Wait, Did They Say Hospice 3

Jerome, the social worker, arrived with no binder, no checklist, and one question nobody had thought to ask yet. Hannah. Who is taking care of you? In Episode 3 of Wait, Did They Say Hospice?, the furniture moves, the hospital bed arrives, and Delores watches her daughters do the most extraordinary ordinary thing she has ever seen.

Transcript

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Welcome back to Take Care Time, the tales and the exhales of caregivers. I'm your host, Beverly Nance. I have been thinking all week about furniture, which is not, I realize, the most obvious place to begin an episode about hospice. But hang on, stay with me. There is something about the physical rearrangement of a home that signals a shift in ways that conversations cannot. You can talk about a situation changing. You can prepare for it, document it, put it in a binder with tab sections as I do, as Helen does, as Hannah does. But the moment the furniture moves, the moment the familiar configuration of a room that has held the shape of a family's life for years is suddenly different, Something in the body registers that differently than the mind does. It is not a metaphor. It is the hospital bed in the living room. And today, Dolores has things to say about it But before we get to the furniture, we need to spend some time in the kitchen because something happened in that kitchen that I think every caregiver who has ever been the one holding things together, holding everything together needs to hear. Something that Jerome, the hospice social worker, said to Hannah, something that nobody had thought to say to her yet Jerome arrived early on Wednesday morning, nine days after Patricia's intake visit. He was younger than Hannah expected, mid-thirties maybe. He wore a light blue shirt with the sleeves rolled at the elbows and carried a soft-sided bag that looked more like something you'd take to a farmer's market than a clinical visit. He had the kind of face that people describe as open, not in a naive way, but in a way of someone who has made a deliberate decision not to let the weight of his work close him off. He shook hands with Hannah at the door. He shook hands with Helen, who was already tearing up slightly at the sight of anyone new arriving for official reasons, and then he turned to me. He did not shake my hand. He held it for a moment, just held it. No words, no clinical introduction, just a moment of contact that communicated without any other vocabulary of medicine and social work or institutional care that he understood something about where I was and that he was not afraid of it. I liked him almost as much as I had liked Patricia, which given my general suspicion of people who arrive at my house for professional purposes was saying something considerable. Jerome's approach to his work was different from Patricia's. Where Patricia was warm and thorough and answered fourteen questions with the practice efficiency of someone who had answered them eight hundred times before, Jerome moved more slowly. He asked more than he told. He paused more than he spoke. He sat with my daughters and me at the kitchen table for a while, doing what I can only describe as taking the temperature of the room. Not clinically, just humanly. Reading the specific dynamic of three women who had been managing something enormous together for two years, and who had, in the previous nine days, begun the process of learning to manage it differently. He asked me how I was doing. He asked Helen what was the hardest right now. Helen, who does not typically need much prompting to share what is hardest right now, talked for eleven minutes about the specific terror of waking up at three in the morning with her heart already racing before she was fully conscious, already reaching for the phone to check if there had been a call. Jerome nodded, not in the way that means I am waiting for you to finish. In the way that means I understand exactly what that three in the morning feels like because I have heard it described by more people that I can count, and it never stops being real. Then he turned to Hannah Hannah, who had been sitting with her coffee cup in both hands and her back very straight. Hannah, who had already opened the binder on the table in front of her with tab five already prepared, labeled Social Work, because Hannah prepares for every arrival before it arrives. Jerome looked at her for a moment, Then he asked something that nobody had asked her yet. Not Patricia, not Dr. Okafor, not Helen, who loved her completely, but had been too consumed by her own grief to think to ask. Not me, her own mother, who should have asked and had not, for reasons I'm still working out from in here. Jerome said very quietly, "Hannah, who is taking care of you?" Hannah did not answer right away. She looked at the binder, then she looked at Jerome, then she looked at me, and I watched something happen in my daughter's face that I had not seen since she was eleven years old and broke her arm falling out of the tree in the backyard and held it together all the way to the emergency room and only cried when the doctor told her that she had been very brave. She did not cry in the kitchen with Jerome. Hannah does not cry easily or quickly or in front of people she has only just met. But something released. Something that had been held at a particular tension for a very long time. She said, "I do not know the answer to that question." And Jerome said, "That is the most important answer you have given me." And here is the thing. I wanna stay with this for a moment because I think it is one of the most important things this series has to say. In every family navigating a serious illness, there is usually a Hannah. Not always a daughter. Sometimes it's a son, sometimes it's a spouse, sometimes a friend who has stepped into the role that nobody formally assigned, but that somebody clearly still needed to fill. The Hannah is the one with the binder, the one who knows the medication schedule, the physician's direct line, and the name of the on-call nurse, and which pharmacy has the best turnaround time on controlled substances, the one who makes the calls who attends the appointments and asks the fourteen questions and prepares tab five before Jerome has even arrived. The one who everyone in the family unconsciously relies on to manage the thing that cannot be managed, but must be managed anyway. And here is what nobody tells the Hannah. Managing is not the same as coping. The binder does not protect you from grief. It just gives you somewhere to put your hands while the grief waits patiently for the moment when your hands are not full Jerome spent the next hour doing something I had not seen anyone do with Hannah in my two years since my diagnosis. He asked her about her. Not her role, not her function, not what she was managing or organizing or planning. Her. Was she sleeping? Was she eating actual meals or the kind of eating that happens standing at the kitchen counter at eleven at night because you forgot that food was something you were supposed to be giving yourself? Did she have people outside of this situation who knew what she was carrying? Did she have anything that was just for her? Hannah answered all these questions with the same careful honesty. With the same careful honesty she brought to every question she was asked. Some of the answers were not good. Jerome did not pretend they were. He also did not panic about them or lecture her or produce a list of wellness resources in the manner of something checking a box. He said, What you're doing for your mother is extraordinary, and it is costing you things that you may not even be aware of yet. Part of my job is to make sure that when this is over, there is still a Hannah left." I had not thought about that from in here, from this box. I was thinking about it now. Now I am thinking that if I could have one conversation over again, one single conversation for the last two years of my life, it might be the one I did not have with my daughter, the one where I asked who was taking care of her Before Jerome left that morning, he walked through the house with Hannah to assess the equipment modifications. He was practiced and unobtrusive about it. He noted the bathroom situation. He noted the bedroom itself, and then he walked into the living room and stood for a moment, looking at the space with the particular assessment of someone Who had helped make a great many living rooms into something they were not originally built to be. He said, "There will likely come a point when a hospital bed in this space will make things significantly easier. It does not have to be now, but I want you to start thinking about it. I want you to start thinking about where it would go." Hannah looked at the living room, at the couch with the reupholstered cushions, at the coffee table with the ring from nineteen eighty-seven, and the chair where I had sat for nineteen years reading the Sunday paper and arguing with television news and doing crossword puzzle in pen because I had always done it in pen. By the window so she can see the garden and Jerome said, "That's exactly where I would put it." I wanna talk about caregiver invisible labor for a moment because I think what Jerome surfaced in that kitchen conversation with Hannah is something that the research of family caregiving has been documenting for decades, and that families themselves rarely name until someone like Jerome, someone with Jerome's particular skill sits down across from them and asks the right question. The term invisible labor refers to the work that is done consistently, often silently, usually by one person that makes everything else in a household or a caregiving situation function. It is the work that nobody sees precisely because when it is done well, nothing falls apart. The medication schedule that gets filled on time, the appointment reminders sent forty-eight hours in advance, the insurance calls that took forty-five minutes, and the resolved one item on the list of fourteen. The communication with the hospice team, the updates sent to extended family, the quiet research done at eleven at night to understand what a particular side effect means. None of this shows up anywhere. It is not in anyone's job description. It does not generate gratitude proportionate to its cost, not because the people around the Hannah do not love her, but because they cannot fully see what they are not doing. Studies on family caregiving consistently show that when one person assumes the primary management role in a caregiving situation, they are at significantly elevated risk for what researchers call caregiver burden, a constellation of physical, emotional, and social consequences that accumulate over time and that often do not become fully visible until the acute caregiving period ends. Meaning, Hannah might not fully feel the cost of what she has been carrying until the binder is no longer necessary, and that is the moment that needs the most support, not during, after. Jerome understands this. He was already preparing Hannah for it, which is, I think, one of the least visible and most valuable things a hospice social worker does. It was three days after Jerome's visit when Helen and I had the conversation. I want to be careful about how I tell this part because it is the most personal thing in this entire series. Not the diagnosis, not the hospice intake, not the hospital bed that had not yet arrived, but was already taking up space in the living room in a way that only I could see it in the shape of the furniture that would need to move. This, this conversation Helen and I had always been easy with each other in a particular way. We were the two emotional ones in a family that was otherwise between Hannah's logistics and my tendency to manage feelings by tending to Rose's, not especially fluent in direct expression. Helen and I talked about things. We always had, but there were things I had not said even to her, things I had been carrying in a specific private space that I think every dying person maintains, not to protect themselves, but to protect the people who love them from the full weight of what it is to know you are leaving It was early. The light was still that particular quality of soft gold that certain mornings have. The kind that makes even ordinary gardens look like something. Someone painted deliberately. My roses were doing what they always did in the morning, which is exactly nothing, in the most beautiful possible way. Helen came out with two cups of tea she had made strong, the way she always made it, and sat in the chair beside me. We did not say anything for a while. That was normal for us. Always been comfortable in the kind of silence that is not empty, but full. Then I said, "I wanna tell you some things." Helen said, "Okay." Just that, "okay." The way you say it when you have been waiting for something long enough, and in the arrival it is almost a relief. And I told her that I was not afraid. This surprised her. I could see it. Not because she thought I would be afraid, or should be afraid, but because she had been afraid on my behalf for too long, that she had perhaps started to assume the fear was mutual. I told her I was not afraid of the dying part. I was somewhat wary of the discomfort that might precede it. I had always had a complicated relationship with physical pain, which I managed by pretending it was less significant than it was. A strategy that has served me well for seventy-one years, and that I had no intention of abandoning now. But the actual dying part, I was not afraid of it. I had lived a full life. Not a perfect one. Not a life without regret or longing, or the particular grief of things left unfinished, but full. I had these two daughters, these two remarkable, entirely different, completely necessary daughters. One who remembers the sunscreen, and one who brings the cookies. And as long as they had each other, I felt unreasonably perhaps given that I would not be here to verify it like things were going to be all right helen cried. Of course she did. Not in a collapsed, overwhelmed way she sometimes cried. In a way that someone receiving something they needed and did not know how to ask for. She said, "I'm gonna miss you so much." "I know," I said. Then I said, "And I need you to promise me something." She said, "Anything." I said, "When this is over, and by this, I mean the immediate, acute, all-consuming part of this, I need you to take care of Hannah." Helen looked at me. I said, "Hannah is going to be fine during this part. She is built for this part, but after, when the binder is not necessary anymore, and the calls stop, and there is nothing left to manage, this is when Hannah is going to need you." Helen was quiet for a moment, then she said, "I always thought she was the strong one." I said, "She is." I said, "So are you." I said, "The strong ones need the most looking after when the thing they were strong for is finally over." Helen looked at her tea, then she looked at me. She said, "How do you know all of this?" I said, "I have been watching the two of you for forty years. I have been watching you your whole lives. A mother sees things." We stayed in the garden until the heat arrived. Then Hannah appeared at the back door with the sunscreen, which she handed to both of us without a word. Helen looked at the sunscreen, then she looked at me, and she started laughing. Not the surprised, caught-off-guard laugh from the doctor's office, the real one, the one that lives somewhere deep and comes up when something is so perfectly, painfully, exactly itself. But there is nothing left to do but laugh at it. Hannah stood in the doorway holding the sunscreen with the expression of someone who had been a subject of a joke they had not heard, and had decided this was perfectly fine. She was right. It was fine. Everything in that moment was exactly as it needed to be. The hospital bed arrived on Friday. Patricia had arranged it. Two men from the medical equipment company came with a large flat pack box on a dolly, and the particular professional cheerfulness of people whose job it requires them to be pleasant in circumstances where pleasant takes a certain type of deliberate effort. They came in and out in forty-five minutes. They assembled the bed by the window the way Hannah had said, so I could see the garden. They adjusted the height. They showed Hannah how to operate the controls. They were polite and efficient and completely businesslike about the whole thing. The way you need people to be when the thing they are delivering is something that everyone in the room is trying to absorb while also trying to appear as though they are absorbing it normally. When they left, the three of us stood in the living room and looked at the bed. None of us said anything for a while I wanna tell you something. I wanna tell you about what the room looked like from where I was standing, and I want to be honest about what I felt Because I think honestly, it is the only thing worth doing from inside the casket, and I have been doing my best to honor that. The bed was clean and white and entirely functional, and not at all what my living room was for. And my living room was for Sunday papers and television news I argued with and crossword puzzles in pen. It was for Christmas mornings where Hannah and Helen were small and a whole family descended and the room smelt like pine and coffee and a particular sweet chaos of too many people who loved each other. It was for dinner parties I used to give back when I gave dinner parties, when the furniture got pushed to the walls and people ate standing up with their wine glasses in their hand and the evening went on longer than anyone had planned. It was for nineteen years of ordinary living, and now it was this. And here's what I felt standing in that room looking at that bed. Not despair. Something more complicated than despair. Something that was grief and relief and gratitude and kind of a resigned affection for the absolute indignity of the human body and its existence on requiring care at both ends of life. Something that was okay. Not good. Not what I would have chosen, but okay. Because by the window, I could see the roses and the coffee table with the nineteen eighty-seven ring that had been moved to the other side of the room. Not taken away, just moved. Still there, still part of the room, just in a different place than it used to be Helen said, "We could get new curtains." Hannah looked at her. Helen said, "Not because anything is wrong with the current ones, just if we're going to rearrange, we might as well do it properly." Hannah considered this for a moment, with the focused seriousness she brought to all logistical matters. She said, "What color?" Helen said, "Something light, something that lets the garden in." Hannah said, "I'll look this weekend." And just like that, they were planning curtains in the living room that now had a hospital bed in it. With the same focused, collaborative energy they had always brought to every practical matter. If the best possible response to the arrival of something impossible to control was to take charge of one thing that they could, the curtains. I watched them, and I thought, "These two are going to be all right. Not right away, not easily, but eventually they are going to be all right." Back in the box, the curtains for what it was worth were beautiful. Helen chose them. A soft linen color of morning, she said. But Hannah pointed out it was not a color with an established definition, and Helen said that was the entire point. They hang in my living room now, letting the garden in. I wanna stay with something before we close today. There is a thing that happens in caregiving, in the hospice phase in particular, that nobody adequately prepares families for. The world does not stop. While you're in the middle of the most significant experience of your family's life, the mail continues to arrive, the neighbor's dog continues to introduce himself with unearned confidence, someone needs groceries, someone needs curtains. The ordinary machine of life keeps running, even when the person at the center of that life is doing something as extraordinary as dying. And caregivers are the ones keeping the machinery running, while also grieving, while also managing, while also sitting in kitchens with social workers and gardens with dying mothers and living rooms where the furniture has been rearranged to accommodate a bed that nobody wanted to need, all at the same time. What I understand now from this vantage point in this box, and all that it implies, is that caregivers who come through the experience intact, not unscathed, not unchanged, but intact, are the ones who found their version of the garden, their version of the thing that was just for them, their version of the Jerome question. Not someone else asking who is taking care of you, but themselves knowing the answer. Not someone who's asking who is taking care of you, but themselves knowing the answer. And maybe you are in your kitchen right now. Maybe someone is looking at you across the table, and asking a question that nobody has asked yet. Maybe you are the one with the binder. Maybe you are the one with the cookies. Maybe you are trying to figure out where the hospital bed goes while also trying to find curtains that let the garden in. Wherever you are, I see you, and I want you to know that furniture moves. It always moves, but the room is still yours Next time on Wait, Did They Say Hospice? This is the final episode of Dolores's story. The curtains are up, the garden is visible from the bed by the window, And Dolores, from her place in the casket, has one more thing she wants to say, not about dying, about what she got to keep and what she wants you to keep too. Before I let you go today, I wanna mention the Take Care Time Respite Box. If you are the Hannah in your family right now, the one holding the binder, managing the logistics, answering the questions before anyone thought to ask them, this box is for you. Not because you earned it through competence, because you are a person, not just a function, and people need something that is just for them. The current Respite Box is available at takecaretime.com. That's takecaretime.com. Jerome would want you to look Have you been the Hannah? Have you been the one who managed everything so well that nobody thought to ask you how you were doing? Or have you been the one who asked the Jerome in the room, who finally said the thing that everyone else has forgotten to ask? In a way that words have not quite managed to do. I wanna hear all about it. You can reach me at podcast@takecaretime.com. That's podcast@takecaretime.com. Your story will be received the way that Jerome received Hannah's, with patience and no rush and the understanding that I do not know what I have not asked, so I am asking 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.