Thursday, May 31, 2007
Then she slept for the rest of the day, not even waking for a visit from her accountant and his wife (good friends of Dorothy) or when Dennis and Ruth arrived. I don't think she even smelled the pizza we ate while we all hid in the kitchen.
Later, she woke up and we were trying to figure out what she wanted. She said she was in pain and wanted Tylenol. She's been afraid to take the morphine. I think it's so easy to associate morphine with stories of olden day suffering and addiction and side effects... it makes me think of Anna Karenina. Justin finally convinced her to have a small dose (which is what she can have) and gave it to her in liquid form with the little dropper. Unfortunately, beforehand, Mark and I were making jokes about passing it around to the rest of us--we were so stressed out from her earlier coughing/choking fit that we were cracking with pressure and fear. She said, "Tell them to shut up." I could read it on her lips before Justin figured it out, and he said, "She doesn't like the joking." I think maybe she didn't like the TV either. She doesn't like the noise anymore. She wants to talk to Mark and Justin and the family and that's it. We shouldn't have made fun of the drugs. But we're just so tired... and we have no idea how long this will continue.
Tonight, when we left, Justin said, "We're going to go home now, to Olaina's mom and dad's house, and sleep there. Then we'll come back and see you in the morning."
"I guess so," she said.
It took a while to explain that she wasn't going to be left alone, that it was just the two of us leaving (and Dennis and Ruth, our new house guests), and that Mark would still be there with Dorothy and Laura. I think she's starting to be afraid that she won't wake up in the morning. She fights sleep sometimes. But sometimes she can't, it wins, and she rests in what looks like a peaceful way for hours.
Justin and I are planning to see my brother and friends tomorrow night and then also go out on Saturday afternoon (his best friend ("brother" they call each other) is having a bachelor party and he really needs to be there--he's the co-best man). It's scary to think of missing that much time away from Toni's bedside, but what can we do? Besides, we've said goodbye, goodnight and I love you so many times now... I don't know. It just doesn't seem like there is a good way or a good time for any of this to happen. None of us even know when we're going back to work, which our bosses really love but all say they understand and that we should be with our family now. And if we're there in that final moment, what will happen? How would it be better and for whom? The questions are endless and without good answers...
I suppose this sense of humor of mine is not going away anytime soon.
I woke up this morning and thought, "What am I doing today?
Oh yeah, we're going to watch Toni." And then I saw all those "Watch"es from the news roll through my mind. Storm Watch 2006. Fire Watch 2003. Elections, Wars, Floods...
Of course, I also had to figure out where I was waking up. We're sleeping in my parents' bedroom, since today Dennis and Ruth are coming in from Oregon and staying in what's come to be our bedroom but was once Neil's bedroom--the guest bedroom with the Challenger wall paper. I hope they don't mind sleeping next to the space shuttle flying through space.
My parents' bed is round. What can I say? It's from the 1970s. Its diameter is about that of a California King size bed, and my mom has special mattresses made for it at a foam store (yes, these exist) and makes the sheets herself by buying smaller ones and sewing them together--even a fitted sheet with elastic hemmed around the whole circle.
Justin ended up lying diagonally across the bed (I couldn't sleep and so I guess I got up and then tried to come back); if it were a rectangle or a square, he'd have been making some kind of triangle--and taking up the whole bed leaving no room for me. I woke him up--"Hey, you're all crooked!"
He sat up groggily and looked around. "I'm a clock."
"As long as you don't strike one."
He moved his head back to the pillows and his feet back to the bottom of the circle, but we have a queen size bed at home and he was way far away.
"I need a hug," I said, and he scooted over about as much as he usually needs to for hugs. Still far away.
More scooting. "Cross country. Better have enough rations."
"We have cheese." I started to remember all the cheese I bought, the way a hungover person starts to catalog all the drinks she had the night before. It felt almost as sickening and nearly as embarrassing. "There's three kinds of cream cheese, and Vermont white cheddar, and extra sharp cheddar, and string cheese..."
This morning I asked him if he wanted bagels for breakfast--two kinds: cinnamon raisin swirl or everything. "We have bagels, and bacon, but no eggs. I don't know why I didn't buy eggs. I guess I figured they'd get crushed coming up here. But we can buy eggs and have that tomorrow."
"I saw that you bought bacon, but no eggs. It's cute."
And then we found eggs in my parents' fridge--not even expired yet. :)
I gotta go. Another Law and Order will start in half an hour or an hour, I'm sure, and we should be there.
Wednesday, May 30, 2007
Plus they live in this area and they like to eat.
As we drove to meet them after leaving Toni's house I said to Justin, "Thank God Brandon and Oakley live nearby. They can be the ones who take care of us, for now."
Even though we hadn't done much all day (outside of running around San Diego packing up our lives and moving into my parents' house this morning and then going to Toni's house where Justin is the official suction-machine worker (Toni's coughing isn't all that efficient) and I am the documentarian of experience), we were spent. In a house that is bursting with love--like Victoria and Mark's--when we drive away we feel energized and inspired. In this love-bursting house everyone is holding it together by a thread and when we leave I have a whole new appreciation for the concept of respite care providers. Holy God, watching someone die is exhausting. Everyone is being so sweet and attentive. It's amazing we do not all fall into sugar coma's. I think we probably look comatose when we go out. Are the eyes so puffy from lack of sleep or from containing the flood of tears?
But then there's the Borens and our match for match humor...
Oakley and I sat opposite the boys at Fortune Cookie restaurant, which is such healthy Chinese food that the nutritionist who started the restaurant includes dietary information with each dish's description. We immediately slipped off our sandals and sat Indian style while commenting that we knew we both liked the bench better and our husbands would feel claustrophobic in the corner.
Yesterday, Oakley had accidentally mis-ordered at a Thai restaurant they went to, so they had to add what Brandon wanted to the list and came home with five dishes of leftovers. Last week Brandon had to watch horrific things in a PowerPoint presentation in some FBI training--something that involved finding the people who kill children. While the four of us don't actually want to have our own children (at least right now), it's not that we hate them so much we think they should be hurt--it's actually a lot that we love them so much we want to spare them the tragedy of our gene pool.
Brandon, who almost never drinks alcohol, said, "I've been thinking about getting just buzzed enough to forget about last week's stuff."
"I don't recommend it. It doesn't really work, anyway," I said. We were having water and tea with our meal.
Even Justin piped in, "Yeah, it's OK while you're actually drinking, but afterward it's not any better..."
"...and it's all still true."
"Of course, you could just go buy a bunch of random groceries," he teased. I had to go pick up an emergency supply of one of my medications that I will run out of while I'm away from San Diego. While I waited at the base (30 minutes) I went to buy water and do some quick grocery shopping, since my parents' house doesn't have much food in it (they're gone for a while) and we're having some of Justin's family stay with us. So we have a lot of cheese. String cheese. Two kinds of sharp cheddar (my favorite was on sale!). Three kinds of cream cheese. Two flavors of bagels and also English muffins. Pasta. Pasta sauce. Yogurt. Pudding. Ice cream.
Just in case.
"Nah," I said. "That doesn't really work either. I bought celery because I remembered that Toni used to put cream cheese with onions and chives in them as snacks, but then we got here and I remembered that Toni can't eat at all and Dorothy can't eat greens."
"Oh!" Justin said. "I was wondering, since you can't even eat celery with your braces."
"Yeah, I've given up on that. I'm eating the celery," then I turned to Oakley, remembering our sifting plans. "When I was washing the celery, I realized we have three different kinds of sieves in our cupboard."
She started giggling.
Justin didn't get it, and said, "Well! One had big holes in it and everything fell through, and another was free from Henry's and we have one that's wire mesh..." Since he's the kitchen guy (and LOVES kitchen gadgets) I think he was feeling a little self conscious and defensive. By then Oakley and I were laughing so hard we had to cover our mouths and couldn't take any more bites. She was even teary.
"So we can triple sift her, until we get only the really fine stuff..." I sputtered through my laughing breaths.
"Upon further investigation," she said, "we don't have the right kind of sieve. We have one of those grinder like thingys..."
Somehow Brandon clued in to our cremation joke about scattering ashes and he mimed using one of those grass seed spreaders and said, "You could use a seed spreader and scatter her nice and evenly over the beach."
Back at their house I dozed off in my old chair (now the Oak Nest) while she played a video game and Brandon showed Justin funny video clips on their computer. Then, at my house, I got to nest and do laundry and know where things belong. I haven't stopped moving since we got here.
Dorothy told Justin as we were leaving Toni's house, "This must be hard on you. "
"Yeah... You too."
"I've been washing linens all day."
"It's good to keep busy," he said as they hugged.
Tuesday, May 29, 2007
Today we were driving back to San Diego from LA and discussing memorial services. What are their purpose? Who are they for? What do they do? "I don't know, I'm not a big funeral guy," he said.
I looked at him and laughed--I don't think funerals are exactly something people groove on (except for maybe morticians and people in the casket building business, and maybe those people who are paid to grieve so that the service looks well attended (was that just during the old days? in some other culture?)).
"OK. Maybe you're just not ready to talk about memorial services yet."
"Yeah, maybe not."
"I get that you're taking this day by day, but it's making it really hard for me to plan my week. "
While I've canceled all my weekend shifts of hostessing and modeling, I kept the weekday shifts. I think Justin thought his mom would hang out and wait until Friday to get this ball rolling. Also, medical school is easier to miss on the weekends when you're just on call, rather than on weekdays when there are also seminars and journal clubs and stuff.
So today, when we went up to LA to meet with the family in the home to finalize the agreement to start hospice care and to move Toni home (by ambulance) Justin had this wacky idea that we'd be leaving LA by 3 p.m. He was going to meet with them, go visit Toni and then be home in time for some evening meeting he had scheduled. Needless to say, before the meeting was even over while I watched everyone suffer in their own style I hatched our plan to stay with the family for as long as possible. In my head, I found a way for him to cancel almost everything.
And then he did. And I did. And we drove back down to San Diego so that we can pack some clothes, finish up some business and head back up for the duration... or almost two weeks or something like that.
Meanwhile, Justin is trying to plan Jason's bachelor party, during which time I plan to chill with Oakley. In our continuing gallows humor (and in an action that Pastor Brian, whom I just spoke with, called healthy), Justin and I tried to plan the most convenient day for Toni to die. If it's before Saturday then he maybe can't go to/host (I think he's the best man) the party, though Toni would probably want him to. But if it is ON Saturday that would suck. But if it's Sunday then it would be better, except maybe he'd be stressed on Saturday and hungover on Sunday.... These are the problems of my little life.
Of course we realize we can't plan this.
I just hope that it's not... hell, I don't know what I hope. Mark bought four hospital gowns ("they'll be arriving any day now") for her to wear. That way she can have a fresh one every day. He hoped she could have a proper shower/bath at the SNF before being transferred, but they couldn't do it because she's not physically stable enough to balance.... Dorothy doesn't want anyone to cook in the house while Toni is there because Toni loved food so much (eating and cooking) that it wouldn't be fair that she can't eat even though she would be able to smell it cooking. She doesn't even want to brew coffee because Toni loves coffee--asked for it every day... Laura went to the store to buy the diapers; earlier this week they didn't have Toni's small/medium size, they just had the large ones.
I guess now all we hope for is that we make it back up in time. Justin reminded me to bring my camera--something he was unsure of me doing before. "I'd just like to get a picture of that smile one more time," he said. I hope I can catch them looking at each other the way they do. I wish I had remembered it today; when she got home, even though she had to ride in the ambulance, she was so happy to be there she just kept smiling and smiling and nodding her head and even spoke loudly enough that we could hear her no matter where we were standing in the room. Of course, then she was exhausted and slept for the rest of the evening even though we were talking and eating (secretly) in front of her. She even looks more peaceful in her sleep now that she's home. In the Nursing Facility everyone looked like they were constantly suffering. It was like a jail for the infirm. Purgatory on earth.
I've been trying to remember what literature gave us the idea of there being seven (or more?) levels of hell. I keep feeling like we're on one of them.
Birth and death. It's strange how these are the only two things every human has to experience personally as well as from the perspective of an observer, and still we're so incredibly bad at handling both occasions.
Anyone figured out rule #1 yet?
And a quick word on crematoriums: The social worker gave us a short list of several companies in the area with their prices as estimated by telephone for them. They cost beginning around $500 and go up into the almost $2000 range. What's the difference?
More car conversation/gallows humor:
"Do you get fewer bone fragments from some of them? Maybe they put you in a vase at one of them. Vase? What are they called?"
Giggle... "Vase... and then you could stick some flowers in there. Pen flowers. That's what we could do with you! And people could just pull pens out of you, because you're a writer!"
"They have those!"
"Not exactly that, but they're in that article in the magazine, about funeria art. And you can do all sorts of things--like have several little urns made so that the ashes can be split between family members, or one is like a cigar and is also a cigar holder..."
"We are not doing that."
"I know. I'm just telling you about it. I don't know why the prices are so different though; Maybe at the cheaper ones they use a Ziploc baggie? Or some use generic plastic bags and some use Tupperware?"
Drinking really doesn't help anything. And being hungover for whatever it is you were drinking to pretend doesn't exist doesn't make it disappear, it just makes you sick(er) for when you have to deal with it.
I need to find someone who knows Rule #1.
Even the dogs were off this morning--Stan wouldn't eat his food and Yaz was walking funny and then we met the devil who apparently lives in the cats across the street from our apartment. They are guard cats. Attack cats. They actually took a swipe at Stan and Yaz. A SWIPE! And there I was telling the poor puppies to leave the cats alone. Stupid scary cats.
Procrastinating also doesn't work. It doesn't even help.
Monday, May 28, 2007
She just had a baby--well, not exactly just, it was almost a month ago.
Justin's mom is dying.
I'm not good with anything old. And Justin's mom isn't even old (59, to be exact), but by virtue of her illness and her dying-ness she falls into the category of things I'm not good with. I wasn't good with bandaging Justin's bloody foot after his last surgery either. But he's not old. We weren't even 30 yet, then.
I am good with newer things. I don't have my own new baby, maybe never will, but I've changed lots of diapers on new babies, and bigger babies who haven't quite figured out the potty yet.
I just want to swim in the pool of new-baby life for a little while.
But, for now at least, I'm not allowed that life-preserver. I am stuck on the deep end, trapped in the diving pool, while the new mamma and her family insist on kiddie-pool privacy and over here I live outloud and look for someone to help.
Saturday, May 26, 2007
But it's upper paw was stuck in rigor, lifted in the air. It's pink mouth was crawling with black specks. I looked away.
I just ran into Shira and Jay in the Garden. Shira told me about her day in orthopaedic surgery, how she is strangely comfortable talking very bluntly about death and dying.
It occurred to me I have not seen much death in my life. Aunty Mercy in her coffin, looking like someone else, with her nostrils flared and her eyes shut. My nieces had felt guilty because they wanted her to die--they were young and her Alzheimer's ruined life was sucking away their mothers' attention from their own growing pains. Fifteen to twenty years my junior, they did not get to know Aunty Mercy the way I did. She never knit sweaters for them the way she did for me. She taught me to make rotis and lemon meringue pie and took me to Saturday School at her Seventh Day Adventist Church. I told them she didn't die because they wished it--that she died because it was time for her to die and that her suffering was over because she died.
It occurs now to me that the medical students have all seen life and death in ways I never had. Justin has spent days working in labor and delivery, in the newborn clinic, in medicine. He has informed families that their loved ones are dead or dying.
I buried my dead hamster in junior high.
I was with Max, our Australian Shepherd, when his vet of 14 or so years injected him to sleep peacefully...
I wonder where I'll be when Toni dies. If Justin and I will be there, or if it will happen while we work in San Diego. I've never seen a person die. I don't even like to see people being really old and ill in nursing homes--those people who wheeled themselves around the SNF with drool and food on their sleeves, their thick glasses sliding off their noses, that smell of bleach and aged bodies pooling.
Justin thinks maybe we should have a wake. Toni might have wanted that--a celebration of her life at whatever used to be her favorite bar (knowing Justin and his friends and their parents, I'm sure she had one) before she chose places where she could wheel up to the table and still be able to hear. Before her drinks were always poured in short glasses so she could hold them without spilling, almost. We could tell stories of "remember when" and they'd be the good stories. We could drink whatever she used to drink and what we want to drink and maybe eat or barbecue or something.
It doesn't seem like the kind of thing we can just let happen one day and not mark with some sort of significance--if she doesn't want a funeral in the traditional (or my Christian) sense of the word, shouldn't there be something?
Maybe this is part of what the hospice people help us figure out. I'm sure a lot of Americans die this way these days--without a church family like Justin and I have. Without the people who prayed and spoke at Aunty Mercy's funeral and arranged the casserole laden reception in the church hall.
A wake seems more her style, anyway.
But twelve hours!
What to do with such luxury?
I can clean the house--a desperate need, a noble act and a sensible one. Soon we might have visitors and they should have a clean place to sit, to sleep, to stare or speak.
I can lie in my bed until I finish this book--a riveting read (though Justin would say it's like all good books I start; I disappear into them, I'll carry them with me, read at every chance possible: walking anywhere, while cooking, while brushing my teeth, during dinner if that were allowed... (sometimes at stop lights--shhhh! don't tell!)). It's a book I've had for sometime but couldn't get into because it was too painful and graphic and horrifying--it's Alice Sebold's Lucky--a description of her rape and recovery and prosecution of the rapist. True story I wish she had published in 1991, but books about that didn't exist back then. Eight years later--1999--she published it. June 1981 her life changed forever. I can read it now because I need to sink into someone else's horror story; it steals me away from the one we know to well. It is my escape, just as it is her release.
Anyway, today I have the luxury of time and silence. There's enough food in the house that I might even get away without talking to or seeing anyone the whole time. But I know the phone will ring. It'll be Justin. Or I'll call my mom. But I'd like to go 12 hours without talking about hospice or death or dying, if I have to talk at all. Perhaps I'll go to the Garden and drink coffee and read curled up in one of their rocking reclining chairs and drink mocha. But in its Cheers-like fashion its my social living room; not an anonymous Starbucks mega-coffee shop.
Twelve hours just mine.
I will take care of no one else.
And then on Tuesday, I'll be at the hospice meeting at Mark and Toni's house. Justin said I was helpful in the first meeting, the one at the Skilled Nursing Facility (SNF). That was a break through in our experience--I'm in. He knows he needs me to coordinate this life; that the real insiders are too stuck, that their words if they have them are trapped by paralyzed vocal cords that would crack with grief and truth if they had to speak alone. Plus I've watched this mad-drain swirling for six years and I know what new outsiders need to know to pull Toni through to the end in the midst of Laura's incessant chatter of unknown bands she calls famous and photographs for free, and Dorothy' s broken heart and amplifier-hearing-aide and need to help though she also needs her oxygen.
I just need other people to deal with any secretions. I'm not good with secretions. I'm the words woman. At church, at work, everywhere else I am the Queen of Hugs--even for the puppies. But in that house with this family all I have to give is words and photographs.
Somehow, that will have to be enough.
But these, these are my 12 hours, and I will take them as they come. Too soon they'll be gone.
Thursday, May 24, 2007
Since Brandon is out of town and doesn't like Indian food, we ate Indian food at Bukhara in Huntington Beach. Like I said before, Oakley's mom is sick like Justin's--and both of them, the kids, have said, "And she didn't even talk to me!" As if the children of these women hold a special power to make the dying speak.
As usual with Oaks, we spent part of the time talking about death and dying and part of the time shooting the breeze and actively forgetting about what we weren't talking about. Their moms have been sick for years. Cancer and its friends surgery, IVs, chemotherapy and radiation are all part of a gang that jumps people in for life.
So, here are the Oak'ism topics for the night: roller coasters and funerary arrangements.
Oakley is Thai, her family is Buddhist, and so is she, though she went to Catholic school in Thailand and did high school, college and her Masters degree in the United States. On the way to the restaurant we were talking about various aspects of cremation and burial.
Justin and I had just spent a couple of hours at his mom's house talking over hospice arrangements for Toni with Mark, my mom, Dorothy and Laura (Mark's mom and sister--Toni's caregivers). Laura held Dorothy's amplifier up for her--it's like a Walkman headset attached to a little device that picks up all the sound in the room. Everyone was talking at once and Justin cracked his knuckles until she scolded, "Stop cracking your knuckles!" My mom and Justin both laughed and thought she was being maternal--my mom and Toni both always told us not to do that, but Dorothy's amplifier picks up the little sounds (like the dog's claws on the hardwood floor, the rustling of paper and the cracking of knuckles) more strongly than anything else. Justin was torturing her with the popping sound.
Part way through the conversation we explained that one of the options was to put Toni on a bunch of machines--a feeding tube, ventilator, etc. but that her quality of life would not improve; it would just keep her in the same condition she is in now for longer.
"I don't want any of that!" Dorothy piped up.
We all just kind of looked at her like, huh? And then we started laughing. Mark said, "OK. Maybe we can get a two-fer. We can put both of you in there together."
"Maybe they have family packages."
"Buy one, get one free. Or half-price."
"Like you can buy a family grave plot..."
Oakley started telling us about cremation being required in her religion. She tried to explain that the length of the grieving time varied based on if it were an expected death or an accidental or sudden death--one of them involved a 7-9 day funeral and prayer time, and one was for five days. Something about the spirit and resting or being freed or something like that. She remembers that for her grandmother's funeral (a princess's funeral, which she attended when she and her brothers were kids) part of the ritual included pouring water over the hands of the dead and saying a prayer--all the grown ups see the whole body but for the kids they put up a screen, so all the kids see is the hands.
I used to always think I wanted to be buried in a coffin. But the more I think about it all--the Earth, our resources, my body, ashes to ashes v. my fear of bugs and small spaces.... I'm starting to be more in favor of cremation, were I to die now I'd say go for the cremation. And even though I edited an article about urns as art and I know people who even keep their pets' ashes in urns, I want to be scattered in the ocean. So does Justin, and since he's not allowed to die before I do... We'll need to think this through and work something out about the timing. Neither one of us would do any good without each other.
Then, during dinner, we started talking about roller coasters. I'm pretty sure they came up in conversation because Toni is in a facility across the street from Knott's Berry Farm.
Justin and I LOVE roller coasters. When we first realized where we were, we thought maybe we'd go to the first family meeting and then get the evening rate for the park. Of course, before the first visit was over we realized there would be no amusement park mood--and with all the new roller coasters the evening rates were a thing of the past.
We are old.
So Oaks said, "I've been on a coaster, but I've never rolled."
We just looked at her and laughed. Oaks has a degree in Communications, but English is not her first language--and even if it were it would be English English, not American English, so she always manages to communicate her point, but often uses a unique combination of words. Or she makes up words. This is another thing I love about her. Turns out she meant that she has been on the kind of coaster that goes up and down big hills, but not the kind that goes upside down--or, rolls over. It's her fear of heights and falling that gets in the way.
"I'm sorry. We shouldn't be laughing," she said at one point.
"No way!," I said. "Are you kidding me? These have been the best 60 or so seconds of the day!"
I told her that I'd been using her word alcoholized at work lately. It's when you're a little tipsy, but not yet drunk. I figured in exchange for borrow babies and borrow puppies it was a fair trade.
Then Justin and I went to my parents' house and slept until about 10 a.m. I of course spent some of those hours reading by very dim light shining through the window--it reminded me of hiding under the covers with a flashlight so I could read at night without getting caught. Then, when they took the flashlight away I read by the light of my clock radio. What can I say... I'm obsessed. But now I'm also old, and soon I got tired again and went back to sleep.
Today we visited Toni and had the meeting with the hospice workers. We thought it might be the following week, but the agency called before we even left Mark's house last night. That's why we ended up spending the night--and cancelling our San Diego life for Thursday too. The nurse and social worker were very nice and comforting even to us, and are going to do a home visit on Tuesday to check on the situation and caregivers before any decisions are made.
This is what blew us all away: 7 to 10 days.
We knew that she wouldn't have the feeding tube through her nose when she left the facility. I thought it was because it's not comfortable or healthy to have for too long--it goes into both nostrils and lets liquid nutrients and medication drip down into her esophagus. I imagine that such a thing would eventually cause a lot of wear and tear on a person's insides, which is why they are temporary until they are not needed or are replaced by a tube that goes directly into the belly from the, well, belly area. But she can't have that at home because it's a liability to everyone--if it moves it could go into her lungs; there has to be a certified person there all the time to use one of those. Plus since it's not comfortable, it's contradictory to the concept of comfort care.
Problem is, removing the tube removes the hydration. Turns out letting a person dry up but keeping her mouth comfortably moist (so her lips aren't dry and cracking and so she feels OK) is actually a really good idea. It eliminates, well, the problem of elimination; so her sores from that will be relieved, plus her choking cough will decrease because there won't be so much to choke on and apparently it's a more comfortable way to go.
It also seems fair to the patient--I mean, it really speeds things up (think of all the protesters in jails or elsewhere who go on hunger strikes but still drink water--they can strike for AGES and they don't die, they make whatever point they want to make and then start eating again). But to keep hydrating someone who is sick of/from living would just prolong her suffering.
But seven to ten days. We can look at our calendars and plot. Approximate. Heck, might as well take bets. Lori and Adam are doing it for the birth date of their June baby...
1) This weekend is Arman's bachelor party.
2) Next weekend is Jason's bachelor party.
3) Then there's a freebie.
4) Then it's Jason's wedding.
5) Then it's Arman's wedding.
6) Then we're going on our road trip to New Mexico with Brandon and Oakley to visit his family.
1.5) Justin starts inpatient pediatrics rotation.
2.5) Justin takes his clinical examination exam.
3.5) Justin prepares for the national shelf and board exams.
3.7) Justin takes his primary care shelf exam.
4.5) Justin takes his pediatrics shelf exam.
5.5) Justin takes his Step Two Part 1 test in LA.
7.5) Justin takes his Step Two Part 2 test.
Seven to ten days. The hospice people say they can tell when a person is coming to her last day or hours, that they can call the family to gather around.
But all the fertility books said you can predict when you are likely to conceive and I know it's all just about averages. There's no way of knowing exactly when anything will happen. There's no way to say, "Let's keep feeding her until after Justin's 33rd birthday or Jason's wedding or at least one test...." That would be cruel and unusual. That would be selfish. That would be silly, because waiting until the perfect day to take the feeding tube out does not perfectly predict the day of death, which will never be perfect anyway.
So I suppose all we can really consider is: How soon can we make her more comfortable than she is right now? How soon can we give her the one thing she has been asking for consistently for the past 26 days--to go home? How soon can we let go of someone we have already given permission to "let go"?
I wear a skirt and do my hair. Might even wear a little make up. Some how it feels better to be well dressed. Justin figured out he hasn't been depressed for 25 days, he's been grieving. It's like we're the attendants at a very long funeral.
As I get ready to go, he looks up information about what he's doing.
Yesterday he said, "I'm killing my mom."
I said, "No you're not, you're helping her die with as much dignity as possible."
"Sugarcoating it doesn't help. It doesn't change things."
So today he prints out articles and tells me there is one about withholding antibiotics for someone with pneumonia and dementia... I get to read that and discuss it with him on the way up.
I miss Tolstoy.
He comes into the bedroom to put on his prettiest blue shirt, the button-up one that makes his eyes bluer--like his mom's. "The morbidity rate of someone in my mom's condition, with pneumonia, stupor, dementia is 22%," or something like that, he says. I've lost the facts. All I know for sure is that she is dying. That he is for sure making the right decision.
The research comforts him, makes him feel better, will give him something to back up his opinions when he talks to Toni's wife, his step dad.
"I just want to make sure I'm making the right decision. It's a one time only choice. You can't come back from death."
And now he says we should shut the windows up and get going.
I log off and know I won't be sleeping in the car this time.
Wednesday, May 23, 2007
So "what are you doing today?" people ask. I say, "Walking the dogs, doing the laundry, taking Toni of the feeding tubes." Though perhaps we'll keep her on them while Justin is out of town, so that he can be here if she dies quickly (what will a 100 lb. 5 foot woman do without nutrients being pumped into her?). Then at least Mark won't have to be totally alone. Then at least he'll be able to call about arrangements. Then at least there will be hugs.
What does one wear to a meeting like this? What does one do to keep from going over the edge with grief and confusion and sorrow?
My mom will be there--the sometimes teary but usually professional mediator of pain--the queen of pulling up boot straps and carrying on with business. This kind of stuff has been her life's work for years; she's coming in handy now. If I had my druthers I'd have Pastor Brian there too, but that's my pastor, my church, my friend, my faith... So my mother will do just fine. Thank God she doesn't leave on her dream vacation with dad until Saturday.
I'll keep you all posted as much as possible. For now it's just this surreal experience of daily life with a death overlay. It makes me sound callous when I talk about it.
Tuesday, May 22, 2007
Then, yesterday, we met with Pastor Brian (which I actually did set up), and apparently Justin's emotions caught up with his intellect. Tonight, I heard him outline the steps he has to take for everything--medical school, friends' weddings, his mother's impending death...
I finally realized that for 24 days I've been looking for Justin--the guy who always has everything so organized that we never run out of anything. Last squeeze of toothpaste? Just reach for the next box and put toothpaste on the shopping list. No more paper towel on the roll--no problem, it's stocked in the cabinet. Got bills? Paid early and more than the minimum--just check the spreadsheet he created for our finances. The guy I've been living with has been the baby deer stuck in the headlights next to the papa deer (Mark) who's really been paralyzed by the whole situation.
But now, suddenly, Justin is back! However painful the situation is, he has plans, he has ideas, he has presence.
Which is a good thing, because the situation is unfolding regardless of our degree of preparation.
Tomorrow we'll be in LA... having a meeting about hospice and Advanced Directive choices.
I wasn't ready to sleep, so I blogged the last entry and then napped too.
Then the phone rang.
The phone should never ring when someone is sleeping. I know today we have the option to turn off the ringer, but I just can't do it--I'm always afraid I'll miss something.
Justin was so startled he didn't know what it was, but after I told him it was the phone, and he put on his glasses, he grabbed it.
"Want me to answer it?" I asked.
He handed me the phone.
"Hey there. How are you doing?" This is how his step dad Mark starts phone conversations with me. I never recognize his voice, which is embarrassing since no one else uses our home phone number but telemarketers. But based on past experience and current situation, I knew it was him.
"I'm OK. How are you? Do you need to talk to Justin?"
Quietly, I tried to listen while Justin listened and shook his head. After they talked I waited--Justin hates it when I ask but after almost five years of marriage he knows I want to know what he talked about with other people.
I do a lot of waiting now, as quiet as I can be (which is a HUGE challenge for control-freak-caretaker-who-claims-not-to-be-a-caretaker Olaina), usually holding his hand, or hugging him, or resting my hand on his back or his shoulder. There is nothing I can say or do to make any of this better.
"He said she's had two good days in a row."
"What did she do?"
"She talked to him."
Silently, we both know this means she whispered words like: "hello, no, I'm hot, I'm cold, I'm OK, I love you too, I'm tired." Maybe she smiled at him. Probably she smiled at him--she smiles when we tell her he's coming to visit. But that whispering I'm mentioning, it's whispering with great effort. You can see her facial muscles pulling the skin around her lips together to form the shape of words, and you have to lean in with your ear to her mouth to catch what she is saying. The whispers are the accomplishment of her day--after each brief conversation she seems to collapse further back into her pillows, exhausted.
But if you loved her and knew her (especially if you knew her before the doctors), you'd probably do all you could to hear those "I love you" words whispered and see that smile, the one that now looks like the smile of a child being told to smile for school pictures--teeth showing, dimples, necessary, and then gone.
Justin says Toni and Mark used to go dancing together a lot.
At our wedding, July 20, 2002, he asked her to dance. We didn't make a big deal out of family dancing so that we would not embarrass her, so the dance floor was full of guests when he asked her to dance. He pulled her up out of her wheelchair and carried most of her weight for a few minutes of one song. When I saw them, I grabbed our photographers and said, "Go over there, take pictures of him with his mom! I don't know how long he'll be able to hold onto her!"
How would you like to do that kind of math?
Then he called the Skilled Nursing Facility (SNF) to get more information on her condition and the Nurse Practicioner said she was not showing much improvement and the next recommendation would probably be a feeding tube that would be surgically inserted into her belly. That kind of GI feeding is on the DNR--so she won't be getting it. The NP said it would probably mean she has about two weeks to live.
Then he talked to the Speech Therapist who would make the order and the diagnosis (she's the woman trying to get Toni to swallow so that she can eat again). No new news.
So now, who tells Mark? And does he get told before we go up or over the phone tonight (since obviously it's Justin who will tell...)
Justin told Mark today that he didn't think his mom would realistically get better to the point where she was before she got the pneumonia. When he retold me the story he finally started to cry. It's been 24 days of this and he's been tearless the whole time.
He has a cruise-to-Ensenada-bachelor-party this weekend, he has to finish pediatrics, he has to take the shelf exam for that and for primary care and something else--clinical?--and he has two tests for Step Two of the Boards between now and the second week of July. Oh, and we're supposed to go to New Mexico on a road trip with Brandon and Oakley.
And somewhere in there, his mother is likely to die.
At one point Brian said to me, "And you want a plan."
"Hell, I want a flow chart!"
So today I'm going to make my flow chart--just for my own comfort--and since we have a scanner I'll share it with the world. What to do when a loved one is dying. It's not like we can choose what's going to happen next--we didn't choose the pneumonia diagnosis ER-visit Sunday, we didn't choose the DNR phone call two hours after the Ambien induced sleep, and we didn't choose the brain tumor that started all this seven years ago.
Justin and I are very tired and very depressed. It's amazing we muddle through the day. If Yaz and Stan (the neighbor's puppies, and one of my jobs) didn't need walks each morning before 8 a.m. I'd stay in bed much of the day.
More later... I'm off to a doctor's appointment.
Thursday, May 17, 2007
And then someone gets sick.
The time around that person (Toni, now) moves in slow motion. We want to know what the next steps in her care are, we want to set up her home-health care in whatever way turns out to be possible, we want to know when they will give her a mattress to prevent bedsores (especially bad for a slow-to-heal diabetic), we want to know when they will help her get strong enough to sit up in a regular wheelchair, instead of a giant recliner on wheels, we want to know when they can take her home, we want to know when she will be covered by Social Security or Medicare or Medical, we want to know when....
But life in a Skilled Nursing Facility in the subacute unit crawls. We wait to get past the old man who is wheeling himself through the hallway, occasionally asking how he can get out of here (we want to point to the giant french doors at the entrance, but he's been by those--he knows). We wait for the nurses to transfer her to the chair, to push her out to the courtyard, to put her back in the bed, to change her diaper, to hook up her IV and her feeding tube (still through the nose), to finish her oxygen treatment, to draw blood for labs, to tell us nothing we don't already know--nothing.
We drive the hour and a half to the facility, leaving behind our San Diego speedy lives and enter the time warp, then we drive back and are so emotionally and physically exhausted that we cannot do what we would normally do on the next day because we have to make up for the time we have lost.
We are lost.
I want things to move faster. But the hearts of the husband and the son of Toni are holding on and pulling back---as if they were on the winning or losing end of a tug-of-war game. I know the outcome: death.
But no one wants to face it, discuss it, prepare for it. How to handle the next close call is a family decision, but the family doesn't want to prepare for that decision now, while things are relatively stable (in a subacute, tube-living kind of way). But I do not want to make these decisions in the middle of the night again, through the fog of Ambien-sleep, on the telephone with the man on the other end acting like a deer in the headlights of reality.
So my grip on reality seems callous. I seem like the harbinger of death. I am received with the quiet eyes of horror looking at truth; if it were a soap opera scene there would be yelling and I would be throw out, I am sure. But it is not. It is two stoic men, two traditionalists who appear strong but I know are squishy inside. I go outside and cry, wipe my eyes and come back in to appear strong and capable.
But I am capable of nothing but waiting. Waiting is all any of us can do.
It has been more than two weeks though, and someone needs to earn some money, someone needs to finish his third year of medical school, someone needs to take care of household matters.
I teach my kids about the Existential view of time--how it's fast and slow depending on perspective. And now I see this multi-layered view---fast and slow at once. It's like being transported between worlds and realities and fantasies--though we do not get to choose when we go. We wait for the phone to ring. We wait for the answers to come when they feel like coming. We wait.
I spend a lot of the time thinking about how long I want to live and what I want to allow to be done to my body to keep it alive once it starts to consider letting go of this experience of life. But even for my own life I cannot decide--so many mitigating circumstances would affect my desires. Does she stay so she can smile at her husband and son one more time? Does she want to watch more episodes of Animal Planet and Magnum PI? Does she want to eat Mexican food if she can ever swallow again? Does she want to see Justin graduate from medical school? Does she want to meet grandchildren that are not likely to ever exist? What would I be waiting for? What would I hold on for? Would I hope to die at home, in my husband's arms, peaceful and quickly or slowly... but no tubes. Just pain killers and numbness and ending; while someone read me a story and someone sang a song and someone rubbed my feet and I looked at flowers or paintings or God?
Life is such a strange occurrence--statistically speaking it is so unlikely that children are ever conceived, yet people somehow get pregnant accidentally. And then, when just decades or even one century ago, people are old or sick and nature would have taken its course and people would have been mourned and allowed to die, we hold onto them so tightly with our medications and our wires and tubes and love.
And there is a population control problem. Go figure.
Tuesday, May 08, 2007
"No, I will not pretend I did not come to a meeting we scheduled and be ignored because you have other people you are meeting with or talking with on the telephone."
"No, I will not attend a meeting the following week that we never confirmed."
"No, I will not work as the Editor of a magazine for the wages of an intern, at a job that is supposed to be 10-15 hours per week but turns out to be 30-50 hours per week. "
"No, I will not meet with you even after I resigned or answer e-mails as though I am still your employee."
No, I will not be abused by employers any longer.
I have stayed in way too many relationships and way too many jobs for way too long to be stupid enough to let this kind of behavior continue. I am finally learning to listen to my instinct and follow my intuition. I am finally learning to put really important priorities first (my health, my husband and our families) and everything else later.
I feel so relieved to have jobs that I only have to work on during the time that I am at that place of business. I feel so relieved to have the time that I am not at work actually belong to me; to not have to feel guilty that I am not doing work for someone else when I am at home, or going out instead of working, or doing something pleasurable instead of work-related during my free time. I barely understand how to live like this: free.
But I remember that when I was on disability and I had time to go to the gym and paint and walk just because I felt like it, sometimes, when I left the house I thought to myself, "I can't believe this is really my life. I am so privileged. I am so lucky." And I am getting some of that feeling back. It is taking up the space where a voice was telling me, "I should be doing such and such for so and so; maybe I can work on that while I do whatever it is I really want to be doing."
I am free again, and that is what makes my life worth living. It's not the modeling or the hostessing. It's the time that I'm not spending worrying about something that isn't that important in the first place; it's the time that is mine to enjoy and spend as I wish that makes my life worth living.
I am finally discerning my work life from my real life.
This is what living really is.
I did not quit. I made a healthy choice.
And strangely, someone seems to have missed it and still wants to have a meeting with me about editing.....
Maybe I or they really do live in a vacuum!?!
Monday, May 07, 2007
Just do it.
Do not doubt yourself.
Follow your instinct; every time you do, you're glad you did it. Every time you don't, you tell yourself you should next time; that that is the lesson you learned. Learn it! Accept it!
Just do it.
(a pep talk to myself). Letter to be written later.
BTW my hands still smell like bleach from work, but at least it was fun and I am happy (and sleepy).
Thursday, May 03, 2007
Wednesday, May 02, 2007
Why grief when no one died?
Close enough, I guess.
We both woke up a little later than we should have with that dreadful feeling of knowing something bad had happened the day before and knowing we were facing more to come, plus whatever it is our regular lives required of us now that we're back home. When the details pushed their way through the fog they held us down like wicked bullies getting ready to throw the first punch.
Together, we dodged it for a while by walking the neighbor's dogs. It's easier to forget bad times when two big dogs are thrilled to see you. Then, breakfast together kept us moving. But I had to go to work and he had to study and by the time we got home the punches had been thrown: Justin's step dad had called with updated information and frustration, Justin has become a vault filled with continually multiplying weapons of mass destruction (guilt, anger, fear--all the usual terrorists of the soul), and I am constantly trying and failing to figure out the combination lock to open him up and disarm the bombs before they explode. But my tools of reason, common sense and limited memories are no match for his love, heroic desire to protect his family and lifetime of memories that include a reality so vastly different than the one we live in now.
So, we are still spent. After playground fights even bullies are worn out, but they get to have that feeling of nasty victory, while their prey just know there is more to come tomorrow.
Medical update: she's still in the ICU, is supposed to have a test tomorrow to see if her shunt is blocked (a tube runs from a hole in her skull to her stomach to drain the fluid that builds up around her brain), later they'll have to decide what to do with the information garnered from that test (the topic of today's clashes), the language barrier between the doctors and the lay people thickens, and the translator has left town. I, by the way, am part of the translation team--Justin may understand the medical terms, but I ask question after question until they are distilled enough for me--someone who barely understood high school biology. I am also not afraid to ask hard questions that he won't touch because he is the Son Full of Family Memories and I am an Outsider--Not Part of the Family (ouch!)--and Can't Make Family Decisions. For a change, he is Love and I am Logic.
Sometimes, when they are steeped in their own defense, the bully's victims unintentionally turn on each other, I guess.
Tuesday, May 01, 2007
And the question that can only be answered once and maybe suddenly:
But when I look around in the ICU as we walked in and out of it throughout the day, I see an old man who has been lying propped up in bed all day with his eyes closed and his mouth wide open in a perfect "O." His lips have become drawn more and more inward by 7 p.m., when we leave. No one has visited so many of these people. The woman next to Toni's bed has been calling "help" through her air mask intermittently, trying to get out of bed, trying to go home; the nurses have to ask her to lie back down, to say her name, tell her she's in the hospital, tell her she'll go home later, that her daughter called to ask them how she's doing.
She has pneumonia too. The masks she and Toni wear push oxygen into their lungs because they cannot breathe deeply enough through their gunky lungs to have their blood reach the correct balance of oxygen and carbon dioxide to run their bodies.
Yesterday Justin and Mark discussed Toni's DNR again. When we got there the only treatment she was supposed to be spared should she code was being intubated--no having a breathing tube put down her throat so she could be on a vent that could probably never be removed, given that she regularly has such trouble with swallowing and breathing. Justin clarified that it's an all or nothing situation. CPR would break her ribs and probably necessarily be followed by intubation. Not to mention it would hurt like hell, she would have trouble recovering from that and it could cause even more problems for her health. He explained that using the paddles to restart her heart would be an additional trauma for her body. They decided that she could be treated with medications only, that no mechanical "heroic measures" would be taken.
So I am left wondering when these heroic measures began--when Justin decided they had to take her to the ER because she wasn't breathing enough on her own as she lay in her bed at home? When the placed the bi-pap mask on her face to help her get enough oxygen? Did we go to the ER so she wouldn't die? Her left lung was full of mucous--no air. Her right lung was filling. She was drowning. She could have died in her bed; she was already unresponsive and maybe she wouldn't have suffered. She wouldn't have screamed (as well as she could scream) when the technician stuck her again to take her acidic Ph-Unbalanced blood and test it again. This tiny woman with tiny veins and thin bruised skin. Why are her hands so swollen? She's not doing her physical therapy at home when she's alert. Does she want all this treatment? Next time she gets pneumonia does she want all this treatment? How does a son, a husband, an -in-law ask? "Do you want to live like this or do you want to die the next time an opportunity to die arises?"
Which brings me back to all the old people in America sitting in ICUs without visitors getting nutrition dripped into their veins with their cocktail of medication. Why? What are they staying around to witness? Will they see the next graduation, the next wedding, the next grandchild? My grandmother couldn't come to my wedding, didn't probably know it was happening while she lay in her hospital room with her Alzheimer's and her husband who would not leave her side. Who is all this medical attention serving? The patient? The family? God?
But Toni is not old. She is younger than my parents, who leave tomorrow for a trip to northern California and then in a few weeks to something like Russia, Sweden and Spain on a dream vacation to celebrate their miraculous retirement constructed by my RN, BSN, MBA mother's economic safeguarding and investing luck and genius and my brother's plane-tickets gift. Toni just looks older than Mark, who is younger than her even, because she has had brain cancer and probably a stroke and for seven years has not been able to perform basic life functions--like bathing--on her own.
How long do people--the people attached to any of the patients in the ICU (except the obviously young man whose room is filled with flowers and stuffed animal Teddy bears (I hope he has kids) whose leg is in a giant cast, who must have been in an accident) who are one or two steps from death, one or two drips and forced-air breaths from freedom of this earthly body--how long are the people who have power of attorney or who just love them or who just work in the health care profession, How long are they allowed to keep this looks-like-torture going for these humans who have already lived the fullest lives they will ever live?
In ancient countries and other cultures and places without plastic (that commercial has really been bugging me lately) death is not dodged the way we attack it in first world countries or rich parts of third world countries. It is welcomed, the spirit of the body is blessed and sent off to watch over the living in some peaceful way. The old are respected, not left to not-die alone with their mouths wide open.
What are we trying to achieve here with the living-dead and the dead-living?
At 6:30 p.m. the nurse offered me a chair, "You've been standing all day." There is one chair for the three of us. I said no--it's too late now. My husband is an amputee; Toni's husband is exhausted and holding her hand. What is the point or the right for me to sit down?
I think of Annie Leibowitz's photos of Susan's decline from cancer and wish for my camera, but know this experience will be documented only through my words and my memories.
My outsider inside observations of a life saved so many times it is worn thin and its caregivers are worn out.
One day this week or next they will take her home and the regimen of carrying her and shouting (the mother-in-law is deaf, the sister-in-law can yell and no one will hear but the woman who cannot stop any of what happens to her from happening) and helping will start again. Till then the young one goes out, the old one rests and the three of us hover Toni's bed like helpless and confused guardian butterflies.
Maybe today I'll be the visitor of Elizabeth, since there are only supposed to be two visitors per patient in the ICU. I'll hold her wrinkled hand and tell her she's OK and maybe read to her while I wait for doctors to visit Toni's bedside, and then I'll turn to them and their ideas and help to distill their words into water we can all drink. Maybe today the family that has been crying in the lobby and the red-faced teary woman pounding her fists in frustration will be gone, maybe the chanting monks at the bed on the other side of the long room will return or maybe that patient has gone somewhere else, maybe to heaven because there is one God and clearly thousands of roads to that house of many rooms where He will host us and we will rest and work and live when this oft-damned life on Earth is done.
She's not going to code; she's been improving. It would take an act of God for something to really change. And God has an awful lot going on down here on His war torn burdened Earth.
Oh, by the way, my best friend Amanda's baby was born yesterday. Mia. Perfect size and weight.
Good news and bad news. But it wasn't an even trade, not like when I gave up my baby-unbaby the day one of our church babies was born. I like to imagine he knows, knows that my miscarried baby's spirit floated back up into the circle of life so that he who had lived longer in his mother's womb could come to live with all of us. I like to imagine, that if Toni had died when Mia was born a bit of the "real" Toni's feisty spirit would have leapt into the breath of Mia and lived through her. The church-baby stares as me and smiles, as if he knew, I used to look away because it hurt too much. But now, over a year later I can hold him and love him (and his new sister) as if (and it must be true) borrow babies are all I need. Fiona calls me a baby magnet because as soon as we met, her shy two-year-old cleaved to my outstretched hand with a smile she doesn't usually offer strangers. Maybe they know I have just enough love to give before I hand them back to their parents.
Maybe Toni knows that too. Yesterday she said she wanted to go home. Maybe that family has enough left to give to keep taking care of her and the memories they have of a fuller human life.
Me, all I have to offer them is love, given in bottles of water, smiles and prayer.