Tag: celesteh

Last night, my mom woke up in pain at 3:00 AM and I held her hand, waiting for the morphine to work until 4:30 AM, dropping off intermittantly. It should only take half an hour to work. I need a clock, I didn’t know it was an hour and a half. At 4:30 we gave her a sedative and she went to sleep and I went to sleep. She was gasping for air as she went to sleep that night. Only every third breath or so seemed to be able to get through. But she’s still here this morning. The hospice nurse noted that her eyes are less bright. We take this day by day, hour by hour. I asked mom last night what she was waiting for and she said she was “terrified.” That’s legitimate. Everybody does what she’s doing, but none of them come back and say anything about it. We’ll all do it, but with noone to guide us, really.
Paul came over this morning while my mom was appropriately medicated for pain (keeping up my proud tradition of lying in her blog, I said we were successfully controlling her pain with meducation. I’m not sure we’re very successful. Right now, I’m waiting for the sedative to kick in because she’s unsettled and maybe in pain, I’m not sure and anyway, she can’t take that much more morphine right now, so I’ll wait and see if the lorazepam helps and if it doesn’t then i’ll give her more morphine and she’ll be at the limit she can receive. But when paul was here, she was cheerful, alert (so to speak) and not in much pain). He held her hand for a while. She didn’t really look at him. He said he had to go give a friend a ride home from knee surgery and he would probably be back later. It’s a good excuse, at least.
One of the hospice volunteers was here earlier. She’s the one that used to read to my mom from the bible. One day, my mom told her “go to hell.” Mom wasn’t doing that well that week. It may have been her only sentence. So she quit reading the bible that day and talked to her instead. Today, my mom can’t defend herself as well. The woman had us all stand around and read us poetry that prominently featured several endangered species and other parts of nature being very happy to see someone’s spirit set free. It made me cry. I hate having my emotions manippulated by art that isn’t really up to the task. Lone wolfs on the tundra may or may not howl out welcome to dead folks, but if you’re going to talk about it, it should get more than a stanza instead of going directly on to hawks, eagles and rainbows. The Oh Brother Where Art Thou soundtrack is more up to the task. Even featuring a song about a daughter saying goodbye to her mother.
I wish I could do something to help my mom. I wish she didn’t have to go alone. I wish it didn’t have to hurt her. I wish she was older. I think she’s fighting off deatn like we fight of sleep.
People keep asking if they can bring anything. Saint candles. Any saint. If you can’t bring a candle, light one at home.

The hospice nurse showed up this afternoon and was surprised at how alert my mom seemed. We put her on an egg crate matress pad, learned how to irrigate her catheter, were once again instructed not to give her food or water. Margie continues to ofer my mom food and water tho. My mom refuses most of the time, but she’s been having a few swallows of fruit juice a day. I’ve been putting eyedroppers full of milk thistle extract in her juice. Margie credits them to my mom’s being alert.
You have to understand that when I say alert, I’m contrasting with total unconsciousness. I’m talking about her eyes being open, not her having full coversations. But she was talking; she was waiting for something. Maybe Chuck and Paul.
Chuck showed up in the afternoon, stayed a while. He was scared to hold her hand, but he still stayed in the room with her and talked quietly, not really to her, but she knew he was there. Paul told my dad he would come at 4:00. Chuck left at 4:15. We kept telling my mom Paul was coming and she would smile broadly. But she got more and more agitated. She got out the whole sentence, “when is he coming?”
At 7:00, while my mom’s pain was greater than the morphine could dull, I reached Paul on the phone. He wanted to come in the morning since he was asleep. I told him no, come right now. christi grabbed away the phone and started yelling at him. He hung up. we called back and he didn’t answer. We called Mitch and asked him to come over to take Christi and to go drag Paul from his house. My dad reached Paul’s housemate on the phone, who said Paul had left to come here. Mom got more pain medicine but was still agitated. She was tense. She wanted to know where he was. We gave her more sedative. It started working right before my brother arrived. Or perhaps his arrival calmed her down.
Paul is asleep on the couch. My dad is in his room. He’s pulled all of the family photos out of his dresser on to the floor. Margie is sewing up her pants, then puttering around the kitchen, then checking on things around the kitchen, out of the way but maybe nervous. Christi is with Mitch and Sarah D off someplace getting takeout food. They’ll bring it back and some people will eat in the kitchen or the family room or the dining room. It’s probable that my dad and I will both decline to eat with them. My mom is lying in bed. She’s had morphine, which in addition to killing pain, opens air passageways. Her bed is tilted up so high that she’s almost sitting upright, which also helps breathing. Her oxygen in turned up to 4 litres per minute, the highest flow we’re allowed. My mom is breathing laboriously, snoring and almost gurgling, occasionally gasping. I’ve left her side to sit below the foot of her bed and type this. I don’t know why.
She’s got nothing left to wait for. Everyone has been here and said everything they’re going to say. It’s ok for her to go now. I want to tell her that, but my throat closes up if I even think the words. But I still will it at her, hoping she’ll read my mind.
We have an array of holy candles. The one burning the lowest is St. Jude the Apostle, patron saint of lost causes. I thought the candle would be out yesturday, but it’s still burning. Even his candle is a lost cause. Which will burn longer, the fire in it or the fire in her? They both have little fuel left.
My fuel is oreos. I’ve eaten a bag of them today. And had a cup of orange juice. Maybe I’ll have some dinner. I’ve called my neighbor to water my plants and feed my cat. We’re still waiting here. Death is ritual. Family member gather and wait. Friends come and say things and go. Other friends bring food and then go, or perhaps cluster. Last night they watched a silent movie on Christi’s laptop. The ritual falls into place on it’s own. People bring flowers, cards, prayers. Bits of religousness descend on you. Things are briught thought to be spiritually helpful to the dying and their family, like more holy candles, or relics or bags of oreos. The dying also know their part without being told. Everything my mom is doing is what everyone does. The dying move their arms, reaching up and out towards death and then bringing their arm around in a defensive move against death’s blow. Horrified and fascinated, she’s making up her mind. She’s waiting for whatever she needs to wait for, for as long as she can wait before it becomes too much. Her body hurts her, it’s failing her. She reaches towards the other side and finally, she must make the descision to cross over. It’s too compelling to resit for long. Her body cannot hold her here.
Perhaps she still waits. Perhaps she’s decided to continue on the journey her body is taking her on. She breathes like she’s decided to go. Perhaps she could be woken back up and persevere for a while longer, paying for each moment in additional pain. But maybe every need has been met. Every request has been filled or else deemed not important enough to delay her. So I sit and wait. I haven’t written her biography. I’ll ask my godmother for help when the time comes. The hospice nurse says this is a sacred time for my mom: the descision, the waiting. And so we wait for the ritual to finish. It’s ok mom, you can go.

I am at my perents house. christi is sleeping on the sofa. margie is in a nother room praying or watching soap operas. my mom is sleeping, waking up just to try to remove the oxygen line from her nose or reach for invisible things overhead. my dad is at work. when i showed up here this morning, he was gone already. the chaplain of hospice called and said she wanted to talk to dad today. he came home for lunch and ate some meat (he seems to be on the atkins diet – maybe not on purpose) and i said the chaplian was coming. my dad said he could only skip work for things that were really important. um… like now? no, like really important. i wonder what could be more imporant than now. i don’t really want to find out. it would be bad. i told him about the family medical leave act and he said he had his coworkers to think of. i bet they really love having him come into every day. as fun as he normally is (note: irony) he must be extra great to hang around now. i bet they’re all scared of him.
Mom is more alert than yesturday. She’s getting 50% more oxygen streamed in her nose. the hospice people tell us not to give her water, so she’s drying out like a piece of dried fruit with out the sun. She’s talking a bit today. the hospice people tell us to talk to her, but i don’t know what to say. finally, i said, “you did a good job raising your daughter.” and she said, “thank you.” she answers yes or no questions when margie asks them.
My dad still wants to move her. he was upset when his mother was relocated. she was at el camino hospital and was clearly going to die and they decided she had to leave. so we had to find a place for her to go. she got moved to a convalescent hospital and died later the same day. Nobody dying wants to bounce around in the back of an ambulence. Actually, really very few people want to bounce around in the back of an ambulence at all. But my dad is as frightened as a bunny rabbit and wants to send her away. he said he didn’t want her sleeping (or dying) in their bedroom, so we moved her to the living room. it was a massive pain. she can’t stand at all on her own. margie halted to get her lifting belt, but my dad was intent and was going to do it alone. lifting from the back and not the knees. he’s going to destroy his back and for what? the whole moving experience was uncomfortable for her and now he wants to repeat it on a much larger scale. but it’s his call, not mine.
My mom is on the board of directors of a convalescent hospital. the one my grandma went to. it makes it hard to make an argument that she would opposed to moving there. when mom first came home from the hospital, she asked what was going on so i told her everything. she was upset. “my life is ruined. it’s over.” she kept repeating and it got very irritating very quickly. and iw as irritated at her, but i had to follow her everywhere, because her balance was poor and she might have fallen or wandered off or had some other calamity befall her. She was irrated at being followed. Her mantra changed from “everything is ruined.” to “you ruined everything.” because she was forgetting stuff and was unhappy and couldn’t remember why and certainly didn’t want her daughter telling her what to do. She told my dad that day that she wanted to move to fatima for the rest of her life rather than have me follow her around. so maybe she would rather be there. but we’d go to all the trouble of arranging an ambulence ride and she’s die when? the next day? later that day? on the ride over?
My dad has decided not to cremate my mom. This wouldn’t bother me except he made that descision when i told him that christi’s dad (a potter) could make an urn for my mom. The prospect of a handmade urn by a friend i guess is threatening somehow. both my grandmothers were creamated. he creamted his own mom, why not his wife? it’s got to be the urn. i told him he could say no and pick something else, but he’s been set on burial. he beleives that he is fully rational. his being an engineer makes him fully left brained and thus completely able to deal with any cirsis without becoming an emotional wreck. right.
I had opera tickets for tonight. i couldn’t switch them on such short notice, so i’m getting a tax write-off instead. but last night my dad irritated me and i went to esperanto class. it was stupid. they’re doing the lesson on affixes. i know almost all the affixes, becaise it was the fourth time i’ve had that lesson. everytime somebody new comes along, we do affixes again. anyway, i feel like someone should be at my mother’s side, but i went to class to avoid my dad. so maybe i’ll regret sacrificing my tickets to the irs.
No sign of my brother or my uncle. My uncle’s phone was off the hook all day yesturday. One day all of these males i’m related to will die. But first they will spend their last days being transported by ambulence from low-budget nursing home to low-budjet nursing home with noone to visit them and then they will neither be buried or creamated but simply tossed in the bay. These bad vibes i’m projecting are disturbing my mom. puppies and kittens. puppies and kittens. puppies and kittens.

My mom is lying dying and i’m watching general hospital. i know the names of several people in it now. i didn’t even ask the hospice nurse about steroids. how long has she got? a week? two? it’s soon. nobody on general hospital dies this way. for being around a hospital, they have remarkably few sick people. the occassional “accident” victim (was it really an accident?) more amnesia that you can shake a stick at, even cancer sometimes, but not this kind. tv cancer people alsways get to make a sensible goodbye and then die painlessly. brain cancer is pretty painless, tho. but no sensible goodbyes. when my mom was in the hospital and before she had an operation, she was on steroids and our family had gathered. she thought she was going to die that night. she was trying to have a deathbed scene. she was talking about me inheritting her jewlry, but she couldn’t talk. we could figure out what she was saying eventually, but when we realized the gist, we stopped playing along. we knew she’d be alive in the morning. the next day, she kept repeating, “i thought i was cooked!” she was so happy and surprised to still be alive. we’ve never repated that deathbed scene. i don’t know what her last wants and will is. i don’t care very much about how her stuff will be divided up. i certainly don’t need a year’s salry worth of shop-at-home jewlry. somebody on general hospital has been shot. he’s kidnapped a doctor to take out the bullet. none of these people have jobs. even the doctors don’t show up to work or do surgery except when they’re captive. they don’t even die. they just disappear for a season and then whoops, the wrong guy has been buried or something. and they have perfect hair in the hospital. people with head injuries don’t get shaved patches. but despite all this wonderfulness and their perfect hair, they’re always unhappy. half the time they’re trying to kill each other. don’t they know it’s futile? these people hardly ever die. yet all the tv commercials are for pharmaceuticals. medicine to fight side fx of chemo. nothing to forestall death. the hospice nurse says a couple of days.

My mom is still sleeping. Her eyes move when she sleeps, so she might be dreaming. Apparently, she woke up for a few minutes this morning and recognized my dad. She hadn’t been recognizing him for a while. He had a beard for 30+ years and then a year or two ago he decided it made him look old and shaved it off. I’m still not used to it. My mom apparently wasn’t used to it either, so he started growing it back. It’s about a centimeter long now. So this morning, my mom got a look of recognition and touched his beard. That was during the five minutes of being awake she had today. She can still drink out of juice boxes even though she’s asleep. Drinking out of a straw is sort of automatic, I guess. The juice boxes have eight ounces of liquid and 110 Calories. Soy Dream Enriched has 150 Calories per eight ounces, but we’re out of that. Soy Dream Chocolate Enriched has 220 Calories, but my mom was starting to get a rash because she is mildly allergic to chocolate and was getting loads of it in milk, soy milk, ensure, scandi shake and pudding everyday, so we stopped giving her chcolate. Her rash is gone, but she had the beginings of a bedsore this morning. Margie is rolling her from side to side every so often to nip this in the bud and stop formations of new ones. Anyway, whole milk has 160 Calories in 8 ounces, ensure has 250 Calories in eight ounces and ensure plus has 350 calories in eight ounces, but none of those come in juice boxes, so she probably can’t drink them anyway.
We’re asking hospice tomorrow about giving mom steroids. It’s my suggestion, but I’m not 100% sure it’s a good idea. It’s forestalling the inevitable, I guess. Is it a good idea to wake her up with chemicals, just to have her dragged back down again in a week (maybe more time, maybe less)? I have the idea that if she woke back up, her friends could rush in for a last minute visit, but how many of them would and how many of them would be too scared? Would her brother come? Would her son? Is it just stupid denial on my part to want to do this thing? My dad wants to ship her off to a convalescent hospital, because it’s hard for him to be around her when she’s in a near coma. He think she doesn’t get anything out of his presence and of course, it’s difficult for him. So waking her up for a week delays her being shipped off to fatima for a week. I’m trying to suggest a compromise. Maybe she could be put in a hospital bed or something. Right now, they still sleep in the same bed, only she sleeps a lot more than him in it.
All of this is very disturbing. It was hard enough dealing with this when my mom was still awake. I think if I had a job, I would have been fired by now. I guess I don’t work for the iguana foundation anymore.
And Chimera seems to have lost the publish button. hrm, must cut and paste this to IE. I guess blogger must have signed some deal with microsoft to use stupid IE-only javascript tags. bleah. it’s against the whole idea of the internet. somebody sais that people who write single-browser specific web pages are people who yearn for the days that you couldn’t open a mac text document on a pc and vice versa.

Hrm, my mom has been asleep for the last 3 days. we just got her a reclining wheelchair. it’s been like this all along. as soon as we figure out how to deal with whatever stage she’s in, she moves on to the next one. I used to make a big deal about saying doobye to her, getting all maudalin about when the last time she was going to be able to say goodbye would happen. well, i made such a big deal about it that, until she got sleepy, everytime my dad or i or anyone kissed her, she would say “goodbye, have a good night. i love you.” so i realized it was a stupid thing to make a bid deal about it. but maybe it had meaning to her. anyway, last time she was awake i didn’t make a big deal about it and now she’s asleep. i wasn’t really paying enough attention to her. my dad is acting like it is a huge change that she’s sleepy all the time, but she was pretty unengaged the last time i saw her awake. anyway, if she can’t wake up she can’t swallow medicine. my dad wants to wait until tuesday to talk to the hospice nurse about getting a suppository form of the anti-seizure medicine, because the nurse has an appointment for tuesday. i think he should give them a call today or tomorrow. just because she hasn’t had a seizure yet doesn’t mean that she won’t have one. i don’t understand his motive for waiting. does he think that if they don’t witness it, maybe it’s not real yet? maybe it will reverse itself if we refuse to adjust? or maybe he’s noticed that she changes when we adjust and if we respond to her being unconscious, she’ll die. He asked me to start writing a biography of her. goodness, i have no idea what to write. My mom was born a long time ago and went to college and got a job and was very happy and then gave it all up to get married and have ungrateful children. that’s her autobiography from my childhood, especially when i was being uncooperative. She was a med tech, which meant she drew people’s blood and then looked at it for abnormalities and sometimes diagnosed diseases based on the blood samples. She said, “I had doctors coming to me for advice. Doctors! Now it’s ‘Where’s my socks?'” Um, then she inheritted a lot of money and became involved in 327467312649 charities and suddenly started making friends thanks to the miracle of anti-depressants. Then, just as she was getting into leadership roles in all of her organizations and finally found her footing, she got a brain tumor. everybody in the world thought she was super sweet and loved her, but very few of them came to visit. her family members avoided seeing her. the end.