Yesterday I realized I had forgotten the anniversary of my mother's death. I knew it was coming up soon, the 28th? 29th?, and went to check the dates. She died eight years ago, June 24th.
I'm not certain how I feel about having forgotten. I still think of her nearly every day, usually in a positive light, but her memory no longer haunts my waking moments or fills my dreams with razor blades and skeletons. Life goes on, the wheel turns. Grief changes us, and time changes grief.
This is an essay I wrote two years after her death for a friend (whose mother had just died) when asked how I had endured.
My mom had always been a large woman, but in her final year she’d gone from merely obese to grotesquely bloated, the result, we were to discover later, of fluid retention caused by medications and renal failure. Because of her nurse practitioner’s concerns for my mother’s cardiac health, she scheduled my mother for a CAT scan, thinking they would find evidence of an aneurysm. What they found instead was a tumor the size of her fist growing on the back of her left kidney. The irony of learning the diagnosis the week before I went with her to finalize her will was lost on neither of us.
There were tears, and shock, and appointments. And more shock. I went with her to every appointment, called in all of her medications, and became the point of contact for her care. Lurking in the shadows of my mother’s diagnosis was the acceptance, at least on my part, that my mother was showing all of the early warning signs of my grandmother’s dementia. While this had nothing to do with the cancer, it lent, in its own way, to the burden of handling her situation (and has become a very real facet of my own life as I’ve begun to recognize certain of the signs in myself).
My brother lived with my mother the last nine years of her life. He tended to the house and her physical needs when his alcoholism allowed. As her health continued to deteriorate, and he was less emotionally able to handle matters, I spent more time at her house than I did my own, something that frustrated her to no end. She despised the fact that she was no longer able to take care of herself. She lashed out with a vigor that rubbed salt in the wounds left by her barbed tongue. My mother would have given Harlan Ellison a run for his money while she was running his ass over to boot. The anger was the bastard stepchild of her fear of dieing, of seeing the light at the end of the tunnel and not being able to jump from the train.
When she could still make it out of the house, my mother went on a buying spree. Not for herself, but for others. “Would you like. . .?”, “Let me get you. . .”, “I bought the boys. . .”, “Why don’t we go get. . .?”. I joked that she wasn’t trying to cheat death, she was trying to buy it off. She couldn’t die yet, she still had checks left! She wanted to leave a lasting memory with her family; she wanted to know that she would not be forgotten and saw her bank balance as the means to that end. And if she could still shop, if she could (hopefully) make people smile, then she was still alive.
Her oncologist was a wonderful man, open, dedicated, and determined to see she received the best possible care. What he didn’t count on was my mother’s insurance balking at the thought of her being seen by a local kidney specialist, and her reticence at being treated in Seattle. I’ll spare you the details of the authorization acrobatics, but I can tell you how the first surgeon agreed upon by patient and insurance was unwilling to take her case based on her size and the attendant health concerns. She was devastated. In the end, she was seen at the University of Washington Medical Center, but the broken road to reach that point was enough to make me wish I still had hair to pull out.
Her surgeon was concerned about her size. The cardiologist didn’t think her heart could take the strain. The internist worried about the dangerously low function of her other kidney, and her ability to withstand anesthesia. The nurse practitioner fretted over her diabetes. My mom? “Just get it over with.” After a battery of tests, consultations, and more tests, surgery was scheduled for May 12th.
(Editorial aside. My mother HATED to let anyone else drive. She was a horrible passenger. She was also on a number of painkillers and antispasmodics to help her sleep at night, but that left her well and truly doped until they wore off around noon. So, the morning of her surgery we pile into her car – my mother, my brother, my niece, and myself – with my mother firmly behind the wheel “gawdammit” and we headed for Seattle. She was stoned. She was well and truly Hunter S. Thompson, Fear and Loathing In Bremerton, out of her freakin’ mind, and we let her drive because it would make her more comfortable. We careened down I-5 North to Seattle, weaving in and out of lanes, all four of us laughing because she couldn’t see where she was going, my niece declaring that she was going to close her eyes and pretend she was in a boat, my brother ready to take the wheel because “I’m used to her driving like this”. We laughed until we cried, and I held on to that laughter to get me through.)
Where was I?
Right, May 12th.
We arrived at the surgery center where she was processed and taken back to the prep room. We were allowed to visit her one at a time. My brother couldn’t handle the poking and prodding and fitting for pressure socks. I could. Nor could he accept the fact that my niece didn’t want to go back, and my mother didn’t want her to go back. She wanted her granddaughter to remember her as a vital part of her life, not as a slab of bacon in a gown with no back. My brother was married to Mom as certainly as if an Arkansas judge had signed the papers. His world revolved around our mother and his daughter, and his world was falling apart. He couldn’t see that mine was as well.
We were allowed to walk with her part of the way to the OR…and then we were alone, the white doors closing, taking her from us. And when one door closes, another opens, and this one ushered in the waiting demons. They’re horrid creatures. Wait for this, wait for that, wait for the unknown. We went to the waiting room where a dozen or more other families entertained their own waiting demons. A receptionist sat by the phone, logging everyone in and out, directing phone calls from the OR to feed the waiting demons. I tried to fool myself into thinking I could write. I played a lot of solitaire.
Her surgery was to be a hand assisted laparoscopic procedure. The surgeon would make three incisions; two for cameras and instruments, one for his hand, and the kidney would be wrapped in a sterile baggie, tied off, and removed. She went back at 6:45AM. We received word at 9:20AM that the surgeon had just then opened her up and things appeared to be going well. We were told to expect a four-hour procedure once first cut was made. At 11:30AM, we dared to leave the waiting room and took our demons to lunch in the hospital cafeteria. The food wasn’t bad, but I couldn’t tell you what I ate.
Our return to the waiting room was heralded by the worst possible event – there’d been a call for us while we were out (the receptionist couldn’t reach us on our cell phones, what with the poor reception in the bowels of the medical monster). I never believed in the expression “my heart dropped to my knees” until it happened to me. I kept waiting for the receptionist to smile and say “Surprise!” It didn’t happen. She called the waiting room back, and I accepted the receiver with what I hoped were good graces. The nurse on the other end of the line was soft spoken and polite. There’d been a complication with the procedure, my mother was closed up and would be taken to recovery. The surgeon would be there soon to give us the details. Soon? The waiting demons had a field day.
The straightforward procedure had been compromised not by my mother’s health but by her size. Laying flat on the table, she had started to suffocate under her own weight, and turning her on her side didn’t help. The anesthesiologist was unable to keep her blood oxygen to an acceptable level. The surgeon, deciding that discretion was the better part of valor, halted the procedure before he actually manipulated the kidney and passed the point of no return. He was unwilling to risk my mother’s life to save her life. We couldn’t fault him. That was my mother’s job when we saw her in recovery less than an hour later. She would have climbed off the gurney and gone after the surgeon with her IV pole if she could have lifted her head from the pillow. “Gawdammit, yuh muhn it’sh shtill there?” she said, or tried to say.
“Yeah, Mom, the kidney is still there.”
Neither of us admitted it out loud, but my brother and I knew the surgeon’s good conscience had signed my mother’s death certificate.
She stayed in the UW surgery center for five days, gathering her strength and complaining bitterly about the food, the care, the blood draws, and, most of all, her kidney. She was afraid, and her fear had found a voice. I made phone calls, coordinated contacts, and kept everyone apprised of her condition. I was lauded for being “responsible” and “strong”; everyone was pleased that I was there to take care of things because they “knew” my brother couldn’t handle it. Fuck responsibility. She was my mom, too, yet all people could think about was how hard it would be for my brother if anything happened to her.
The question of her release came up and was handled poorly by all concerned. The doctor was willing to release her to her home, my brother and I thought we could take care of her, the UW social workers couldn’t keep the same person on the case for more than five minutes, and my mother. . .my mother decided she didn’t want to be a burden, so she checked herself into a nursing home. She had to decide right then and there, today, now, or the nursing home bed would be taken. If I knew then what I know now, I would have demanded that we get her a medical bed and the in home nursing care the doctor suggested, but I didn’t so I was there when she signed the release forms. I drove her to the nursing home because her insurance wouldn’t cover the ambulance ride. She was a lousy passenger.
She was a resident in the nursing home long enough for them to determine that her insurance wouldn’t pay for her continued care, and in that time I heard things, saw things, and smelled things that still creep out of my subconscious at night and probably will for as long as I live. The staff that might have cared had no training, and the staff that didn’t care wanted nothing more than a paycheck and a way out. Some nursing homes are driven by the hope of recovery and quality care; FL (a much more polite reference than I typically use) was driven by the grave. Get ‘em in, watch ‘em die, move ‘em out. Rinse. Repeat.
The one high point of her stay was her roommate, a vivacious woman by the name of Jeanette who had been admitted for diabetes care and her inability to care for herself. Medical matters didn’t stop Jeanette from sneaking sodas into the room, or teaching my mom how to hoard condiment packets from their occasional fast food dinners to use on the institutional glop. I let myself lose track of Jeanette after my mother died, it was easier than returning to FL. I wish I was a stronger woman and could have stayed in touch.
My mother was home for two days before the enormity of her care came crashing down around our ears. We would learn later how FL had allowed her major incision to fester (oh, sorry, they didn’t “allow” it, their staff “noted” it and put a compress over it to stop the leaking), and that my brother and I could not lift her as we thought we could. She was too heavy and unable to help herself. My brother called in the wee hours to tell me she’d fallen (yeah, and couldn’t get up), so I rushed out to help. She hadn’t wanted to call 911, but in the end that’s what it took to get her back into bed. Where we heaved and struggled, the paramedics used a lifting board and, Wa-La!, she was on her feet and back in bed. Paramedics are my heroes.
She was in and out of the hospital from that point on for monitoring, wound care, dehydration, and blood transfusions. She hated it and wanted to go home. She didn’t want to be in the hospital, she could take care of herself “gawdammit”. Why didn’t the surgeon go back in and take the kidney? Why didn’t the oncologist figure out some way to fix things? Why did she need all of this treatment when she was going to die anyway? Why? Why? Why? And the only answer I could give was “I’ll be there for you.” To this day, I wonder if it was enough.
Complicating matters was the onionskin on my mother’s arms from years of Prednizone use to ease the pain and swelling of her fibromyalgia. We frequently joked that her skin would tear if you looked at her cross-eyed, but the horrific, painful reality is enough to make you regret ever saying “to make your skin crawl”. Her arms swelled with massive bruises at the slightest brush with a solid object, and if she accidentally bumped against a flat surface, a corner, anything, her skin would peel in huge sheets. Her arms were the focus of intense scrutiny at the hospital as each nurse immediately recognized the steroid ravages. Two orderlies, seeking to help her up from the floor when she’d fallen out of bed, made the mistake of gripping her arms and literally tore the skin off her forearms. It gathered around her wrists like fleshy cuffs. The hospital couldn’t leave the wounds untended for fear of infection; she couldn’t bear to have anyone touch them and wanted them left alone. In the end, her arms were swaddled in cotton bandages and left alone. The staff did not wish to cause any more pain.
Her final trip to the hospital was preceded by another fall, and the paramedics (having gotten her back in bed, dressed her arms, photographed the wounds, and acknowledge our concerns) strongly recommended she go to the hospital. Have I mentioned paramedics are my heroes? My mom wouldn’t let them take her in the ambulance, but later that morning she agreed that I could drive her to the emergency room. She endured the unpaved driveway one cautious bump at a time. “Sandra, remember what we talked about,” was all she said until we reached the hospital.
“I will,” was all I could say in return. She didn’t want to suffer, didn’t want to linger, and she was counting on me to make certain that didn’t happen.
The ER doctor had sense enough to recognize that her health concerns were not solely the result of the cancer. He ordered a series of work-ups and declared the final outcome. Acute renal distress is what he told her; renal failure is what he said to me when we stepped outside the room. I made the appropriate calls, soothed the frets and worries, and cursed every living one of them for thinking about how hard this must be for my brother.
Mom was admitted to the cancer wing of Harrison Hospital. The rooms were well appointed and comfortable, the staff amazing beyond belief. They cared for the patients and their families. When one of the nurse’s aides offered us drinks or Popsicles, my mother, whom hadn’t had more than half a piece of dry toast in three days, perked up immediately “Popsicles?” He brought her a lime Popsicle. I’ve never been happier to watch someone eat.
Watching her savor the Popsicle is one of the last good memories I have of my mother. Well, perhaps all memories are good when there is so little time to make new ones, but the Popsicle delight certainly is one of the more pleasant. Try as she might, she couldn’t, or wouldn’t, eat anything after that. My brother believes she intentionally starved herself. I hold that my mother never met a meal she didn’t like and wouldn’t give that up without a fight. She was on IV fluids but took nothing by mouth aside from three sips of water during her final 24 hours. I brought in her favorite foods, offered her bites from my tray when I ordered from the hospital (the French toast was tasty), even went so far as to buy fresh donut peaches from the Olympia Farmer’s Market, mash them up, and dab the flavor onto her lips in the hopes she might want a bite. Nothing worked. She smiled when she could. I went outside and cried when I had to.
She was moved from being the sole resident of a double occupancy room to a room of her own for the final week. Her window opened onto the crushed rock roof of another ward, but someone had set two lush potted trees on the roof to soften the view. My brother brought in the enlarged picture from the balcony of room 5310, their last Hawaiian get away, to give her another view. This was where I spent my nights and most of my days. This is the room where the special lifting team got her in and out of her bed using a mechanized hoist and a sling, where the aides gladly answered her insistent buzzing to change her position in bed, and where I honored her wishes and killed my mother.
Don’t get my wrong, the staff didn’t argue once. I was very polite, you see. There came a time when I realized my mother had crossed her own point of no return, and that the only thing she had to look forward to was no longer looking forward. So, being the responsible daughter that no one had to worry about because they knew I could take it, I found my mother’s nurse one afternoon and told her that my mother no longer wished intravenous fluids. I lied in my mother’s best interests. The nurse was gracious and kind; she made a note in the record, contacted the doctor, and eventually removed the IV. This surprised my mother, but she didn’t ask any questions, merely said how relieved she was to no longer have a needle in her arm. I smiled and held her hand, and later I cried.
The next day, as the ravages of thirst and reality took their toll on us both, I confronted my mom with what was happening. “Do you remember the conversation we had in the car?” I stood at the foot of the bed.
She licked her lips with a tongue that couldn’t offer much. “Yeah.”
“That’s what’s happening.”
“Well, dammit, how do I get it over with?”
“Tell them you’re in pain, lots of pain, and you finally can’t take it any more.” I walked to the door and opened it without looking back. “I’ll get the nurse.”
The nurse came in after I briefed her on my mom’s perjurious admission of pain. My mom confirmed just how miserable she really was, how she hadn’t wanted to admit to it but now had no choice, and the orders were put in for an increased dosage of morphine every two hours as well as something to help her sleep. Make no mistake, my mother was in pain, and, yes, most of it was physical, but the pain that mattered was in her eyes when she looked at me and could only see how her own mother withered away after a stroke. Years before, my mother had decided to withhold food and water in accordance with her mother’s wishes and now the torch had been passed.
I helped the aides position her and helped with her baths. I couldn’t clean her incision, but I held her hand and watched. I told my brother when they removed the IV, informed him when the medications were increased, let him know when the PEG line was inserted and they began the morphine drip. She was his everything. He’d done his best to care for her at home only to realize it wasn’t enough. He visited every day, sometimes twice a day, but was never sober.
My mother’s final words to me came in the wee dark of June 24th. I’d gone out for a few hours the night of the 23rd to be with my husband and give my soul a breath of fresh air, and she wailed and moaned as I left. “Please, Sandra, don’t go. This is important, Sandra. Please. . .”
But I had to get out, at least long enough to remind myself that I wasn’t the one dieing. I came back a few hours later and settled onto the foldout chair. Shortly after 1:00AM, I heard my mother say, “Sandra, is it time to get ready for bed?”
“You’re already in bed, Mom,” I said, wanting her to know I was there for her. “Get some rest.”
I drifted back to sleep and woke too short a time later to the sound of water bubbling at the bottom of a cast iron pot. Rhythmic. Gurgle-hurk-gurgle. Pause. Gurgle-hurk-gurgle. I was exhausted and annoyed, angry that her breathing had pulled me out of an already unsatisfying sleep. I was angry, can you imagine that?, angry with my mother because of the inconvenience of her noisy death. Couldn’t she at least let me get some sleep after everything I’d done for her?
That’s when I realized the lengthening pauses between each breath, and my anger drained away leaving me feeling strangely hollow. I sat by her side as the sun gingerly slipped over the horizon, telling myself that it was okay to not feel anything even as the sadness began to bloom. My mother lay in repose, struggling with each breath. Her face was taking on a pale, waxen sheen, the tiny veins on her cheeks losing their color. Her glasses, which she’d insisted on wearing, were perched on her nose, even though she would never open her eyes. I called my husband at work and told him it wouldn’t be long. I watched the watercolors seeping across the sky. “The sun’s rising.” It was important to say that.
“Yes, yes it is,” he said from miles away and at the center of my heart.
I was afraid to touch her at first, I didn’t want to startle her or, worse, startle myself, but I finally reached through the bedrail and took her hand. Her palm was sandpaper, the back of her hand tissue paper blotted and bruised. I told her I loved her, that she wasn’t alone, that it was okay to let go. The pauses became the breaths. I told her a lot of things.
I was fascinated by the rise and fall of her chest, the stark contrast and exaggerated effort. Her lips occasionally spasmed and her cheeks sometimes quivered. This was her body’s big hurrah, its last gasp. The same weight that had threatened to smother her on the operating table had recruited dehydration and morphine to the cause. Recruited? No, I’d offered and it had accepted. After the breath I was sure was her last, I counted to 30 before pressing the nurse call button. Two seconds later, she took another breath and I nearly fell out of my chair.
Two nurses came in, my mother’s regular nurse and one had not seen before. The unknown one had a stethoscope around her neck. My mom’s nurse put a hand on my shoulder. “How’s she doin’?”
“She’s dieing.” I couldn’t make it sound casual so I settled for not crying.
The other nurse took my mother’s hand. “Yeah.” With her free hand, she set the stethoscope to her ears.
My mom’s nurse stroked her cheek. “She’s starting to lose color. Poor dear.”
They stood vigil with me, one with her hand on my shoulder, the other with the stethoscope to my mother’s chest and an eye on the clock. I thanked them in the only way I knew how, by letting them stay.
That’s not entirely true. I let them stay because I couldn’t bear to be alone. I told them about my mother’s travels, the places she’d been and the wondrous things she’d seen: the Taj Mahal; the Louvre; Ayer’s Rock; Fiji; the Pyramids; the Sphinx. And when the last breath came and went, my mother was gone and all I had left was a body on a bed.
I want to say things were a blur after that, but they are still too clear. This time the nurse made the calls, but they were different calls, ones to the funeral home and the health department, and the doctor. I sat by the bed, waiting for that next breath. It had to come. Any minute now, she was going to open her eyes, turn to me, and ask for a sip of water. Any minute now. That next breath.
The aides and nurses checked on me. They cried when I couldn’t, and understood when I needed to step out to make calls of my own. I lost myself in the mortar of the walkway, and counted the leaves on a near-by bush. I sat on the low wall by the front entrance and watched the world continue to turn, trying to comprehend how people could not realize the momentous events that had just transpired. My mother and best friend had only just died. How could they go to work and go about the rest of their day? Where was her moment of silence? Where were the flags at half-mast? “The sun’s rising.” That’s what I told my husband. Life went on, mine and everyone else’s.
I made my calls and went back inside. When my brother came, he broke down at her side and stayed there for as long as he could stand before heading back to the house for some unfinished business. As for me? I gathered her belongings and stayed until the very end. One of the aides who had been particularly good to my mother introduced her replacement for the next shift and gently, very gently, suggested that I might not want to stay around as they prepared the body for transport. The body on the bed still wasn’t breathing, so I took everything with me and didn’t look back.
This is where I’m supposed to draw things to a close with insightful comments about how life goes on, but you don’t need me to tell you that. Life is still beautiful, and terrible, and ugly, and wondrous, and too vivid and rich to be captured by clichéd and fanciful words. I didn’t look back that morning, June 24, 2008, but not a day has gone by since then that I haven’t looked over my shoulder to see if she’s taken that next breath.
What I only just realized yesterday is that it’s not her next breath that matters, but my own, how I carry it forward one thought, one word at a time. My mother was bitch enough, and supportive enough, that that I think she would approve.
(Mom showing Ian how to roast marshmallows.)