My mother’s end begins, as most bad things have these past six years, with a phone call. A series of them, actually. On Friday, May 25th, her private caregiver S. calls to tell me that she is mostly incoherent and largely unresponsive. On Saturday Anna, my mother’s favorite nurse at the skilled nursing facility, calls to say that Dr. M. wants to send her to the hospital but she is refusing to go. “The decision is yours,” she says, in her soft, Spanish-inflected voice. “We can keep her comfortable if you choose not to send her.” We can keep her comfortable. I will hear that phrase often over the next week and a half. It seems to be the SNF analog of assisted living’s “No action on your part is required.”
I feel sick at the weight of the responsibility. Send her to the hospital against her will or let nature and bacteria run their course? She was already hospitalized once this year, and barely survived, so I have no illusions about the outcome if I take no action. S. tells me she is “sure” that my mother is “ready to go.” I, however, am not sure, not sure enough to bet her continued existence on it.
I tell my husband that I feel the need to see her face to face, to hear her say the words. He nods, and begins packing, refusing to let me make the trip on my own. He tries to set my expectations. My parents have never given me clarity in crisis: I’ve always had to either forge it for myself or live in the uncomfortable grey lands between the best outcomes and the worst. There is no reason to expect this time to be any different.
When we arrive at 4:30, my mother is far from conscious, and I am pretty confident that between then and when we leave for the hotel at seven she never realizes we are there. Her head tracks noise if someone speaks loudly to her, and occasionally she mumbles words that are impossible to understand. The caregiver cannot wake her sufficiently to dare dinner, afraid of choking or aspiration. Her nurse, a slight young man with slicked back black hair whom I have never seen before, manages to get a high-nutrient strawberry shake into her. He is harried, and asks me to try another shake after her nebulizer treatment. He is too busy for that as well, so he shows me how to hold the mask to her face. She has always hated breathing treatments, and she fights this one with what strikes me as an animalistic reflex, curling her lip in a snarl and rolling her head around. I apologize to her, but hold the mask firmly in place until all the medicine is gone.
When we return in the morning she is more alert, briefly, enough for me to have a bit of a conversation with her, enough for me to realize that she doesn’t really understand the implications of her refusal to go to the hospital. “Why would I go there?” she asks.
“Because you’re sick.”
“I thought I was better.”
“You were, but now you’re sick again, and Dr. M. wants to send you to the hospital.”
“Dr. M. wasn’t here.”
“No, but Anna can call her on the phone. And she did, because you’re sick.”
“I thought I was better.”
And around and around it goes, until she changes the subject. “I had breakfast.”
“What did you have?” I ask, letting the hospital drop for now.
“Eggs.” A long pause. “And orange juice.”
“That sounds good.”
She clutches at the cell phone that she is now too weak to use, feeling its contours. “Where is my cross?”
I pull it out from the folds of her gown and wrap her hands on it. “Here it is.”
She brings it to her mouth and kisses it, then looks around her. I’m sure she’s searching for a clock that she can’t see. “Is it time for lunch yet?”
“No, it’s only a little after nine.”
“I want my slippers.”
“I’m not sure where they are,” I say, “but I can look for them.”
“On the wheelchair.”
“Oh, there they are. Why do you want them?”
“I want to get up.”
“No, you need to stay in bed. Nurse Anna wants you to rest today.”
She starts to protest, but doesn’t really have the energy. A few minutes later she murmurs, “I had breakfast.” Those are the last coherent words that I will ever hear her say.
My husband is right. I will have no certainty. I settle into the grey lands as I tell Anna to make her as comfortable as she can.
Dying, Not Actively
Back in March, I was the one who authorized the call to the paramedics and my mother’s transfer to the hospital. S. had been concerned about her condition, and by the time I arrive around lunchtime it is impossible to rouse her. The ER doctor will tell me later that if I had waited even half an hour longer, they probably wouldn’t have been able to stave off the massive infection that was overtaking her.
On her third day in the hospital, despite the saline drip and the four antibiotics and the nebulizer treatments, we are heading for a crisis. My mother murmurs over and over about wanting to build a palace for my husband and I, that we could crawl into for protection from earthquakes, then eventually falls silent. She doesn’t rouse even when taken to the hospital basement for an ultrasound, with bright lights and uncomfortable pressure on her abdomen. When they still can’t awaken her for dinner, the room suddenly fills up with nurses, all shouting and pinching and pushing her frail, unresponsive body.
I can feel anger starting to well up, and it bubbles into open hostility when the respiratory therapist arrives and wants to know why the hell no one has called a rapid response team, where the hell is the crash cart? I interpose myself between her and the bed, snapping, “Because my mother has a POLST, and I expect it to be honored.”
The charge nurse pulls me aside, thinking perhaps to talk some sense into me, but I say, “My father ignored my mother’s health care directive when she had a hemorrhagic stroke ten years ago, and she never forgave him for it. I don’t want to do that again.”
She is more sympathetic after that but the respiratory therapist, throwing me angry glances, is still feeling around the edges of the letter of the POLST rather than the spirit. She calls Dr. M. to authorize a very painful test that involves inserting some device directly into an artery. Dr. M. tells her that she doesn’t think that falls under the rubric of “comfort measures,” and refuses. Ditto to a specialized bi-pap machine that would necessitate a move to intensive care.
She wheels in a higher capacity oxygen system, increasing supplemental intake from two and a half liters to twenty. She tries to administer a more advanced breathing treatment, but even nothing like conscious my mother manages to swat it away. She falls back to the old treatment, and halfway through it my mother starts coughing and is awake. The therapist is pleased. I am, as always these past years, conflicted.
What is wrong, I think, with a chronically ill ninety-year-old woman drifting to sleep, then unconsciousness, then death, dreaming of building a palace? My husband points out that keeping people alive is the nurses’ and the therapists’ job, and of course they’re going to be uncomfortable with being told to stop doing it.
She is in the hospital for twelve days, and is discharged before she has made a full recovery, because there is nothing more the doctors there can do. She’ll recover on her own, or she won’t. By the end of May I will remember the ER doctor’s words from March – if you had waited even half an hour longer – and wonder if I made the wrong decision.
Dr. M. calls on the 28th of May to tell me that it might be wise to arrange hospice for my mother. She has told enough people – me, Dr. M., S., Anna – that she doesn’t want to go to the hospital that Dr. M. is now going to take it as gospel. She warns me that this is not an indication that my mother will pass away within the week. “Every time I try to provide an ETD,” I work out the acronym quickly and assume it means estimated time to death, “Mother Nature has shown me she has other tricks up her sleeve. And I’ve seen people in your mother’s condition live on for quite a while.”
I call B., the very British geriatric care manager I have retained ever since I decided to move my mother from assisted living to skilled nursing, who makes a recommendation. But when I call the hospice company, D.’s cost-cutting chickens from assisted living come abruptly home to roost. “She just left hospice in December? I’m afraid we’re a small organization,” the excessively, even obnoxiously, cheery man says. “A larger place can wrangle all the paperwork necessary to put someone back on hospice so soon after discharge. We just don’t have those resources.”
“But a larger organization won’t let me keep my mother’s physician on, will they?” I ask.
“No, almost certainly not. But I don’t see that you have a choice.”
I hang up, discouraged. S. texts me repeatedly that my mother seems peaceful. My husband, optimistically, suggests that perhaps she won’t even need hospice, that she’ll just drift quietly away. I like that thought.
I should have known better.
For a few days it seems that Dr. M. might be right. My mother doesn’t eat every meal, or much when she does, but she is eating. She sucks down the strawberry shakes in what seems like seconds, and eagerly awaits the next one. She sleeps a lot, but is generally rousable with some effort.
S. calls me, pleased with herself over a battle with Anna. “Your mother wanted to get out of bed, but Anna didn’t think she should. Finally Jeanne begged me – begged me,” she emphasized, “so I demanded that they get her up. It’s a quality of life issue. That’s what I told them. Quality of life. Anna said she’d just ask to go to bed again, but I talked to Jeanne and she said she understood that she’d have to stay up for a while.”
“‘Quality of life’ can be a trigger phrase for the nurses,” I reply a little coldly. “It can sound like a threat. Did you find out if there was a reason Anna didn’t want to get her out of bed? Are you prepared for the possibility that she’s too fragile for the Hoyer lift? Did you even ask?”
S. and I have had similar discussions before; she insists that no one ever takes perfect care of my mother, and I say that sometimes you have to settle for “good enough.” The exchanges often grow rancorous, but this time she backs away. It saves me from having to tell her that I’ve been doing research, wanting to be prepared for what is coming, not wanting any surprises. It saves me from quoting a sign of the Preactive Phase of Dying: increased restlessness, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers).
Over the next two days she continues to tell me that my mother is peaceful, continues to be dissatisfied with the nurses and the caregivers. It’s almost a relief when her day off comes. I don’t tell her that I’ve asked B. to check in on my mother that day. It would feed her disapproval to know that while I believe in “good enough,” I also believe in “understaffed and overworked.” I don’t want to encourage her negativity, but during this delicate time I do want eyes that are pledged to me and only me on site for at least a little while every day. I was absent for my father’s death. I don’t mean to be absent again.
B. says she’ll go at noon. She usually calls me after her visits, so when the phone rings at 12:02 I know that something’s wrong. Over her, “Hello, Lorraine,” I hear a moaning, keening sound.
“Is that my mother?” I ask in alarm.
“Yes, it is.” Her tight voice suddenly turns calm and deliberate. “I’m talking to Lorraine, Jeanne. Your daughter.”
I hear a strangled, “La-ar-aine?” I can barely make out the syllables.
B. tries to put me on speaker, but it quickly becomes obvious that my mother can’t follow. The speaker cuts out, and her moaning grows more distant. “We need to get hospice in here right away.” There’s an urgency in her tone. “They can prescribe morphine.”
I tell her what the hospice representative said. “I’ll talk to him,” she assures me. “We’ll get something figured out.”
That frees me to make hotel reservations and pack. I forget a few minor things – a headset, a checkbook, extra scrunchies – but packing has become so reflexive in this difficult year that I have ample brain share to throw things in a bag and worry at the same time. I check the road conditions. If I take the 101 I’ll be heading into rush hour traffic all the way down. I hate Interstate 5, have never driven it alone in fact, but it’s already forty-five minutes shorter and that differential is likely to grow. Reluctantly, I point the Subaru toward Highway 46. (I wonder what my husband will think when he checks the Glympse I send him. He tells me later that he was, in fact, mildly alarmed.)
It is an appropriate journey somehow – hot and hallucinatory and a little bit hellish, with heat mirages shimmering in the road like swollen rivers and dust devils spinning high and wild in fallow fields. The first town whose name I notice is called Lost Hills. It’s ninety-two degrees when I hit the steep, interminable climb of the Grapevine, but the Forester’s engine holds steady at 126 degrees and I crest Tejon Pass into a deep grey mist that wraps around the car like cool water.
B. has sorted out hospice, and I receive a text that a nurse will meet me at 5:30. When I arrive at quarter to five – the commute is reverse, and I make good time – he’s already been there for fifteen minutes, researching my mother’s condition so he’d be up to speed when I got there. He is brisk and efficient, and although he speaks deliberately I can feel a certain tension in him. “I’d like to get us set up before noon tomorrow,” he says. “She’s obviously in transition, and in distress.”
In transition, I think. Such a colorless expression for “dying.” I watch her, her eyes half open, moaning on the bed, the unparalyzed hand waving aimlessly in the air. Tomorrow at noon seems hopelessly far away. “We can’t start sooner?” I ask. We both know what I mean. For the morphine. “Her physician – Dr. M. – authorized her for hospice.”
“Unfortunately,” and he seems to mean it, “our own doctor needs to see her in order for me to enroll her.” I stare at him silently. “Let me make some calls,” he says, “do some paperwork.”
He is back in a few minutes. “I’ve spoken with Dr. M. and our physician, and we’ve worked it out. We’ll enroll her now, get an order for the morphine, and our doctor will see her tomorrow.” He hesitates. “The morphine – it does many things. It helps with pain, and anxiety, and even makes it easier for her to breathe.” B. confirms this later – she has a client with lung disease who uses it for precisely and only that purpose. His tone turns a little defensive. “Our goal isn’t to hasten – the end. It’s to make her more comfortable along the way.”
“No, I understand,” I assure him, although part of me wishes he’d just say to hasten death. She’s dying, soon she’ll be dead, just look into the abyss with an unflinching gaze and call it what it is. Be prepared. Don’t be surprised. “How long does she have?”
Now it’s his turn to stare at me, silent. I have the feeling that I’m being assessed. Finally he says, “Four or five days, I think. Nothing’s ever a guarantee but…” he trails off. “I’ve been doing this for fifteen years.” He watches me expectantly.
I do the math. Today is Wednesday. If he’s right she’ll be gone by Sunday or Monday. “Thank you,” I say, “for your honesty.”
I stay with my mother until eight, realize that if I don’t leave soon I’ll be a hazard on the road. She has been agitated, trying to talk but almost impossible to understand. Perhaps she says something about wanting to get up, about wanting a drink – or wanting something else? Once I think she says, “Help me!” Or perhaps it’s my imagination, wishing that I could. In any case, there is no help for her now but a proper calibration of morphine and lorazepam. I try to hold her hand, but she snatches it away from me and returns to waving it in the air. Once or twice she hits me in the face, her long fingernails scratching my cheek, until I move myself out of her reach.
I have dinner with hospice web sites, skipping over Signs of the Preactive Phase of Dying and moving on to Signs of the Active Phase of Dying:
– Inability to arouse patient at all (coma), or ability to arouse with great effort but patient quickly returns to severely unresponsive state (semi-coma).
– Severe agitation in patient.
– Much longer periods of pausing in the breathing (apnea), or other very abnormal breathing patterns
– Inability to swallow any fluids at all.
– Patient breathing through wide open mouth and no longer can speak.
– Marked decrease in urine output.
– Dramatic drop in blood pressure.
– Extremities very cold to the touch. Cyanosis, or a bluish or purple coloring to the patient’s arms and legs.
– Body held in rigid, unchanging position.
My choice of reading material doesn’t help me sleep, and I give up the effort at 5 a.m. on Thursday morning. I’m surprised to see that the parking lot is wet – there is a soft, cotton rain to wrap a disturbed mind in. Everything seems sharp and bright. The slick orange and white of the 76 station. The bright cocoon of Starbucks in an otherwise darkened strip mall. I am out in the world, walking and driving. And eating and drinking, if reluctantly. The world has my acute attention – its sights, its sounds – but sustenance seems a profanity, since my mother can no longer partake. Inability to swallow any fluids at all.
She is still experiencing “severe agitation” when I arrive, but the unhappy night nurse says that she is actually better than she had been. “The hospice doctor came to check her at midnight, and increased the dose of morphine,” he informs me. It takes until early afternoon to get the dosages right, or perhaps she has exhausted herself.
Always remember that your loved one can often hear you even up till the very end, one hospice web site says, even though he or she cannot respond by speaking. I wonder, with my mother, if hearing my voice will be a blessing or a curse. I remember, with a shudder, our last full, spite-filled conversation, from about two weeks before.
“Lorraine?” her voice croaks on the phone.
“I have a nosebleed. Nurse Anna fixed it, but S. says they are doing something wrong.”
It has been a long week of S. saying that the facility is doing things wrong, and I’m tired of it. “If it’s true that she said that,” I snap, “she needs to knock that shit off.” I seldom swear with my mother, but my patience is exhausted. “The people there know what they’re doing.”
“No they don’t,” she says. “The therapist lied to me. She said that the other therapist was coming, and he didn’t.”
“I imagine she was mistaken,” I say, “or confused because it was Sunday and she didn’t realize that other therapists might not work that day. You shouldn’t call her a liar.”
“What should I call her?” she asks. “The person who doesn’t know what she’s talking about?”
“You know what? I don’t care. Call her whatever you want.”
After a pause she says, “Say that thing you say,” typically I’ll talk to you later, “so I can get off the phone.”
“I’m not your trained monkey. You want to get off the phone, say ‘goodbye’ and hang up.”
“Because you’re the boss,” she says bitterly, “and I always have to do what you tell me.”
Scant days earlier, when she’d complained about being alone in her room all the time and I’d asked her to at least try going to something like a church service, she’d waved a fist at me and said, “That room is too hot, S. told them to leave me alone, and you stay out of it!”
Now something snaps in me. It shouldn’t, but it does. “You want to do everything yourself? You want me to fucking step aside? I’d be more than happy to fucking do that!”
“You don’t help me,” she shoots back. “If S. had been here when I had that nosebleed, she’d have marched to the desk and made the staff take care of things like they’re supposed to.”
“The staff does take care of what they’re supposed to already. As for the goddamned nosebleed, why exactly does it have to be the oxygen that caused it? Why couldn’t it be a change in humidity? And even if it was the oxygen, why is it somebody’s fault?”
“You just want me to think everything’s wonderful here, don’t you?”
“I have no fucking control over what you think of the place, but I’m telling you the staff knows what they’re doing. I’m done,” I add coldly. “I’ll talk to you later – or not. Whatever. Goodbye.”
The words haunt me now. But she had called my name when B. was with her, and I have to assume that she wants me here, since she can no longer speak to say “stay here,” or “go away.”
The reason for the tradition of “keeping a vigil” when someone is dying is that we really don’t know exactly when death will occur until it is obviously happening.
S. is supposed to arrive at ten a.m. on Thursday morning, but she calls me at eight. She sounds terribly congested, and says she can’t make it there today. I had thought the sound of us talking might soothe my mother, but now I am left to my own devices.
When I was very young my mother used to have me read books on philosophy and religion to her while she ironed. I spent as much time with the dictionary as the books, since she made me look up every word I didn’t know, but I can safely say that it helped make me into the person I am today. So I page through my Kindle, looking for something appropriate, and finally settle on the second volume of Thomas Merton’s journals, about his first years as a Trappist monk. I read until I’m hoarse.
A different nurse from hospice comes in the morning. She takes my mother’s vital signs, says that they are stable. Then she pulls away the blanket from the foot of the bed. She stares for a moment, then gestures me over. The toes are a strange, deep blue. “Have they always been like that?” she asks. I shake my head no. Cyanosis, or a bluish or purple coloring to the patient’s arms and legs.
A social worker and a chaplain visit in the afternoon. The social worker is carrying a cheerful blue cloth bag. She heads purposefully towards my mother, stops short at her panting, moaning face, and pivots toward me to hold out the bag. It contains a bright red blanket, a pink squeeze ball with a happy face, a deck of cards, a note pad and pen, and a tiny electric candle. The chaplain asks if he may pray with her. It seems more at than with, but I motion for him to go ahead. After they are gone, I feel my mother’s feet – extremities very cold to the touch – and wrap them in the bright red blanket.
Early Friday morning a caregiver soberly points to the empty catheter. “Nothing,” she says, shaking her head. Marked decrease in urine output.
S. is still sick. My husband, brooking no argument even though he is negative on PTO from my mother’s move from assisted living and her hospitalization earlier in the year, says that I shouldn’t have to deal with this alone and he is coming down. My arguments, I confess, are weak anyway – it is a hard and tiring thing.
I return to reading aloud. Hospice insists that the sound of a voice is good and so I speak, even as I question why. Is it for her? Is it for me? Is she really aware? If she is, and merely can’t speak, would she tell me to shut the fuck up? The hospice workers are very sincere, very earnest, and I’m sure they believe what they’re saying, but that doesn’t make it true. On the other hand, who am I to say? Still, of all the things to spin around in my mind this is a low priority, and I continue reading and watching for additional markers of the progress of active dying. Be prepared. Don’t be surprised.
B. comes to relieve me for lunch. When she hears that I am planning to go to McDonald’s – again, perhaps more on this trip than I have the rest of my life put together – she scolds me and rattles off a list of far better places to eat. I pass a hole in the wall Mexican restaurant and though I’m not hungry order a shrimp burrito. To my surprise, the savor revives my appetite, and I eat the entire thing.
My husband and our dog arrive early in the afternoon. Guinness turns out to be a godsend – she lies quietly, but thumps her tail whenever someone enters the room, and makes all the sober faces smile. Late in the afternoon I see my husband staring intently at my mother. “She’s breathing much too rapidly,” he says, quoting an absurdly high respiration rate.
Anna comes in a few minutes later. “She doesn’t seem to be in any pain,” she says, “so we haven’t given her any morphine today.” I recall and repeat Cesar’s words, about other uses of morphine. “I’ll be right back,” she says, and a few minutes later returns with a dose. The morphine is not suspended again.
Saturday morning I arrive at my customary six o’clock time. My mother looks demonstrably worse than when I first arrived – less and less, well, alive. Her mouth is open and flaccid (I look the word up: [of part of the body] soft and hanging loosely or limply, especially so as to look or feel unpleasant, which is a far too uncomfortable fit), her eyes still half open, but now also entirely unfocused and sunken into their sockets. And they are somehow glassy, as if a taxidermist had stolen in during the night and already replaced the living windows of the soul with marbles, and inferior ones at that. Her feet have progressed from bluish to deep purple, and her skin has a strange, waxy feeling. She no longer moves at all. Body held in rigid, unchanging position.
Nurse Abraham comes in solemnly and says that he tried to check her blood pressure and O2 levels several times during the night but they wouldn’t register. When Anna relieves him for the morning shift she comes in with a cuff. She takes a measurement, looks equally sober and says, “Her blood pressure is very low.” I have just been studying medical phrases in Spanish and without thinking translate to: Su presión arterial está muy baja.
I continue to read aloud, writing when I need to take a break. Hyperawareness has now extended to the feel of my fingers on the keyboard – softness, pressure, release, over and over again, keys that start cool and then warm as I use them – as if I am taking all of what my mother is losing and absorbing it into myself. S. and her roommate M. are coming to visit at 11:30. There is something about the look of my mother that makes me wonder if it will be soon enough. I had extended my hotel until Friday, but no longer think I’ll be here that long. “I’m waiting for apnea,” I say to my husband. “She’s manifested just about everything else.”
Sunday morning I arrive a little before six. I text my husband that my mother looks exactly the same as when we’d left the day before and settle back in to reading Thomas Merton aloud. He is packed and on his way home by 6:30. He asks several times if I’m sure he shouldn’t stay, but I say that I’ll be fine.
A little before ten to seven the slight young nurse with the slicked back black hair comes in to start a nebulizer treatment. I wonder about the wisdom of removing the cannula from my mother’s nostrils, but don’t say anything. He is busy again, tells me to hold the mask in place and leaves the room. She offers no resistance at all anymore.
At 6:53, about halfway through the ten minute treatment, the medication begins billowing around her face. It looks like steam from a dragon’s nostrils, I think. Why has it never done that before?
I realize that the rising and falling of her chest has ceased, and my heart begins to pound. Trying to stay calm, I put the cannula back in place. She takes another breath or two, then grows eerily still. I stare at her for a long moment. Where is the apnea? I’ve been waiting for the apnea – there’s supposed to be apnea, not this breathing…and then not. I realize that I haven’t been breathing myself. I suck in some air, remove the mask, shut the nebulizer down. I walk down the hallway to the nurse’s station, and say tentatively, “I think she’s stopped breathing?”
The nurse comes running down the hall, a pair of caregivers close behind. By the time we return she has gone grey. “Close her eyes,” one of the caregivers says. As the nurse stands there, paralyzed, she snaps, “Close her eyes before she stiffens and you can’t.” She is just reaching for the face when my mother lets out a sigh.
The nurse slaps her hand away and starts gesturing frantically for the cannula. “Put it back!” he shouts. “She’s still…she’s still…” he trails off as the caregivers ignore him.
“Look at her face,” one of them says. “There’s no color.” She turns to me. “It’s just a reflex, letting the air out, it happens sometimes.” She turns back to my mother. Closing the eyes isn’t the easy gesture one sees in movies; she almost has to tug the lids in place.
I avert my gaze. “I was expecting this,” I tell the nurse. “We were expecting this.” He stares at me helplessly. “I was expecting this,” I say again. I could easily keep on saying it – it takes effort to stop. Who am I saying it to? To him? To myself?
“The breathing treatment probably did it,” one of the caregivers says. “Too much stress.”
The other caregiver looks nervously at me. I suppress a grim laugh. The irony is not lost on me, that mine was the hand that held my mother’s death. After all the years, all the recriminations, all the resentment, her angry insistence that I had all the power and all the control over her, how could it be any other way? But I was here, I tell myself. At least I was here.
We all stand looking at one another. Finally I break the silence. “I need to call my husband.” I pull out my phone and step into the hall.
“Hello?” I hear.
“She’s dead,” I say. The bluntness feels good, correct. I know I won’t have the luxury with anyone else, who will want – perhaps need – all the euphemisms.
“Turning around,” he replies, with a blessed economy of words.
By then activity is beginning to happen around me. The nurse pauses. “I’ll call hospice. We need to verify death.” That seems a silly joke – don’t you have eyes? – but I manage again not to laugh. Why do so many things suddenly seem so funny? “Do you have – arrangements?”
“The Forest Lawn paperwork is in my bag. I was expecting this,” I repeat one more time. “Do I need to call them?”
“Not yet. We need to verify death.” I sigh. Of course you do.
My mother’s most constant caregiver bustles into the room, all but pushing me out. She pulls the curtains, washes the body and ties a long piece of gauze around the head, presumably to keep the jaw, which has been dropped open for days now, closed. I can hear her, speaking a continual stream of soft Spanish that sounds to my ears like a prayer. By the time she is finished and motions me back into the room the body – it is my mother, is it my mother? – is sallow and alien.
I resign myself to the call I have been dreading and tap S.’s contact info. “She has passed away,” I say, dropping into social correctness.
I can hear her starting to sniffle over the phone. After a quick summary of details I say, “I’m going to pack up her room and then head home. I don’t know if there’s anything you might want?”
“Yes,” she says. “I’m working Wednesday, but I can be available Tuesday, or Thursday.”
I’m suddenly tired, too tired to have a discussion, let alone a potential fight, so I don’t say what I am thinking, which is, If you think I’m going to wait to box up my mother’s effects on your convenience, if you think I’m going to spend one day longer in L.A. than I have to, think again. There’s a strange surge of anger that I don’t understand. But instead I say, “My husband is coming back, we’ll talk about it.”
He arrives just as the nurse from hospice is leaving. The nurse certifies a stroke as the cause of death, though this makes no sense to me at all. My husband hasn’t had a chance to eat, so we get him some breakfast, then return to begin packing up the room.
We are suddenly invisible. Staff that had been smiling and friendly only the day before are now averting their eyes. I feel like a ghost, although my mother is the one who is dead. At best I am an interloper, superfluous to this place now. Everyone’s care was for my mother, and my mother is gone, so who am I? A person who shouldn’t be here, a reminder that sometimes their attention ends in failure.
I’m relieved when Anna heads straight for us and gives us both a hug. “They haven’t come – to take her away. She’s still in there.”
I am determined to be all business, not to let death get the better of me. “That’s all right.”
We walk into the room and I can’t keep my eyes from the shrunken, sickly yellow form on the bed. It looks, I think irreverently, like something my oldest brother might have found on an archeological dig. I can’t connect it to my mother, but I can’t dissociate it from her either. The dissonance is making me nauseous. I turn on my heel and walk back out, back to Anna. “No, it isn’t all right.”
She touches my arm. “Why don’t I call you? After they’re gone.” I thank her, and we leave to take Guinness for a walk.
Shortly after we return Anna comes into the room. “Miss Lorraine, Dr. M. would like to speak to you. She didn’t know, I was going to call her, but I got busy and – ” she waves her hand helplessly.
“It’s fine,” I say. She hands me the phone and I put on my businesslike voice. “Hello, this is Lorraine Rapp.”
“I haven’t heard yet what happened,” she said, “but I assume it was quick and quiet, since I didn’t hear.”
“I was with her,” I reply. “In the middle of giving her a breathing treatment, actually, and she just stopped breathing.”
“Good,” she says in a definitive tone. “There are a lot worse ways to go.”
“That’s good to know.”
“I saw her yesterday afternoon,” she continues, “and she definitely looked like she was deciding when to depart for the celestial plane.”
Again I almost laugh, and am filled with more fondness for the woman than I’ve had during the entire time she was my mother’s physician. “Yes, we were expecting it. Cesar, the nurse from hospice, had even predicted she would pass today.”
“At the risk of sounding indelicate,” she says, “those people are really good at their jobs. You live up San Luis Obispo way, no? At least it will be a lovely drive home.”
On my way back to the room Anna stops me. She is a small, sturdy woman with long, black hair worn in a single neat plait. She has always been calm, always purposeful, but today she looks a little rattled. “I will miss her, Miss Jeanne,” she says. “We grow attached, you know.”
“I’m sure,” I say.
“’Do you have my Tramadol, Anna?’” she mimics, laughing. “Oh, she always knew when she should have things.”
I smile, a little thinly, trying to push away memories of all the times she’d called when she didn’t have the things she thought she should.
“Miss S., too, I’ll miss her.” She shakes her head. “I wasn’t sure at first, she had her ways and they were the only right ones, and…” she trails off, looking at me a little nervously, but I offer an encouraging laugh. I know too, about S. and her right ways. “But then I saw her hugging your mother, and kissing her, and I knew that she loved her and thought – well, we’ll try your way. As much as we can.”
“You were very good to my mother, and she always spoke fondly of you,” I say, lying only a little. “I appreciate everything that you did for her,” I add, and that isn’t a lie at all.
Tears come to her eyes, and for the first time to mine. Then she smiles, and goes back to her work.
What’s Mine Is Mine
In the room my husband and I are making piles: one for things to take home, one for S., one for trash. My husband packs three file boxes of things we think might belong to S. or that she might want: a handful of books, some plastic containers, an assortment of silk flowers and wall hangings made from old Victorian-style calendars, a Bible and a devotional book that B. avoided reading when she stayed with my mother because “some of those stories are really quite dreadful.”
Our pile to take home is considerably smaller. A carved wooden statue of St. Paul holding a book and a sword that I remember from when I was a young girl. Two slim books on being a Benedictine Oblate. A plethora of packages half full of batteries, because I’m not sure what else to do with them, even though we are fully converted over to rechargeable. A full box of gallon Ziplocs, two unopened tubes of Blistex. My mother’s cell phone, in case I need it to cancel her account with Verizon.
I text S. that we have left some boxes, labeled, for her, and that Anna says they’ll hang on to them until she can come pick them up.
My phone rings almost immediately. Her first sentence starts with, “Did you leave – “ and I don’t hear the rest.
I cut her off. “We left anything that was decorative, or that I thought belonged to you.”
“Well did you leave the wall hanging that – ”
I cut her off again. “We’re only taking a few things I knew for sure belonged to Mother, and a few household items.”
“Well did you – ”
I can feel myself growing angrier, and louder. “We left anything that was decorative.”
By now my husband is staring at me in disbelief, and my patience is wearing extremely thin. In point of fact, as far as I am concerned anything in my mother’s room belonged to my mother. It’s a courtesy that I’m leaving anything behind for S., and she’s treating it like an entitlement?
“There was a blue and tan blanket, the one that I gave her that she said always made her feel like I was giving her a hug. It was her favorite blanket, and – ”
“I see it,” I say curtly, contemplating but deciding against a lecture on the meaning of the word ‘gave.’ It isn’t as if I want the blanket, and my mother can’t use it anymore. “I’ll leave it on top of the boxes.”
“And what about – ”
“You know,” I can feel a hard note developing in my tone, “I’m trying to be considerate here. I left anything that I thought you might want.”
She starts sniffling. “I know, you’ve always been good to me, it’s just…” she trails off, and after an awkward silence we end the conversation.
Anna tells us to leave the trash, that she’ll have someone take care of it. We carry out two boxes of clothes, one box of personal effects to take home, and the unused file boxes. She gives us both another hug, the only staff member who can see the ghosts, and then we are gone.
Selling Remembrance by the Pound
We have a long afternoon of not much to do, and it’s too hot to be outside, so we pick up some rapaciously priced Haagen Dazs from the hotel lobby and put Wonder Woman on the TV. We’ve barely started watching when my phone rings. I remember with a sinking feeling the hospice nurse saying Forest Lawn would be calling. “First, let me offer condolences on your loss.” The representative clearly does not expect a “thank you,” as he continues briskly, “also, we want you to know that Mom is safe in our care, and…”
Again I don’t hear the rest of what he’s saying. Mom? I haven’t called her that since I was nine. And where the fuck is the “your” part of the sentence? Do I have a long lost sibling that I’m not aware of? Was she his “Mom” too? They say that everyone processes grief in their own way, and I am rapidly discovering that mine involves a lot of rage.
“We need to set up an appointment for you to come here to discuss arrangements, and -”
“Why?” I cut him off, knowing from bitter experience with my father that what he means is a sales pitch, an upsell. “When my father passed away a woman who worked there told me we could have done all of it over the phone.”
“Well we need to talk about – ”
“Look,” I cut him off again, “I don’t live here. I don’t live anywhere close. I have some business tomorrow morning, and then I’m going home.”
“We couldn’t make an appointment for tomorrow anyway – ”
“Then we’re going to do it remotely.”
“It would be better if – ”
“I don’t live here, I don’t want to be here anymore. I am going home.”
After a long pause he says he’ll make arrangements for someone to call me on Tuesday. Then he is mercifully gone, before my ice cream has a chance to melt.
Later I stop to examine why I’m being so belligerent – with him, and with S. It occurs to me that I’ve spent the last six years feeling as if I were caged. On the one hand there was the bowing and scraping to administrators and healthcare professionals. I couldn’t buy my parents good care, so I had to try to achieve it with force of personality: making myself look weak, helpless, out of my depths and ever so grateful, so they’d rush to my assistance and – by extension – my parents’. On the other there were my parents themselves, demanding and often casually cruel, and me feeling guilty if I snapped back: because they were, after all, old and sick and not entirely in control of their faculties.
But now the shackles have fallen away, and I am at liberty to give no shits, with a feral desire to do so with abandon. Think you’re going to tell me what to do, asshole? Oh, do you have another think coming.
After a miserable, aborted attempt to file my mother’s will, culminating in the decision to find a local attorney and pay him as much as he wants not to deal with this myself, I punch in home on Google maps and am swallowed up by the L.A. freeways, masticated by slowdown after slowdown until finally, near Calabasas, the city seems to decide I am indigestible and with an angry shake of its head tosses me out of its mouth.
Santa Barbara and San Luis Obispo are the opposite, warm and welcoming, with largely empty roads and even some cloud cover to ease the strain on my tired eyes. Google shows a long slowdown at Gaviota but just as I reach it my car meets a Caltrans truck rolling backwards to pick up traffic cones, widening the way before me.
The night I get home I drink a little too much wine, go to bed early, wake up at five and, realizing that the vigil is over, grab a little more sleep. Because the vigil may be over but I know what’s coming up: the bureaucracy of death, that waits for no one’s feelings.
Forest Lawn emails me a sixteen page contract requiring about a dozen signatures, one of them in turn requiring a notary. Although my father tried to prepay for all the arrangements, they still manage to extract $160, including sales tax. The price of death certificates has gone up, you see, and the scattering of ashes at sea didn’t make it into the contract. The cost would have been higher, but I ask the representative to explain the $200 line item for miscellaneous expenses and he says, “Oh, yes, we could apply that to the new charges.”
I call Verizon to cancel my mother’s cell phone service. A comedy of errors ensues, and in the end I only succeed in identifying myself as someone entitled to do so by listing two numbers that she has called in the last 30 days.
I call United Healthcare to cancel her insurance. The woman gasps with such genuine feeling when I tell her my mother has died that I wonder if she has suffered a loss recently herself. She then tells me that I didn’t actually need to call, that Social Security will inform them when to cancel the policy.
I call Social Security, and there is some confusion about what her last known address was. I go through all four of the places she has lived in L.A. the past six years before realizing that they want the local address I use for her business. This will greatly simplify my work down the line, as I can take the death certificate – original only – to San Luis Obispo instead of Pasadena. I ask the woman about United Healthcare’s claim and she says, “No, we don’t do that. You’re going to have to call them back.”
I call Allstate to cancel the annuity she inherited from my father. I am unconvinced that the woman I am speaking to is not a robot. Her offering of condolences is so mechanical that I don’t even bother with a reply. “A case manager will be in touch with you in a few weeks. We will require only a copy of the death certificate, not the original, so long as it is legible.”
I call Chase to cancel the pension she also inherited from my father. They tell me I’ve dialed the wrong department. I ask who I was supposed to call when this is the only phone number on her statements. Four transfers later, someone takes down my information – there is some confusion over whose Social Security number is on the account – and say they’ll assign a case manager who will get back to me in a few weeks. I forget to ask them whether they require an original of the death certificate, or if a copy will suffice.
I run out of energy about when I start to think about looking for a lawyer in L.A. But I can’t settle the estate without a death certificate, so I decide I can wait a few days or a week.
So here I sit, in the lull before the certificates – $21 apiece – arrive and the emails and faxes begin again. The phone is silent today, will be silent tomorrow and the day after that, and I don’t know how I feel about it. My mother’s calls were seldom positive – often they were rather hateful – and frequently they exceeded six times in a day. Now, in the silence broken only by the ethereal strains of Steve Roach on the Sonos I write close to 8000 words, a feat I haven’t accomplished since 2012 when all of this began. I’ve spent ten years feeling like I’ve failed my parents – often with them reminding me of it – and though I can’t escape the old guilts at least new ones will stop piling on. And yet…it was my mother calling. And she won’t call ever again.
S. calls my mother’s old assisted living – without my permission – to tell them that she has passed away. D. sends me an email, more correctly asking if I am okay with her telling the residents. She also says this: You made your mother’s care your priority and you did a spectacular job taking care of her. She was lucky to have such a devoted daughter.
I stare at the words for a long time. Surely she sent this to the wrong person. I visited my mother seldom – four times a year or so – and was impatient with her often. The best I can think to say of myself is that I made her money last as long as it needed to – had she lived another month, we would have been applying for Medicaid. That I found a surrogate in S., a more affectionate, loving daughter than I would ever have been. The most that I can call myself is dutiful, not devoted.
But that’s all in the past and there is nothing left now but memory. And not just disappointments and recriminations, but long discussions of philosophy and religion, gleeful hooting over the ridiculous prices at stores like Barney’s and Saks, decorating Christmas trees and lighting candles for a Hallow’s Eve ritual. I was glad to be there for my mother’s last days. But her anguish has been writ painfully large these last years, and perhaps now the recollection of our earlier, happier days can begin.
Thank you Lorraine. It’s evident you did an amazing job with your mother and father. I appreciate your honesty and generosity of spirit in sharing this experience. You are amazing my friend. Brava❣️
Lorraine, your words, your mind, and your heart are a gift. Once again. You are a master at communicating close to the bones of your experience. I love you for this (and for who you are, too). We don’t think of irascibility as part of the dying process, but it makes so much sense when, as you describe, there were so many compromises involved over so many years – both your mother’s and your own. I would agree that you were faithful and caring with your mom. Even your willingness to respond with genuine feeling rather than pretend something more tepid says this. I love you. Grieving can be such a messy, confused process – as can be the uncertainty of the moments dying. We aren’t as familiar as some cultures with an easier slide into the process emotionally or bureaucratically. Thank you for sharing all of this. Hugs to you and Skip.
Oh, but Forest Lawn is more than willing to give you an a la carte menu of coping mechanisms after the fact! More seriously, I feel like what I could have used was some manner of ritual. Hospice was lovely, they offered me all kinds of support, but I didn’t want to talk about my feelings. Our society often seems to devalue ritual as impersonal, but especially in a situation like this where people’s emotions are going to be all over the map, I think it can offer a shared contemplative space, an anchor in a chaotic situation.
Lorraine, such true emotion, insight and clarity of observation. Cherish the good moments and the others may fade away… Love.
That’s what I’m hoping. Time will tell…