A Daughter's Journal

A Daughter's Goodbye

Contributing Writer Ann Gross bids farewell to her beloved mother

by Ann D. Gross

Even as adults, few women with mothers want to think about mother loss; still fewer want to hear about it. We may have broken the silence surrounding sex, homosexuality, and menopause, but mother loss is still treated as taboo.
--Hope Edelman, Motherless Daughters

I believe there are two secrets women keep from one another: the feelings of ambivalence about being "tied down" to children--feelings that occasionally sneak into the consciousness of even the happiest moms, and the excruciating physical emptiness and pain of feeling alone and untethered when our mothers die. It's not coincidental that these two secrets are stops along the same continuum.

I'm talking about the primal connection of daughters and mothers. About our bodies having been fashioned from theirs. About them passing to us the ability to create life, all springing from the mysterious alchemy of their wombs.

We are forever linked in the passages and cycle of birth and death. My mother brought me into the world; I tried to ease her journey out of it. I was with Mom in her room at the skilled nursing facility in Florida, holding her hand and desperately hoping to comfort her, when she died on July 25 at 2:30 in the afternoon.

A friend some 20 years younger than I--speechless in the face of my loss--gave me Hope Edelman's book, Motherless Daughters (quoted above). In the book, one adult woman describes her mother's death, "like existing without a God." That's how I feel. Not that anyone could ever accuse me of describing my mother in "godlike" terms. But as any daughter will tell you--no matter what your relationship with your mother--when she dies it is like losing all four limbs. Our bodies mourn on a cellular, organic level. There. That secret is out.

Do Not Go Gently...

My Mom did not go gently into that good July afternoon.

She had been suffering from sores on her legs brought on by psoriasis and subsequent ultraviolet radiation "therapy" some 40 years ago. She'd had a few of the sores excised, including one so deep the doctor had to remove part of her leg near her ankle. That was about 10 years ago. She had incorporated the daily ritual of bandaging her leg into her life and simply moved forward. I admired her for that.

But her circulation had been compromised and her skin was pathologically dehydrated. The sores on her legs wouldn't heal, and one had gotten so infected that her physicians decided it was time to debride the wound. I only found out later (and pray she never did) that an infection had spread to the bone in her leg.

After the July 6 surgery on the wound, Mom had been in agonal pain. Whenever she was moved (which was frequently because she needed to be turned and changed), she screamed in pain and developed new skin tears. The staff dutifully recorded each one, until the entries looked like a baseball program completely scored for all nine innings.

During the last few days when I refused to leave Mom's side, I had to leave when the team of CNAs and nurses came to turn her. I couldn't bear to hear her yelp in pain or see her diapers changed. One time moving her hurt her so much that she shouted, "I'm going to call the police and have you arrested!" at Terri, a CNA and one of her favorite people. Terri was the only person Mom would let help her eat during those post-surgery days.

Mom was transferred back to her room at the skilled nursing facility about a week after the surgery. I was elated to talk with her by phone, but she sounded miserable.

"I want to see you, Mom. How about if I come down?"

"I want to see you too, Annie," she said. "That would be very nice."

I could feel the fear spread through my chest like steam in a closed room. In the past, when I suggested to Mom that I go down and visit when I was worried something was wrong, she'd dismiss my idea and admonish me: "Oh don't be ridiculous, Annie. I'm fine. Stay home and take care of your husband, for heaven's sake. Save it for when I really need it."

We both believed her "really needing" help was way in the distant future.

Who Is That in My Mom's Room?

I went straight from the airport to the skilled nursing facility. I was shocked when I entered Mom's room. There was a woman who looked like the nursing home resident everyone dreads becoming: She was sitting in her wheelchair facing her TV; her body slumped over to the right without her wig or makeup; and she was drooling. This could not be my elegant, feisty Mom.

But it was. Her eyes registered my presence, and she smiled weakly.

"Hi Mama," I said, going immediately into denial, where all the women in my family reside comfortably.

"Hi Annie," she said. "Look at me."

"You're beautiful," I said, and I meant it. Despite her droopiness and drooling, she was still gorgeous with that Vivien Leigh face. I thought of all the older people we see sitting in their wheelchairs whom we're scared to engage with because they look like this. Turns out they're our moms, our grandmas, and our aunts. They're the same people they always were underneath it all--no more and no less.

Mom was tired and wanted to get into bed. Arlene--a lovely, soft-spoken, deep-spirited woman--was Mom's CNA for the shift. I watched her ease Mom into bed with her loving hands and soothing voice. She was so kind and so patient with Mom that I began to believe in guardian angels.

I watched as Mom's head landed on pillows that looked like they were made from stones and hay. She was shivering and all she had was a hand-crocheted blanket--one she hated. The lights were fluorescent and unforgiving --painful to the eyes and soul. I wondered why only a daughter would notice that this little lady suffering in that bed desperately needed some comforts of home.

Bringing Mom Comfort & Pleasure

That night at Mom's apartment, I raided my parents' bed, gathering the feather pillows in their elegant cases. I found a couple of small lamps with pink lampshades and low wattage to put in Mom's room at the skilled nursing facility. I wanted to bring the entire room to Mom--or Mom to the room. But the pillows and lamps would have to do for now. I surfed the shelves at the local Target, until I unearthed a red fleece blanket for her.

When I got to her room the next day, I wrote her name and room number on the fancy pillowcases in permanent black marker; I did the same with the blanket. No one was going to come between my Mom and her comforts on my watch. When I saw her sink into the down pillows and pull the new fleece blanket up to her neck, I exhaled for the first time. I added the lamps--one by her bedside that I set up with an automatic switch that she could control--and Mom remarked how cozy the room was.

Then I wrote elaborate instructions to the CNAs on how to make my Mom's bed and which pillows needed to be on top, next to her skin. I wrote in bold marker as if Mom's pillow arrangement was a life-threatening matter. For me it was: My life was being threatened by seeing my elegant Mom suffer on a bed of pain, and, damnit, she was going to have down pillows under her head as long as I was breathing.

The facility had set her up with state-of-the-art IV antibiotics, administered intermittently, via a port on her right arm. It was geriatric Russian roulette: She needed the antibiotics to help heal the wound and fight infection, but the antibiotics could push her over the edge and set off another bout of Clostridium Dificile. C Dif, that nasty intestinal spore, could literally kill her--in a miserable, agonizing fashion--given the breakdown of her skin and overall health status. Without the antibiotics, the wound would become gangrenous.

Through the Mirror, Darkly

By Monday night, July 19, Mom had spiked a fever. Her tiny face was flushed bright red. I put cool compresses on her cheeks and forehead; I cooled the flushed skin on her neck and took her hot hands and held them with my air-conditioned, cold hands. Her eyes were closed, and she was grimacing but not speaking.

My favorite RN, "Nurse Carol," was a tough, kind, beautiful woman who brooked no nonsense. Although only slightly older than I, she treated me maternally. She came into the room to check Mom's temp.

"Why does she have a fever, Nurse Carol?" I pleaded.

She waited two beats, looked at me, and said gently, "Because she's sick."

"What do you mean, she's sick?" I asked, truly bewildered by the suggestion. "She's not sick; she just has a fever."

Mom was in and out of consciousness that night, and I stayed until I was so hungry that I thought I might faint. I was frightened and feeling sick at heart because I was scheduled to fly back home the next afternoon.

Mom kept saying, "Don't leave me. Don't you dare leave me," every time I started to gather my belongings to head home for the night.

Later, after some 10 minutes of silence when I thought she was sleeping, she asked, "Are you going home tomorrow?"

The question jolted me out of exhaustion.

A Bed of Pain

How could she possibly know I had planned to leave tomorrow when she didn't know what day it was? I took it as a sign--canine in temperament as I am--to stay until she was better. Whether or not some part of me knew she was dying, I didn't admit it to myself. By Tuesday night, July 20, she was thrashing in pain from the wound on her leg, despite maximum doses of acetaminophen. The wound care nurses, who helped Mom with gentle, sure hands, had strapped special booties on both of her feet to prevent further skin breakdown.

Mom was kicking off the bed sheets, then pulling them back on. She kept trying to lift her leg, saying, "I can't believe I can be in this pain. Ow! Ow!" she screamed. "It feels like someone is sticking me in the leg."

"I'm so sorry, honey," I said, many times. "Is there anything I can do to help?" Mom shook her head no, but that was enough for me.

"I'll be right back," I said. It was 10:30, and I knew Nurse Carol would be there for another half hour.

I ran to the nurses' station and buttonholed her. Despite preparing her paperwork so she could leave after a double shift, she listened closely to me.

"Please Carol," I begged, "she is in awful pain. Isn't there anything we can do for her?"

Carol went in to see Mom.

"I'm going to call her doctor," Carol said. "She's in too much pain."

"You can do that at this hour?" I asked. What surprised me was that she was willing to call the doctor at 10:45 at night.

"Of course I can," said Carol. "I need to--she needs something stronger."

I returned to Mom's room, and she had calmed down. I hoped the pain had abated some.

Ten minutes later Nurse Carol appeared in Mom's room with a syringe that had a red back on it.

"What's that?" I asked.

"It's Roxanol, a morphine derivative," Carol said. "I'm going to give her a few drops under her tongue."

I became frightened, worrying that I had precipitated Mom being given narcotics; I knew she didn't like to take strong meds.

"No, no. Maybe she doesn't need it," I waffled. "She doesn't seem to be in pain so much right now. I didn't mean to...."

"She does need it, honey," said Carol. "You did a good thing. This will help her have a restful night."

I've thought often of Carol saying I "did a good thing." In the weeks that followed, I asked every doctor I knew whether or not that was true. All were quick to say it was, but my doubts haunt me despite my empirical findings.

Carol told Mom what she was offering her, and Mom said she didn't want it. She'd been fighting and fighting for a week--against people helping her eat, insisting she wanted to do it herself (and was then unable to); against pain; against giving in to the drugs. She was terrified that if she let go and let the drugs take over, she would die. She'd been asking her 90-year-old sister for "Mommy and Daddy's" telephone number every time they spoke on the phone.

I was afraid she would die that night. And I wanted my mommy, too.

Carol insisted on giving Mom the meds, and Mom reluctantly opened her mouth. At that point it hurt her even to breathe. The wound and her entire skin were painful and inflamed.

Never Say Die...

After about 20 minutes, Mom stopped thrashing and started talking.

"I have an idea, Annie," she said. Elated to hear her talking and not mentioning pain, I asked what her idea was.

"You stay here, and I'll go home," she said.

She began to sing in German, which she would do when I was a little girl. I don't know where she heard the songs--both her parents were born in New England in the 1800s, and even her maternal grandmother was born in America. Maybe it was from her father's mother, who came from Germany.

"Du...du...liebzig in hersten."

I know no German, but listening to her sing was like a life review in melody for me.

"Do you think I should put this bread in the freezer?" she asked.

"No sweetheart. I think it's fine the way it is," I responded, struggling to offer words that would calm her.

"I don't understand it," she said. "I've been here three weeks, and they still haven't let me see my husband."

I thought I actually felt my heart breaking under my breastbone then. I had my computer on my lap as I did each day I visited. I opened it and began writing down everything she said. I was desperate to hold on to her essence, and yet consciously unable to think of her as dying.

Ever the writer and gerontologist, I decided to "capture her utterances," and I became a clinical observer--not a frightened, helpless daughter with a crumbling heart. Even as I wrote everything she said, I wasn't aware that I was recording her final words or that I was recording her words on my computer for a time when I wouldn't be able to listen to her actual voice.

"That's what I say, I'm never going back--and it's four hours on the plane," she said. I wrote it down.

"Mother and grandmother are all sick!" she exclaimed. "Doesn't sound too great."

And then, "I've got my blue cotton sweater and my navy blue one."

"Two blue sweaters, Mom?" I asked, as she seemed to want to converse.

"A navy blue and one light blue."

Leave it to Mom to talk with me about clothes; it made perfect sense. That's how we always bonded: through the designer clothes in the Back Room at Loehmann's on Route 9.

"Why do you have to go with me? Why do I have to go?" she asked. "What time did you say we'd be home?"

"Oh, any time we feel like it," I responded, not wanting her to worry.

She began to get agitated. "I don't think two little girls should go out alone," she said.

And then, "I don't understand it--I have my whole life ahead of me."

I realized that's what I thought, too, as I sat across from my Mom, nodding in agreement--even as I recorded her words, hoping to remain in clinical character, so I wouldn't collapse.

I became aware that the television had been on.

"Hertz, in the neighborhood," said the woman's voice from the television. It was quite loud.

"What the hell difference does it make?" Mom shot back. I laughed.

"I feel so self-conscious," she said.

"Why, honey, because I'm here?" I asked, hoping for a clue.

"No, the kids," she said.

And then, "What can you do for me? I got two more of those, I got two more...I took my coat. What is she waiting for? Nobody said...I'll get rid of you."

"Annie, I can't walk out with you. Are you going upstairs?"

"Yes," I responded.

"Me, too," she said.

"George, what are we gonna do?" she asked Dad, who died five years ago. Then she started singing again, "Please release me, let me go...'cause I don't love me anymore..."

The Spirit of a Wolverine

Mom was so strong-willed that the narcotic reduced her pain, but didn't eclipse her spirit. She wanted to live. During my visit with her just a month before in June, she struggled to rise from the car seat. As she struggled, she always chatted, humiliated that her body wouldn't carry out her own commands.

"I'd like to live a couple more years, at least," she said, unable to rise from the seat.

"At least," I emphasized, "and many, many more after that, too."

What astounded me during those final days was that nursing staff's elegant choreography. The wound care nurses were heroic in their attempts to will Mom's skin to heal through constant care and attention. They hooked up IV bags with precision timing, q. 36 hours. They were so vigilant in their work that they had even cleaned the wound and performed a bandage change the morning Mom died.

The CNAs were unflagging in their dedication. They were kind and loving and nurturing with Mom, certainly, but also with me. They insisted that I eat and cooked up some intricate bribe with the kitchen staff to make sure I got fresh fruit on a tray in Mom's room during our last three days when I was a "resident," too. I didn't see anyone else in the whole facility with fresh fruit.

Moreover, despite all I learned in my policy classes about skilled nursing facilities taking all measures not to have residents die on the premises, I was moved that not only did the nurse managers not try to transfer Mom to the hospital, but that the staff was so competent and considerate. It was a godsend. It gave my mother a "good death" and me the best experience I could have--all things considered.

Mom stopped speaking, for the most part, after that long Thursday night when she chattered away, and I sat up with her--afraid she would slip away from me any moment.

At one point she burped, and distinctly said, "Excuse me."

I think those were among her last words, and I'm careful not to personalize their meaning. Good manners were as much a reflex with my mom as was coughing or sneezing.

One of the hardest moments for me came on Saturday when the wound care nurse appeared and announced to me, "She's NPO now."

I don't know who made that decision or why it was pronounced then. But I nodded, so I wouldn't look stupid. Thinking back on it, Mom had been on the Roxanol for almost 48 hours, and was unable to swallow at all.

We could have requested that a PEG tube be inserted into her stomach surgically, but it was so clear to me that wasn't a good choice for Mom. She would hate the intrusion, and her skin kept her in agony.

The doctor had explained about the "raspy" sounds that would come when the body was shutting down. At around 5 a.m. on Friday, I thought those respirations had begun. I panicked and called my brother, waking him from a sound sleep. I suggested that if he wanted to be there for Mom's last breaths, that he come over.

Fortunately he fell back asleep, and they were not Mom's last breaths. She still had a day and a half. He later confided to me that he didn't really want to see her die. God knows I didn't want to see her die, either. But I did want to be there for her--to comfort and be present for her--to "attend" her at death as she tended to me at birth.

During those last three days, Mom and I held hands all night: me by the side of the bed, trying to sleep in chairs meant for sitting; Mom in her bed, in a morphine haze. Her grasp was tight, and she frequently called out my name. I loved the smell of her palm, and the feeling of it in mine. Mom was never big on touching, so I felt almost like a thief as I greedily held her hand all night.

I reassured her with loving words, and told her I was there and would never leave her. I told her that she could leave me--that is was OK and that I would be fine, although I would miss her terribly. I told her over and over not to be frightened. I thanked her for giving me life and for teaching me her songs from her camp days when I was her little girl. I put on a Frank Sinatra CD with all the melodies she loved, including "They Can't Take That Away from Me." She used to listen to it and cry over it after Dad died. I sobbed and apologized for crying, but explained that I was "just so sad." At one point I put "Come Fly with Me" on repeat so she could have that image. I wiped her hot brow and gave her water through oral sponges, and even some ice cream, when all she had left was the sucking reflex.

Mom must have decided she didn't want me to be all alone when she died. On Sunday, July 25 around 2 in the afternoon, when my brother had come up to be with us for a brief visit, she began to die.

She had been sleeping for two days, but her breathing became noisy, raspy. Suddenly her eyes flew open, and she seemed to bolt upright. I was standing up talking with my brother. I ran to the side of her bed and clasped her hand in mine.

"Oh," I exclaimed, excited that she had opened her eyes and that she would spend some time talking with me. "Look who's...."

My thought was truncated by the loud gurgling in Mom's throat, and I saw that her eyes were open but empty. My brother and I both started to cry, and I clutched at my own arms.

I started up my coaching again, not wanting her to be frightened.

"It's OK, honey," I said. "I'm here; you're OK, I won't leave you. You can leave me, but I won't leave you. You're going to see your mommy and daddy and your Georgie."

The gurgling got softer and softer, until it stopped. Her hand was still grasping mine. Even after she stopped breathing, I refused to let go of her hand while it was still warm. An hour or so later, my brother entered the room and gently suggested that the heat was from my own hand, but I still refused to let go.

I heard my brother on the phone calling Mom's older sister: "We lost Mom."

I thought I was having nightmares. I couldn't even call my husband for hours, unable to speak the words "Mom" and "died" in the same sentence.

I Don't Know Why You Say Goodbye, I Say Hello

Now when I look back on those days, I see the rhythm of Mom's descent. The nurses and the CNAs were the dancers in the wings of this delicate choreography. Mom and I didn't know the steps, but we did our best. And our improvisation was woven into the dance's design. The supporting players knew their steps and placement by heart. They danced their parts elegantly and with feeling; they danced quietly, empathically, with purpose--but not with bathos. They danced kindly and moved us gently around the stage, always careful to give us the space we needed, letting us improvise our parts, even as they knew the dance.

I am so grateful for that last week I had with Mom: to be of service to her and to make a difference, to bring her feather pillows in elegant cases, and soft pink lamps. I was grateful to run interference for her during the overnight shifts, insisting that she have the lovely, caring aide overnight instead of the one from the agency who stumbled in to the nursing home for the first time on the Saturday that was to be the last night of my Mom's life.

When I sought comfort and counsel from my friend Marjorie--whose Mom was hit and killed by a car some 30 years ago--on how I might face writing this final "Daughter's Journal" piece, she said, "I'm not sure there is a goodbye for a daughter to a mother. Not that I want to discourage you, but it is really a different kind of hello, at least that's how it turned out to be for me."

I'll have to ask Marjorie to elaborate on how I may say that different kind of hello.

I've heard that every emotion contains within itself the impulse for its opposite, but where does one end and the other begin?
--Hope Edelman, Motherless Daughters

This article originally appeared in Caring for the Ages, December 2004; Vol. 5, No. 12, p. 65-72. Caring for the Ages is an official publication of the American Medical Directors Association, published by Elsevier. This article may not be reproduced in any form, print or electronic, without permission. The opinions expressed by the authors are their own and not necessarily those of AMDA or of Elsevier.

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