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Mom tenatiously keeps hanging on. where was this fighting spirit earlier? when she first had brain surgery, she kept saying “I’m dying! I’m dying! It’s all over! Everything is ruined!” now she just keeps going like the energizer bunny. Why is she changing her mind at the last minute? Why couldn’t she have been determined earlier?
I got up every two hours last night to check on her. That went pretty well and it kept her pretty much out of pain. Except that I’m exhausted. Margie woke me up this morning and told me I’d better sit with my mom. She was breathing quickly and her pulse was racing, she was hot and sweaty. So I sat and held her hand for a while. My dad was leaving for work. He said, “call me if you think anything is about to happen.” I said, “uh, dad….” but he was already out the door. And after a while, we realized it wasn’t it and I went to take a shower. Vince and Tammy brought lunch, which was very nice. and then Christi decided maybe she had better head off to work too. I don’t know how she could have the energy with me waking her up every two hours and sometimes trying to ask her questions, “does mom look like she’s in pain?”
Mom hasn’t been reacting really at all tofay. Her eyes are mostly closed. When they open, they’re grayish and cloudy and don’t focus. Or just for a moment. She’ll hear my voice and look at me and almost focus and almst seem to recognize me. She’s up to .4 ml of morphine every four hours and I’m thinking of going up to .5, because the .4 isn’t enough a lot of the time. Her heart has been racing all day. Her temperature has been going up and down. she sweats off and on. It’s hard to tell because I put ointment on her dry skin yesturday, so a lot of her is shiny. She twitches in sort of convulsions. Marie says not to worry about it, that everybody dying does that and te lorazepam won’t stop it. I called hospice twice yesterday to ask questions. The first time was because I had given her all the lorazepam I could and she was still twitchy (“Give her some more.”) and because she had a lot of wet respiration and I thought her mouth was filling up with fluid. (“Do you have a dentist tool or something I can use to get the fluid out of her mouth?” “Use a dry washcloth and after you get everything out, give her three drops of atripine.”)
So right now she’s lying in bed, with her eyes open but unseeing, breathing noisily (5 – 6 seconds apart), swallowing occasionally and thoughtfully raising her eyebrows periodically. Her heart is still beating very fast and her head is warm and has turned a highly alarming shade of blue. Her eyes are sunken in. She looks like you’d expect a corpse to look, but she’s still hanging on. Almost nothing in her catheter bag today. Nobody even offered her water or anything. I doubt she’d take it and it would prolly just end up making her gugrle more while breathing. Oh she just looked highly paniced and clenched, so I’ve given her two more drops of lorazepam.
I went to get more oreos. you need munchies for your bedside vigils, especially as they head into their second week. Mom, you can’t always run around changing your mind at the last minute! Why are you doing this to yourself? You’re freaking us all out! I mean, we’ll miss you and stuff. . .
christi went to the candle shop below her office this evening. She works in the Mission District. the proprietor saw her coming and re-opened the shop and handed her two BVM (Blessed Virgin Mary) candles and said, “you need these.” So now we have a whole bunch of candles. I got some essential oils to drop in them too. I was looking for ones to promote calm and peace and death. But all of them said they were for rejuvenation and exhiliration and energy and stuff like that. That’s definitely not what we’re looking for. So, I’ve been dropping in the candles drops of geranium (calm), rose (my mom loves roses), and vanilla (seems calming to me).
Mom’s fingernails are getting bluish, that’s suppossed to mean that the end is near. But her skin hasn’t “broken down” yet. something alarming sounding that I’m not asking what it means. I’m sure it will happen soon. I know impatience is the wrong reaction. I don’t like seeing her suffer. This can’t go on much longer, since she never even woke up today. and thirst will get her if nothing else does. I think she’s going to have to go through every possible bit of suffering before this is over. All the sufferings of Job will be hers. I woouldn’t amkea dog go through this. I’d take it to the vert and have it put to sleep. But my mother I have to sit and watch suffer things I wouldn’t make a cat endure. This is all fucked up. Listen up folks. If I’m unconscious on my deathbed, in pain with no chance of recovery, call up doctor Kevorkian. For real. Maybe I should call my mom’s doctor tomorrow. I wonder how my dad would react…. I don’t know if I want to have that coversation with him. He’s extra weird right now (I’m sure I am too) and we’re kind of avoiding each other. I wish the social worker would come talk to him about his feelings or something, cuz I don’t want to. Maybe I should call her. And I’m not sleeping.
My mom never wants me to leave when I come visit. As soon as it’s dark, she’d say, “you can’t go home this late, you’d better just stay over.” Well, now she’s got me here….

Well, my mom was awake yesturday morning, but she was less active through the day. She never once removed the oxygen line from her nose. It’s got to still be itching her. Her breathing had been a little rough off and on. When I went to bed, I was listening for “wet respiration.” That’s when fluid gets in people’s throats and they rattle or gurgle. I thought I heard a hint of it, but nobody else did. At 3:00 AM, all of the sudden, she started making sounds like an espresso machine. Very loud, alarming gurgles. I know how to treat this, but I sent Christi off running for Cathy anyway. She says that usually people with wet respiration are sweaty and especially wet around the mouth. Anyway, we gave my mom a drop of the medicine for it and she quieted down. It was her first bit of it.
She’s been getting more of it since. None of the super-loud gurgling again, but gurgling anyway. The medicine is supossed to work immediately, but she just got a drop and is still gurgling away. Maybe she needs more, maybe we should wait a bit. This afternoon, she got the sweaty, wet mouth thing as described, but it doesn’t seem to be any sort of prerequisite. She’s also maxed out on morphine doses and went over sedative doses. She starts freaking out half an hour before she can get more morphine. Sarah K. says that some of that is withdrawl. Medical Marijuana is illegal under federal law because it has a side effect of euphoria. Morphine has all the euphoria and is addictive to boot, but it’s legal. Not that I want it to be made illegal. I just wish it didn’t give mom withdrawl, or lose it’s effectiveness so quickly. Some of it is my mom being in more pain. Some is that she just needs more to stay at the same level. She’s in an educational video on drugs or something. It does suck as much as they say. But she’s not walking the street yet or anything.
My dad has been telling everyone all week that my mom would live until tuesday. I’d been silently mocking it, but who knows, maybe she will, at least until 3:00 AM. We’d been wondering how my dad would escape to work on the weekend. Apparently, he’s been sitting in front of his computer, at the other end of the house, all day. Cathy feels bad for him.
I wish my mom would stop gurgling. Her friend says that since she got sick so fast and it was mostly a brain-disease, her internal organs are in better shape than most dying people and so she’s hanging on longer. I wish she’d hurry up and die. It sounds awful. If we were in Oregon, she wouldn’t have to keep suffering. But I can’t say definitely that she would have done the paperwork to allow her doctor the euthanize her. Catholics are pro-suffering, they don’t go for euthanasia. Mother Thersa apparently spoke in favor of the sufferings of the poor because more suffering makes the workd holier. It’s that whole pro-penance thing. Christi got a candle of Saint Alex, because it was a pink candle and he was wearing pink. turns out he’s the patron saint of warding off satan. He was born a rich guy in Roman times, but ran away on the night of his wedding to be a poor and holy beggar. He finally ended up living in his parents house off of the charity they routinely offered the poor. The servants abused him terribly and only on his death did anyone discover that he was really the son. Talk about ungrateful children. And what about his poor wife. Did they have anullments back then?

Needs

• Candles: bring them (votive type in glass) or light them at home
• Oreos

Thank you to providers of candles, comfort food, coffee, takers of phillip glass tickets and writers of email.

A few hours ago, my mom started breathing roughly. I gave her some morphine to calm it down. That takes a half hour to work. But as her breathing was getting rougher and more irregular, her pulse was speeding up. She was warm and sweaty. We called Paul. Dad, Christi, Cathy and I stood around and stared at Mom. then her breathing calmed down and her pulse returned to normal. We called back Paul and told him to come to dinner. He’s got some alarming voice mail. I guess we should have waited a bit to call.
Mitch says, “wow she’s a real fighter.”
Mom’s pain seems to have subsided at least. She’s somewhat awake. She’s fighting. She’s fighting a losing battle. But she’ll make up her mind. My dad is convinced she’ll die on tuesday. Maybe she’s trying to hold out. He really wants her to hold out. so do my brother and uncle. Margie told her yesterday, “Baby, go home.” She’s getting mixed messages. I wish I’d made her some pot tinctures. She could take a few drops. It would make her feel better. Maybe give her courage. the nearest CBC is in hayward, I think. I can’t send anyone in my stead. It would also increase her heartrate, so maybe it’s not the thing for her now. It’s a moot point.
Christi and I went to wholefoods to buy dish soap. We got a head shakra candle. Perhaps it’s a bit late for it now. One of the checkers at the store is a Mills student. She was in German House with me. I made her cry. I scare the horses. I should not go out in public.
I wonder if there are eco caskets. I wonder how one would get one on short notice. I think most enviromentalists are creamated.

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.