Wait, Did They Say Hospice 2

She arrived with a canvas bag, a blood pressure cuff, and the good tissues — the soft kind with the lotion built in. Patricia Osei had knocked on eight hundred doors just like this one. In Episode 2 of Wait, Did They Say Hospice?, hospice stops being a word and becomes a woman standing on Delores's porch.

Transcript

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Welcome back to Take Care Time, the tells and the exhales of caregivers. I'm your host, Beverly Nance. Last week, we met Dolores. We met her from inside her casket, which I realize is not the most conventional place to be in a friendship. But Dolores is not a conventional woman. She gardens aggressively. She has two daughters who are everything she needed them to be and nothing she expected. And she has a lot of thoughts she never got around to saying out loud while she had the chance. She is fixing that now. We left off in her kitchen, watching Hannah make the first call to the hospice agency, watching her daughter's pen move across the notepad the way she always did, peeling an orange she had no intention of eating, thinking about all the Thursdays that would never again be chemo days. Today, the woman from that phone call arrives, and nothing about her is what any of them expected I wanna say something before we get back to Dolores, because I've been thinking about this all week. There is a moment, and I think many of you know exactly the moment I'm describing, when something that felt abstract suddenly becomes concrete. When the word stops being a concept and starts being a person standing at your front door with a bag over her shoulder and a kind expression and the particular patience of someone who has knocked on this kind of door many, many times before. That moment changes everything, not because the situation is different than it was before she knocked, but because she now has a face Her name was Patricia, Patricia Osei. She was sixty-one years old, though Dolores would tell Helen later that she could have been anywhere between fifty and a hundred and ten because there are people in this world whose age is less than a number than a quality. A particular depth of presence that only comes with having sat with a great deal of human experience and let it settle rather than harden. Patricia had been a hospice nurse for twenty-three years. Before that, she had been an oncology nurse for eight. Before that, she did pediatric care for four. She had, by her own estimation, offered the specific kind of companionship she offered Dolores's family on that Thursday morning to somewhere in the neighborhood of eight hundred families over the course of her career. Eight hundred families who had heard the word. Eight hundred front doors. Eight hundred moments when the abstract became concrete. She carried a bag, a canvas bag, over her left shoulder. A blood pressure cuff, a tablet in a blue case, and tucked into the front pocket of her bag, a small package of good tissues. Not the scratchy institutional kind that come in boxes designed to be unobtrusive, but the soft kind with the lotion built in. The kind you buy for yourself when you know you're going to need them. Hannah noticed the tissues. She didn't say anything about them, but she noticed I wanna tell you something about that living room. I have lived in this house for nineteen years. I had painted the walls twice. The first time, a color was called warm linen, which looked nothing like warm linen, and the second time, the color was called antique white, which was functionally identical to the first color, but which the paint store assured me was entirely different. The couch had been reupholstered once after the cat we no longer had destroyed the original fabric with what I can only describe as creative intent The coffee table had a ring from a coffee cup I set down in 1987 without a coaster Which I had spent three subsequent decades pointing out to guests so they would understand it was historical rather than careless. I knew every inch of that room, and sitting in it with a hospice nurse made it feel, for the first time in nineteen years, like a room I had never been in before. Patricia sat across from me with the unhurried quality of someone who had never once rushed a conversation that mattered. She had a way of settling into a space, not taking it over, not shrinking in it either, just settling. That made the room feel like it was the right size for what was about to happen. "Before I ask you anything," Patricia said, setting her tablet aside for a moment, I want you to know that I am not here with a checklist. I am here to meet Dolores." She looked at me when she said it. Not at Hannah, not at Helen. She looked at me. I cannot explain even now from here what that did to something in my chest, because I had spent the previous two years being spoken about in the third person. In an enormous number of medical settings referred to as the patient, as the case, as the woman in room four, as the mother. And here was this woman with soft tissues in her front pocket who had come specifically to meet me. I liked her immediately. I did not tell her that, obviously, but I thought it very loudly in her direction Hannah had a binder. Of course she did. It was a three-inch three-ring binder in the shade of burgundy. That she had chosen, I was certain, because it was professional-looking without being aggressively corporate, which was entirely consistent with the way Hannah approached every situation that required both competence and sensitivity. Inside the binder were tabbed sections. I knew that because she had shown it to me the previous evening, going through each section with the focused energy of someone who has converted anxiety into organization, which had always been Hannah's particular superpower. Tab one was medical history, my diagnosis, the timeline of treatment, the names and the contact information for every physician who had ever touched my case in the previous two years, their specialties, their direct lines, and this is the part that made me genuinely emotional when I saw it, a one-page summary she had written herself in plain language because Hannah had decided that no medical professional should have to piece together my story into fragmented records when a human being who loved me could simply tell them. Tab two, current medications, every prescription, every dose, every schedule with a highlighted note indicating which ones have been adjusted in the last thirty days. Tab three, questions. There were fourteen of them. They were numbered. With space after each for the answers. Patricia looked at the binder the way I imagine experienced teachers look at a student who has not only done the reading but annotated it and prepared supplementary materials with a kind of warm, unsurprised respect. "You have questions," Patricia said. "Fourteen," Hannah said. Patricia smiled. This is the second most I've ever encountered at a first visit." Hannah's pen was already hovering. "What was the most?" "Twenty-seven," Patricia said. "A retired attorney. He had a spreadsheet." There was a pause, and then, to my enormous and somewhat surprised delight, Hannah laughed. A real laugh. Not her controlled professional laugh, the actual one. I had not heard it in weeks. Patricia worked through the intake with a rhythm that felt less like a medical process and more like a conversation that happened to collect certain kinds of information along the way. She asked me about my pain levels, current, typical, worse, and listened to my answers the way doctors sometimes forget to, which is to say she waited until I had actually finished before she spoke. She asked about sleep, about appetite, about what mattered to me most in a given day. That last question caught me off guard. I sat with it for a moment. What mattered to me most in a given day? "Hmm. The garden," I said. "In the morning before it gets too hot." Patricia wrote that down, not as a data point, as something worth knowing. "We will make sure," she said, that you get into the garden in the morning." Helen, sitting beside me, made a small sound that was not quite a word. Patricia looked at her. This is what this is for," Patricia said quietly. "Not just the medical piece, the living piece." And that was the moment. If I'm being honest from inside this box that I understood for the first time what hospice actually was, not what the brochure said, not what Hannah's fourteen questions were trying to clarify, not what the word had always meant to me from the safe distance of other people's lives, the living piece I wanna step back here the way I sometimes do when I need to understand something that the story alone cannot carry. Because Patricia, when she said the living piece, was speaking from a tradition that most of us know nothing about until we need it, and I think you deserve to know where that tradition came from. The word hospice is old, older than most people realize. It comes from the Latin hospes, which means both host and guest, a duality that tells you something important about the philosophy embedded in the word. From the beginning, in medieval Europe, hospices were places of shelter maintained by religious orders for travelers, pilgrims, and the sick, those who were making a journey of one kind or another and needed a place to rest along the way. The connection between hospitality and the care of the dying is not coincidental. It is the original point. The modern hospice movement, as we understand it today, begins with a woman named Dame Cicely Saunders. She was born in England nineteen eighteen, came of age during the Second World War, trained as a nurse during a period of extraordinary medical demand and then something unusual. She went back to school twice, first to become a social worker, then in her mid-thirties to become a physician. She did it because she had to watch a patient die. His name was David Talsma. He was a Polish refugee, forty years old, dying of cancer in a London hospital in nineteen forty-eight. Cicely Saunders, then twenty-nine and working as a social worker, spent hours at his bedside. She listened to him. She sat with what he was going through in a way that went beyond clinical duty. David Tasman left her five hundred pounds in his will. He said, I will be a window in your home." That window became St. Christopher's Hospice, which opened in a suburb of London in nineteen sixty-seven. It was the world's first modern hospice, a place built on a radical idea, radical for its time anyway, that dying people deserved more than the management of physical symptoms. They deserved dignity, comfort, the presence of people who were not afraid to sit with them. Dame Cicely Saunders introduced the concept of total pain, the understanding that a dying person's suffering is not only physical, but emotional, social, spiritual, and that care which addresses only the body is incomplete care. The idea changed everything the hospice movement crossed the Atlantic because of a woman named Florence Wald. Florence was the dean of the Yale School of Nursing in the nineteen sixties, a position of significant institutional authority, and she was willing to set aside entirely when she heard Dame Cicely Saunders speak at Yale in nineteen sixty-three. Something happened to Florence Wald in that lecture that she described for the rest of her life as a reorientation. She took a sabbatical from Yale to work at St. Christopher's. She came back transformed. In nineteen seventy-four, Florence Wald and a group of colleagues opened their first hospice in the United States in Branford, Connecticut. It was a home care program, not a building, not an institution, a team of people who came to where the dying person was, the way Patricia came to where I was on a Thursday morning with soft tissues in her front pocket and no intention of rushing. The growth of that single program in Connecticut to a national system took approximately a decade, driven by advocates, physicians, nurses, and families who understood something the medical establishment was slow to acknowledge. That dying well is a form of living well, and it requires as much skill, attention, and resources as any other stage of human experience. In nineteen eighty-two, Congress created the Medical Hospice Benefit, which made this care accessible and largely covered for a vast majority of terminally ill Americans for the first time. That benefit has been expanded and refined since, but in its core promise has remained constant, that a person who is dying deserves a team of people Whose entire professional focus is on making whatever time remains as full and as comfortable and as dignified as possible. Patricia Osei was part of that team. She was, in the most direct and literal sense, the living expression of what David Tasma's five hundred pounds had set in motion seventy-some years earlier. I would have told her that if I had known it then. I like to think she already knew Helen made tea. This is worth noting because Helen making tea was not a neutral act in our family. Tea was Helen's response to emotional situations, and Tea was Helen's response to emotional situations the way Hannah's response was to reach for a pen. When Helen did not know what to do with herself, she went to the kitchen, she boiled water, she arranged cups on a tray with a care that had nothing to do with tea and everything to do with somewhere to put her hands. She came back with three mugs, mine, Patricia's, and Hannah's, and a plate of shortbread cookies she had bought specifically for this visit, which told me she had been thinking about this morning long before it arrived and had decided that the least she could do was make sure that there were shortbread cookies. Patricia took a cookie. She did not do it politely. She did it genuinely, the way you take a cookie when you actually want one. "Mm, these are good," she said. Helen looked at her with an expression I recognized. The particular relief of someone who has been trying to do something useful in an impossible situation and has finally received confirmation that the thing they did was received. I got them from a bakery on Elm," Helen said. "I know that bakery," Patricia said. "Their lemon ones are remarkable." And just like that, the three of us were talking about lemon cookies in the middle of a hospice intake evaluation in my living room with the coffee table ring from 1987 visible to everyone. And it was the most normal I had felt in weeks Hannah, to her enormous credit, waited until the cookie moment had fully resolved before opening the binder to question number one. Patricia answered all fourteen. Some of the answers were practical. The hospice team would include, in addition to Patricia as my primary nurse, a home health aide who would come three days a week to assist with bathing, dressing, and the kind of daily care that family members sometimes take out of love, but that can quietly overwhelm them if they are also trying to manage everything else. A social worker named Jerome who would call within the week, and whose job, Patricia explained, was to support the family, the whole family, not just the patient. A chaplain available on request, non-denominational, Whose purpose was less religious than it was simply human. Someone trained to sit with the questions that medicine cannot answer. A physician who oversaw the medical piece, and would be in regular contact with Dr. Okafor Equipment that would be delivered to the house. Medications for pain and comfort managed through hospice, covered under the benefit. A twenty-four-hour on-call line. Hannah wrote everything down. Some of Patricia's answers were harder. Like when Hannah asked about what the dying process typically looked like, that was question eleven, I noted. Which meant she had been building up to it for ten questions. Patricia answered with a kind of honesty that is only possible for someone who has found euphemism to be a form of kindness. She explained that every person's process is different, that some people decline gradually and some quickly, that there are signs as time goes on that she would help them recognize and understand so that nothing caught them by s-complete surprise. That her job was not to predict, but to prepare. Helen, at question eleven, excused herself to the kitchen. She came back three minutes later, with her eyes slightly red and a refilled cookie plate that no one asked for. Nobody said anything about it. Nobody needed to Patricia left two hours after she arrived. She had answered all fourteen questions, taken my vitals, reviewed my medications, explained the first week's schedule, and left behind a folder with her direct number and the on-call number, and a small printed card that simply said, "You are not alone in this." Hannah added the folder to the binder immediately without being asked behind tab four, which she had labeled Hospice Team with a sub-tab for contact information and another one for visit notes. I watched this happen and felt the particular complicated love of a mother who has spent decades marveling at the person she made. Helen watched Hannah add the folder to the binder. Then she said very quietly, "I do not know what I would do without you." And Hannah, who does not typically receive compliments gracefully, sat down the binder and hugged her sister for a very long time in my living room in front of the coffee table with a nineteen eighty-seven ring and did not say anything at all. I want to tell you something about that moment. I have been a mother for forty years. I have watched these two people navigate school, heartbreak, and career pivots, and the specific dignity of being sisters who love each other and therefore sometimes drive each other absolutely insane. And that hug in my living room on the day the hospice nurse came, was one of the finest things I've ever seen. I would have told them that. I should have told them that. I am telling you instead That evening, I sat in the garden. Hannah had carried out the chair, a good outdoor chair, the one with the cushion that had faded from terracotta to something closer to peach over four summers, and positioned it in the corner near the roses, which were, if I do say so, in spectacular form for the season. Helen brought out a blanket and tucked it around my legs in a way that was completely unnecessary given the temperature, but which I understood was not about warmth. They sat with me for a while. None of us talked about the mourning. We talked about the roses. We talked about the neighbor's new dog, a thing of enormous fluffiness that had been introducing itself to everyone on the street with what I would only describe as unearned confidence. We talked about a movie Helen had seen the week before that she described incorrectly but entertainingly as a thriller with a twist. We were three women in a garden at the end of a very large day, doing what families do, which is to say everything except talking directly about the thing that is happening while and talking about it entirely through everything else. And it was, if I'm honest, from this box, from this casket, one of the better evenings of the last several months. Back in the box. That is always how this goes. I drift into the memory and then find myself back here into this satin lining and Helen's perfume and the sound of my pastor, who has now cleared his throat with sufficient frequency, that he will almost certainly begin speaking at any moment. I have been thinking about what Patricia said, not about the medications or the schedule or the twenty-four-hour on-call line, about the living peace. Because here is what I understand now from in here that I was only beginning to understand in that living room on that Thursday morning. The living peace is not a euphemism. It is the point. Hospice is not about dying. It is about what you do with that time between the diagnosis and the dying, which is, depending on how you spend it, either a stretch of fear or a period of something much more surprising and much more worth having. Not joy necessarily, not peace, not always, but presence. Genuine, full-bodied, unmedicated by denial, presence in whatever time remains. The morning in the garden, the lemon cookies from the bakery on Elm, the sister hug in the living room, Hannah's binder, all of it was the living peace. All of it was what I had left. And I want to say to whoever's listening to this, whoever you are, wherever you are, whether you are a person in the chair waiting for the nurse to arrive or the one with the binder or the one who went to the kitchen to cry and came back with cookies, the living peace is yours. Nobody can take it from you. Not the diagnosis, not the word, not the conversation in the small room with the well-positioned tissues. As long as there is a garden and a good chair and someone who loves you enough to tuck a blanket around your legs on a warm evening for reasons that have nothing to do with temperature, you're still in it Next time on Wait. Did they say hospice? The hospice team begins to arrive. Jerome, the social worker, sits with Hannah in the kitchen and asks her something that nobody has thought to ask her yet. And Dolores, in her garden one morning before the heat arrives, has a conversation with Helen that she has been putting off for months. Some things need to be said before there is no time to say them. Next week, some of them get said. Before I let you go, I wanna mention the Take Care Time Respite Box. If this episode found you in the middle of your own hospice journey, whether you are Dolores in the chair, Hannah with the binder, or Helen who went to the kitchen to cry and came back with cookies, this box is for you. Not for when things get easier. Right now, while you're in it. The current Respite Box is available at takecaretime.com That's takecaretime.com. You deserve the soft tissues, the, the good kind with the lotion built in Have you had a Patricia, a person who came to your door and changed the temperature of the room simply by settling into it with patience and good tissues and fourteen questions worth of answers? Or were you the Hannah, the one who built the binder and asked the questions and held everything together because someone had to? Or the Helen in the kitchen, hands busy, heart full. I wanna hear from you. You can reach us and tell your story at podcast@takecaretime.com. That's podcast@takecaretime.com. Your story will be handled with care because none of us should navigate the living piece alone Please note that this episode features reenactments and dramatized details. While in most cases the exact verbatim dialogue may not be known, all dramatizations are grounded in thorough research and crafted to honor the stories shared. To respect the privacy and confidentiality of individuals involved, names and some identifying details have been changed. Until next week, take care.