that his heart might not withstand general anesthesia, but they explained to the couple that without a surgical amputation, he would eventually die of gangrene. He seemed to understand what was being said. With only a moment's discussion between them, he and Hilda decided not to have his leg removed, and he was referred to hospice.
When I heard about Hap, he had become a "management problem," in the language of nursing homes. He frequently became agitated, especially during the night and in the early morning hours, and had threatened nurses and attendants, yelling in German and shaking his fist. I was asked to help and possibly adjust his medications.
A tall, rangy man with a weathered complexion, large, hairy ears, and thick bushy eyebrows, Hap was a farmer and handyman who had led a robust, independent life. The son of hearty Austrian immigrants, he had grown up on a wheat farm in the Dakotas and acquired his own fields when he came to Montana more than fifty years ago. Dignity was as real to him as a claw hammer and came with the confidence of competence. He could perform any job around a farm or ranch and fix virtually anything that could break.
On the morning I met Hap, he was surprisingly clearheaded. Normally, according to his chart, he was pleasantly confused, at times thinking it was 1956 and he was still on the plains of eastern Montana. We were in the room he shared with an elderly stroke victim; just outside, finches and canaries fluttered and chirped in a closet-sized aviary. He had just had a bath, and his misbuttoned shirt, unshaven jaw, and remarkably full head of long gray hair gave him a truculent appearance. Instead of administering a formal mental status examination, I asked him about his life and times. While his thick accent made him hard to understand at first, he talked readily and lucidly about his daily routine in the nursing home and reminisced about the cold Dakota winters. He knew the names of all his children and seven grandchildren, and he remembered some of the toys he had made for them.
After we had become generally acquainted, I ventured a more serious question. "Mr. Visscher, may I call you Hap?" I asked, knowing that that was what the nursing home staff called him.
"Sure." He nodded.
"Hap, some of the staff has been frightened by your behavior lately. They say you get very angry. Can you tell me what that's all about?"
"Oh, that's nothing," he chuckled, waving his hand to brush away my concern. "I like to kid with them. I joke with them all the time."
"They don't always know you're joking, Hap. At times they are frightened by you."
His face darkened and he grew quiet, as if he'd been scolded. "Ya, sure. I'm sorry, Doctor. I would never hurt nobody." He paused and then looked up at me soulfully from beneath his gnarled brow. "Well, things are not good, here. Everything here is broken! Look at this thing," he said, shaking his bedside tray with his powerful hands. It was designed to move up and down, adjusting to the height of the bed, but it was stuck at its highest setting, making it impossible for him to use. "And that thing, too," he said, pointing to the wheelchair in the corner of his room that the attendants used to transport him to and from his bath and meals. "That wheel in the front there is no good. It's not good like that." He paused to see if I was as outraged as he. "If I was well, I could fix that!" he declared.
I nodded sympathetically "It must be very frustrating. It's hard to see something that is broken and know that if you were well and had your tools you could fix it. Feeling helpless is awful. Knowing how really talented you are at repairing things, it must be especially frustrating for you."
"You bet! Hilda's friends would bring me their busted lamps and things and I could fix them like that." He snapped his fingers. “Back home, they would all send for me to fix their big equipment, you know, like the threshers and the tractors. They paid me good, too. An old farmer friend of my dad's would say, `If Hap can't get it to work it's time to get a new one.'" He stopped speaking for the moment, and we listened to the whistles and chirps of the birds.
"You know, there is one important job you can still do." My words retrieved his attention. "I'll bet you have wonderful stories about growing up on a farm and your Austrian heritage. You need to share these stories with your children and grandchildren. You need to record them, so that when you're gone, years from now, they will know who you were and all the wonderful things you could do. No one else in the world can do this, Hap. Only you can tell these stories. This could be a wonderful gift for Visscher children for many generations to come. It is very important."
"I don't think so," he said morosely. "There is nothing left for me to do. I have no stories to tell. The kids don't want to hear them. It was different when I was a boy." He laughed, and then a look that I can only describe as mischief came into his eyes. "Sometimes when my folks and the relatives were telling stories we would sneak out, you know, and have a smoke in the fields. It was a different time, Doctor."
On a hunch, I asked him if he had ever gotten in trouble when he was a young man. This time he giggled, and he spoke so rapidly that his accent made me struggle to understand. "I remember when it was Halloween and my cousin Gus and I dressed up as scarecrows with just corn cobs. What a sight! When my father, he find out, we couldn't sit down for days!"
"And you say you have no stories to tell!" I exclaimed. "These stories may seem ordinary to you, Mr. Visscher, but they are treasures, and it would be an incredible gift to your family to preserve them. It's a job only you can do. If it's OK with you, I want to come back in a few days and help you start." He grunted agreeably and I left.
People of Hap's age and era are often reluctant to make tape recordings. I think it is the supposed formality of the process; they worry that they need to somehow prepare or dress up for it. I have learned to help them past the awkwardness rather than become discouraged too soon. Before leaving Heatherfield I called Mrs. Visscher, introduced myself by phone, and arranged to meet with her and Hap two days later.
Hap did not recognize me right away, but when I began to recount for his wife what he and I had talked about and mentioned details from the stories he had told, he brightened and called me "Doctor." She was a heavyset woman with a round face, totally white hair, and a warm manner. She seemed to instinctively understand the value of these stories and the task I was suggesting. I set up a cassette recorder and showed Hap that I was turning it on and that we were going to record our visit today. He grumbled once again, "I've got no stories to tell." But as soon as I asked, "Can you remember how you two met?" the tape recorder was forgotten and he chuckled and bubbled, telling me that Hilda "was the prettiest girl in the county. And I was the strongest young man." Another contagious chuckle, really a rumbling giggle. "Her father didn't like me too good, until I fixed his plow. Then he tell Hilda to have me come around."
"And I made him a pie." Mrs. Visscher joined in, only partially stifling a coquettish laugh.
A few minutes were still left on the cassette when our session ended. I labeled it, popped the plastic tab to protect it from being rerecorded, and explained to them what I was doing. "You have really created something of lasting value for all your family today. I'm going to ask Jim Parker, your hospice volunteer, to come by this week and help you make some more of these tapes." Hap didn't speak but he looked at me, smiled, and gave me a single nod of his head.
I knew that Hap and Jim had a budding friendship and that Jim had been helping with driving Mrs. Visscher to and from the nursing home several times a week, so coordinating their efforts would be no problem. Mrs. Visscher was delighted by the suggestion and thanked me repeatedly for spending time with them.
In the two visits I had with Hap, I developed the impression that the quality of his daily life still made his life worth preserving. While he was not the man he had been in his prime, he still enjoyed his days. Though his recent memory had succumbed to dementia, his long-term memory was unscathed. And the storytelling sessions accomplished what I had hoped. Reviewing his life seemed to help him achieve a sense of meaning and value about who he was. His agitation dissolved. He was not only peaceful, but once again good-humored and engaging. Within a week, when I asked the head nurse of his wing at Heatherfield how Hap was doing, she replied, "He seems much happier these days. I've not heard of any recent tantrums or agitation. Is he on a new antidepressant?" She added, "He's really such a sweet man."
In the weeks that passed, Hap's physical condition stabilized. His chest pains abated, and his left foot, having responded to routine dressings and modest doses of analgesic medication, withered and came to look almost mummified. I talked about it with Hap's internist, Alice Gregory; after consulting with a surgeon, we reasoned that he would probably survive an amputation below the knee if it was done under spinal anesthesia. Without the operation, it was only a matter of time before he developed a lethal infection in his lower leg. The amputation would make him more comfortable for whatever time he had left. Dr. Gregory and the surgeon met with Mrs. Visscher. The three of them spoke with Hap, though it is hard to know how much he comprehended. Hilda told me that when they asked him what he wanted, he said, "Do what you gotta do," and she felt he understood that he could die in surgery. "My Hap has never been afraid in his life. He is not afraid to die."
The surgery went well. After a single night in the hospital, Hap was back in his own room at Heatherfield. The wound where his left leg had been removed at the upper calf healed without problems, and within days of the surgery we began decreasing his pain medication.
Our hospice team stayed involved in Hap's care for the next month. Most of our attention was directed to Mrs. Visscher and their oldest daughter, Gretchen, who lived within an hour of Missoula. Mrs. Visscher could not manage Hap at home; since he had adjusted to the nursing home, they decided it was best for him to continue to live there. Though he was no longer dying, his future decline from Alzheimer's disease was inevitable, and we posed several questions for them to consider. "What would be his wishes, and your wishes, regarding treatment if he developed a pneumonia? Should antibiotic pills be given? If he didn't respond to those, should he be hospitalized? What would be his wishes regarding tube feedings if he became unable to cat normally?" They agreed that he would not want to be hospitalized or given antibiotic shots for pneumonia and they would not approve it. Although Mrs. Visscher knew that Hap would hate to be fed by a tube, she was uncomfortable with the thought of him "starving to death"; it brought up images from the depression that were hard for her to reconcile.
We also helped Mrs. Visscher and Gretchen relax their attempts to orient Hap to the present reality: person, place, and time. Explaining that his strengths now lay in the past, we encouraged them to visit with him in that context from time to time.
Over the next year and a half I visited Hap occasionally when I was seeing other patients at Heatherfield. One day I found him in his new, high-tech wheelchair in front of an open drawer of his low dresser, arranging and rearranging his socks, underwear, comb, and brush. He certainly looked better than before; he was shaved, his hair was combed, and he wore a clean shirt. When I asked him how he was doing, he answered that he was getting things together before the winter set in. "I'm gonna have to go, you know." When I asked him where he was going, he became annoyed, as if I should have known or had not been paying attention.
As his dementia progressed he was transferred to the Horizon Unit, which specializes in the care of confused patients. I saw Mrs. Visscher from time to time; while she was sad about the deterioration and then loss of the man she had lived with for sixty-two years, she felt strongly that he was being cared for in the best possible way. Jim Parker continued to visit with Hap and help with Mrs. Visscher's transportation. Hap's increasingly childlike demeanor and even the occasional outbursts of frustration were anticipated and provided for, in a unit accustomed to absorbing the strange and sometimes disruptive behavior of people afflicted with Alzheimer's and related dementias.
In early summer, Dr. Gregory again asked hospice to become formally involved; Hap was ignoring his food and had lost twelve pounds over the previous eight weeks. This time when we spoke with Mrs. Visscher about the various options, she listened carefully and asked questions that showed she had been thinking about the issues we had raised many months earlier. She was satisfied that he was comfortable, and she knew we would make certain he didn't suffer. Her decisions were clear. The nurses and attendants were to help him to eat but not force-feed him, and there would be no tubes and no antibiotics. "No, it is his time," she concluded.
Just before Labor Day, Hap developed a cough, followed by a high fever. Mrs. Visscher reiterated her instructions, no antibiotics, and the nurses administered Tylenol around the clock and bathed him as needed, keeping his mouth moist. As he died his wife and daughter were with him, and the lilting voices of the singers from the Chalice of Repose warmed the room. In a renewal of ancient traditions, the music and presence of the Chalice workers are offered to ease the passage of the person through this liminal state. Although dementia had stolen his mind, neither I nor anyone else who knew him believed that he ever lost his dignity.
Living, and dying, with a terminal illness frequently involves making critical decisions about life-prolonging therapy and medications. Patients and families often must decide about eating, taking fluids, receiving antibiotics, or being put on a ventilator or respirator. These decisions cannot be avoided. People can choose to ignore the issues, but in doing so they are making other decisions about the course of a terminal illness. Not infrequently, as in the following story of Janelle Haldeman, the decisions of dying may involve more than the family and the patient and may encompass a wide circle of friends, even an entire community. In the process of confronting these hard decisions, if the right questions are asked, surprising opportunities can be revealed.
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