Today I was glancing at some of the files - hoping to be able to delete inconsequential things from 2007 and 2008 and I ran across something I'd written about my mother's death. It it still meaningful to me and I don't want to lose it. So I thought I'd park it here just in case the computer strokes out and nothing can be retrieved. So here it is.
Hospice-By-The-Sea
Christmas Day 2000. The Hospice nurse puts her hand on my Dad’s shoulder. “You’re doing the right thing,” she says with practiced empathy. She turns and flashes a conspiratorial smile at me as if to say, ‘We did it’ and quietly slips out of the room. My Dad looks lost. I lead him to the hallway and we walk slowly to the Family Lounge to meet with the Hospice social worker. She smiles, motioning for us to sit down. The room is quiet. We each choose a chair at the table and sit back to listen to the rhetoric of dying with dignity.
My Dad is strangely silent. He nods his head and pretends to pay attention but I know his thoughts are elsewhere. Over and over he asks “If she wakes up, will you feed her and give her water?” Over and over the social worker assures him that nourishment is always standing by if “the situation changes”. But until then she will receive a diet of morphine, with no water chaser.
The papers are presented and the lines for his signature are boldly marked with x’s. Sign here. And here. And one more, here. It’s done. My Dad sighs, his eyes fill with tears, “My God, “ he says to no one in particular, “I’ve just given you permission to kill my wife.” I choke back my own tears as the social worker begins the second part of her dignified death lecture, attempting to explain how wonderful this will be for Mom. “it’s best,” she says in almost a whisper, “for her.”
But what about us?
Dad and I stand, shake the social worker’s hand, take her card, and pick up the yellow folder full of information we will no doubt have to read. “What is Hospice?”, “What to expect” and our own personal copy of the Dying Patient’s Bill of Rights. We return to Mom’s room.
“They’ve removed the feeding tube.” Dad says, stroking her forehead. “Glenna. Glenna?,” he says loudly, “Glenna if you don’t wake up we have to take you to a Hospice. “ No response. “Glenna,” he tries again, “Sweetie just wake up then we can go home and I’ll make you a nice dinner.” Silence. He shakes his head, bends over, kisses her cheek, and says softly, “We’ll see you later.” We leave.
The Hospice By The Sea is set back from a main street in Boca Raton . It is not visible from the road. But Dad has been there before and he easily maneuvers the confusing turns and tangles of driveways. If we make a wrong turn, we’ll end up at the Senior Center where people aren't dying. They are playing cards, gossiping, or getting ready for a field trip. But we make the right turn and I get my first look at the last place my mother will ever draw a breath. My inner child is screaming, “I want to go home! I want my Mommy!” but my outer body and middle -aged sensibility prevail and direct my Dad to a parking space near the weekend/holiday entrance.
This doesn’t look like a place where people come to die. It looks like a Florida Resort. Pink stucco. White trim. Surrounded by a dense jungle of palm trees and other native Florida flora and fauna, Perhaps, I think, this is somebody’s vision of Heaven
The weekend/holiday entrance is at the side of the building. It is not as fancy as the weekday entrance. We walk a gently sloped concrete path and come to the door. We must be “buzzed” in. This odd requirement will annoy me the entire time my mother is here. There does not seem to be criteria for being buzzed in. Anyone may enter. Simply push the button.
My Dad, who has a prostate problem, immediately goes in search of a bathroom. I go in search of someone to tell me what happens next. Three people sit at the nurse’s station. I approach the one dressed most like a receptionist. My mother is being admitted,” I explain, “is there anything I need to do?” “Not a thing,” she replies, wiping the last crumb of a Christmas cookie from her chin, “Just have a seat over there or grab some coffee in the Family Lounge.” She turns away and resumes her exploration of the plate of cookies on her desk. I sit down.
The Family Lounge is immediately behind my chair. I am drawn to it by the laughter of children. This is a small, but brightly furnished room. At one end is a kitchenette – refrigerator, coffee maker, microwave. A plate of Christmas cookies sits on the counter next to a freshly brewed pot of coffee and a carafe of hot water. I am a tea drinker and I appreciate the presence of hot water and tea bags. This means I won’t have to bring mine from home. In the center of the room is a small round table with 4 chairs. The other side of the room offers a loveseat covered in a happy tropical print, a coffee table, an entertainment center with a large TV and shelves of games. The laughing children are seated at the coffee table trying to construct a jigsaw puzzle. They too are eating Christmas cookies. I have to keep reminding myself that this is Christmas Day.
Dad finds me. “Did Mom get here yet?” he asks, as if she were meeting us for dinner and would soon come strolling in. “Not yet,” I answered, “soon.” We sit quietly. The children have gone but the room is becoming crowded. A large family begins to take up every inch of available space in the Lounge. One woman is sobbing, her head resting on another woman’s shoulder. Three men are discussing football. Two teenagers are devouring the Christmas cookies while another begins to unpack a large cooler. Clearly they expect to be here for a while. Dad and I watch as they unpack the cooler. Sandwich meat, rolls, pickles, chips, soda – and yes – more Christmas cookies. We feel out of place in this gathering, so we leave and walk down the hall to the room that will soon be my Mother’s.
I suppose the room is pleasant enough. There is a Lazy Boy recliner, two wooden chairs, a table and lamp and a tall bookcase full of books no doubt left by other relatives who have spent hours waiting for loved ones to die... French doors open onto a patio where we have use of several lounge chairs and a table. We share this patio with the loved ones of the patient in the next room. Back inside. I stare at the bed where my mother will soon lie. It is a typical hospital bed. On the wall, above where her head will rest, is a small, hand printed card that reads, “Glenna Neff”. That’s my mother, I think to myself, and that is where she will die – under a small hand printed card that says Glenna Neff. My throat tightens. I walk out the door and into the hallway, leaving my father to his own thoughts.
My Mother arrives.
Two men wheel the gurney down the hall. Mom is tightly wrapped in yellow blankets – I guess swaddled would be more precise. Only her face is free. Dad and I follow the gurney into the room. Nurse-types materialize out of nowhere. One says to me, “We need a few minutes alone with her. Go out to the Lounge. We’ll come and get you when we’re done.” She closes the door. Dad leaves my side to revisit the restroom and I return to the Lounge, which is now empty. I pour a cup of hot water and slowly bounce a teabag up and down until the water turns dark amber. Across the hall, in the nurse’s lounge, several staff are eating a large spread of Christmas food and laughing. I wish I felt like laughing. I wish it felt like Christmas.
We wait. I pour my Dad a cup of coffee which he refuses. “It makes me pee,” he explains. I understand . I’ve learned we can never be too far from a bathroom. I stare at the television, thumb through some magazines that have been here longer than the patients, I cross and uncross my legs. My Dad is on his cell phone updating my brother and his wife. When finished, he folds the phone, slips it into his pocket and says, “They’ll be up to see Mom tomorrow.” I nod.
“You can go in now,” says a voice behind us. It’s the nurse who had eased me out of my Mother’s room. “I’ll be in to talk to you in a few minutes,”she adds.
Dad and I make our way back to Mom’s room.
Mom lies quietly in her bed, underneath the hand printed card that reads Glenna Neff. The oxygen device is still fastened beneath her nose. But there is none of the awful gurgling and mucousy sound that we had listened to for days in the hospital. Her eyes are closed but her mouth is wide open, frozen in an “o”. Her head is propped on several pillows, her hands lie atop the sheet. It is cold in her room and I make a mental note to ask for a blanket.
My Dad talks to her. “Glenna – if you want to get better you’re going to have to wake up. If you want to die then just lie there. “ He admonishes her like a child, as if this coma was her bad idea. She doesn’t respond. I try a softer approach. “Hi Mom, “ I say. “Merry Christmas”. I kiss her cheek and wonder whether I should remove the fake holly leaf and red berries the hospital nurses had put in her hair in an attempt to decorate her for Christmas. I decide to leave it there.
The nurse, one of a string of many that I will meet over the next days, enters the room. “Let’s go out into the hall she says and we follow. “The hearing is the last thing to go,” she explains, “We never talk about the patient in the room.” In the hallway, standing beside a framed copy of the Dying Patient’s Bill of Rights, she explains that they’ve given Mom a shot to dry up her lungs and morphine to “keep her calm”. I think to myself, ‘how much calmer can you get than a coma?’ but I don’t ask. We talk at great length about the signs of death and what we can expect. My Dad, once again (but to a new audience) asks if they will feed her and give her water if she wakes up. And once again he is assured that they will. We are told that we may come to visit 24 hours a day and we are free to stay overnight whenever we wish. As she leaves the nurse invites us to call on her anytime if we have questions or concerns. I’ve already forgotten her name.
We return to Mom’s room and I remember that I wanted to ask for a blanket. I head for the Nurses station. As I pass Mom’s closet where no clothes hang, I see a blanket folded on top of the cot that is kept there for overnight stays. I remove it and cover her, turn down the air conditioning, and kiss her cheek. “I love you Mom.” Dad whispers something in her ear.
We decide to go home for a while and have our Christmas dinner. We assure each other that we will be back to visit later. As we head down the long corridor to the weekend and holiday entrance I try not to look into the other rooms but I am unsuccessful. Each death vigil, I note, is different. Some families have filled rooms with pictures, banners and personal mementos. In one room a woman has opened the cot for overnight stays and is rearranging a pillow and blanket, preparing for a long night. In another, a giant stuffed bear does sentry duty from a bedside chair. We leave and head for home. Neither of us says much.
Dad and I had planned to cook a leg of lamb on the rotisserie. But it’s late and neither of us has much of an appetite. I raid the refrigerator and find 2 steaks I can quickly defrost. Moving to the cupboard, I grab a box of rice from the shelf and then return to the refrigerator to scan for something green. Broccoli. We’re set. A fine Christmas repast for a not so fine Christmas. I cook while Dad calls my sister, his pastor, and his brother. I strain to listen to his words and realize he still has hope that she will wake up.
It’s 8:00pm . The dishes are done, the calls have been made. “Let’s go see Mom,” I say and off we go.
The parking lot is crowded and we find a space far from the weekend and holiday entrance. The Florida air is unusually cold and I pull my sweater tightly around me as we walk to the door and ring to be buzzed in. My mother’s door is the 4th one on the left. I count them off as we walk. Nearing her door I am suddenly afraid that we will find her dead, an odd thought since death is why she is here. I push open her door and hesitate listening for a sound or noise. I hear her breathing and feel relief.
Once again her room is cold. I turn down the air conditioner for the second time that day. My Dad is talking to her. If she hears him, she’s not letting him know. “She looks so much more comfortable here,” he said to me. “Your sister will feel so much better seeing her like this.” I am suddenly aware of music. At some point after we left for dinner, someone turned on my Mother’s television – which is also a radio- to a station that plays foot stomping, hand clapping gospel music. Dad and I spend at least ten minutes trying to change the station. But we are remote-control challenged and fail. The gospel music keeps playing.
We sit quietly by her side. Dad discovers he can use my Mother’s bathroom and is – in every sense of the word-relieved. I walk down the corridor to the Family Lounge for a cup of tea and a cookie. I see new faces. A young couple sits on the loveseat, arms wrapped around each other. They laugh and tease. I want them to stop. Somehow this is not the place to do this, I think to myself. I conclude that they must be here to protect an inheritance from a relative they care little about. Two women sit at the table, deep in conversation. One is in tears. Now here are some people I can relate to. I get my tea and walk back to Mom’s room, peering into the room of her neighbor – the one we share our patio with. I cannot see the patient but I can hear her breathing. It is loud, wet and rumbling. At her bedside sits a younger man, keeping his vigil. I wonder if he is the woman’s son.
A nurse has solved our remote control problem. Dad has found a more suitable station that plays big band tunes. My mom loves that kind of music. The nurse returns. In her hand is a syringe with no needle.. “This is her morphine” she explains to us as she inserts the tip of the syringe into my mother’s mouth and pushes the plunger. She checks the bag of urine that hangs discreetly at the side of the bed. It is almost full. She smiles and leaves us. We sit. We take turn holding Mom’s hand and stroking her head. The clock reads 12:04 . Christmas is over.
It is Tuesday. This morning I scour the phone book looking for a cremation service. I choose the one the social worker suggested. The man who answers the phone is named Bob. He is appropriately empathetic and informative. He explains our options and seems to understand, without being told, that money is a concern. I opt for simple cremation and tell him I will purchase an urn on my own. I assume from his immediate acceptance of my declaration that he hears this all the time. He warns me not to get anything breakable.
In the other room my Dad is on his cell phone calling the Hospice. When he is done he comes into the dining room to report. “Mom’s doing fine,” he says. We are both silently relieved that she hasn’t died while we shopped for someone to turn her into ashes. Dad announces that he has a few errands to run. We agree to visit Mom when he returns.
Because it is Tuesday and daytime we enter the Hospice through the front door. The parking lot is full but we find a space close to the door because someone is leaving. As we approach the nurses station a short dark haired woman smiles at us. I introduce my father and myself. She is a social worker. My Dad immediately seizes the opportunity to express his concerns about feeding Mom if she should awaken. The woman, whose name is Judy, assures my Dad that the Hospice is fully prepared and equipped to feed Mom if something should change. “If she wants to eat, she will be fed,” Judy explains. “But she doesn’t talk,” my Dad responds, “How would you know?” “Don’t worry,” Judy replies, “we know.” She smiles at me. She knows denial when she sees it, her smile tells me.
We move towards Mom’s room and again I feel that sense of dread as we approach her door. I listen for the sound of her breathing and again feel relief when I hear it. There is a nurse in the room. My father asks to speak with her and they go out into the hallway. I’ve heard this conversation before and have no desire to hear it again. I kiss Mom’s forehead and adjust her blankets. “Hi Sweetie,” I say, “How are you doing?”
She is on her side. Pillows support her back and keep her from falling over. Her bedrails are up. Her eyes are open. I wave my hand quickly infront of her eyes. No response. No blinking. No pulling away. I take her hand and squeeze it. She squeezes back…I think. I do not know whether to tell my Dad. I decide not to. It could have been a reflex. I leave and join him in the hallway.
The nurse is talking about the signs to look for. The markers that will tell us when the end is near. Mottling of the feet, legs and hands. Cold extremities. Rapid breathing. I can wait, I think to myself, I’m not ready yet. As if she could read my mind, the nurse says “Your mother has not even begun to show any signs.” “How long can this last, “ I ask. “The average time is 7-10 days,” she replies, “ but we have had people last longer.”
The thought that I might not last 7 to 10 days crosses my mind.
“If you have any more questions, “ she says to my Dad, “just ask. I’ll be in later to give her meds.” I like this woman. She smiles, speaks in a soft, comforting voice, and touches my Dad when she talks to him. I wish she could stay forever.
We return to Mom’s room. Once again, the foot stomping gospel music is playing and we quickly change the station. Dad kisses Mom’s forehead and pleads with her to “come back”. I leave them alone while I search out the cookie of the day and the cup of hot tea. I bring Dad a hot chocolate to sip. We sit with Mom for an hour until we leave for lunch.
At home, my brother calls. He and his wife are coming on Wednesday or Thursday. The prodigal son. We decide to call my sister and invite her to visit, convinced that she will find comfort in seeing Mom so peaceful. I pray silently that she will arrive sober. I watch soap operas while Dad contacts his pastor, his brother, and a few friends from church. These calls are important. When he talks to these people he talks about her dying…if he does this enough, I think, he will start to believe it.
Early in the afternoon my Father leaves the house for a while. I am bored and restless. I scrub the kitchen floor and clean my Dad’s bathroom. The overpowering Clorox vapors give me a headache. I open the windows and sit down at the computer to shop. For the urn.
Hours later I have narrowed my search to three websites. I want my Dad to choose from the urns I like. I marvel at the variety and the variation in cost. There are big urns, mid size, and even tiny urns designed to give to relatives or close friends who want an ounce or two of their loved one. They are metal, ceramic, porcelain, wood and even plastic. There are scattering urns that offer temporary shelter for the cremains before they are scattered into the wind. There are urns that play music. And finally there are urns designed to hold the ashes of both husband and wife. Dad chooses a blue urn with a candle holder on top. Yes, it’s breakable. I type in my Mastercard number and press the submit button. Voila! My mom’s final resting place will mail within 24 hours.
Dad and I make a quick trip to see Mom. We meet another nurse. My Dad corners her and begins to list his concerns. I can see that he is starting to second-guess this decision. He wants to take her home. The new nurse and I team up and talk him out of it. I feel like Judas – I am saying things to my Dad that I’m not sure are true – I too question the humaneness of this method of dying but I can’t imagine an alternative. Taking Mom home is NOT an option. We leave.
It’s evening now. But tonight I decide to alter our routine. I bring with me a tape player, several tapes of contemporary hymns and a Bible. Once at my mother’s side, assured she is still breathing, I plug in the tape player and pop in the cassette. Gently I tuck the Bible under her hands. I glance at my Dad and see immediately that this scene I have created pleases him. I make a mental note to include these activities into each evening visit. He decides that the Bible will remain with her till the end.
By Wednesday our routine is set. Three trips a day. Hymns at night. Endless cups of tea and dozens of cookies. There is also the consistent examination of the urine bag and a cursory look at Mom’s legs and hands for “signs”. If she were a turkey we would be inserting a thermometer to see if she was done.
On Thursday, my brother and sister-in-law arrive. We meet them in Mom’s room. My brother declares his relief at seeing Mom so “at peace”. I declare myself exhausted. My sister-in-law offers to take me out for coffee. I jump at the chance. Denny’s here we come. We eat and chat and to any observer we look like 2 women out for a late dinner. It is nice to feel normal…I’ve spent so many days being in charge, it’s good to have another person take over.
And so it goes, day after day. Morning, afternoon and night. Cookies, tea, and tears. The monotony is broken only by the occasional visit of a man I’ve dubbed “Cremation Man”. Dressed nattily in a dark suit he quietly wheels a gurney down the hall. An emerald colored blanket rides neatly folded on top. He disappears into a room. If I’m in the right place at the right time, I see him leave. Discreetly and quietly pushing the gurney only this time the blanket is covering someone’s mother..or father…son or daughter. Cremation Man will soon come for my Mother.
New Years Eve 2000.
My sister and her boyfriend have joined us to welcome in the new year with Mom. They’ve brought champagne and stone crabs and have clearly raised a few celebratory glasses before coming. My sister, a bit drunk, is loud and inappropriate. That’s why I love her. She’s reliable that way.
We say a New Year’s toast over my Mother’s sleeping form. We check Mom’s body for “signs” and notice the coldness that began in her feet is now moving slowly up her leg. How much longer can this go on, I wonder.
When the party ends, we leave. My sister is calmer. And quieter. But still drunk.
Jan 3, 2001
Until today I never really bought the idea of “energy” and life forces. It always sounded so new-agey. But today, as we walked into Mom’s room I had a strong sense that we weren’t alone. I felt presences. I said this to my Dad. He looked at me strangely and disappeared into the bathroom shaking his head. My immediate thoughts were of my Grandmother and my cousin Frank. Both gone. But, maybe not. I just knew they were in the room. I just couldn’t prove it – and why would I want to.
I also had a sense that Mom wasn’t in the room. I mean her body was, but she wasn’t. I checked her closely. Her breath was shallow and quick. Another sign. The room felt strangely peaceful. I flipped off the TV/Radio and the ever-present rockin’ gospel music. I switched on the CD player and started the music my Mom liked. I held her hand and stroked her fingers with my thumb. “I love you Mom,” I whispered, “but you can go now. Dad is okay. Josh is okay. Everything will be fine and you have nothing to worry about.”
She didn’t move. Neither did I.
I listened to my Dad blowing his nose, suffering from an ill-timed cold. If his honking blow didn’t raise the dead, nothing would, I reasoned. Dad was getting sick. He was wearing down. And I was holding it together.
The priest came. I recall some group prayer and the Episcopal version of the last rites. This gives my Dad comfort. It pisses me off. Where the hell was God while my Mom descended into the purgatory of dementia? Screw him (or her).
We left at noon . I continued cleaning my Dad’s apartment. It was mindless and felt just right. A quiet afternoon. I made a simple dinner and we ate in a silence occasionally punctuated by my Dad’s consistent need for reassurance that he’d done the right thing.
We made our evening trip to the Hospice as usual. Dad’s cold was getting worse. He had a fever. He was probably contagious but what did it matter? Would someone catch his cold and die? Black humor is my salvation.
It was clear that Mom was checking out. I was determined to be there when it happened. We sat. And sat. My Dad was dripping in perspiration and sneezing in bursts of 4 or 5. The nurse stopped by. “Sometimes,” she said softly”, “They won’t go when the family is here.”
But I wanted to stay. I needed to stay. I would not let my Mother die alone in the Hospice bed with the small hand-printed card over her head that read “Glenna Neff”.
I looked at my Dad. He needed to be in bed. I looked at my Mom…she was doing better than we were. I walked over to Dad and said, “Let’s go home. You can take a nap for an hour and then we’ll come back.” He nearly ran from his chair. I think he was relieved to be able to go. He kissed my Mom on the forehead and told her he loved her and he would be back. He said a prayer. We left.
Back home, Dad changed into his pajamas and lay down in his room. I sat on the sofa. I did not remove my sweatshirt. My purse was by my side. I picked up a pencil and paper and began doodling my Mom’s name and then the date. As I finished writing the date, the phone rang.
She was gone.
I made the phone calls that needed to be made and we left for Hospice-By –The Sea for the last time.
Dad and I said our goodbyes as Mom lay wide-eyed and dead in her bed. They’d been unable to close her eyes. It was creepy. My nephew came. My Mom’s precious grandson whom she raised and loved far more than any of her own children. He fell apart. I held him while he sobbed. I took over for my Mom at that moment.
As we were leaving, someone new was being rolled in. I wondered if this woman would lie in the same place where my mother had been. I would never know. I wanted to leave the building before Cremation Man came, so I hurried out.
We arranged for the funeral service to be held on January 5. I would fly home the next day (which happened to be my birthday). Mom was not at her service…she was still being cremated. It was a nice service. I wrote the eulogy but was unable to read it. My brother read it however he messed it up by adding some of his own crap. Ruined the flow. Oh well. We did get a “sign” . Even the priest was surprised. A white dove flew into the church (this was at night) and perched on the rafters. He was there for the entire service and then flew away. Who knows.
I left on the 6th, as scheduled. I was exhausted, drained and emotionally unavailable. I was looking forward to re-entering the land of the living. Before boarding my Dad thanked me and then said, “I feel bad that you’re going home alone. I looked at him, put my hand on his arm and said, “Dad, so are you.”
