Wait, Did They Say Hospice? 4

Delores has one more thing to say. And the pastor is only getting most the story right. In the finale of Wait, Did They Say Hospice?, we learn what she got to keep, what she left behind in three unexpected places, and why she wants you to know hospice was never about giving up.

Transcript

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Welcome back to Take Care Time, the tells and the exhales of caregivers. I'm your host, Beverly Nance. We have been in this together now for four weeks. Four weeks of Dolores, four weeks of Hannah and her binder and her straight back, And the laugh that is the real one when it finally arrives. Four weeks of Hannah and her cookies and her tea that was made too strong, and her willingness to cry at the appropriate moments, and also several inappropriate ones, with a consistency that I find admirable. Four weeks in a living room that became something it was never built to be, and four weeks of a woman narrating her own death from here inside her casket, with opinions and observations and a dry wit that I have come to love very much. Today is the last episode of Dolores's story, and I wanna tell you before we begin that it is not a sad ending, and it's not a happy one either, in a way that we usually mean, you know. It is something more specific and more true than either of those things, and it is an honest one. And Dolores, who spent the last four episodes finally saying everything she never said out loud, would not want anything less The funeral. The pastor has finally began speaking. It has taken him considerably longer than Dolores would have liked if she had been in a position to express preferences about the timing of her own eulogy, which she was not, you know, being deceased and all. But he has started, and Dolores, as she has been doing since the whole remarkable thing began, is laying here listening. His name is Pastor Williams. He had known Dolores for fourteen years, which she considered long enough for him to have formed a reasonably accurate picture of who she was, and which she now realized, listening from the box, had perhaps been optimistic. He began, as pastors often do, with the unassailable, Dolores was a devoted mother." Mm, that's true, Dolores thought. That's accurate. I will grant him that one. "She was a woman of deep faith," he continued. Dolores considered this. She was a woman of intermittent faith, she thought, which was perhaps the more honest version. A woman who prayed with genuine intention when things were going badly, And less consistently when things were going well. Which she suspected put her in the company of approximately ninety percent of the congregation currently sitting in front of this box. "She was," Pastor Williams said, "a woman who loved her garden." Hmm. Now we're getting somewhere, Dolores thought. She was a remarkable gardener. This was unambiguously true, and Dolores felt she could receive this without qualification. "Her roses," Pastor Williams said, "were known throughout the neighborhood." They were known, Dolores thought, because she had spent twenty-two years making them known, which was not quite the same as them having arrived in the world already notable. But, hmm, close enough. "She was a woman," Pastor Williams said, lowering his voice slightly in a way that signals something personal is coming, "who gave everything she had to the people she loved." And here Dolores paused because this one was not straightforwardly true and not straightforwardly false, and required more nuance than a funeral eulogy typically accommodated. She had given a great deal. She had also kept things. Things she should have said. Things she was only now, from in here, getting around to saying, which she supposed a kind of giving, just delayed The last good morning. I wanna go back one more time. I wanna go back to that last good morning. There is a particular quality to the last good morning, that you can only understand in retrospect. While you are in here, it simply feels like a morning, you know. You do not know, lying in the hospital bed by the window, this will be your last morning. The light will come through the curtains the way it does, and land on the bed in a particular way that, you will be awake and lucid and able to appreciate it. You just lie here and feel the light, and it is, as it happens, enough Hannah arrived first. She always arrived first. She came in quietly, the way she had learned to come in over the previous weeks, with the particular stealth of a person Who does not know yet whether you're sleeping and has decided that your sleep is more important than her need to see that you are all right. She was carrying coffee, two cups, One for me with a half spoon of sugar and a small amount of milk that I had taken it with forty years, and that she knew without being told because Hannah knew everything about how I took my coffee. In the same way, she knew everything about every other practical aspect of my existence. One for herself, black, because Hannah had given up milk in her coffee sometime in her late thirties for reasons she had explained once and that I had immediately forgotten. She sat in the chair beside the bed, the good chair from the garden, bought inside when the mornings became too cool from sitting outside. She had bought the Sunday crossword in pen without being asked We did not talk much. That was the surprising thing about the last good morning. I had imagined in the abstract way you imagine things you cannot actually prepare for, that the significant moments at the end of life would be full of significant words, declarations, profound statements, the kind of things people say in films when they know the camera is on them. But that is not how it was. Hannah read me the clues. I answered the ones I knew. She filled them in. We got stuck at seventeen across for eleven minutes, which I found personally offensive given that it was a word I knew, I knew and I simply could not locate it in that particular moment, which was happening more and more, and which I had decided to treat as a logistical inconvenience rather than a symptom. Hannah did not fill it in without me. She waited because Hannah understood without being told that the crossword was not simply about the crossword. It was about the pen. It was about doing the thing in the way we had always done it. It was about one more morning of an ordinary life conducted with full commitments to its ordinariness. Seventeen across was catographer. It came to me at minute eleven. I said it perhaps with more triumph than the situation strictly warranted. Hannah wrote it in without comment, which was its own kind of perfect response Helen arrived forty-five minutes later with tea made too strong and a plate of lemon cookies from the bakery on Elm, which had become, over the course of the previous weeks, a reoccurring character in our household in a way that I found deeply appropriate. She sat on the edge of the bed. She always sat on the edge of the bed. Where Hannah took the chair, she maintained the respectful distance of someone who understands that space is sometimes a form of care. Helen always found her way onto the bed itself, as though proximity was the language she thought in and distance was a dialect she had never quite been fluent in. I had always loved this about her. I should have told her more. I'm telling her now. She looked at the crossword. She said, Seventeen across was the cartographer one, wasn't it?" Hannah said, "She got it herself." Helen looked at me with the expression of a contained multitudes. "Of course you did," she said. Then she took a lemon cookie, and I looked at my two daughters in the living room that was not quite a living room anymore, in the light through the curtains that let the garden in, and I thought, "This is what I got to keep. This, right here, this Sunday morning with the crossword and the coffee and the tea made too strong and the cookies from the bakery on Elm. This." And it was, I wanna tell you, more than enough Patricia's last visit. Patricia came in the afternoon. She came three times a week by then. She had a way of arriving and departing that minimized the clinical quality of what she was doing without concealing it. She was honest about the assessments and the medication adjustments and the things she was watching for, But she concluded all of it with steady warmth. That it never felt like surveillance. It felt like being cared for, which I understand now is exactly what it is. She sat with me for a while after the clinical part. She did not need to. She had other patients and other families, and an afternoon that was already more than full, but she sat, and we talked about the garden, specifically about the roses, and whether the variety I had put in the far right corner, which I had planted six years ago, and which had taken three full seasons to decide whether he wanted to be there, will come back strongly in the spring. Patricia had grown up with her grandmother, who kept roses and had opinions. We discussed them at some length. This is, I realize, an unusual thing to discuss on what turned out to be our last lucid afternoon. I cannot think of anything I would have preferred I drifted to sleep sometime in the early evening. Not the sleep of someone who has decided to sleep. A sleep that arrives on its own terms in the way that certain things at the end of life do, without asking, without warning. Simply present. Hannah was in the chair. Helen was on the edge of the bed. The garden was visible through the window. The last thing I remember before the particular quality of consciousness that I had known for seventy-one years became something else entirely, was the light. Still golden, still coming through, still exactly what it had always been Back in the box. Pastor Williams is saying something about resurrection. I had no particular notes on this section. He had just told a story about me, a true one actually, about the time I had bought a rose bush to the church fundraiser silent auction and labeled it in my own handwriting on a card that read, "The rose has survived drought, frost, two repottings, and my neighbor Gerald's weed killer drift. It is tougher than it looks. Minimum bid twenty dollars." It sold for sixty-five, and the person who bought it came back the following spring to tell me it was the best thing in their garden. I remember that. I remember it with considerable satisfaction even now The notes. Hannah is sitting in the front row. I can hear her breathing. The way she breathes when she is holding herself together. I wanna tell her something, but I have already told her in the way that I could. I left her a note. I left several notes. This is not something I planned with great ceremony or announced to anyone. It was something I did in the quiet hours, the early mornings when Hannah arrived, in the weeks when I was still enough to write when the house was my own again for a little while, I had a paper and a pen, and things that needed saying. I left a note in the binder behind tab six, which Hannah had labeled notes, and which was at the time I tucked the envelope there empty. I knew she would find it eventually. When she finally got to the end of the binder, which I suspected would be some weeks or months after everything was over, when she was doing the thing that Hannah does, organizing, cataloging, closing things out, she would find tab six, and she would find the envelope that said in my handwriting, "For Hannah." When the binder is no longer necessary, inside it, I wrote, "You managed everything. You managed it perfectly, and I want you to know that I saw every single thing you did, not just the phone calls and the appointments and the fourteen questions. The crossword pen, the seventeen across, the way you waited, I saw it all. And now I need you to close this binder and let Helen take care of you for a while. She knows. I told her. All my love always, your mother." I left a note in the kitchen tucked inside the lemon cookie tin, which I knew Helen would discover when she went looking for something to bring someone, because that is what Helen always does in difficult moments. She looks for something to bring someone. Inside the tin, I wrote, "Helen, the bakery on Elm closes at 4:00 on Sundays. Plan accordingly. I love you to a degree I was never entirely able to say out loud. Consider this the loud version Also, go look after Hannah. She is going to need the cookies more than she admits. Your mother, who you always made tea too strong for and who drank every cup I left a note in the garden, tucked inside the gentle Hermoine rose for whoever came to tend it. For both of them, really, because I suspected they would come to the garden together in the weeks after, when they did not know what else to do with themselves, and the house felt too quiet, and the garden was still there. Doing what gardens do, which is continue regardless. The note in the garden said, "This is mine. All of this. Twenty-two years of this. I am leaving it to you. The roses will tell you what they need. Pay attention. Love, Your Mother. P.S. The gentle hormone needs to be deadheaded before May. Do not forget." Back in the box, Pastor Williams is wrapping up. He is saying something about a life well-lived, and I find, to my considerable surprise, that I agree with him. Not because it was a perfect life, not because it went the way I planned, not because I said everything I should have said when I should have said it. I did not. I left too many things in the quiet spaces between conversations. Too many things I assumed people knew because I thought them so often. But I had the garden. I had the crossword and pen. I had two daughters who, between them, constituted one complete and extraordinary human being. I had Patricia, who asked what mattered most to me in a given day, and then made sure I could get to it. I had Jerome, who had asked the right question in the kitchen at the right moment. I had lemon cookies from the bakery on Elm. I had the last good morning, and the light through the curtains that let the garden in, and I had, in the final weeks, something I did not expect: permission. Permission to stop managing my own decline and simply be in it. Permission to let people who loved me take care of me with the same ferocious competence. I had spent my life taking care of them. Permission to need things, permission to say things, permission at the end to be tended. That permission had a name. It was called hospice, and I wanna say something about that word from in here because I think I am perhaps uniquely positioned to say it. Hospice is not the end of hope. It is the beginning of a different kind of hope. The hope that the time remaining will be full rather than diminished. The hope that people you love will not have to watch you suffer more than necessary. The hope that the last chapter of your life will be written with the same care and attention and intention as any chapter worth reading. I entered hospice afraid of what it meant. I left it, and I mean this with full appreciation of the irony of the phrasing, understanding that it was the most humane thing that had ever been offered to me. The reception is in the fellowship hall. There will be food because there's always food. Helen has organized it. There are, I am almost certain, lemon cookies from the bakery on Elm. Hannah has a list. Of course she does. She's going to be fine. They both are. Not right away, not without difficulty, but fine. I know this. I know it from a particular certainty of a woman who's been watching these two people their entire lives, and who is now watching them from in this box, stand up together in the front row of the funeral home with their shoulders touching. Hannah's hand in Helen's. Helen's head tilted slightly towards Hannah's shoulder Two women who are everything the other one needs. One who remembers the sunscreen, one who brings the cookies. I am fine from here. A word about hospice. Before I let you go today, I need to say something directly, something I think Dolores would want said, something I wanna say on behalf of every family who has sat in that small room with that well-positioned tissue box and heard the word hospice for the first time and felt, in that moment, like something was being taken away from them. Hospice is not a surrender. It is not a giving up. It is not the end of care. It is the beginning of a different kind of care, one that looks at a person who is dying and says, "You still deserve everything. You deserve comfort and dignity and attention and the specific unhurried presence of people who are not afraid to sit with you in the hard parts. You deserve to get to the garden in the morning." The fear around hospice is understandable. It is a word that arrives attached to reality that none of us are built to face easily. But the fear of the word is keeping families from accessing something extraordinary, a system of care designed specifically to honor the humanity of a dying person and to support the people who love them. Dame Cicely Saunders, who built the first modern hospice on the belief that dying people deserve dignity and full human attention, once said, you matter because you are you, and you matter to the last moment of your life." That is what hospice is built on, not on giving up, on mattering. If you or someone you love is facing a terminal illness, I wanna ask you to have the hospice conversation early, not because it means the end is near, but because the earlier families access hospice support, the more of the living peace they get to keep. Research consistently shows that hospice patients often report better quality of life than patients who continue aggressive treatment. That they experience less pain, that their families report better preparedness and lower rates of complicated grief after the loss. Dying with dignity is not a small thing. It is one of the most profound things a person can be given, and it is what hospice was built to provide. For information about hospice care, or whether it might be right for you and your family, you can contact the National Hospice and Palliative Care Organization or call one-eight hundred-six-five-eight-eight-eight-nine-eight. They are there for exactly this. A word about Take Care Time. The Take Care Time Respite Box was created for the caregiver in every version of this story. The Hannah with the binder, the Helen with the cookies, the caregiver who has been so focused on keeping everything running that they have forgotten somewhere along the way that they are also a person who deserves to be tended to. This box is for tending. You can find our current box at takecaretime.com. That's takecaretime.com. Go tend to yourself. Dolores would insist. Share your story. Four episodes, one extraordinary woman, and the hope that somewhere in Dolores's story, you found a piece of your own. If you have a hospice story or any type of caregiving story, if you are the Hannah or the Helen or the Dolores, or if you are the Patricia or the Jerome who walked in through someone's door and changed the temperature of the room, I would love to hear from you. You can reach me at podcast@takecaretime.com. That's podcast@takecaretime.com. Your story matters. It matters to the last moment, and it matters to the people who are listening, who have not yet found the words of their own. Thank you for being here. Thank you for listening to all four of these episodes, and thank you, most of all, for caring for the people you love with everything that you have. That is not a small thing either. It never was. 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 time, take care.