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.
Monday, April 30, 2007
Friday, April 27, 2007
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.
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.
Wednesday, April 25, 2007
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.
+++
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.
+++
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.
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.
+++
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.
+++
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.
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.
Sunday, April 22, 2007
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.
Saturday, April 21, 2007
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.
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.
Friday, April 20, 2007
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
Carla Jevine Karys
3/8/37 - 4/20/2007
Thursday, April 19, 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.
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.
Wednesday, April 18, 2007
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.
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.
Tuesday, April 17, 2007
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.
Monday, April 16, 2007
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.
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.
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.
Thursday, April 12, 2007
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.
"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.
Tuesday, April 10, 2007
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.
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.
Friday, April 06, 2007
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.
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.
Thursday, April 05, 2007
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.
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.
Wednesday, April 04, 2007
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.
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.
Monday, April 02, 2007
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.
- 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.
Sunday, April 01, 2007
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.
+++
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.
+++
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.
+++
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.
+++
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.
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