Significant Sunday

It's my 45th Mother's Day, my first without a mother. The hunky scientist is off on his weekly mountain bike ride and I would go to church, but everyone will be there with their mothers. Every member who has a mom within driving distance brings them to our church on Mother's Day, whether or not they are only C&E (Christmas and Easter) attendees otherwise. After the liturgy, instead of the usual coffee hour, there's a big Mother's Day luncheon. I'm not feeling sorry for myself (OK, yes I am); I'm just more protective of my feelings than to subject myself to a whole churchload of people celebrating their living moms.

Today, we're having a sports-nut pal over to eat pizza and watch the Warriors trounce Utah (with any luck). I've been dealing with a little problem I hope all this activity will sweep away for a while: no matter what I am doing or thinking, for long periods there is an image in my mind of my mother, sick in bed, struggling for breath, or of her face just after she'd died. I struggle to counteract this image with one of her alive, healthy, and happy, but that just ends up another layer of thought over the one that won't go away. Today is a day to celebrate our mothers. I don't want to think of her sick or dead. Not at all. I want to think of her on all the Mothers Days I can remember--enduring the awful burnt or underdone (sometimes both) pancakes and scorched coffee we made for her when we were in grade school, proudly displaying all the flowers we picked for her or later bought, displaying our cards on the mantel over the dining room fireplace. I have 44 Mothers Days to remember with joy and I'm determined to do that. So happy Mother's Day to my mom. Happy Mother's Day to us all.

Blinders off

I've had a strange urge these last few days to undergo "a rigid search," as character Alex put it in the book and movie "Everything is Illuminated." Grief has a way of putting soft and sentimental shades over my eyes, preventing me from seeing things as I did in the past. I have a strong sense of duty to examine my memories of my mother and me, and remember everything--not just the good things, but every aspect of my relationship with her--so I can retain a whole and true image of her and her impact on my life. And so, slowly, I've begun turning pebbles over and scrutinizing what lies beneath them. I did this literally as a child, when all the world was a museum. After a rain, I'd go out and roll logs back and tip up wide stones. Underneath I'd find pearly clusters of amphibian eggs, gorgeous purple and yellow salamanders, whip-thin newts frozen for seconds before flight to other, as-yet-unturned sanctuaries. Other times I'd discover spiders' nests, dry and safe from the wet world around their stony havens, and the sight of those twitch-legged creatures would make the soles of my feet feel jumpy. I'd put the rocks or logs gently but swiftly back down and continue on my search for comelier wildlife. Now, I think it's time to look at the spiders as well as the salamanders, to see what I can learn from both their worlds.

Grief 2.0

Because I don't like writing things twice, here's an excerpt of an email I sent my mother's sister, who'd written to ask how I was doing:

"I'm OK. Pretty down, actually, and so (I've noticed) is Frank. We sprinkled Mom's and Dad's ashes out in the channel this morning from a catameran called Double Dolphin. I sang part of the Greek Orthodox memorial prayer, and John said a really moving poem he wrote. Before we left, Frank and I picked flower petals from the garden, and we all threw handfuls of them onto the swell as we let the ashes go. It made a really beautiful sight on the water--a yellow and pink and purple and blue floating trail."

I spent the rest of the day in a horrible funk. But I worked for a while, and then I went and got my aunt from her hotel and we went down to a beachside restaurant and drank wine and watched the tide come in and the sun go down and weary families come in from the sand. My aunt said I haven't begun grieving. She has her opinions. I didn't bother to correct her; I didn't have the energy. I know I did so much crying while my mom was declining that I have few tears left now. I suspect most people who meet me on the street can't discern that anything is wrong.

But while I'm not visibly grieving, I'm finding I'm easily stressed, I'm sensitive to noise or too much stimulus of any kind. I feel as though the bones of my spirit have been cored free of marrow and I'm waiting for an infusion of new emotions. In the meantime, I may go through my days looking and acting as though nothing is wrong, or as though I'm mildly stressed or fatigued, or, at the worst, short-tempered. I may engage in deep-thought discussion, I may go to museums and admire views and laugh at jokes and have dinner with friends. But inside I'm carrying a deep hollowness, and the scary thing is that I don't know when it will fill back in. Maybe the filling-in is accomplished day by day, with each new experience. Or perhaps one day I'll wake up and the empty space will be gone. Part of me is afraid to show this part of me; that if I walk through life visibly wounded I'll somehow end up left all alone. But I have a hunch that part of healing is letting my loved ones in, and so I take up my courage and write.

This morning as the sun rose I took the plastic box that held the bag of my mother's ashes, as well as the empty bag, out to the garden. Fine, light dust clung to the insides of these things, and so I couldn't just discard them. I set them down on the brick pathway my mom and brother once worked hard to set in, turned on the pale-green hose and rinsed each article three times in the cool stream, emptying the water and dust into the big citrus tree pots and over the bright orange nasturtiums and pale pink alstromeria. Only then could I consider the box and the bags as just those things, things that had served their purpose and could be thrown away.

Away with the current and the tide

Tomorrow at 10, we'll depart the Santa Barbara marina on a boat called Condor and chug 20 minutes out into the channel. There we will scatter my mother's ashes and let the wind and current take them. I picked up the ashes today. They are in a plastic box that could be mistaken for a container for better-quality shoes. They are very heavy. Frank asked that we collect flower petals from each part of our front and back yard, and scatter them with the ashes. He said that would be "most appropriate." So I'll wake him up tomorrow around 8, and we'll go out before the dew has dried and fill some bags with fragrant rose and lavender. My Aunt Rose, my dad's sister and a good friend of my mother's, asked if we could say a prayer. She's Greek Orthodox, so I know she means the memorial prayer that the priest sings at a person's funeral and at certain anniversaries of their death. It's the only prayer she'd know and it's touching that she's want it said, even though my mother was not Orthodox. I'm not a priest, but I know how to sing the haunting and beautiful memorial. It begins: Evlogitos, ei Kyrie, didaxon me ta dikaiomata sou. I'll say an abbreviated version, because I am the only Greek Orthodox in my immediate family, and my brothers and sisters would probably get impatient with the full-length version.

Even though I'm fairly recently baptized in the Orthodox faith (5 years ago or so now), I find it very difficult that I will not be able to have a 40-day memorial for my mother in the church. I'll have to sing it myself, somewhere privately, in front of a candle to remember her by. Yet even as I write these words, I find them strange. I was non-religious for most of my life (and my mom was for all of her life), and now here I am troubled that I cannot ask my priest to sing my mother's memorial.

Life is a strange and beautiful thing.

Aftermath

I was able to officiate my mom's memorial without losing my composure altogether. In fact, I was cool as a stream until I stepped in front of the assembled. But the moment I started talking, I felt my throat start to close up, and I needed a kleenex. After a few deep breaths, though, I was able to continue. Her jazz vocalist friend Sandy sang one of Mom's favorite tunes, "Do Nothing 'Til You Hear From Me." My younger brother gave a eulogy filled with vivid memories of our childhood with Mom and of her more recent life. He got a few tearful chuckles out of everyone and then more tears. Then we asked another longtime family friend to come up and play. Al, a jazz pianest, sat at our dinner table many times while I was growing up, and he accompanied my mom on countless occasions both at gigs of hers and when she sat in where he was playing. He gave a soulful rendition of "Over the Rainbow." And our city's poet laureate, who became another of my mom's close friends when they met at a widows and widowers support group, spoke eloquently on behalf of them.

For the record, the memorial was open-casket as it had been for my dad. The body did not look like my mom. At my dad's funeral, his body looked like he was just taking a nap. But for this occasion the mortitian gave my mom's face an expression and color that made it look like it was a cousin of hers in that casket. So after the initial glance, I didn't look again. Her body was cremated today. We'll receive her ashes tomorrow and on Thursday we'll take a boat out into the channel and scatter them, along with my dad's and some handfuls of rose petals and lavender, into the swift-moving current. I'm not feeling much about that, for some reason. I'm not feeling much about anything, except a strong longing for about a year off. Everyone tells me that after a while the grieving will start, or that at the holidays I'll be hit with waves of sadness. I don't know.

Now there is paperwork to do. Now there are closets to go through, bills to keep paying, investment decisions to make, so many practical things to take care of. We'll start the first weekend in June, so I have a month back in the Bay Area with my sweetheart. I'm looking forward to that.

Friday morning

I'm up late again, assembling playlists for the memorial that's happening day after tomorrow... I guess really it's happening tomorrow, since it's early Friday and not late Thursday. Anway...I've been importing my mom's CDs into my iTunes library and creating two playlists--one for the memorial and one for the reception. This whole week has been a whirl of activity. I've had no time to feel anything, except in the morning when I wake up. I remember my mother saying that there were times during her illness when she'd wake up feeling great. She'd lay there in the magic of early morning, thinking normal morning thoughts: "What shall I do with my day?" and feel a thrill that all was well. She'd get up and turn on the heater, get the paper and start the coffee, feed the cats and then feel all her energy drain right out of her. She'd have to go back to bed before her day had rightfully begun. It demoralized her so.

My mornings this week have had a similar timbre: I awaken in my old room, in my old neighborhood, thinking old early-day thoughts about drinking coffee and reading the paper with my mom. And then of course I remember I can't do that and a melancholy fog steals across the landscape of my spirit. And so I get up and check the list of things to do that day. Yesterday I approved the proof of the program for the memorial, then came home and started scrubbing every room of the house. This place is neater and cleaner even than when my mom was healthy, because then she was too busy living to keep a spotless house. It was neat and clean, but coupons and cut-out articles, old wooden clothes pins, water bottle tops, paper clips and twist ties tended to gather in corners and cubbyholes, and dust collected thick and soft in the dimples of the cane baskets hanging on the walls. As my sister and brother worked to lever weeds from between the pavers out in the yard and tame the hedges, I cleared every corner inside, gathered most of the baskets from the walls and hung my mother's paintings instead, scrubbed the kitchen and bathrooms, washed down the appliances, put out new rugs in the bathrooms and guest towels on the counters, whisked cobwebs from every tall corner. Our dear old house, with its cracked plaster walls and ripple-glass double-hung windows, is ready for my mother's friends.

Rambling when I should be sleeping

My older brother and I went to buy him a suit today. Frank, who has some variant of autism, is nearly 50. He focuses on European progressive rock, Beatles music, and old episodes of Twilight Zone, Emergency, and Gilligans Island. But in the last months of mom's life, he'd kept his earphones off and his TV at low volume. Since her death, he's been playing only tastefully subdued Beatles music, no prog rock. Frank doesn't have much of a sense of style. The last time he wore anything resembling a suit was at my dad's funeral seven years ago. When he pulled that old cashmere jacket out of his packed and dusty closet and held it up in the light, it looked like roadkill hanging from a fence. I told him we'd be going downtown, and he grimaced but was game.

At Men's Wearhouse, Frank looked over the suit jackets and whistled even at the sale price tags. "164 DOLLARS?!" he said in a loud whisper. "I'M NOT MADE OF MONEY!" "It's OK, Frank," I said. "These are really great-quality suits. We'll find out something cool." He had on his best Led Zeppelin T-shirt, some stained navy chinos and black sketchers. A salesperson bustled up, tape measure over his shoulder, and whisked Frank into a dark gray pinstripe that looked fantastic on him. Frank turned toward the mirror, leaned in and glowered, and practiced his best James Cagney. "You'll never get me, see?" When he tried on the pants, they bagged under his prodigious belly. But the salesman hiked them up to where they were supposed to fit, declared them to be proper except for the need for cuffs and suspenders, and proceeded to lay out shirts and ties for us to choose from. While Frank was making his selection, the salesman picked out some great shoes that fit Frank perfectly. I hate to flack, but I love that store. Then with Frank in front of a mirror, the salesman got out his ruler and chalk, marked up the jacket and slacks, picked out some suspenders, and away we went to the cash register. We'll pick up the altered garments on Friday.

Frank proudly paid for the jacket and slacks, declaring "I'm NOT keeping THIS suit in my CLOSET. I'm going to keep it in a much nicer place." As I paid for the shoes, shirt, tie, suspenders and alterations (it turned out to be an even split), Frank asked the salesman if he could wash his new duds in the washing machine. The salesman patiently explained the rules of suit cleaning, handed Frank the handle bag, and away we went. He treated me to lunch to mark the occasion.
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My family's friends have been lifelines these last several days. They bring by food now and again, or invite me over, offer to come help clean the house. Quiet lines of support, thrown accurately into the waves. It's different from when my dad died suddenly. Then, almost instantly, there was a neverending stream of flowers, cards, casseroles for his widow. But now there is no widow, only exhausted children, and friends who know that when the phone goes unanswered here, sometimes it's not because nobody's home, but because we just can't bear to pick it up. So they patiently try again, or they just come over with their broad shoulders and their kind eyes and they pick our spirits up and set us aright.
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I've wondered time and again why my mother had to die the way she did, why she wasn't granted a healthy life and a swift and painless demise. I think about my father's death--the night of Feb. 9, 2000, when the phone rang and the horrific news from the other end felled my life--and I compare it with the five-month onslaught my mother's dying was. I got used to her dying in increments, as she got used to incremental upticks in her morphine doses. At the end, she could tolerate a dose of morphine that might have killed her had she taken it six months before. And at the end, her death brought us relief rather than shock--relief that she was no longer suffering, and relief that we could get a night's sleep at last. I don't believe this was a gift; what arrogance that would be. I can't believe it was just a matter fate; how then could I have faith? My task, it appears, is to simply accept and to stop seeking a reason for the way things happened. But at night, when I'm trying to get to sleep, the question keeps recurring: Why? How did she deserve this? What god would allow this? All gods, it seems, as countless good people from all walks and all faiths die in misery each moment of every day, each time I breathe in, and every time you exhale.

My mom's obit

I was going to post the link to my mother's obituary, but don't trust the local newspaper to keep the link active for very long. So, here it is for those I didn't already email it to. I wrote it in New York Times formal style, though our local paper will run pretty much anything you give them. I also found out that now obituaries are no longer treated as news, but as ads. You pay by the word and by how many days you want the obit to run. Four days' worth was going to cost us nearly $1,000, so we did things the old-fashioned way and only ran it one day. That experience was eye-opening and made me feel kind of old, for some reason. But then, I've been feeling old for about three months now. I need a prolonged stay somewhere warm and secluded, so I can shed this shell of exhaustion and strain, and emerge revitalized.

Good news: I feel like writing again, so at some point in the next little while, this blog will go back to being a natter about writing, the benefits and downsides of writing groups, the devious things we do to avoid writing, and so on, in addition to including the usual menu of grief ramblings. Oh joy! Oh yeah, I logged on to post my mom's obit. Here 'tis:

Karys, Jevine

Jevine Karys, painter, jazz vocalist, restaurateur, mother of five and beloved friend, died Friday, April 20, at her home in Santa Barbara after a brief second battle with lung cancer. She was 70.

Throughout the last years of her life, Mrs. Karys was a prolific water color painter whose landscape and still life works adorn many homes in California and in Massachusetts. She drew her inspiration from historic scenes, whimsical groupings and floral displays, but also painted images of peoples’ homes upon request.

Born Carla Jevine Tidwell on March 8, 1937, Mrs. Karys was the daughter of Olive Naomi and Carl Clinton Tidwell. Jevine’s younger sister, Tina, was her lifelong friend. Jevine graduated La Jolla High School in 1955, married Howard B. Heath, and welcomed daughter Lisa and son Franklin. The Heaths were divorced, after which Jevine met and married her lifelong love Christopher J. Karys. They had three more children, April, John, and Christine.

During her teens and twenties, Mrs. Karys developed an enduring love of jazz, singing and dancing to the greats of the time. In her 30s and 40s, Mrs. Karys was a vocalist with jazz ensembles in Santa Barbara, and sat in with her dear musician friends’ performances from time to time throughout the rest of her life.

The Karyses reared their five children with love, discipline, respect and creativity. Mrs. Karys’ experiences cooking for her large family came into play later in her life, when she opened and ran Jevine’s Deli in three successive locations with family members helping to develop the menu and run the business. Later, she joined her husband in real estate, retiring upon his death in February of 2000. Mrs. Karys’ love of travel took her to Oregon, Washington, New Mexico, Massachusetts, Canada, Greece, France, Mexico, and lastly to Italy, where she journeyed just before her final diagnosis of cancer.

Mrs. Karys is survived by her sister Chris (Tina) Smith of Rifle, CO; daughter and son-in-law Lisa and David Karys-Schiff of Lompoc, CA; sons Frank and John Karys of Santa Barbara; daughter April Karys of San Francisco; daughter and son-in-law Christine and Jeremiah Sobenes of Oak View, CA and their children Chelsea Wilson and Emma and Eva Sobenes; niece Cristal Martinez and her husband Ric Lantz of Madison, WI; and nephew Eric Smith of Rifle, CO.

A memorial celebration of Mrs. Karys’ life will take place at 1 p.m. Saturday, April 28, at Welch Ryce Haider funeral chapel, 15 E. Sola St., Santa Barbara. In lieu of flowers, contributions may be sent to Hospice Care & Visiting Nurse of Santa Barbara, 222 E. Canon Perdido St.

Nowhere to be at peace

My boyfriend the hunky scientist has to go back to work for the week, so he left this morning. It's terribly lonely here without him, but he'll be back next weekend for the memorial. I'll be the emcee, so this week is going to be busy. I need to write my mom's obituary tonight--that's something I've been soundly trained in (journalism degree), so I have no qualms about it. I need to find something to wear. We need to pick out flowers, get music together, design and write the program, find and schedule a boat for scattering our parents' ashes, figure out how to have a private reception after the memorial (our house and our budget aren't big enough to invite everyone who attends the memorial over for a gnosh), and so many other things. What I really feel like doing is nothing. I don't want to speak to anyone; I don't want to do anything at all. It's a strange desire, this wanting to be more still than still, to empty my mind and feel nothing, to simply dissolve for a while and rest deep and tranquil, let the world's bustle spin around and without me.

The last hours

Here's what happened: My mom had been struggling to breathe, despite our dosing her with morphine and ativan. When we asked if she was uncomfortable she nodded, so we called for a Hospice nurse. He came late in the day, looked her over, and checked her vital signs. He told us her blood pressure was normal, but her lungs sounded pretty bad. He called in a prescription for liquid ativan and said we should give her that every 4 hours, doubled her dose of morphine and said we should give her that every 2 hours, and prescribed a scopalomine patch to help dry up the liquid gathering in her throat and lungs. Mom was barely conscious. She could tell we were there when we tended to her, but she couldn't respond to us very well. She was moaning on each exhalation, and her breathing was rattly and labored. She could only move her arms, and that with effort. The RN said she had only a week left at most--meaning she could go at any time. Mom loved life and had hung on through so many other rough patches that my sister, boyfriend and I figured she'd probably take it to the limit. We set our emotional watches for a few days hence and waited for the Hospice pharmacy to deliver the new meds. Throughout the rest of the day my sister and I kept our mother medicated and clean, turned her from time to time to ease her breathing, stroked her arms and kissed her forehead each time we went in to take care of her.

I had night watch. I was exhausted and knew I wouldn't be able to stay awake for the new medication schedule, so I decided to try to sleep for two-hour intervals. After giving Mom her 11:30 morphine dose I set separate alarms for 1:30 and 3:30, planning to piggyback them throughout the night and early morning until 7:30. I figured after that I'd be able to stay up. But I tossed and turned until 1:25, finally rose before the first alarm and went to check on her. She was still breathing loudly, but she was more relaxed. She was sleeping deeply. I droppered the prescribed doses of liquid medicine under her tongue, kissed her forehead, whispered that I loved her and that she was a wonderful mother, and said I'd see her in the morning. I listened to her gurgling breath for a few moments. Then I went back to bed and prayed, "Please take my mother now. I know I've been asking You to take her soon, but please, please, take her now." I hoped my father was near. After about an hour, I dropped into a dream. I was sitting on a beach that was clouded with mist and smoke. I sat among a group of people I didn't know. We all sat in a circle in chairs on the sand, with the haze all around us and unseen waves crashing behind my chair, and we had thick, hooded, woolen robes on. When it came my turn to speak, something woke me. It was my 3:30 alarm. It took a moment to clear my head, and the hunky scientist touched my shoulder to make sure I was awake and drowsily said, "Your mommy needs you to take care of her." I rolled out from under the covers and padded through the living room where my sister slept on the couch, through the dining room past the chugging oxygen machine, and through my mother's bedroom doorway. I looked down at her, and saw she was sleeping peacefully; the loud gurgling had stopped. I looked more closely, and saw that what had also ceased was her breathing. She'd taken very long pauses between breaths before, so I held my own breath and waited. She didn't inhale. I let my breath out and kept my eyes on her chest. It didn't rise. Relief and pain, happiness, gratitude and more pain flooded through me, and I sat down in the chair beside her bed and looked at her quiet, peaceful face. Her eyes were closed. Her mouth was slightly open. She wasn't struggling anymore. I still couldn't believe it fully, so I reached for her wrist to check for her pulse. Her arm and hands were very warm. Where before her pulse beat regular and strong, there was stillness. She was gone. I'd never touched someone who'd died, but I felt nothing now except tenderness. I slipped her hand back under the sheet and smoothed it above her, and sat for a few moments more. Then I stood and looked down at her, bent to take the oxygen tubing away from her face, then kissed her forehead one last time. I closed my eyes and thanked God for taking my mother away from her torture room of a body, touched the picture of my father that sits on my mother's nightstand still, and went to wake the others.

Aweigh and away

This morning at 3 we stood along the shore, holding our handkerchiefs aloft and waving, waving white goodbyes. My mom stood at the rail of her ship, breeze gentle in her hair, her eyes bright for the horizon.

Carla Jevine Karys
3/8/37 - 4/20/2007

Distractions

I don't know anyone who's going to have a baby anytime soon. Nor do I know anyone who has a newborn. I'm not pregnant. And yet, I have been knitting cute little cotton caps, infant-sized. I made a yellow one with a green tie, a green one with a yellow tie (gave that one away), and am halfway through a blue one--haven't figured out what color tie it will get. Then I'll make a multicolored one with the leftovers from the skeins.

An unrelated weird thing: Yesterday when our Hospice home health aide showed up, she said "Nice rabbit," in her cute Ukrainian accent. "Rabbit?" we said "Nadia, are you OK?" We looked outside, and sure enough there was a black-and-white rabbit in the driveway, wiggling his nose. I spent a half hour chasing him, stalking him, trying to lure him with a carrot, but he eluded me. Finally, after trying in vain to get him to come out from under my car, I gave up and left the carrot, went inside and nearly forgot about him. Late in the afternoon, he came back--no doubt to see if the magic car would dispense more fresh produce. I got another large carrot, held it out for him, and nabbed him when he got close enough for a chomp. We kept him overnight in a cat carrier, filled him up with spinach, carrot, banana, and compressed pellets of alfalfa, and watched him do cute little bunny things. Now he's on his way to BUNS, a rabbit rescue place out in Goleta. Rabbits are captivating. If we didn't already have one cat and two parrots, I'd have lobbied the hunky scientist to take him home and make him a house bunny.

Mom is having a hard time today. She's not really aware, and she's breathing very heavily (kind of moaning on each exhale) despite doses of morphine and ativan. We're taking turns sitting with her.

Morning thoughts

As of yesterday, my mom can no longer leave her bed. She can't sit up on her own. She rarely drinks more than a sip of water or protein shake, and her body is using its own tissue for energy. It's decommissioning itself. I've always known we are just inhabitants of our bodies; it's just what we are driving now. But I've never been shown this concept so clearly.

Over these past weeks, I've been looking at slides and photos of my mom as a baby, a girl, a teenager, and as a new mom in her 20s. I wish I could know what she was like then. I know she was different than she was in the years I've known her--we all change so much over the time we're alive. And so I wonder: What was my mom like as a little girl? In what ways was she cute? Obnoxious? Was she girly or a tomboy? And what was she like as a teenager? Was she sullen or vibrant? What did my father see when he first beheld her across a crowded restaurant--what spark? How did she talk, and what were her favorite places to go? What brand of makeup did she wear, where did she hide her diaries? Where are those diaries now?

My older sister tells me she remembers far back into her childhood, back when Mom was still married to my sister's father and they all lived in Salinas. He didn't contribute his money to the household, so to keep her two youngsters' diets healthy Mom used to park her car by the roadside late at night, on her way home after she'd finished her work shift, and steal vegetables from the fields. Later, when she could afford to buy everything in grocery stores, she'd get what was on sale. It took her until I as in my 30s to be able to consistently buy what she wanted, rather than what was discounted. It wasn't that she was poor; it's just that she finally relaxed.

My sister's theory about why my mom is lingering is that she finally gets some time to just do nothing. She doesn't seem to have unfinished business with anyone, nor we with her. But now she doesn't have to worry about how she'll feed her children, how she'll keep a marriage together, make the mortgage, deal with teenagers, keep a business running, get her roof patched, car fixed, cats vaccinated, carpets cleaned, paintings framed. I don't know about my sister's theory--this is a helluva way to get some down time. I think my mom would much rather have gotten another trip to San Miguel or Italy. Who knows: Maybe she's there right now in her thoughts. What I'm sure of is that she's ready to be away. And so we help her prepare for her journey, and we wait, handkerchiefs ready, to wave her away from the shore.

Waning light

It's late afternoon, and Mom has been awake only once today. She wasn't really responsive during that time; she seemed to be somewhere else entirely. But she did manage a slight smile when I told her she was pretty, so I know she hears what we have to say. Our hospice volunteer came over for two hours, as she does each Tuesday and Thursday. She did some reiki for mom, then just sat quiety with her, drank tea, and read while I ran some errands. When I got back, she told me that Mom's energy is very low, but that she is very peaceful and comfortable. She said that mom's muscles are flaccid because she's entered ketosis. The cancer and Mom's body are using muscle for fuel. The volunteer, a gentle young herbalist, said that Mom may have one more lucid period, or because she'd already had that time with us, she may not, and that she could keep on like this for a few days or as long as a month. I don't see how she could last a month at this rate. She's only had three eyedroppers full of water today. And yet she seems at peace, which is a blessing for her and also for me.

Mind games and solutions

My mom has been asleep all day. She hasn't wanted to move, drink much water, nor eat anything. I've given her pain and constipation medicines by straw, by mixing them with chocolate Ensure shake. As I've worked today in her office, I've had the baby monitor on, listening to her breathe and keeping a sharp ear for telltale signs that she's awake. She has not been. This all seems so unreal at times. My mind circles around a core series of questions: Shouldn't I try to get her to eat something? Drink something? Am I coldhearted to just sit here working while she's in there heading toward her end? What can I do?

The answers are: No, I shouldn't get her to eat something if she doesn't want anything to eat. People who are dying naturally refuse nutrition. Now is not the time for fueling the body, but for fueling the spirit for transition. The spirit does not require calories. No, I should not keep pestering her to drink water. People who are dying actually do not process water very well. Dehydration actually produces endorphins which make pain management easier. Pestering her into drinking water will actually cause her discomfort. No, I am not coldhearted for sitting here while she lays dying. I'm leaving her at peace, which she's asked for. She's tired of being pestered all the time--being turned, medicated, cleaned, changed, questioned, bothered. Letting her sleep is a kindness. What I can do is to take deep breaths and accept. What I can do is try and get a nap, so when she does awaken and need me, I can be there for her. What I can do is remember my love and find my center when anxiety, frustration, fatigue and despair come wraithing round me.

A vase of persimmon-colored tulips sits on my mother's bureau in her room. We placed it, pennies in the water to keep the flowers' stems from bending, before her lace-curtained window so the delicate orange cups would catch the afternoon sun. They glow now, in full bloom there on the scarred, dark wood. Tomorrow their petals will begin to fall; we'll gather them to scatter outside in the garden; and soon the memory of their singular color and vim will be all that we carry with us.

Back in my hometown

I came back to Santa Barbara two nights ago, just in time to witness another step in my mother's descent. She was sleeping heavily when I arrived and didn't awaken until around 11 that night, when she needed to use the bathroom. When my older sister and I tried to lift her, she was a ragdoll. Her muscles were so weak that she couldn't hold any percentage of her own weight. We hadn't set up the bedside commode, so it was a difficult few steps to the bathroom and then back again. Lesson learned. She's only getting up once every 18 to 24 hours now, but she gets restless now and again and needs help sitting up and staying up once we get her there. I just sit in back of her and put my arms around her. And she needs more morphine, which means she's a lot less lucid. But she did have two visitors this morning with whom she was able to talk briefly: a longtime family friend, L, whose arrival sparked the first smile I've seen from my mom in a long while; and P, mom's favorite friend from the bereavement group she joined 8 years ago after my father died. P is the newly named poet laureate of our city. She brought a beautifully written card and a book of poetry (not her own). All Mom's close friends are showing up now. They all know they need to see her now, while they can, and say what's in their hearts.

I'm glad to have had the weekend to get used to Mom's new care needs. She may be in bed more, but this means we have to move her more. Her muscles are completely flaccid, so moving her takes a lot of work, and usually it takes two people. My sister recognizes this, and has decided to stay with me--although she wants me to ask the Hospice people how to move Mom on and off the commode more easily by myself while also managing her pull-up protective briefs. It's near-impossible. I'm pretty sure the nurse or health aide will recommend we just make the switch to full-on adult diapers, which of course we're not looking forward to. I hope my sister stays with me. I don't feel up to facing this alone right now.

Growth within the void

My brother spent most of his life at odds with my mom. The dynamic began when he was a very young boy, became entrenched, and shaped both their lives. These last few months have been a growth time for him as he's come to terms with losing her as a pillar to orbit, a source of nurturing, and a habitual target for resentment. Sometimes a stone must be removed for seeds beneath it to receive light and germinate. The leaving in this case was my mother's maternal ability, and my physical presence as a caregiver. My brother had been relying on both and when they contracted, a space was left in which a nobler person could unfold. Tzimtzum, and there began a world. We spoke this morning and his voice sounded ragged.

"Yeah," he said, "she's resting all comfy now. I figured out her meds and we have it to where she only needs morphine drops every once a day or so. It's great." He was proud of himself, full-hearted that he'd learned to check every 15 minutes or half hour to make sure she hadn't brushed her oxygen line aside; that he'd learned to hold a basin for her so she could brush her teeth in bed; that he could help her to the bathroom and back, that it could be embarassing, but it was OK. Before, when it came to personal care, my brother said he couldn't do it. "I just can't," he said emphatically. "You will," I responded, "When you realize it's only you, and it's got to be done." "No," he replied. "I can't." I told him that in that case, it was up to him to find someone who could. But now, "I can't" has been replaced by "Look what I did for her; look what I know; she's OK and I have everything taken care of." When I call, even just to say hello, he lists the care he's given, the ways he's handled guests and calls, what Mom has eaten, how she feels.

"We got her up and into her wheelchair, and she wanted to sit out and look at the side yard," he reported this morning. My mother's peaceful, shaded side yard is afroth with fern beds pierced by spears of orchids. "She sat there for a while, talking softly to someone we couldn't see, and then she said, 'OK, I have to go now.' I asked her where she had to go, and she said 'to the hospital.' So I got her back inside and put her to bed." There was a pause. "This is breaking my heart. I'm going to need to see a counselor soon." I told him I'd already sought one up here, and reminded him of Hospice counseling services. We talked about knowing we're doing the right thing, the most difficult though uplifting thing. "It's the best, most loving thing we can do for her," he said. "It's the best and the hardest thing we've ever done."

I see my sisters growing in similar ways, reaching deeper and becoming greater than they thought themselves capable of. Before, we were soft metal forms, shaped but not hardened. Now, forged, these days with our mother are honing us. Our mother is retreating and in her leaving she reveals to us a different place for our hearts to dwell. The steel we're becoming will be our strength as we move forward, together, on this new ground.

Waiting for a ride

My sister and brother have stepped up to the plate admirably with my mother. They care for her tenderly--my brother has even lost his squeamishness about taking her to the toilet. He jokes with her that they are dancing, rather than lurching together across the room, and when she steadies herself on furniture or doorframes, he admonishes her for doing the leading. My sister spent the night with mom the other evening, holding hands with her through the still hours. Every now and again, they'd wake up at the same time and say hello. At 3 a.m., my mom wanted to get up, and afterwards as she sat on the bed to rest, my sister asked if she wanted to lie back down. "No," Mom said. "I'm ready to go." "Go where?" My sister asked. "To the Big Guy in the sky," Mom replied. "As much as I love you kids, this is just too hard. Do you know anyone who can come and give me a ride?" Lisa sat down with her and gave her a long hug.

It's a relief, in a way, to know my mom is OK about going. I wouldn't want her to be afraid or resistant, because that'd just make it more difficult and more than anything I want her passage to be peaceful.

A better day

Sleep: soother of most things. I feel a good deal better after another solid night of shut-eye AND a phone chat with my mom. She was lucid again this morning; enough so to get up and tell my sister, "I really need a cup of coffee." When I called, she was sipping java; my aunt (who's visiting this week) was making her a bowl of strawberries and milk; and my sister was practically jumping up and down with happiness. She handed the phone to Mom and we talked about everyday things: what I'm doing this weekend, whether her sister's dad was out of the hospital yet, how the morning was going, the possible whereabouts of a silver ring she's misplaced. We ended with our usual I love you's, and I felt like my morning had been limned with gold.

Today, along with my work duties, I must attend to my bill-paying. Most of it I accomplish through automatic payments. But there are a few that I still take care of manually, and they've gone by the wayside. Time to eliminate those stressors.

The hunky scientist and I are going out for an extravagant meal tonight at a restaurant he heard about. Appetizer through dessert, it's going to be a heck of a bill. But we haven't had that kind of a date in a long time, and we're due.

Gray dawn

I learned when I was a little girl that it's bad enough when something falls on your leg, but what's worse is when someone lifts it off. Circulation is restored, and that's when the real pain begins.

Last night the hunky scientist and I ate wonderful vegetable curry from our favorite little local hole-in-the-wall and drank champagne and partially caught up on Battlestar Gallactica, my guilty geeky only semi-secret TV delight. I'd had a haircut in the afternoon, picked up two new sets of glasses that had come in (note: glasses that I actually am looking forward to wearing in public. A wonder.), come home and played with our little gray parrot. It's so good to be here doing normal homey things with the man I love. I slept deeply from 11 p.m. to 7 a.m., no ear open toward a monitor; no waking up multiple times to help anyone with anything. Despite two and a half cups of coffee, I am exhausted. I have a full day of meetings to attend and all I want to do is lie on the couch and doze with our cat. I miss my mom. I miss our old life. I miss being able to go home just to visit both my parents, and I'm still struggling a little against the idea that soon I will have no parent at all. It makes me think of a blue balloon let loose from its anchoring hand. I feel immobilized and shattered and I wonder if my pieces will all fit back together OK.

The giftof a day

We put Mom on a new pain relief system last night since she was having trouble swallowing pills. At 9 p.m., I pressed a Fentinyl patch onto the skin of her waist and held it tight to make sure it would stick. It's a 50 milligram patch--very strong--and I'd been advised to watch her closely for the first night, to be sure her breathing didn't slow to dangerously spaced intervals. I stayed up until 1, then went to bed. The patch had put Mom into a deep, relaxed sleep, and her breathing rhythm was regular and normal. I expected she'd sleep through the night and awaken in the hallucinotic stupor in which she'd spent most of the last week.

This morning at 4, I awoke to a sound from the baby monitor; my mom, coughing rough and deep from her chest. I got up and padded to her room, opened the door and peeked in. She was awake, and recognized me. I asked how she was doing. "I'm fine," she said. "How are you? Did I cough too much?" I assured her she hadn't, that I was just coming to make sure she was comfortable. She fidgeted with the blankets and stared, glassy-eyed, across the room, trying to move her legs. "I have to go to the doctor. But I have to go to the bathroom first. Hurry; we're late." I moved to help her up, but she resisted. "Honey, you're in my way. I can't fool around--I have a doctor's appointment." I decided to enter her world. "Which one, Mom? Dr. Gillon? Dr. Sweeney?" "Gillon," she answered. "Ahhhh," I said, then paused. "I checked the calendar. Your appointment isn't until tomorrow." She stopped trying so hard to move me out of the way. "Oh. Well, I still have to pee," she insisted. I groaned inwardly, desperate to dive back into sleep. The next half hour was taken up with the bathroom shenanigans I described in a previous post. Once I had her back to bed, and in fresh clothing, I turned to pick up some fallen kleenex beside Mom's bed.

"What's wrong with me?" She asked. I walked the tissue over to her wastebasket. "Oh Mom, you've been so sick," I said, thinking a short answer best since she wasn't her reasonable self. "I know," she said, "But what's wrong with me?" Something in her tone stopped me. It was clear, assured. Familiar. I turned around and saw that my mother had come back. I went and sat beside her and took her hand. "Oh Mom. Remember, you have cancer. That's why you've been so weak and so tired."

Understanding swept over her, and she began to weep. I've never seen my mother openly cry. Now and again while I was growing up, she'd hold her hand over her eyes momentarily, or I'd see a tear track down her cheek. But sobbing? Never. And never about her illness either. No matter how grave it got, she always had a feeling she'd beat it. But this morning at 4:30 a.m., she heard again and with open ears what her oncologist had told her. She knew and she accepted and she sobbed, mourning for her life. I cried along with her, rocking her in my arms. I told her I was sorry it was so hard, but that we were there for her. That we'd miss her terribly, but that we'd be OK, and that she would be OK, too. "Oh honey, I love you so much," she said, sagging against my side. We sat this way for a while, until she began to tremble from the effort of sitting up. I helped her lie back against her pillows. "It looks like you're getting sleepy, Mom." Fresh tears: "I don't want to go to sleep." I realized what she meant. "Mom, you have a little while yet to go. If you go to sleep now, it will be just sleep. You'll be OK. Do you want me to lay beside you?" I saw her relax as she said that would be nice. So I went back to my room and got my blankets, spread them on the bed beside her, then crawled in and lay on my side with my arm over her, daubing her tears with a kleenex. She told me she was thinking about her life, that she was trying to remember which was the last painting she'd made. My mom's paintings hang in homes all over Santa Barbara County. Neither of us could remember which was the last one she'd painted.

I've often thought that it's a good thing that we never know while we're doing something that it's the last time we'll ever do it. We never know if it's the last jog, the last trip to our favorite Vietnamese takeout place, the last kiss we'll ever share with our mate. And that's a blessing. The last time I walked with my mother outside, we just enjoyed the sunshine and the people we stopped and talked with. We lived so fully in each moment of that beachside outting. If we'd known it would be our last, the time would have been marred by the pall. Whatever that last painting was, my mother lived in the flow of each brush stroke.

As I lay there with my mother, both of us trying to keep our eyes open, I wondered if when I woke up in the morning she'd be back to being a zombie woman. But at 7:30, she woke up and the veil was still aside: There lay my mom, lucid again, and in no pain. My brother arrived and was beside himself with joy. "Mom! You're back!" She chuckled. "How long was I gone?" We filled her in. She asked how long she has to live, whether we'd talked about her memorial. She agreed with everything we'd thought up (which wasn't much to that point). She asked for and received a hot mug of coffee with milk. "Are you still seeing Dad?" My brother asked. "No, not out of the corner of my eye like I was before," she said. "I did see him while I was gone, though. And he was angry that I wasn't where he wanted me to be. He said it was taking a lot longer than he thought it would." We shared a wry round of laughter over that one. It was time for me to go. I'd packed the night before, while Mom was still in her zombie state. Now, with her in our world again, it tore my heart to leave. A week seems like forever if you're not sure your loved one will be lucid when you return. But my brother and sister need their time with her, too, and I need some time to regenerate. And so I left. During the five-hour drive home, my brother called twice to tell me Mom was still her old self. As for me, I called our Hospice RN. He said that it looked like her hallucinations and stupor were caused more by sensitivity to the oxycontin than by the cancer invading her brain, and that now that we've banished oxy from her med list in favor of fentinyl, there's a good chance my mom will remain clear-headed. I won't cling to that hope, though it's tempting. I'm learning to greet each day free of expectation, then negotiate each pitfall or savor each gift in its time.

The angel of dope

Tonight I came home from a peaceful dinner with my older sister and my brother-in-law just in time to give Mom her 12th-hour pain med dose. My brother knew what time she was due for it, but hadn't given it to her (he'd also dodged giving her the liquid laxative she needs for pain-med-induced severe constipation). So I woke Mom, elevated the head of her bed, told her we had some medicine for her to keep her back from hurting, gave her the pill and then tried giving her the usual sip of water. She refused to sip and started chewing instead. No amount of coaxing or ordering could get her to sip water either from the bottle or through a straw; she just kept chewing and grimacing because of the bitterness. Great: 40 milligrams of oxycontin straight into her system. My brother wigged. He kept insisting I call Hospice to find out what happens when you chew up a 12-hour time-release pain med. Finally I glared at him and said "Fine. _I_ will call Hospice." I get so flipping tired of my siblings tossing back to me the heavy caregiving weight. He got the picture and punched the number. A nurse called back after a while and he talked with her, then conveyed the following:
- My mom will be really high for a few hours.
- Her breathing may be slowed way down, but probably won't be stopped.
- The med will wear off faster than normal, in 6 or so hours rather than 12.
- At that point, she can be dosed with 5-mg oxycodones til her pain is managed.
- Probably starting tomorrow we'll have to start her on liquid pain relief.
- This will mean an even sleepier Mom (read: She'll sleep 98% of the time rather than 90%)

My options are these:
1. I can attempt to sleep in my usual room, with one ear cocked all night toward the baby monitor. Probable outcome: no sleep and restlessness.
2. I can attempt to sleep in my snoring mom's room, in the queen bed next to her hospital bed. Probable outcome: no sleep and high frustration.
3. I can forget about attempting to sleep, stay up and watch bad sci fi, and check on my mom every hour and a half or so to be sure she's still breathing. At 3 a.m. I can check her pain level and at some point between 3 a.m. and 6 a.m. try to get some oxycodones into her (good luck, sucker, because she'll probably chew those as well). Probable outcome: no sleep but the satisfying buzz that comes from high volumes of bad sci fi.

It's not going to be a great night. I'm not happy about the likelihood that my mom will henceforth be taking liquid pain meds, which are morphine-based and have all whole new bunch of side effects for her and us to deal with (not the least of which is, as I mentioned, the All Sleep All the Time show). I wonder if perhaps I should have tried to wake her up a bit more before I gave her those pills tonight, if maybe then she would have known to swallow them rather than chewing them up. Damn. She's extremely sedated now, sleeping so deeply that her breath is growling in her chest. I wonder if the briefest of meaningful exchanges I had with her today were the last we were destined to share.

I forget when I stopped praying for my mom's recovery and started praying that her doctors would be able to manage her disease. I don't recall when I segued from that to praying for her comfort. But I do know that two nights ago I started praying for God to take my mother swiftly, because this way out was always her nightmare.

I wrote about being tired of my sibs dodging the medicine ball of caregiving rather than taking it up in equal measure when I'm here. The only way to get them to step up to the plate is by leaving. The Hospice RN said this morning that my mom has a few weeks of life left, and so I've decided to go home for a week or so starting day after tomorrow. My brother and sister know our mom needs 24-hour care. And they know what that care entails. I need to let them deal with it for the next little while, let them shoulder the escalating care level, let them be here when my mom needs diapering, let them deal with it all, all the time, and face it fully. I hope I'm not making a mistake, as I so want to be with her when she dies. But I desperately need a break. I'm depleted. I need to sleep full, long and deep for a long while, so much so that I almost envy my more overdosed mom.

The dying get no privacy

My boyfriend the hunky scientist was here for the weekend, and it made a huge difference to my peace of mind. With my sister sick all of last week, I'd had no support here and I was depressed and supremely overtired. My sister felt better enough on Friday to come down for the day so THS and I could go do normal things for a little while. Also, she cooked a really good dinner.
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A Hospice RN was here on Friday morning and saw how we were having to sit in back of Mom to prop her up in her bed whenever she wanted a drink of water. We'd just started having to do that, so we weren't really thinking about it much. She said "You should think about getting a hospital bed. I can order it right away." I was sentimental about Mom dying in her own bed for about 30 seconds, and then said OK. That afternoon a delivery truck showed up and a hospital bed was moved in next to Mom's bed in less than an hour. It has an air mattress on top of the regular mattress, and the air mattress inflates and deflates in different sections continually to keep Mom from getting pressure sores. Handy that.
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Mom's brain function is really suffering from the cancer invading her head and from the 90 milligrams of oxycontin she's getting every 24 hours. She's starting to make less and less sense (about 5% of what she says is actually related to what we say to her), and the gatekeeper is taking a holiday. This morning she told me I was full of shit. I took it in good humor. I just went to wake her and give her a swig of water, and she said "Oh hi! I'm on the phone with my sister." I apologized for interrupting and told her I'd be right back then.

One area Mom still had some independence in until recently was her bathroom habits. She still wanted to walk the few steps to the bathroom just off her bedroom and she wanted privacy in there (of course). So we'd been helping her walk there, getting her situated, and then leaving and closing the door. She'd always just done her thing and then come right back out. But starting Friday that changed. She started forgetting how long she'd been in there. We did our usual thing, but then after 15 long minutes I walked up to the door and said said her name. "What!" She replied. "Are you OK?" "Yes--I'll just be a few minutes." 20 more minutes went by, followed by another inquiry and another rebuff ("April, stop bothering me. Go use the other bathroom!"). Of course, my boyfriend had just arrived so he got to witness this new care wrinkle unfolding in real time. I let 20 more minutes go by. "Mom?" "WHAT?!?" "Mom, you've been in there an hour." "I have NOT! Now just go away and leave me alone." That was it. I apologized, then opened the door, swooped in and got her up and out of there. I did not rate high in her esteem at that point. Every bathroom break since then has been the same routine, only now we give her 15 minutes tops, particularly if it happens to be 3 a.m.. If it's daytime and we're feeling indulgent or want to finish a chore, she gets 20 minutes. Heck--she's just sitting there. With side rails. She's too weak to do the standing up it would take to fall over. But after that, we sally forth and endure her anger. It never lasts long.

Measurements

My mom and I sat last night reading catalogs: she had Pottery Barn, I had J. Jill. She was exausted and fuzzy-minded, and it was taking her a long time to get from page to page. I noticed she was staring at a single spread on window treatments for quite some time. Presently, she lifted her gaze and settled it on Ringo, one of her kitties, who lay on the automan where I sat.

"So...if I take the length of the cat, by the area of the rug, by the depth of the window casing, I'll get..."

"What'll you get, Mom?"

"A square cat."

Talking with the unseen

My mom's meds, or her metastases, or the dying process have resulted in her seeing people out of the corner of her eye. Sometimes it's the same person as the one sitting in front of her. Other times, she thinks it's someone else.

"It just happened again," she said tonight as we were chatting after having had bowls of oatmeal for dinner. "I saw someone, just over there." She nodded toward her left shoulder. I allowed as to how that must be a little disconcerting. "Yes," she said, "But I don't think of it as a bad thing. I keep thinking it's your dad. Or maybe Thia Dimitra."(That's my dad's aunt--"thia" means "aunt" in Greek. Dimitra was my father's true guardian angel, a blessing of a woman who died years ago.) We spoke lovingly of Thia for a moment, and then Mom said, "I saw her just today when I was leaving the living room. She looked at you, and then back at me, and she said 'What are we going to do with out her?'"

My mom gets lonely at times, I can tell. Tonight as the wind scoured branches against the house, she said "If you get scared, you can come sleep with me." "OK," I replied. Then later, just as she was sliding under the covers, she said "Are you sleeping in here, or out there?" I was restless, wanting to write and tire myself out enough to sleep. I know if I slept in her room, I'd just stay awake all night listening to her breathe. So I told her I'd sleep here in my old room through the night, then join her for a nap in the morning before she gets up.

A better day for Mom

It was a pretty high-energy day, relatively speaking, for my mom. I'd asked her Cancer Center counselor to come and visit with her, and Mom had written down her appointment as 1 p.m.--but the therapist (a wonderful woman) showed up at 11 a.m., right as the Hospice home health aide was showing up for an introductory visit. I got Mom up, and the aide kept asking if she wanted a shower so finally Mom said "sure." And that's how we got her under some warm water and soap suds for the first time in a week and a half. She hadn't been ready for help before. Afterward, she said it was nice--that she didn't really need any help, but it was nice. The home health aide said that she's a licensed massage therapist also, so Mom has it made. Then today, a Hospice volunteer called and said she'd love to come once or twice(!) a week to give my Mom some Reiki and hang around in case I wanted to go run errands. She's coming for an introductory visit tomorrow morning at 10. Another friend of Mom's, a very long-term friend, showed up also. She hadn't been by since November; they'd just chatted by phone. Mom really got up a head of steam to visit with her. She got up and made her bed (her friend is very neat and proper), and asked me to put out tea and cookies. They exchanged late Christmas presents, and Mom took her into the kitchen to see the new stove that'd been installed since her friend was here last. They visited about an hour. For both visits, I left Mom alone with her friends. These are prescious times; they don't need me hovering through them.
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Mom only had time for 2 naps today, so right now she's on a longer one. In 15 minutes or so I'll wake her up and see if she wants some oatmeal or cream of wheat or something similarly soothing.
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I read in a book about the death experience that soon before someone dies, they typically have one ore more rally days, during which they can seem almost like their old selves. Today's sweet gift of energy and alertness might have been that day for Mom. On the other hand, it might have been the gift of correct pain meds. The long-acting oxycontin makes for fewer spikes of pain meds in her system, which makes for longer bouts of lucidity and wakefulness.

I got my mom back, for a little while

Here's the text of an email I just sent my aunt:
"Mom had a really good morning. She got up around 7:30
wanting coffee and breakfast, so I gave her pain meds
first, then some coffee and she read the paper with real
concentration (something she hadn't really done in a few days). I
gave her her usual morning meds with some reservation,
but she wanted them, as she hadn't taken them
yesterday. About 45 minutes later we had breakfast--I
made a fruit medly and gave her some pumpkin pudding
I'd made to try and get her a bit more regular. Then
she took her prednisone, ate a 2nd half of English
muffin, and read the rest of the paper. The
long-acting pain meds really leave her mind more
clear. It was a really nice, normal morning. But then
a little while ater she ran out of energy and went to
bed, but not before having to hit the bathroom quickly
because of an oncoming vomiting session. Sigh.

I just talked our Hospice RN. He says I
shouldn't worry about giving Mom her regular meds,
just her pain meds and laxatives (because pain meds
cause constipation). I'd already been leaning in this
direction, since the other meds just seem kind of
cruel to insist on at this point. I asked him to be
candid with me about exactly where the cancer is in
her body, since I know it's in her lungs and lymph
system and wanted to know where else. He said it's
also in her spine and brain. Which I'd suspected also.
He says that's why she's declining so quickly. He
agrees with me that she probably has little time; I'm
thinking maybe 2-3 weeks, 4 weeks tops, and he said he
never knows for sure, but that sound about right.
Hospice is going to send a home health aide today to
show me how to give Mom a shower and do other things
that can make caregiving easier. Mom doesn't want help
from a stranger in the shower, so that's why I'm just
asking for tips. The aide, a woman from Russia, will come
3 times a week to help us. Also, they're sending someone
twice a week to do light-touch massage/Reiki. That'll be nice.
So that's the news for today. I'm sorry to have to
send it.

I love you,
April

Who are you and what did you do with my mom?

This morning my mom walked to the livingroom this morning from her bedroom--it's a small house so the distance is short--but it was too much for her and she needed to rest at length on the livingroom couch. So I brought her tea there instead of to our usual spot in the dining room. She sat and looked through a magazine and sipped her tea and stared at length at the carpet. By and by she said, "Oh...(sigh)...I just wish I could go to sleep, and wake up, and feel good." When she says things like this my throat closes up and I have to fight my emotions back into control. I said, "I know, Mom. I wish you could, too," and I gave her a long hug. After that, she needed to go back to sleep. She is so exhausted and space-out most of the time that she doesn't seem much like the mom I've known all my life. She stares off into space a lot. Or she'll page through the damndest periodicals (TV Guide, my sister's Tack and Tog catalog, etc.) and scrutinize the text as though it's the most fascinating thing ever. I think it's because she's trying to make sense out of typewritten words, a thing of this world, when she's on her way to the next world. Now and again she'll be my old mom: last night she caught me scratching a mosquito bite and said "Let me take care of that." She examined it closely, then said, "No--it doesn't need a band-aid." Or she'll quaver out the melody of jazz standard. She can still sing, though she can't hold a note, this woman who used to captivate audiences. My old mom. I just want her back. It's so trite to say it, but I feel it so deeply: I just want my mom.
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My dear and longstanding friend L. came today to sit with me a while. She came bearing daffodils, one of my mom's favorite spring flowers. She lost her mother recently to cancer, and so she knows what I'm going through. Just her silent presence makes me feel better, particularly now when I feel so isolated and I yearn for company. L. is familiar with what's been going on, and she knows what's coming, and somehow she knows just what to say to me, because she's been there and felt much of what I'm feeling. We went shopping for groceries together, and I felt better afterward doing something chummy like that. Now she's gone and I have a chicken in the oven baking with garlic and lemon and some fresh rosemary from the garden.

Thoughts and updates

I think it's odd that societally we have no training for helping our loved ones when they're dying. I mean, we're prepped thoroughly for puberty, marriage, childbirth. Some people may disagree, but culturally speaking those things are talked to death. But when it comes to dying, and caregiving for those who are dying, there's a huge silent hole in the cultural fabric, at least in this country. If we don't die suddenly ourselves, then at some point most of us have to grope our way through learning to be a nurse. We learn to manage medication lists and logs. We give injections, learn about medical equipment, lift and carry, keep our loved ones clean and comfortable. We watch closely for new symptoms, and we jump to address each one. Along the way we become counselors for ourselves and our siblings and our friends who feel helpless in the face of our struggle and for the friends of our loved ones who feel helpless in the face of death or guilty for not having visited before and so reluctant to visit our friend-deprived loved ones now. We pet these friends of our loved ones, soothing their consiences so our loved ones will have visitors. When the visitors have gone, we dispense more medicines, and quickly, while our loved ones are sitting rather than lying down, we change their bed linens and start another load of laundry. There's Hospice, but hospice so far has not done any training of me beyond handing me a folder full of info about their services. I may sing their praises later, but right now al they're doing is supplying my mom's pain meds--and I'm not even sure they're supplying the right ones. Sure, these meds are keeping my mom's pain at bay. But they leave her crushingly exhausted, dizzy, and confused, not to mention hallucinating. Everyone just nods and says this is to be expected--and yet each piece of literature I've read on effective management of cancer pain says that these symptoms shouldn't be constant if you've been prescribed the correct medicine. I'll be discussing that with our RN tomorrow when he visits. I promise I'll be nice, despite my current ire. The thing is, the medical people are the ones who have all the knowedge of what's to come, and despite repeated questioning, they won't give solid answers. I'm almost positive they know how long my mom has to live, based on her extensive medical history and what they've seen of her so far. After all, my mom's about the zillionth lung cancer patient to come down the pike--even though her cancer is a rarer kind. But will they even ballpark it for me? No. Will they tell me what to expect and approximately when? Not so much. Are there any books to read on that? None that I have found. So I keep stumbling through each new development, hoping I do the right thing.
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A year and a half ago, when my then-14-year-old dog started failing, I'd discuss each new breakdown with my mom: Koka's kidneys were starting to go, so I'd need to give her additional medications and alter her diet. Gradually, I and my boyfriend needed to start taking Koka outside every 3 hours to pee. The meds associated with renal failure make you have to go like that. Then her heart started to weaken, and she started having seizures, which meant more meds. I had to watch her for med interactions, and establish a schedule for when she could take which pills, based on which to give with food and which on an empty stomach. I took that dog to more vet appointments than I can remember, was her advocate, worried over her and fine-tuned her care. One day my mom joked with me and said, "This is all training for when you have to take care of me." The sad and bitter pill is that she was right.
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For the last week I've been watching my mom steadily decline. She's been sleeping a lot more, and eating a lot less. Until today--that is, tonight. She slept just as much through the day, but then perked up at dinnertime. She ate a small helping of dinner, but a big one of dessert. And then she sat up and watched bad television with me for an hour and a half. True, she was zoned out from the pain meds and found WWF wrestling and Spanish-language television fascinating (when she was healthy she scorned these with utmost scruple). This, plus the fact that she's hard of hearing made our television viewing a bit of a challenge for me, as I'm supposed to be cherishing each moment we have left together, and one really should not wrest the remote from a terminally ill mother's hand. Halfway through the 10:00 news, she said "Didn't you tell me yesterday that you had a bread pudding for me? I love bread pudding." I produced it with haste, along with a cup of tea, and she downed it promptly. Thrilling! I don't know what to attribute this change to, but I sat back and marveled at the joy of having an more-or-less ordinary night with Mom.
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It pays to be sick in a family full of cooks. And because our mom has fewer and fewer days to be with us, we've all rallied around the cause of giving her as many great-tasting meals as possible before she dies. I kid you not. Four days ago, my brother brought over a lobster and 6 king crab legs. Mom ate a whole half a lobster, which is one of her favorite things, and a few bites of French bread, but not a bite of the side dishes. Two days later I made a crab salad with my sister's excellent homemade thousand island dressing, and Mom mowed through all the crab meet, some of the veggies, and all the hardboiled egg--leaving most of the salad greens. Being a foodie with a disease-limited appetite has forced her to set her priorities at the meal table. She eats the good stuff. Tonight, John came over and we poached salmon filets in milk and wine, put together a vegetable medly with lemon and butter, and steamed some Yukon gold potatoes. Because Mom told me this afternoon that she'd dreamed of strawberry shortcake, I brought home ripe strawberries, heavy whipping cream, and Bisquick (the new "heart healthy" kind with no hydrogenated crap) and made that for dessert. Yesterday's dinner came courtesy of my brother-in-law, who brought over eggplant layered with mascarpone cheese and sausage and topped with a light homemade marinara. We served it over pasta mixed with sauteed spinach and garlic. I think things are really going to be bad for the sibling gang when my mom's appetite finally fails and we have no call to produce gifts from the kitchen.
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As I'm writing this, I'm drinking a big ol' glass of wine. I need to get some sleep tonight, as I spent last night getting up at 1 and 3 and 5 to see if my mom needed pain meds, and then trying to meditate or pray or empty my mind enough to drop back off to sleep--with only limited success. Tonight Mom was so alert that I tried the old before-bed med method of leaving 1 dose of pain meds in a pillbox on her bedside table so she could take them if she needed them. I'll get up at 5 for a check-in. A storm is blowing into town, and our ecstatic southern california weather people have predicted a quarter inch of rain. I always sleep better when it's raining.

Glints from the sunlight

Last night I looked in on my mom at 11 p.m., then at 1 a.m. and again at 5 a.m.; both times she needed some pain meds. The good news (I guess) is that she hadn't needed them from 9 p.m. until 1 a.m., and that she didn't need them again between 5 and 10 a.m. She only wanted half a piece of toast for breakfast, and two cups of tea. I made her Morning Thunder, extra strong, with milk in it, and I think the caffeine contributed to her having a pretty alert hour and a half before she went back to bed. I managed to give her a foot rub with lavendar-scented coconut oil. For some reason, the cancer is making her skin extremely dry, and foot rubs and back rubs make her feel a lot better. This morning at 5, when I gave her the pain meds and a hug before we went back to sleep, I said "See you when the sun comes up, Mom." It was a way to get her oriented to the time of day, since she's often confused about that. She gave me a peck and a smile and said, "OK. See you in the sunlight." I feel an urge to write down everything she says and save it up. It's like when I was a kid, wading in the streambeds that run though the hills of our town. I'd see micah glinting in the sand beneath the water and want to pick up every shining piece.

All the live-long day

A log of my morning to bedtime, for those who wonder what the days here are like:

8 a.m.: Get up and look in on Mom to make sure she's still breathing. (Seriously. I do this.) Tiptoe back out, make coffee, get the paper, and ready her meds.
8:15: Give Mom pain meds if her back is hurting her.
8:30: Boot up my work computer and log in. Check email and triage.
9:00: Get Mom up so she can take her morning meds. Have coffee and read the paper with her; give her a back or foot rub with coconut and lavendar oils
9:30: Make breakfast; make sure she takes her mid-morning meds; wash breakfast dishes
10:00: With Mom in bed for a nap, work until noon or 12:30.
12:30: Make lunch; wake Mom and have lunch with her. See if she needs pain meds; see if she wants to go for a drive.
1:00: If Mom wants to get out, go out. Otherwise, work some more.
2:00-5:00: Usually she's sleeping, so I work, checking in to see if she needs pain meds or water every hour or so. I'm able to keep a pretty normal work schedule this way.
5:30: Start dinner; give Mom coumadin
6:30-9: Have dinner with Mom; wash dishes; give her another back or foot rub; see if she's up for watching the news or a movie; if not, try to think up some other way to engage her mind. Like looking at old slides (see next post).
9-10: If Mom wants to go to bed, ready her bedtime meds. Remind her of what they are and what they are for. Help her get ready for bed. Remind her to put on her oxygen line.
10-midnight: Work if I need to catch up on work. Or prepare updated medication charts and caregiver coverage info for my siblings. Log the day's symptoms for the hospice nurse. Read if I don't need to work. Watch mindless TV.
3 a.m.: Wake Mom to see if her back hurts. If it does, give pain meds.
8 a.m.: Do it all over again!

If it's not a work day, or there's a break in my work, I can sneak out while Mom is sleeping to take care of errands, take a walk, or have lunch with a friend or sibling.

Memories and visions

Today was a marginally less difficult caregiving day than yesterday was--from a caregivee perspective. My mom had a smidge more energy today. Also, she was determined to overcome her disorientation about day/time of day. We brainstormed on this, and came to the conclusion that leaving her bedroom window blind up (with the sheers closed) would clue her in: If she wakes and there's light outside, she might get the idea it's daytime. We talked about the fact that her pain meds are making her brain the weensiest bit addled (she's been hallucinating), and that this may be contributing to her penchant for getting up at night and being certain it's morning. Still, it frustrates her no end. Tonight she insisted on having her bedroom lamp on until at least 10 p.m., because before she got sick, her normal bedtime was between 10 and 11 p.m.. She figures if she tries to keep her old schedule, she'll get back on track.

I found a big box full of slides a while back. It was tucked into a shelf in the laundry room. We don't have a slide projector, but we do have a handheld slide viewer. Today we went through a few carriages of slides (the really old, straight kind of carriages), and Mom told me everything about everyone she remembered. There were a lot of photos of her as a girl, as a teen (she graduated high school in 1955), and as a young mother (she married my older sister and brother's father immediately after graduating, and got pregnant immediately after getting married). There were also photos of her mom, my grandmother (or, as Mom called her, "My dramatic and fabulous mother"--very long story that I ought to put into a damn novel). Both my grandmother and my mother were stunningly gorgeous as young women. Real lookers. As soon as I get these slides converted to soft files, I'll post some photos and then you'll understand that I'm being objective about this point. Anyway, it was wonderful seeing these images I'd never seen before. Watching my 70-year-old, cancer-ridden mom looking at such vibrant Kodachromes of her younger self just filled my heart to the aching point. I loaded up one, of her in a spring dress with hat and gloves, standing in a garden for a portrait before church, and mom said "Oh, who is that little girl? Nobody we know now..." and shook her head. "My mom made that dress for me." I hope we get to go through the rest of them before she gets too weak to be up for it.

Also in the slides that showed scenes of my mother's girlhood homes were many of the pieces of furniture that are in her home today: the oak coffee tables, our dining table and chairs, the big upholstered wing chair her mother got at a garage sale. Mom said her mother told her the chair had been custom-made for a very large man. There are photos of the following members of my family sitting in this chair, in its many different upholstery fabrics through the years, and as it transitioned from my grandmother's house to my mother's: my grandmother; her first husband (my grandfather); her second husband (my aunt's father); my grandfather with my mom on his knee; my aunt; my mom; my dad; my dad with my olders sister, older brother, and me on his lap; my older sister; my older brother; me; my younger brother; my younger sister. And this old chair, though it does need yet another re-upholstering, is still solid. My mother sits in it every day. We sit at the same dining table she sat at before she was out of high school.

Today my mother admitted to me that she has been hallucinating. I told her I thought so, as she'd told me the night before that she saw the wind in the curtains and thought I'd flown out the window. She said "Oh yeah," and laughed. She said she keeps seeing little tiny people peeping out at her from around corners. We chuckled at that as we napped on her wide bed. I reminded her that the oxycodone was probably doing that, and she said "Yes, but I can't get along without that," and the topic was settled. This afternoon as we were looking at slides, my mom stared off into the distance for a moment, and then she said, "I wonder why I never played in the cemetery." I answered, "Which cemetery," thinking maybe when she was a kid she'd lived close to a graveyard. "You know, the one down by the bird refuge," she said, indicating our cemetery here in Santa Barbara. "I always wanted to play there--it's so beautiful there. And I always thought it was so romantic." Now, our cemetery is one of the world's more gorgeous ones--it's on a graceful hill that ends in a cliff that overlooks the ocean. As I've grown up, we've often driven through there just for the view and to look at old headstones. I taught my brother how to drive stick shift there, figuring he couldn't do much damage to other vehicles on those wide, curving lanes. So, I just replied "Well, Mom, you're right. It is awfully pretty there," and left it at that.

Update, after The Talk

My older sister, younger brother, and I talked with our mom on Sunday as I wrote about in my last post. I explained everything her oncologist had told me as compassionately as I could. Afterward, she looked at my sister, her firstborn, and said, "What do you think of all this?" My sister replied: "I'm praying for a miracle." And my mom said "Oh, honey..." and started crying. Our tears didn't last long, though, and afterward she said she was relieved that we weren't "hiding behind the elephant in our livingroom" any longer. Today was a dismal, dreary day both outside and in for me. My mom seems to be doing OK with her terminal diagnosis. When Hospice care is called, that generally means you have 6 months or fewer to live. One of the hospice reps who called casually mentioned that my mom has "pretty extensive cancer." I don't know if I can interpret that to mean we'll have a LOT fewer than 6 months, or what. People are always strutting around saying "Yeah, the docs gave me two weeks to live, and that was three years ago!" Whatever; there's no way to predict. And today I was depressed about it all. Because I don't feel up to finding new words about it (despite this being the forum for them), I'll just copy part an email I sent a chaplain/RN friend of mine earlier today:

"As for emotions, mine are all over the board; Mom seems to be at a good place.
She says she didn't think that 70 would be her last year, but then all good things....

"Today I spent mainly feeling empty and sad, and with a huge sense that a big part of my life is being slowly erased. And not just my mom, but also the concept of
my-mom-and-me. The idea that I'd always have my mother's home to come to, where all my memories sit in their corners, and on the walls, and in the rafters for safekeeping; and this town with its beaches where we walked, and its stores where we shopped, and its parks where she pushed us on swings after we blew out the candles on so many birthday cakes; it's all changing, and I can't stop it, and this makes me so deeply sad--and beyond sad, to a place of no feeling at all. My mother is being taken away. I hope she discovers there is life where she goes. I hope she finds my father there, with my dog lying at his feet.

I'd drink, but then if she were to need help later tonight I wouldn't be able to be on my game, and that'd never do, me being caregiver on duty and all. Plus I'd have to deal with a headache tomorrow, since I'm such a lightweight wuss when it comes to alcohol. So I just have to sit with this--and email my friends when I can put my feelings into words that only partially represent them."

Places trigger memories. When my mom is gone, and this century-old house is sold to someone who most likely will knock it over and put up something new, what memories of mine will have lost their triggers? Which are the ones will I never afterward recall?

Reluctant messenger

Tomorrow I'll drive the 5.5 hours back to my hometown with an urgent and terrible mission: I have to explain to my mother that her oncologist does not want to continue giving her chemotherapy. Her oncologist is incredibly skilled and a nice guy to boot. He does not want to see my mother suffer any more than she must, given her diagnosis (small-cell lung cancer, recurrent and extensive) and her prognosis (terminal). I spoke by phone with the oncologist following a 48-hour hospitalization my mother had, during which she received mainly respite care. She got to be taken care of 'round the clock, got regular meals, regular meds. My siblings had not realized that although they were taking care of her in the evening, overnight, and the morning, there were big swaths of daytime in which she had no energy to stand long enough to prepare meals. Further, she's so confused most of the time she forgets whether she's taken her meds on-schedule (despite an easy-to-use chart and a many-compartmented pill minder). The combination of weakness and badly-timed med consumption landed her in the hospital, where they couldn't do much more than keep her well-fed and well-hydrated. Her cancer has advanced from her lungs to her lymphatic system. So now she has lung cancer throughout her abdomen. And while the cancer in her lungs responded to the chemo-plus-radiation routine, the cancer in her lymph system, which received no radiation, spits in the face of chemo. She has months.

As the cancer has advanced and the chemo has circulated through her radiation-injured brain, my mother's cognitive function has suffered. Examples: While she was in the hospital, she kept telling nurses that she used to have cancer, but now it's in remission. If she takes a nap during the afternoon and wakes at twilight, she thinks it's early morning (despite many clocks in the house), and begins doing morning things like making coffee, trying to get the paper, and *headdesk* taking her morning med doses (rather than the evening ones). In short: My mother cannot be alone for more than 2 or 3 hours at a time. But she has been hope-filled: she's convinced she can get better. It's like watching a crippled kitten try to play. And tomorrow I have to tell her that her doctors are pretty sure she will not get better, and I need to ask her if we can call Hospice.

I'm hoping she'll say yes: we need Hospice services badly. When I'm not there, my siblings must take turns supporting my mom. Here's how it needs to work, starting now (a ramped-up version of what they were doing): Each day someone must be there to prepare breakfast and make sure she takes her morning meds. If she has even a twinge of pain, they must make sure she takes a pain med before it gets out of hand. Then someone comes by and makes her lunch, checks her pain level and suggests meds if needed, sees if she wants to take a drive somewhere or perhaps a walk to the corner, or to sit on the porch in the sun for a while. Someone needs to be there at tea time to check on her med schedule and pain level, to see if she wants a snack. And then there's the dinner-and-overnight shift. And someone has to be on standby to take her to medical appointments. I go every two weeks and stay at 1 week, and during that time, nobody takes shifts except to come give me a break.

As Mom's cancer advances, she'll need even more care. And that's why we need Hospice. But we can't get Hospice until my mom understands what's going on with her and makes the decision to not seek another chemotherapy protocol. I pray that's what she does. If she insists on chemotherapy, it will need to be aggressive. And it wouldn't make her better. It wouldn't extend her life. The chemo she's already had horrified me in its devastation of her. I don't know if I'd be able to bear seeing her go through something even worse, when we could spend our last months together so differently.

It feels horrible to ask for good wishes in this mission. I'm going to ask my mother to gather her courage and surrender. More heartrending: I'm going to need to ask her more than once, since she doesn't remember things well. And I'll need to keep reminding her about the reason for the asking. It'll be the worst thing I'll ever have had to do. It will be one of the kindest things I'll ever do for anyone. Except, perhaps, to care for them through their last days and to sit beside them through their last moments.

Christ-O-Rama

Pascha nears (lo, this year Orthodox and Everyone Else's Easter are on the same date), and inevitably or should I say inexorably so do the dirty old panhandling Jesus-story-blaring front covers of "news" publications. "Buy our magazine and get the latest on Christ! Or Mary! Or Mary Magdalene! (Whore? Or the Original First Lady? You Decide.)" It's started a tad early, online where early news generally dwells, with a breezy piece about a documentary director who discovered the tomb of Jesus. (The tomb was actually found 27 years ago by Israeli construction workers looking to build some apartments. But let's not quibble.) Apparently Christ was a normal, earthly guy who had a kid named Judah with (who else?) Mary Magdalene. According to the director Jesus croaked as mortals will and his bones were stuffed into an ossuary and stashed along with those of his other family members, including his mother (no dormition for poor Mary then; just pedestrian decay like unto the great unwashed). I feel so...enlightened. Having observed this sentinal of celestial news, I await, lungs bursting, for the March-April covers of Newsweek and Time, which can be counted upon to annually discover headline-worthy new facts about the J-man. I'll buy them, along with the current issues of Cosmo, Glamour, and Lucky, and display them on a coffee table through the end of Pentacostarion. It's my quiet way of scorning those publications that call themselves serious and yet annually during the holiest time in Christendom pander to Common America's alleged yearning for the spiritual. What trash. Lucky knows its news: It's all shopping, all the time: the latest bags, bangles, dresses and cosmetics. Lucky does not stray in springtime from its frothy flacking of Euro-American bling to suddenly hold forth on Fashion Woes of Women in the Time of Our Saviour. Feh. It's enough to make me glad I shook the dust of the news industry off my sandals.

Our lives on this earth

You know you're really, really an adult the first time you make your own birthday cake. Two days ago, between trips to my mom's medical appointments, I made my own birthday cake while Mom, who's too exhausted to stand up long enough to mix up the batter, came into the kitchen now and again to break an egg into the bowl, get out the vanilla, or just observe for a few moments. She was dismayed that she couldn't go get me a birthday card, either. But she had my brother go get me a gift card from a local Barnes & Noble. I promised myself I wouldn't buy a book on caregiving. I have a stack already from the Cancer Center library.
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Birthdays have always been treated the same in my family. When we were little, my mom--a 1970's health-freak Mom--would allow us to have any breakfast food we wanted, even if it was something wince-worthy like Coco Puffs or Fruit Loops. Now that we've been making our own breakfasts for God knows how long, she asks what kind of cake we want, and then she bakes it. About four years ago she made me a coconut cake covered with coconut frosting and embedded with shredded coconut. It was gorgeous--and snowed all over the table and rug when I blew out my candles. Yup, we still get candles, and the Happy Birthday Song, the whole bit, and she makes us dinner, too. And no having to do any housework, no getting your own anything. But now things are different, so I made my own cake and did the dishes after dinner--which my younger sister came over and made. She brought her two little girls, so I got plenty of auntie time. A family friend came over and my sister and I reminisced about how we used to have chickens, ducks and a goose named Gooseberry in the back yard, and how the goose was a little orphan my mom took in and raised up in her apron pocket. It used to swim in the kitchen sink until it fledged and was big enough to go outside. Until then, we just put newspapers down in the kitchen and the back hall and kept the door between the kitchen and the carpeted livingroom closed. Gooseberry followed Mom around as if she were a beacon. When he was old enough to go outside and live with the ducks and chickens, he'd swim around the little kiddie pool we had for the waterfowl. The ducks were named Mama and Papa duck, and Mama duck would climb up in Gooseberry's back and ride along while he did all the swimming.
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As I observed before, Mom really embraced the health craze of the '70s. There was no pop in our house, no sugar cereals, no chips--only on special occasions like birthdays or summer picnics. She made her own bread (wheat bread), ground her own hamburger, made strawberry jam from berries we grew in our yard, and pound cakes from eggs that came from the chickens we had out back. One day she noticed we had a pint of leftover cream, and she decided we should try making butter using the blender. It worked--we blended the cream until we saw butter gathering in the liquid. Then we stopped the blender, gathered the butter together, pressed out the liquid and washed it til the water ran clear, salted the butter and stashed it in the refrigerator. It's no wonder I love to make things, grow things, and cook--I had Martha Stewart for a mom. I remember my mother striding around doing her errands downtown. She'd praise me for being able to keep up; she liked to walk fast. These days her balance isn't so good and she's afraid she might fall. So she takes small steps, shuffling like an old person, carting along her oxygen cannister on its wheeled metal stand. I keep seeing an image of the young one she used to be, just behind or in front of her, and I yearn for that person from before as I strive to accept the person she is right now. A few days ago I entered my 46th year, and my mother was there to help light candles on the cake. Happy birthday to me.

Thousand-yard Stare

I'm back in the Bay Area for a week and a half or so. I needed some R&R, I needed to get some things in order up here, and I needed my siblings to stop relying on me for everything related to caring for my mom and start stepping up to the plate. The only way to do that was to leave. Which kills me because yesterday the docs gave my mom a big dose of prednisone and now--whew!--she can breathe relatively easily. No horrible night-long coughing jags. She actually slept all night and only started coughing around 7. Which means she got up with plenty of energy, and an appetite. She actually got up and walked around the house putting things away and putting some laundry in and entertaining a couple of visitors with some sparkle rather than just gathering her energy and enduring. I wish they'd given her prednisone a while back, when she first started complaining about the shortness of breath and the coughing, so we could've had some up time together. But at any rate: Thank God for 'roids. I'm concerned because the chemo protocol they're proposing doesn't go well with prednisone. There are all sorts of dire warnings about it. But for now, I'm happy because after spending 2.5 weeks hearing her gasping for breath and coughing so terribly that tears streamed down her face and she only slept for moments at a time, I was wrung out and desperate for relief for her. It's horrifying, cancer.

We had a terrific wind storm the other night--trees were blown down, pretty much everything not bolted to ground was moved or toppled, and the power went out at some point in the wee hours. I was sleeping so soundly, for once, that I didn't notice. Mom had stashed her oxygen machine in the bathroom off her bedroom so it wouldn't keep us awake. Problem was, it sounds an alarm when power goes out. Nobody, including Mom (who'd taken a sleep aid) heard it. My aunt, who'd been visiting, woke up and noticed it was ink black outside, no street lights, and came to wake me up. We felt our way into Mom's room, switched her over by feel to her portable oxygen tank, made sure she was OK, and went back to bed. I had to set my cell phone alarm to go off in 2.5 hours, as that's how long the portable tank lasts at her rate of usage. After that I couldn't go back to sleep. Two hours and 15 minutes later, the power came back on. I got up, switched Mom back to her oxygen machine (which we call R2-D2, R2 for short), and finally got an hour or so's sleep.

My mom is a warrior woman. Faced with a terminal diagnosis (recurrent small cell lung cancer), and given the choice of palliative radiation and chemo (with the slim chance it can push her cancer back into remission like the first time around) and hospice care, she didn't hesitate: she chose treatment. She's focused completely on achieving remission, and she wants us to focus there, too. No assuming she's a gonner. No moping around. "The focus has to be on getting me well," she said yesterday. And so we've all swallowed the magic pill. We're going to get her well. I pray nightly to a God I'm not sure hears me, and I pray on, then sleep for another few hours and get up to a pragmatic, biological dawn.

Why I haven't posted (a big fat valid excuse for my 1.3 readers)

I went to Boston with the hunky chemist. It was loads of fun. THen we went to Hawaii, which was loads more fun. On the second to the last day of that trip, we learned my mom's small-cell lung cancer was back, but just in the original single location. They started her on a chemotherapy protocol right away, and she was tolerating it pretty well. A week later, we had Thanksgiving. It was tasty. And a week after that my mom ended up in the hospital with (a) pneumonia, (b) a pulmonary embolism (blood clot in the lung), and (c) tumors in both lungs, threatening to block her major airways. Naturally, I drove like a demon from hades to get back to my hometown--the most beautiful coastal town in California, I might add. Not a bad place to have to go to in an emergency. They kept her in the hospital a week, and now she's home, hooked up to oxygen 100% of the time and taking nine different meds each day, undergoing radiation daily (for 15 days) and then starting a different chemotherapy protocol. The cancer is incurable, but she's hoping treatment will push it back into remission for a little while, or at least shrink the tumors enough so she can breathe easier and hang around longer with us rather than in the next realm with Dad and her parents. I'm learning to be a caregiver. Lucky for me I can telecommute work. Can't so easily telecommute my relationship, so I'm rallying the siblings to be here in shifts in the periods of time when I'm gone.
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The other night Mom and I were watching television together. She was having a good day (no major bouts of coughing, energy relatively up) and wanted to catch up on a show she'd started watching halfway through a season. I have to say it's disturbing when your parent has a terminal disease and yet really loves the show "Six Feet Under." But that's not what made me feel like crying that night. What made me feel like crying that night was the sight of cornflakes falling into my cereal bowl (I was hungry and that's what was handy). For some bizarre reason I don't start tearing up at the tough stuff like Mom not being able to walk down the front porch step for the paper. What hits me hard is weird things like cereal and my email crashing and that Christmas ornament I made when I was in fourth grade and that still hangs, tattered but cheery, on our lighted fir tree.