This Present Chaos

view from the living room window in St. Paul

Once upon a time I was married, and one Sunday afternoon the man I was married to told me the marriage was over and that he would be marrying someone else. Oh, and he and his new wife wanted the house so they could raise their new family there in the house where my husband and I had raised our daughters.

This blog was born out of the chaos that ensued, and in that time this blog had another name, which by a court order, I was required to change. I had another name then too. But my old self had plans in that time of chaos. I would leave California and live in a new place with my new name, and so I bought a condo in St. Paul, Minnesota not too terribly far from the little town in Iowa where I grew up.

Plans. Plans are good. But I fell in love with a man in Los Angeles. Love is better than plans. So I stayed in California, and first one daughter and then the other--and for a brief while both of the daughters and both their partners lived in the condo in St. Paul. Years have passed. The man I fell in love with after a first date on post-card blue sky day in Griffith Park got lung cancer and died four years ago. My mother died nine months later. Sometime in the next year I will leave the house I shared with my mother and where the man who loved me took his final breaths. My budget must shrink to fit my shrinking alimony.

Last week the daughters and their partners  moved into a house of their own. I'm not in my 50s anymore, and I do not want to live in the lovely condo on the 3rd floor of a historic building with no elevator. I am too historic to cross the icy alleyway to garage without falling down. Too historic to trudge up all those stairs with bags of groceries.

In this new chaos there will be painting, and floor sanding, and odd little fix-it tasks, and way too much cleaning. There will be too many books, and what do I keep and what do I sell, and what do I give away conversations inside my head that must eventually translate into some kind of action.

In some months, I'll start a new life somewhere else. I'm envisioning a tall building with an elevator and a view of the Mississippi River.

this present chaos

Our Last Night in Pillville

It's been unusually hot here for months in case you haven't heard. Like the weather gods have finally complied and made it possible for my mother to remove her long underwear and enjoy the patio. She has a suntan--which might be a feat that only a few hospice patients manage. We aim to please here in Pillville.

The wind kicked up this afternoon. It's blowing off the ocean and it's blowing harder than it has in months. There's an eerie pinkish yellow gray light out there as dusk settles in. Now the weather gods are saying go. Get out of town while the getting's good.

I wouldn't say the getting is good, exactly. I think the getting is iffy. "I think she'll make the trip," the hospice nurse said. This is what the nurse has been saying for weeks--without the emphasis on the word think. I'm not going to weigh in with what I think. What I think doesn't matter. I'm going to put one foot in front of the other. I'm going to put my lips together and blow.

Wednesday Morning Beach Report (Delivered on Saturday) And the Report from Pillville

Some days you're the pelican. Some days you're the fish.

Somedays I'm just me in couch limbo. From my couch, I can see the patio where my mom likes to sit. And I can see the front door if we're waiting for some one to arrive like the hospice nurse or the handyman or the music therapist.

Yesterday the music therapist (beautiful wonderful talented amazing person) was here. She encouraged my mom to strum away on her harp.

We had friends over for dinner last night so they could see my mom before she leaves for Iowa. I forgot to take pictures, but it was lovely. The best I can offer is the grocery list. Can you guess what I made? My friend Carol brought watermelon, blackberries and raspberries that we threw together with some fresh mint and it made the most delicious fruit salad. Prune juice was not served. The milk and bananas were for breakfast. That's enough clues. Oh-- and there was champagne, flourless chocolate cake and caramel bars for dessert. And espresso. And love.

Today, I feel like my mom and I are both hummingbirds. But not the way you usually think of hummingbirds. We've buzzed around and indulged in plenty of nectar. Now we're resting. Delicately. On a strand of a palm frond, balancing.

Belated Wednesday Beach Report, News from Pillville, and a Brief Note from the Love Shack

Today, 10 a.m.

There was a little bit of everything at the beach today. A few surfers riding medium waves, almost visible islands, a modest variety of birds, a little drama. 

The drama: As I walked in the surf I saw a small child (I'd guess 4) trekking across the sand far ahead of his mother. The mother trudged about as slowly as a person can trudge, carrying a large beach bag and a beach chair while the kid headed straight for the water. Hi, I said. Hi, he or she said. It's pretty here, isn't it, I said, stepping between the kid and the water. I'd already gotten wet to the waist accidentally, having misjudged the waves twice. The mother was still only about half-way across the sand and the kid looked fearless, inching into the water. Aren't you going to go help your mom, I asked. The kid climbed up the sandy slope and headed her direction as she was closing the gap. I went on, looking back to keep an eye on the situation. On my return the mother was halfway back across the sand again. This time she was going away from the water towards an even smaller child who was now making the trek. The older kid splashed at the edge of the waves, the mom's back to him. Other beachgoers and a fisher woman seemed ill at ease with the situation too. We all hovered at the periphery, underneath it all a low menacing roar of some invisible something. Military aircraft, a dredger in the harbor, construction equipment, something. I couldn't see what.

Life in Pillville is mostly un-bloggable these days. My mom trudges through her days. Eats. Sleeps. Sits on the patio. Chats a bit--often with difficulty. Her body is failing, yet she does not seem to understand the significance of it. There are new physical ailments. Enough said.

Of late, I've found the situation harder than I ever imagined I would. The hospice is giving me a  caregiver respite. My mom will go to a skilled nursing facility. I will go to Indiana to go see the man who, last month, came to see me. I'll meet his family and some friends, spend time, and after a couple days, turn around and get back on a plane, ride the airport shuttle, get a ride to my house from the shuttle stop, and then get in my car to go pick up my mom. It all seems like a love shack fantasy right now, but the washer is spinning, and my suitcase is mostly packed. Tomorrow must go like clockwork if I'm going to catch my plane, but it feels possible. Easy even. Easier than any recent day in Pillville. I'll get up early. Do what I have to do, and ignore the low menacing roar that hums  beneath every day for my mom and me.

My kitchen island lined with documentation for my mom's medicaid application.

Pillville, the board game. I win!

Remember THIS?

I emerged victorious in today's round of Pillville after a fortuitous roll of the dice that landed me on a square that said this: Great job keeping all those old meds! You've saved yourself a trip to the pharmacy that would have meant leaving you hospice patient alone. You've earned a night out and a trip to the Finish Line. You win!!!

Notes from the Afterlife, Advice from Pillville, and Lovelovelove

August 20, 2012 minutes after our arrival, the long drive from Iowa over.

Warning: this might be my longest post ever. But there's love, booze, broken stuff, danger, death, love, and....more, more, more.

I broke a glass yesterday. A heavy tumbler in a slow motion plummet to the tile. The fall, the impact, the shatter seemed to unwind in slow motion. The sound of it too.

That was after I took my mom out for a haircut and barely managed to get her from the car and into the door of the salon. It was a very short walk--a walk that most people would not even describe with the word walk. Enter, maybe, or arrive would describe the track from car to door. I didn't bring the wheelchair. One of those mistakes to which I'll never be able apply the lesson learned because I'm not taking her out again. But we made it. Thanks to the presence of a bench, I didn't have to gently slide her down my leg and sit her on the sidewalk the way C drilled me months ago after the Thanksgiving night blackout drunk face plant.

The hospice nurse came for her regular visit after we got home. My mom was napping by then, looking pretty fabulous in her new haircut. Her pulse/ox was low-ish again, and her blood pressure was really low. 80/60. Yeah. Take a deep breath everyone. My mom is on hospice. She has lung cancer. For the third time. This is the way it is. She was alert and chatty, telling us how her putty-like legs didn't hurt and how she felt just fine. We raised the head of the bed and gave her gatorade. Told her to nap. The nurse and I went into the kitchen and she talked to me while I took the blood pressure meds out of my mom's pill box. She called in a prescription for a steroid. Then we talked about Iowa.

Today is the beginning of our fourth year in Pillville. My mother has said from the beginning that she wanted to go home to Iowa to die. Every time she said it, I told her fine, let me know when so I can buy plane tickets. For months already, we've had tickets for a visit there the first week in October. Yesterday the nurse told me that if there's any chance that my mom might be re-locating to Iowa, that I need to get her there "before the widow closes." That said, my mom ate a hearty dinner last night and walked around the house just fine. She insisted on scooping out her own ice cream--her usual bedtime treat.

Last night I dreamed of Dan. He came back wearing a new jacket, a pair of tinted designer glasses, and tight jeans. He was with a zaftig blonde, whom I disliked immediately. The three of us spent the night in the same house. He slept in my bed. I felt pretty smug the next morning while she slunk around refusing to make eye contact. I was in the kitchen when I heard a certain rhythmic sound coming from the bathroom. When the two of them came out and went directly out the door, I followed them into the street. We were in a big city and a trolley came by. Dan got on. I don't know what happened to the blonde. You could at least say good-bye, I shouted. He raised his eyes to look at me. Fuck you, I said. He shrugged. The doors of the trolley closed and our eyes held as he rolled out of sight.

Dan Paik broke more than a half-dozen glasses in the five and a half years we were together. He broke them at the table, in the kitchen, in the bathroom, and once in the garage. Other than the broken glass our time together was safe and pretty damn beautiful.

Pete arrives today. He's at the airport in Chicago waiting to board his plane right now. The first day of the fourth year of living with my mom is also another sort of beginning. Pete and I became Facebook friends in March. We knew of one another through the T'ai Chi Chih community (he's been a teacher a long time) and he's also a caregiver for his father. After a friend shared a couple of my Pillville posts, he asked if he could have my email address. Over a thousand emails and hundreds of hours of Skype later, we will meet this afternoon in person when he steps off the airport shuttle.

Two dear and trusted friends are coming to eat dinner with my mom tonight. I hope my mom continues to feel well. I hope I remember to eat dinner. I hope I remember to sleep. I hope I continue to trust the universe and that this story keeps rolling along, and that hearts, heads, glasses, bones, and all breakables stay intact for as long as they are able.

Report from Pillville: Have I mentioned the harpist?

art by Sulamith Wölfing

THIS  was in today's New York Times.

And since my head has been rising higher and higher into the clouds these past several weeks, I honestly can't remember if I've blogged about the music therapy hospice has provided for my mom  Forgive me when I tell you I was skeptical at first, but when the nurse told me a harpist would be coming to play for my mom, I envisioned something hokey. Please don't let her be wearing an angel costume was the wish that kept circling through my head. I was more than a little bit relieved when a woman wearing ordinary clothes showed up at the door.

The harpist has visited us four times now. Sometimes she brings a large harp and sometimes a smaller one with a set of bells and gongs. My mom sits in her chair at the dining room table since it's usually around lunch time. I lie across the room on the couch and the harpist sits between us, a bit closer to my mom than to me. She talks to my mom between songs and my mom talks to her. I remain silent unless my mom gets confused about something she wants me to straighten out--like whether he twin sister has been dead for one year or two, or if I was already living in California when my father died. These brief conversations are far more lovely than they sound. While there is talk about the dead, there's also talk about love, and about the different places my mom has lived in her 90 plus years on this planet.

I didn't know that harp and vocal music woven into end-of-life care was actually a formal discipline called thanatology until I read the article in this morning's Times. My awe and respect for our harpist's talents is now even deeper. At some level, I think I understood the depth of the experience from the beginning because I chose to do nothing but listen from the moment that very first note was plucked. I'm not quite sure why. It would have been more like me to hover near by, quietly folding laundry or to use the presence of another person in the house as an excuse to slip upstairs to my room. But after introductions were made that first day, I fluffed up the pillows on the couch, stretched out facing the water, and closed my eyes.

The music is mostly instrumental. But twice now the harpist has played and sung that old song by the New Christy Minstrels. The first few lines are pretty good instructions for living.

Today, while the blossoms still cling to the vine
I'll taste your strawberries, I'll drink your sweet wine
A million tomorrows shall all pass away
'Ere I forget all the joy that is mine...today

Report from Pillville: The neurologist, the hospice nurse, and matters of the heart

Things to do while you're on hospice

The hospice nurse comes on Tuesdays. She wears elaborate blue eyeliner and perky pastel scrubs. Somehow this makes me feel all is right with the world. This past visit she noted that my mom's pulse/ox was quite a bit lower than usual and that her handwriting had degraded to an illegible scrawl. This news did not strike panic in my heart. There have been five hospitalizations during the three years that my mom has lived with me. During two I considered summoning the family. There have been eight trips to the ER, two outpatient surgeries, and a myriad of medication changes. I've been at the end of my rope so many times that there's not enough rope left to hang myself--which is to say that I'm ready for whatever comes next. Or that's what I tell myself.

Right now, I'm sitting at the kitchen island in the dark with a glass of wine, listening to my mom moan and shout in her sleep. I don't feel particularly worried about anything, and when I go to bed I will drop into the deep well of sleep only coming to the surface if it's absolutely needed.

On Wednesday I took my mom to the neurologist. She's on hospice now, I told him. She has a new lung tumor. Off most of her meds. She's not in any pain. He asked her if anything was bothering her. She said she was thirsty. He brought her a paper cup of water. He gave me his usual ultimatum. You must have two full days off every week, he said. You can come back to the house to sleep, but you must not see her during these days. You must do this so I do not get a new patient. This speech, delivered in his thick Chinese accent, sounds grave. No nonsense. You must, you must, he says.  I smile and tell him about going to the gym in the mornings. Two full days, he counters. He tells my mom she should enjoy every day, live each one like it's her last. He says that's what he does. He tells us that he's almost met death three times. I know from past conversations that he lost his house and everything in it during a fire and that he barely escaped. I know that he fell in the shower and split open the back of his skull. The scar is impressive. I don't know the story of his third encounter with death. But I believe him when he says he lives every day like it's his last. His eyes meet my eyes. His eyes meet my mother's eyes. He hold us there, reading us. Being sure we understand him. Waiting for us to speak. You can live for months or even years he tells my mom. She tells him that every day she hopes that she'll die in her sleep. He tells her no, that thought is a waste of her time. Just live. At the end of the visit he shakes our hands. Don't come back, he says. Just call me, and I'll write the prescriptions.

In the beginning of our lives in Pillville, there was a podiatrist, a pulmonologist, a cardiologist, a gastroenterologist, a vascular surgeon, a geriatric specialist, an ear, nose, and throat doctor, a dermatologist, and for a brief while, an orthopedist. We are pretty much done with doctors. I think the only one we may see again is the vascular surgeon. If you are sighing sadly right now, please reconsider. Each trip out of the house is a fall risk. That risk includes me. Steadying a wobbly person, even just to get from to car to wheel chair and back again is harder than it looks.

Today I needed to have my mother sign a form. Her signature was perfect. Maybe she could get a job teaching penmanship if there was such a job anymore. But tonight she's shouting nonsense. Our lives here in Pillville are like a yo-yo. Sometimes tightly elegant loops and tricks. Sometimes a limp and tangled failure. At any moment the string can break.

My mom is talking in her sleep again. This time what she said was perfectly clear. "How in the hell are you going to cook a turkey?" I've got that down, Mom, really I do. Of course I don't know that she was talking to me.

In the bathroom at my favorite coffee shop, there is a wetsuit and a towel. I like to imagine that someone runs across the street to surf on their lunch hour. I'd say that's making the most of today.

Report from Pillville: Read This.

I do a lot of self care. Today it was yoga. And a little drumming. Thank you Yoga-by-the-Sea.

Aid-in-Dying Laws Are Just a Start

I'd pull out a quote or two, but really you ought to just read the article. All of it. When you get to the part about how much Medicare pays for what, have a box of kleenex and a bucket ready. It's sickening and sad. If I were in the mood for a crying jag, I'd just read that paragraph over and over. I ask myself how in the world we got on this train. Well, it's a money train.

I used to be horrified at my mom's lack of personal awareness and responsibility for her health. Smoking: "Something's gotta kill you." Drinking: "I've never been drunk." (Hahahaha) Exercise: "All that moving around makes me seasick." Diet: "There's not a damn thing wrong with white sugar." The list of surgeries and procedures she's had is as long as her arm. Until recently her list of medications was as long as her other arm. She's racked up a tab with Medicare that ought to win her some kind of prize. Except that would be wrong.

As I've witnessed the loss of more of her abilities, as she's lost most of her desire to engage socially, I wonder what loss will be next. Will she go through another period of excruciating pain? If she lives another month, another year, will she be able to walk--even from the bed to the bathroom? She can't hear much even with hearing aids. She can't remember how to crochet, and I don't think she can really read. Today she couldn't think of the name of the bird she likes best.

During her last hospitalization, when a CT scan turned up a new tumor in her lung, the doctor who delivered this news was young and confident. "You'll want to set up a consultation with an oncologist," she said. I restrained myself from shouting, "Are you fucking kidding me?" My mom has been in what the article refers to the "gray zone" for some time. I do not want to extend her time there. And neither does she. Her advance directive emphatically states that she wants no more surgeries. I think it should be a doctor's job to present to a patient like my mom that she has the right to do nothing, to ask if she has an advance directive (I think it's been scanned into the system at the hospital she was at,) and to read that advance directive.

Three years ago I had some pretty rosy ideas about moving my mom in with me for the last portion of her life. I can't say that I regret my decision. I'm tired to the bone some days, but despite my previous post, I don't see a way to quit. Nor can I conceive of a better option. She's trapped. I'm trapped. But the biggest and baddest surprise was the system. The way she'd lie on a gurney for 12 or 10 or 16 hours in the ER before being admitted, the way she'd be pumped full of antibiotics whether or not there was a clear reason for it, the way she'd be completely debilitated upon every return home after lying in bed with only a 10 minute therapy walk (if it was a good day,) the way most of the staff in the hospitals and doctor's offices never seems to know that she's hard of hearing, the way a weak arthritic person in the hospital can't actually open anything to eat it or drink it, the way I'd come home with an impossibly frail person in the evening on a Saturday or a Sunday on very short notice and then have to go out to get a prescription filled. And the pain. Sure, the system as we know it will keep you alive, but they won't prescribe a decent pain killer at a dose that will provide relief because doctors are worried about being accused of over-prescribing.

Yes, there are good things that happen each day. I recognize them, honor them, celebrate them. And I am profoundly grateful for hospice. But mostly the gray zone is not a happy place. Life is eroding here, inch by inch and it's a real and painful thing. More and more, I do not hold this woman with an 8th grade education responsible for the choices she's made about her health. She's the sort of person who worships doctors. "I've always taken my pills just like they've told me." My pointing finger is moving away from her and zero-ing in on that fork in the road with the sign that proclaims life is better than death no matter the misery, no matter the cost.

Rescue

I watched this sea lion struggle onto the sand this morning. It's a much larger animal than the others I've seen this summer. This creature appears to be an adult. Not super skinny. Not trembling or having seizures from demoic acid poisoning. Not injured as far as I could tell. It was the effort, the struggle to haul out of the water that made me decide to call the marine mammal rescue.

I've been thinking a lot about rescue. How we do it as friends. When to step forward and when to step back. What to offer. What to insist upon. What to just do without even a word of discussion. How the boundaries are different in different relationships. Dan absolutely did not want to recover at my house after his surgery. I'd seen my mom go through two similar lung surgeries and knew absolutely he could not go home to his place alone. A good friend and I staged an intervention of sorts. Look, we said. You won't be able to drive yourself home. Someone has to drive you and you're not going to be driven to your place. That discussion repeated itself when it came time to start the chemo and radiation, but I relented--mostly because his Medi-Cal was in a different county from where I live. It was a mistake. It would have been so much better for him to be here and ride the train.

What do we do when friend needs help? The best thing is just to show up, if that's possible. When Dan was in hospice at my house, people showed up and did a million things. But what if the peril is less tangible? What if there aren't moment by moment things to be done? Advice is cheap, as the old saying goes. I'm not even sure what the hell that means now that I think of it. I often ask advice. I spun around for months thinking about how to get my mom to Iowa for a big family event in October. I weighed the options with a lot of people, asking what they'd do. Fidgeted around with a couple of different plans until I figured it out.

It's the giving of advice that's harder. What if your advice is wrong? What if the person takes your advice and things turn out badly? What if they don't take your advice and things turn out badly? Can we save someone the way marine rescue can save a sea lion? Chronic or acute are the words that are dashing through my head right now. Years ago I  tried to save someone in a chronic bad situation. The results were disastrous.  I bear the responsibility of having helped put a child in harm's way as a result of my meddling/helping. The memory still turns my stomach.

But on the float trip I took while I was in Alaska recently, we rescued a young man. Cold, wet, and lost for a day with a dead cellphone, he climbed down a bluff to the riverbank and flagged us down. There isn't much to think about when the situation is acute. You pull the person into the raft and give him a jacket. You comfort him and hand him over to the paramedics.

Go head. Give me some advice about giving advice.

People in Airport Bars and the Chaos of Everything (A note from 30,000 feet)

It might be that there are 2 kinds of people in airport bars.

The bartenders at LAX never take your order without asking if you'd like a double instead of a single  for x dollars more. Everyone answers the question without hesitation. Sure. Or no thanks.

I had a gin and tonic before I boarded the plane. I still worry a bit about a full blown anxiety attack although I haven't had one in a couple of years. I also had a turkey sandwich. I don't eat turkey sandwiches. I planned to save half for my in-flight meal for the more than 5 hour flight to Baltimore. That resolution lasted until I finished the first half. Like I said, there are 2 kinds of people.

The bartender refilled the diet coke for the young woman on the barstool next to me. He mistakenly set it in front of the guy next to her and then caught himself. We all laughed. I don't think he wants to drink out of my glass, the woman said. The guy looked at her. She looked at him. I think he would have loved to drink out of her glass. Getting to know you, airport bar style, I said. We all laughed again and talked about Baltimore. When I got up, they were still talking.

At the gate I bumped my roller bag into the work-booted foot of a guy standing in the middle of things. I apologized. You didn't hurt me...yet, he said. Kinda creepy. A minute later he was chatting up a young woman who mentioned to him that she was on stand-by waiting for a seat. You can sit on my lap, he said. Definitely creepy. I circled around to get a better look at her, wondering if she was an adult or a teenager. They kept talking. She seemed okay with it. I kept out of it, but kept an ear open, listening. There were no stand-bys called to board the plane.

I created a certain amount of chaos for myself in the time between Alaska and getting on the plane to pick up my mom. I started projects that were too big to finish. Left a stack of mail unopened mail on my desk for both me and my mom. I wonder if I'm losing my organizational edge. If I just don't care anymore. Or if the cumulative strain of being the CEO of Pillville is wearing on me. (Of course it is.) Nowadays it always feels like I will let something slide off the edge. Somehow though I got my mom back onto hospice with a simple phone call. The hospital bed and the oxygen were delivered promptly within the one-hour window I requested. Maybe things are going to get easier, I tell myself. Sure. Maybe next time I'll save the other half of the sandwich, and just tell the bartender no thanks.

Alaska: the Tundra Bus, A Big White Mountain, and Other Wonders

That's not a bank of big white clouds in the center--it's a mountain--well, part of a mountain.

Which one is Denali? we asked at our first chance to view big mountain. If it were visible right now, you wouldn't have to ask, was the answer. We finally saw most of it today as the Tundra Bus drove us into the wilderness.

We also saw a grizzly bear and her triplet cubs, 3 or 4 small groups of caribou, a couple small gatherings of dall sheep, a big bull moose with a dewlap the size of a pup tent (good god, animals can be weird,) a rare gyre falcon, a willow ptarmigan, and just for good measure an arctic ground squirrel. The landscape itself was the true wonder. It's vastness defies description. At one point our guide/driver pointed out a large rock in the near distance. If I'd wagered a guess, I would have said it was as tall as a big SUV and easily reached by brisk walk. It was actually 3 stories high and 3 miles away. 

Last year my world was not composed of such vistas. Hospital rooms, the room in the nursing home where the man who loved me spent a few nights before we were able to get him to my house. I stared down at the forms I was filling out, and for some minutes now and then into the eyes of a man who was already beginning to leave this immense and amazing world. 

My heart was stone or dust or perhaps vapor for what seemed like the longest time--like maybe you'd have to spend a day on a bus in driving into the wilderness to catch a glimpse of it. The landscape of my heart has been surprising me lately. There are storybook forests of perfect spruce trees in my heart. There are aspens shaking their greenest of green leaves and rivers made of silver. The blue sky there is a new blue, and I just want to throw my arms around it.

Photo by my friend Ellen--if you want to see more of her great Denali photos, follow her on Instagram:ellenslevy

Scrubbing the Floor

The air is a liminal state. Up in the air. We say it all the time. At this moment I am in the air in a plane between my life with my mother, tending to her every need and my life without my mother, tending to nothing at all because, for the next almost-month, my brother and his girlfriend will be tending to her. I have left her with them.

It's a project, this vacation, and I've cursed it bitterly. The audacity of it. How dare I--what was I thinking--I paid all this money and it might not even happen--and what if something bad happens to my mother while I'm away.

Fuck it. I can't turn back now.

But I wonder if I will ever attempt it again. My mother was on hospice. Because a patient cannot  have two hospice transfers in a Medicare benefit period, we had to sign her out of hospice or she wouldn't be able to get back onto hospice for several weeks after her return to California. The fancy-dancing to get enough hospice drugs in the interim was, yeah, well, fancy. This morning as I packed to leave my brother's, the medical supply place called asking if they could pick up the equipment today, i.e. the hospital bed, the tray table, the oxygen concentrator, etc. Er. Well, no, I had to tell them. so they're coming tomorrow and already my brain feels a bit fizzy wondering how we will get all this shit back on the Saturday evening that my mother returns. I'm wondering. Not worrying. Because I'm so tired of this shit that I don't have the energy to worry and hospice case managers are houdinis. These women in their pastel scrubs and pretty earrings and perfect make-up are forces. Stand the fuck back. Outta the way. Here comes the hospice nurse. Really.

In a couple of hours I will unlock my front door and return to the former house of moaning. I have no idea what I will do. I might get down on my knees and scrub the grout between the kitchen floor tiles because that would be an excuse to be on my knees and that's probably exactly where I need to be.

These Are Suitcases

Yes, bathed in the morning light, here lie the implements of travel.

It is quite possible that I'm delusional, but on Saturday I'm planning to fly my with mother to the east coast where we will be fetched from the airport by my brother. The very large suitcase in the rear of the above photo will be jammed to the brim because my mom is going to stay at my brother's place for a month while I take two the smaller suitcases and head off to Alaska with a friend for two weeks.   I do not know the details of our planned travels with  a local chapter of the Sierra Club since my friend made all of the plans and I have yet to read any of the details. Hiking boots. I need those. Rain gear. Yoga pants. Because part of the trip involves a cruise and there will be yoga. And dancing shoes. There may be dancing on the ship. I may dance everywhere.

In order for this to happen, we must sign my mother out of hospice. (Medicare does not allow more than one hospice transfer in any given benefit period.) But the new medication regimen will remain in place, and that seems to be the element that has turned the tide. The tide is such a fickle thing, so I'll focus on something else. Like how I will turn around and fly back here 48 hours after I arrive at my brother's house, so that I can then drive to my friend's house in L.A. and fly with her to Alaska.

Right now my mom is shuffling in and out of her room looking at the suitcase I've set in the hall outside her door. "Socks," she's muttering. Pills, I'm thinking. Who cares about socks?

Shouting in the Dark

I love the moment at dawn when the birds begin to sing. 

My mother is shouting in her sleep as I write this. Sometimes she talks. I tip-toe to the door of her room and listen if she's speaking clearly enough to be understood. I keep waiting for some profound revelation from the beyond because she's usually speaking to dead people. Like maybe she has a message for me from my dad. Or maybe there'll be some long-held family secret revealed. Usually she's lost though. She and her twin sister are in the woods and trying to find their way back home.

My mom slept most of the day. Mitigating pain and keeping the sufferer coherent and awake is a challenge, apparently. When she was still asleep at 12:30 I called the hospice nurse, and she came over and checked on her. All her vital signs were great--probably better than mine at that point. She got up and ate toast and yogurt and coffee and juice. Then she went back to bed. I slept on the couch and we both woke up around 6 p.m. I turned last night's chicken into chicken salad. We had toast and an avocado with it and called it good. By the end of the meal, I had to keep my eyes on her because  she was dozing while lifting her glass to her lips. This is not a new thing. She does it regularly and the result is frequently a spilled drink and sometimes a broken glass. It pisses her off. I've never seen anything quite like it. She's here in the present and then she slips into some other reality, mumbling, talking, then she's gone and there's coffee or a martini in her lap.

The nurse made new recommendations for the meds, so we'll see if my mom Rip Van Winkels her way through tomorrow or what. The pain is pretty much gone though. When I ask her how she feels or how her pain is, she says, "Smoooth." She used our fabulous lavender microwave hot packs only once today. Before hospice the hot packs were constantly employed. The microwave blew a fuse on Sunday, and if we hadn't already had the okay to increase the pain meds, it would have been a gruesome day.

I actually sent out some writing today. Lately I've been feeling like my focus has just gone to hell, and that there's just so much rejection, and I can't apply for any fellowships, and I can't really participate in the literary scene, and I wish I were at AWP, but I'm not, and you know, whinewhinewhine. So I had some wine, and I thought, rather dejectedly, I'd see how my book was doing. It's okay. The ups and downs of book sales are completely perplexing. At least at this level. If you're on Oprah, yeah, I'm sure your sales go up. The things I'm doing to promote my book are less visible. A little like shouting in the dark.

Monday Morning Beach Report

Post-holiday Emptiness

It was quite a bit busier in Pillville. We had a meeting with the case manager. I was barraged with phone calls from the medical equipment place. Due to the ins and outs of who pays for what, we must get rid of my mom's current hard won hospital bed and get a different one. We have to change out the oxygen concentrator too. It all has to do with who will pay for what, and hospice has its own pipeline. I really have no beef with that basic concept (well, I do, really, but never mind) but I did draw a line in the sand when I got the call that said the bed was about to be delivered, and I was having my time off, and the caregiver told me my mom was napping in her current bed. The medical supply office called me twice. When would I be home? The driver called me once. Why wasn't I home? And why wouldn't my mom's caregiver let him in?  I called the hospice case manager and asked for her help. She jumped in and sent the guy with the truck idling in my driveway AWAY. It's all funny, really. First we couldn't get the fucking hospital bed a year ago, and now they're beating down the door to give us another one.

Here's the best Pillville news today. My mom looks radiant. Most of her pain is gone. She feels good. She's a bit dreamy. While I was fixing dinner, she asked me if I remembered the time we stopped at the baseball diamond. She was sitting at the table with her martini, halfway between real life and dream life. For some crazy reason, she dreams a lot about baseball. I have absolutely nothing to say that can explain that.

Easter in Pillville

My dad always bought my mom an Easter lily, so I bought us one. By mutual agreement, we decided to forgo the yucky candy. 

We didn't make a big deal out of Easter here in Pillville. I was scheduled to teach T'ai Chi Chih in the park this morning at 11:00, but got another teacher to sub for me at the last minute because at 10:15  my mom still hadn't gotten out of bed. She's usually up between 8:00 and 8:30, and given the extra meds, I was uneasy with our situation. Everything turned out okay with my mom. She had kind of a low key sleepy day, but by this evening, she was totally herself.

And all this made me rise up (ahem) out of my denial. I cannot really commit to anything--not even an hour's worth of something one mile from my house without pre-planning for a caregiver. This is how it is now. I'm okay with it. But it's like a new pair of uncomfortable shoes. I'm just gonna wear the damn things and break them in. I spent a couple of hours staring at my calendar this morning deciding what to keep, what to jettison. I have a plan. And the plan will change. I'm okay with that too, though I worry sometimes that out and out fatigue is what makes me so complacent.

All in all, it's been a lovely weekend. I've reconnected with two old friends. I've counted my blessings--and I've probably been able to do that more easily because of those conversations with friends.

Tonight at dinner my mom told me about a very vivid dream she had of her deceased twin sister. She told me about how, in real life at age 13, they were grown-ups, sent out to work waitress jobs. How people didn't tip back then, and that the one customer who did tip would cause a stampede among the waitresses when they saw him coming down the sidewalk toward the door. How, in that restaurant, she lost the beautiful rings that her mother gave her. She took them off in the locker room to put on her nylon stockings and her uniform. They were gone just like that, and nobody would admit to taking them.

We talked about how people want mementos of their dead loved ones. Rings, and pictures, and other things. It made me think about my dad. I wish I had his vintage silk ties and the neon sign from his business.

It's funny though--all this He Has Risen religiosity. Spring and fertility. Eggs and pretty colored candy. Exactly one year ago, I was at Dan's place cleaning out his refrigerator. I was on a mission. Chemo, radiation, suppressed immune system, spoiled food. He was in terrible shape. And here I am again this spring, in yet another season of decline.

But hey everyone! I have that number I can call!

Hope your Easter was sweet.

Report from the Love Shack

Hahahaha. Just kidding.

I went to a wedding today though. The bride and groom kissed like crazy.

That looked like fun.

And in other news:

My mom got accepted into hospice care this morning.

Hold your horses.

All it means right now is that there's better pain management--and I'm happy beyond measure about that. I had a glass of champagne (all by myself) when the nurse left. The champagne was already in the fridge, opened and re-corked. Because friends.

And it made a big difference in my mom's day, taking those pills in four hours instead of six.

The big thing--and this is huge. I can call a nurse any hour of the day or night. The nurse will come to the house if I say we need her. Amazing. I keep looking at that piece of paper on my fridge, thinking, oh my god, there is a number I can call and someone will be right over.

That's what people do when you live near family members, right? I was away at college when my dad died very suddenly of a heart attack. It was evening. February. The roads were probably icy and it was mostly likely colder than hell. People came over. Yes, I have friends, excellent and generous and gracious friends, but I find it harder to impose on friends, especially in the middle of the night. Shortly after my divorce when I was living alone, I took a bunch of pain pills and bandaged my eye and went to sleep after my dog poked her toenail in it. I knew I had a scratched cornea. In the morning I drove myself to the eye doctor while holding a towel over half my face.

And here's the really amazing part--my mom can still go visit relatives in Maryland (which means I can take a trip with a friend) and be on hospice there. And then come back and be on hospice here. Well, the arrangements aren't totally solid yet, but it's in the works.

Originally, the word hospice meant simply an inn for travelers, I think.

And we're all just traveling through.

Sleep well.

June 6/Afternoon

Blood pressure dropping. Blood pressure drops some more. The nurse delivers her tidings every hour. We murmur. We watch. We wait. Lunch. Snacks. Coffee. Conversation. Silent sitting. Phone calls.

Dan's friend Will drives down from Berkeley for the second visit in 4 (or is it 3?) days. Dan's friend Russ arrives, and Will and Russ begin to make music, sitting next to Dan's bed.

Do you want to climb in with him? the nurse asks, nodding toward the bed. Of course, I do, I say, but I can't figure out how I'm going to fit myself in with the five pillows propping him up. And there's the oxygen line, the tube from the catheter. It looks impossible. Instead, I help the nurse with the cool washcloths we are placing on Dan to relieve his fever. Let me know when you think I should crawl in with him, I say. How about now? she asks. I'm still doubtful. I'll help you, she says, lowering the bedrail and then pulling it back up again to support my back.

The songs Russ and Will are playing are Dan's favorites. Wow, I tell them, I never thought I'd find myself in bed with my boyfriend with live music in the room. Best girlfriend ever, Dusty says.

I begin whispering my "litany of bests" in Dan's ear. I've told him some of these things already, but I begin again, telling him everything I can think of. Best first date, best kisser, best friend, best guy in the kitchen, best massager.... Dan's breaths are shallow, as they have been for days. I watch the rise and fall of his chest. And then there is no rise. I call out for Dusty who is just a few feet away on the couch, and she sets her fingers against his neck where there is still a pulse. The rest of the family is at  the bedside now and everyone lays their hands on him. The pulse stops too. He sighs a final sigh, and he's gone.

The nurse pronounces him dead. It's 4:04 p.m.

Today/1:38 p.m.

June gloom. Slight breeze. We sit, but not for long. It's slow motion musical chairs--without the music for right now. We have cake. We have bagels. Lox. Chips of every variety. We have sandwich stuff and leftover chili. We are running out of pillows because we have Dan propped up every which way to make him comfortable. The phone calls, the Facebook messages and the emails keep coming. People keep arriving. I had this idea that it would be just the immediate family and me when Dan breathes his last--whenever that may be. But I've given way to the tide of love washing over the man who loves me. I think he would like it. So the friends, and old girlfriends, and roommates, the t'ai chi students, and the band mates come. They tell us things we don't know. We listen.

And here is a story for them. A blog post from about 3 years ago called I Could Drink A Case of You:


Saturday night after the super moon refused to show its face, there was more darkness. I pulled the mail out of my mailbox to find a "letter" from my attorney which wasn't a letter at all. What is was was a photocopy of the judge's ruling on my motion to recover attorney fees. Denied, it said.

 I'd been waiting since our day in court on March 2nd for the news. I'd emailed my attorneys asking for an update a week after the court appearance. The judge was out of town, they said. So I waited some more thinking I would email the attorneys again after the weekend. Maybe the beginning of Spring would bring good news.

Or not. But it wasn't the bad news about the money that was the worst thing. Instead of days of waiting, I could have used a prompt email last Tuesday when the ruling came down. Or a phone call. I could have used a tiny slice of personal communication--something like, "Dear Denise, We're sorry to be the bearers of bad news, but don't be discouraged, and here's what we'll do next..." I could have used a scrawled post-it note stuck to the corner of the blurry photocopy with some kind missive like "hang in there"--or even a crude little drawing of a frowny face. Nope.

I admit to dark thoughts. I have them. I'd been having them less. But Saturday night the dark thoughts had a party. They wore black and carried knives. They looped ropes over beams. They made tea and reminded me that the deranged husband in Tim O'Brien's excellent novel  In the Lake of the Woods killed his wife with boiling water while she slept. I didn't sleep Saturday night. I sat in my bed frozen with dread. I emailed Mr. Ex. I texted him. Then the sun sort of rose--or did what the moon did the night before--lurked somewhere behind the clouds while doing its job in a less than satisfactory way. And that's what I did Sunday. I skipped a good friend's fabulous First Day of Spring party and drank mimosas in my pajamas with M. while we watched basketball. Then I crawled to bed and slept the day away.

When I woke I felt stupid and lazy and realized I had a house full of people whom I love. I cobbled together dinner, took a shower while the chicken was in the oven, then lit the candles and sat at the dining room table like a human being. And somewhere in there I'd talked on the phone with the man who loves me. He was wrestling with his own First Day of Spring demons. "You'll know what to do," he said. "You always do." Or somethin' like that.  Maybe not, I thought. And maybe this thing between us could be going a little better.

I was putting the last of the dishes into the dishwasher when the brass door knocker that nobody ever  uses announced that someone was at the door. Yup. "Someone's at the door," the daughters said without moving as if they knew it was for me. There he was, the man who loves me standing in the rain with a little cluster of daffodils in one hand and a case of wine hoisted onto one shoulder. You read that right. Not a bottle. A case.

I'm still on my feet.