Lars' hospice journal in Lori's last days
I want to write my log, my blog, in bed with Lori. I want to write to Lori, with her in bed next to me, and write about our thoughts on transcendental experiences.
Yesterday Dr. Shao told Lori that she believes the cancer is getting worse and that treatments will probably be ineffective in slowing down the cancer and we will have to focus on palliative care. This is pretty much the statement my therapist said I will eventually hear. He told me this on Monday, and yesterday, Wednesday AM, I looked up "palliative" in the big dictionary under the bed, careful not to let her see what I was looking up, or that I was looking in the dictionary (because she would ask what I was looking up). Shao said she would schedule a PET scan next week and the following week we'll discuss the options.
This is a turning point. Shao said something about the cancer moving fast - how fast? How long? "How long, O, Lord, how long?" I've felt we were at a new phase. Her inactivity, her staring out the window and wanting to see nature, even pictures of nature.
Too bad we couldn't see Venus and Jupiter conjoin the other night. We would have been able to see it from our bed, but it was cloudy, and the gods made love behind a curtain.
I dream I'm walking in the East River at night with a group of people. I'm barefoot and feel the mud of the river bottom. The water is ankle deep and it is very beautiful - the city, the river. One of the guys is warning of all the vile things probably thrown in the river that I'll step on. I say I hope I don't step on broken glass, but I'm not really worried. I also need to be careful to stay where its shallow.
I pray to face reality. When I need to face reality, I pray. I pray when I need to face reality. When I begin to pray, I struggle with words, or think them thoughtlessly, mindless words in a wordless mind, until reality and I are face to face and I have to listen.
No one can see the face of reality and live, and so we all die,
and what remains is that which faces me now.
Dream that Mom and Dad are visiting me in NYC for the first time and I'm happy to be showing them around the familiar neighborhood below 14th Street. Then we are in a car and we're on the road and they're looking at maps, etc., and I ask where we are going. Mom says we're going home. She seems impatient to me. Home? Where? A hotel? They don't answer me and I get angry. Why won't you tell me where we're going? I'm looking around and I don't know where we are. I could help look for the hotel, or whatever it is, if I knew. And I'm looking around at unfamiliar buildings. We're off the highway. I see an old hotel - "Holiday House," or something - could that be it? I mean, that could be it and I could help look for the place and its frustrating they won't answer me and are annoyed I'm even asking and that I'm angry and yelling. I just want to know where we are going.
I have to think this dream Mom is Lori. Where is she taking me? Where is this home?
We went to the Puerto Rican Family Institute to see Lori's psychiatrist and get prescriptions. She's phasing out the Risperidal in hope the tremors will go away. Lori is unable to paint because of these tremors. Lori tried one of the laxatives I bought, on her sister's recommendation. Then she tried the suppository this afternoon, but it didn't seem to help much, if at all. "Not enough," she said, and I didn't ask for details.
I worry about this now. Her belly is swollen. Remember Dad going to an ER for constipation with Betty, and me waiting at home with Mom, who kept asking where they were. That was the trip when the eldercare insanity really took off. They both had cancer. Mom had Alzheimer's and the doctor said she had maybe six weeks to live. My father lived another year. I thought about staying with them at their house, but my home was in NY, with Lori, and my sister had a room for them in her house.
We got together in 2005 and got married in 2006. The last ten years have brought us here.
4:30 AM. Flashing red and blue lights across the river. An accident on the FDR, probably. Other people's disasters. Smoking cannabis at the window, which is shut so I can light up, and open after I exhale, so the breeze will come. Let the sky breathe on me. Strawberry Fields and Stars and Stripes Forever.
What do I call that to whom, or to which, I pray? The Holy One? Capitalized to set the words apart as designating the absolute - Absolute - and a name I tested in place of Heavenly Father when I prayed with her.
I feel so guilty this is happening to you, Lori. I feel guilty for my health. When I broke that blue plate I could've cried, knowing I wasn't crying over a broken plate. I bought two sturdy white ceramic plates at K-Mart and served rotini and meat sauce on them, and felt guilty for the new plates, and guilty for my appetite.
I need to clear the walls. The art I put up for open studio is still up. My anguished figures. Mutilated executions. I could start big flowering meditations in ink on paper scrolls.
3:42 AM, Friday morning. She's been coughing a lot, so I haven't slept much in the past three hours. Woke up around midnight to her coughing fit. I asked her if she wanted cough syrup, which sounded pathetic, but it seemed to help last night. Last night I moved to the couch, but I don't want to sleep on the couch now. I want to be near her, or awake so I can go to her if she calls me or gets up.
I don't know all I have to do.
Talk to Shao, if she's there, or some other doctor about the oxycodone, the coughing. The oxycodone was prescribed for her stomach pain. I read that you shouldn't take it if you have stomach blocking, or respiratory problems. Maybe the coughing is a side effect of the oxy? She didn't get the coughing fits until the night before last, when she first took it. It eased her stomach pain. It also made her drowsy and confused at times. She's asleep now. Its 7:17, but I didn't want to wake her because she couldn't have got much rest last night, and she can't eat before the scan. I'll wake her at 8, if she's still sleeping. Its been a long night.
What "preparations" do we have to make? Financial, funeral, etc. What do we do? What do I need to do? How do I find out?
Night before last I dream I'm telling someone - Mom? - I need to take time off work because I am so stressed out, but it was the holidays. I was taking a few days or a week off anyway.
I didn't sleep much because Lori was coughing so much. I could have moved to the other room, but I was afraid she'd choke to death or something. I was awake at 12:30 and didn't get back to sleep. So, I spent a lot of the early hours watching Comedians In Cars Getting Coffee, and so on. I'd sent a PM to my sister, nieces, and cousins - those on Facebook - about the blog post I wrote on talking to Dad about Paul. Betty and Eraca got into a long conversation about their years in Midway, Kentucky after Eraca's mother died and she came to Kentucky to live with my family for a while. I wrote about my conversation with Dad as a way to prepare myself for what is happening now.
I post this on Facebook:
"I'm sorry I haven't responded to all the messages I've received, and questions about Lori. She will be getting another PET scan on Friday and the following week she'll find out what changes will be in her treatment. She appreciates all the images of landscapes and flowers and animals people sent her. I know some of you want to know more details, and some want to offer advice. She is home and trying to keep positive, but finds that Facebook disrupts her peace of mind."
We took a car service to the cancer center and it cost almost $30, but I had cash. I called Shao's office, knowing she was on vacation, and talked to Sondra, the NP, to ask about Lori's cough, and to clarify that we'd go to the Beth Israel ER if there was an emergency over the weekend. We had an appointment with Shao on Wednesday, but Sondra said we could call Monday, if we needed to see Shao right away.
While Lori was being scanned I went to the bank to get more cash so I'd have enough for a taxi home and so I could get a steak burrito at Chipotle. The Citi ATM said I was over $200 overdrawn because the $726 check Lori wrote me had been returned. I had $22 cash on me.
When the scanning was over, we took a taxi home. A few days ago she was strong enough to take the M train to see the psychiatrist, but I didn't think she could manage the L train and all the walking. Lori only had $2 and her card was declined, of course, and we were short. She stayed in the cab while I went in and borrowed 20 from Chris to pay the driver.
We had lunch. She had a bowl of minestrone and I had some pita and leftover hummus. Not very good. After that, I was going through our bank statements, which were in the mailbox, to find out what happened with our accounts, when Sondra the NP called and said we had to go to the ER right away because the scan showed a lot of fluid in Lori's lung and belly, and a clot in a vein near her liver.
Chris lent me a hundred dollars - two fifties - and we took a car service to the ER and spent the rest of the afternoon there. I watched them drain three liters from her lung and give her morphine.
After that they put her in a room and I went home and got chicken drunken noodle from Khao Sarn and got high and watched Smothers Brothers clips on YouTube and went to sleep.
I planned to go to Citi on First Avenue and deposit $600 from my Cross County account before I visited Lori. Take her ATM card and get her PIN from her. Then, maybe, go to Cross County before it closes (3:00) and talk to someone.
The bank screw-up is a chance to make those financial preparations I was worried about. I need to pay Verizon so my phone will work, but still no available funds in my Citi account, so I'll have to buy a phone card. I want to have enough cash ($30?) for carfare, if Lori is discharged from the hospital. I didn't go to Cross County as planned and still haven't got her PIN. She has about $600 in her checking account (most of her money is in her savings account). I have $45 in cash left over from what Chris lent me and I don't need to buy food for myself, but I want to buy her some berries, and peaches, or bananas. She doesn't eat the food they give her.
Coincidentally, an old Richmond friend of hers is in town and called, and then came to see her in the hospital. Dan is an ER doctor. He talked to her and talked to a doctor. He took me out to dinner at some expensive place nearby and told me the hard truths. "If she died tonight, no one will be surprised," he said. He told me I needed to get a Durable Power of Attorney and a will. And he gave me a list of questions to ask the doctors:
Is the effusion in her lung malignant?
Acites in her belly, is it malignant?
How to treat malignant effusion?
Hospice at home?
Will she be able to take oral morphine?
I spent the night at the hospital and Dan stayed at our loft and checked out what we needed to make it suitable for hospice. For one thing, it was very hot, even with the little air conditioner on. When the afternoon sun comes through those big windows it really heats the place up. It needed cleaning, and it was a long way to the bathroom from the bedroom. He gave me another list of questions:
Bed and equipment delivered to home first?
palliative social worker?
Dan had to get back to North Carolina, but he called Lori's sister while he was driving and told her his observations. Lisa is also a doctor, a pediatrician in Houston. She called me after Dan talked to her and she was crying. She arranged to fly up to New York to help out.
When Lisa arrived she spent the night with Lori at the hospital and I stayed home and figured out what to do about the windows. My neighbor Louise uses Mylar and white sheets in her studio windows to insulate from the heat. Elizabeth, who is subletting the studio, showed me how they hung these and lent me one of the Mylar blankets so I could could measure the windows and see how many I needed and come up with a plan. It would take six of these emergency blankets to cover the windows. They sold them at a sporting goods store near Union Square, not far from the hospital.
The Lord your God is One. Love the Lord your God with all your heart, your soul, and your mind, and love your neighbor as yourself.
One loves the Holy One as the Holy One loves one, and one loves another one as one loves oneself.
Stayed at home night before last while Lisa stayed with her sister. I stayed with Lori last night and I'm still here by her bed. She is asleep. I wish there was some one to sit here with her while I go out and buy toothpaste and brush and Excedrin. The lights just came on in the hallway. It was dark and quiet and deserted when I got up to go to the bathroom over an hour ago. I haven't had a real meal since - when? Those two chicken pot pies Elizabeth gave me the night before last? A bowl of cereal for breakfast. A cheese danish, a brownie, two cookies. We thought Lisa was bringing chicken soup last night, but that will be tonight.
I got here by nine AM yesterday to meet with Maria the legal aid lawyer and sign the power of attorney and discuss the will, which she says we don't need. I should go across the street to the bank and find out if its sufficient.
Lisa is cleaning the loft and will install the curtains with the Mylar to block the afternoon sun, and we'll put in a second air conditioner. We are getting a lot of help from our friends Jimmy, Miriam, Frank, Linda, Elizabeth, Michael, Valerie, Chris, and Amy. We want Lori to come home.
The palliative care team was supposed to meet with us today at ten AM.
I slept OK, but I have a headache now.
I hope everything is peaceful and loving for her and I hope she can come home to go Home.
"Last night the drummer threw in the towel," she said.
"Tell them I believe all of them," she said.
"See, I'm already seeing better. Am I better already?" she asked.
"Are you feeling better?" I ask.
"I'm supposed to," she replied.
"Wait, I'm talking to myself. This patient is not the last."
Are her cryptic comments the result of too much or not enough meds? Or part of the normal process of dying?
"It looks better in the brook's song."
"Her smartphone has fallen off several times."
"Lisa's?" I ask.
After she eats some Cheerio's, she asks, "Did the hospital play Natalie Merchant?"
I tell her that Melody posted that old photo of them looking cute, with Jimmy in the background, and posted with it the song "These Are Days."
"I think its going to happen today."
But it doesn't.
They give her Tessalon Perles for the cough. She's dozing after eating a few bites of a boiled egg and some Cheerio's.
She asked, "Is Christopher at my sister's?"
She might've meant to ask if her sister is at Christopher's, which would make sense, because Lisa was going to sleep at Chris and Amy's. She went back to bed after eating. I'm waiting for the doctor who will drain her lung and, I hope, show me how to drain her, and I'm waiting for the Palliative Team to attempt another meeting. I am really waiting for them to say she is ready to go, that the equipment is set up in the loft - a bed, oxygen, portable toilet. To do that they'll need Lisa's phone number, or the supe's, or somebody else to let them in.
The Palliative Team is led by Dr. DiCastro, who sounds like a priest when he speaks of the journey toward the end of life and asks her to consider what would give a sense of meaning and completion to her life. It drives me crazy, because I want to hear information about what we need to do, and what they will do to help us get her home so we can take care of her there, and he is giving a homily. We can deal with the existential questions.
"I didn't think they could use the scissors as quickly to make the cloth of the Holy Spirit."
She was looking at me.
"The cloth of the Holy Spirit?" I ask. "Tell me more, beautiful."
I try to note these oracular pronouncements as I hear them.
"I cannot talk today, but I will try."
Injection for blood clots around ten o'clock. I wonder if the Perle might be the cause of the cryptic speech. Yesterday there was quite a bit of that mixed in with lucid conversation and nodding off. I wonder if the need to relieve pain is in conflict with the need to communicate with us. We didn't realize she'd taken half a Percocet at ten for abdominal pain. It made the Palliative Team meeting even more bizarre until Lori had them leave so she could be alone with Lisa, Jimmy, and me. When the doctor asked, in his ministerial intonation, what she wants as she approaches the end, she said, "I want Lars by my side when I die." This is also what I want. Lisa was crying and I think the whole Palliative Team was about to cry.
One of the team members, a social worker name Claire, came to the meeting late, and didn't get to say anything before Lori dismissed them. She talked to me later and she turned out to be the person I needed to talk to all along. She went over the hospice forms I had to sign and ordered the equipment, including the bed, commode, and nebulizer. Doctor Tsai would be the hospice doctor. Once Lori goes home she is on hospice.
I wrote down a lot of the unusual, often poetic, things Lori said, but little actual conversation. There wasn't much conversation. She had difficulty talking, beyond a few sentences. She would answer questions, such as when the lawyer talked to us. Sometimes it was as if she was talking in her sleep. She complained when there were several friends in the room and we were talking about the Mylar curtains, so we'd stop talking about that, but soon the topic would come up again and I would have the offenders leave so they could discuss this elsewhere.
"I only know of the knitting plan."
"After they did it the beeping stopped."
"I've heard of this poem of singers - this literature."
"He took the bread out and made a conception of it."
"I tried the recovery of fish."
"I'll check again and I can express myself with a better memory. Amen."
"Oh rats. I'm supposed to surrender if I play games. I don't want to play them."
We got home between 7:30 and 8 by ambulance. On the way, I realized we didn't have certain meds we'd need, although we had prescriptions. Lisa, Jimmy, Frank, Linda, Valerie, and maybe others, were waiting with food. The curtains were up and the two air conditioners were on. I told Lisa my concern about the meds and showed her the prescriptions. She called CVS and then she and Frank literally ran to get there before the pharmacy closed. While we were scrambling to get the meds she needed immediately, we missed a delivery of the meds to be saved for an emergency. I don't remember if Claire mentioned that the pharmacy delivery was coming the night of the move. We didn't hear the phones when the delivery guys called. Someone from MJHS called while Lisa was talking to her father on the phone and left a message about the failed delivery. I called in the morning and found out that they were trying to deliver the package of emergency meds to be kept in a refrigerator until hospice told us to use them. They weren't going to attempt another delivery and I had to go to the pharmacy way the hell over in South Brooklyn. I took a car service and it took about an hour to get there because of an accident on the BQE. I enjoyed the ride, though, and looking at parts of Brooklyn I rarely see, after being inside a hospital room most of the time.
Death is universal, but each death is unique, so there are billions of ways to die. The living, and the dying who still live, might look for meaning or hope or comfort or total sedation. The individual relates to the universal in the existential "realization of the Absolute" - whatever that might mean, if anything. The words that come to me seem worthless, but I try, at least, to be honest about my feelings and thoughts when I talk to her, although I can't always tell if she's listening.
I remind Lori of our first phone conversation, when we told each other about our transcendent experiences of nature. Both of us had gone on retreats with Christian youth groups we belonged to when we were in high school. Hers was called "Christian Life." She and I, separated by a few years and a few hundred miles, had gone on these indoctrination retreats and had wandered off from the bible study groups, prayer sessions, and sing alongs, into the woods, and had "transcendent experiences" that were probably - certainly - not the same, but our own discoveries of ourselves in relation to what she later called the Tao, and which I call the Absolute, or God. When she told one of the group counselors about her experience, she was told she had let Jesus in her heart. This was not clear to her. She pictured a little door in her heart, with a little Jesus figure walking in, and it didn't make sense, or seem to have anything to do with what had happened to her.
I wondered if this experience was related to the Navajo concept of hozho, which she wrote about in her tribute to Jennifer Wynne Reeves in artcritical.com. Hozho is a word Lori picked up in Six Names of Beauty, by Crispin Sartwell.
Sartwell explains hozho this way:
"It's not primarily about the way things appear -- though it includes the universe as a whole. It is usually translated into English as 'beauty,' though also as 'health' or 'balance,' 'harmony,' 'goodness,' It means all of these things and more. It refers above all to the world when it is flourishing; it refers to things we make, which flourish and play a role in the flourishing of other things; and it refers to ourselves, flourishing as makers, as people inhabiting a community that inhabits a world. It is a word for the oneness of all things when they are joined together in a wholesome state."
"At her memorial service earlier this month I found myself thinking about Jennifer Wynne Reeves and hozho, with its implicit moral imperative. It struck me that Jennifer lived, made and wrote in a state of hozho. Minutes after I had this thought the woman with the guitar started to sing a Navajo song about peace all around us which became a singalong to close the beautiful and elegant service to this woman's singular life and work. The nearest English equivalent would be to say that Reeves lived a life bathed in Grace."
I posted the article on Facebook and commented that Lori's tribute to Jennifer also says a lot about Lori. The remarks on "hozho" point to a guiding principle for her. Is this right? I ask her and she says she thinks so, as if she hadn't thought of the connection before
I admit I'm looking for God in this holy time, through this holy time, and for Lori (and me) to be bathed in Grace.
Lori had told me she wants to be cremated. We hadn't yet made arrangements. The hospice social worker could help me when she is back from her weekend off, but I worry about what to do if Lori dies before that. I ask people, but nobody can recommend a funeral home, or tell me anything for or against the one that is on Bedford Avenue, across the street from Fabiane's. I call and talk to the director and he tells me the costs. $1750 for charges, transportation, for a "direct cremation. $67.50 for a NYC fee. Each death certificate "original" (I'll need at least four, probably) is $15. The urns range from $100 up. No memorial service. We'll take care of that. I make an appointment to talk to him the next day. Can I call before then, if I need to? Yes, 24 hours a day.
How am I to sleep? Not much.
Things she said:
"You are a brave man."
"...braver in one day."
"They were all passengers."
"Is it circling?"
"I think I will control myself. I think I will control myself."
Awake at 2 AM, I probably slept for three hours. I write something that reads like something I'd write while high (I'm not getting high during these holy days, because it would complicate things):
Don't we observe life as if its on a screen? The prisoners in the cave. And this viewing of this screen, this shadow show, is consciousness, a production of a neuro-machinery that evolved blah blah blah
and it is also a cultural machinery, and one guy, maybe, in this theater of society, among the audience sharing in this show, struggles to get out of the cave and maybe he does, although how can he be sure his escape is not another hallucination, maybe a more intense kind of shadow show in the direct bright light of a sun that is only a reflection of we don't know what?
When I read the above to her she says, "That is what they always say."
I am struggling to make sense of our traditions and hopes for after life. For me, this means grappling with Paul's doctrine of resurrection, which I believe was based on his mystical, altered state experiences of the "Third Heaven" and his hallucinatory encounter with the risen Messiah. This is the subject I tried to discuss with my father, a conversation I felt was still unfinished when he died. My prayers attempt to hammer against the walls of the empirical until I black out in a cloud of Unknowing and a mystical union with the cosmic mother/father that is the unconditioned condition containing and bringing forth the possibility of one's existence and, one hopes, impossibility of total annihilation, because the actuality is eternally remembered, but in another form?
"Not today," she says. 8:53 AM
For being born, one must die, is a universal law. But suffering in death may not be necessary. I don't know. People raised in a tradition that teaches that death is the result of universal sin have trouble with thinking of it as a part of the process of life. Problem of Evil, what is the term for that? Theodicy. But if you consider "sin" to be alienation from ultimate reality, and from the life system, and from one's own existence, etc., then this passage might lose some of its sting, at least for the survivors.
Ever since she went into the hospital, I've been reading a paperback copy of Walter Lowrie's A Short Life of Kierkegaard, which I found at Spoonbill and Sugartown. My concentration isn't so good now, so it is slow going. It normally wouldn't be difficult, and it is very interesting, but I lose my concentration.
Whatever Paul meant, he seems to have been convinced the immortal self of Jesus spoke to him as the transcendent Messiah. Could anyone else be so convinced? Early this morning I read Tennyson's In Memoriam, or parts of it. The famous lines have become cliches (this is how poets are punished for becoming famous). Tennyson was trying to recover or re-vision his faith after reading a book about natural science. The same nineteenth century issues that Dostoevsky, Tolstoy, and Kierkegaard faced many people are still unwilling to face today. I was looking for some words (possibly not a direct quote?) of Tennyson's used by Walter Lowrie in the phrase: "... he did not feel at once the full effect of a woe, but felt it long."
"I'm still here," she says. 9:38 AM
I'm not sure Lowrie's phrase is exactly Tennyson's, or that its in that poem. I still haven't read the whole poem, but I saw he was dealing with the same things I was in those confused notes I wrote this morning, and that I'm facing every moment as I watch my wife die. Descend into the underworld with her. That's how it feels. Munch's paintings of sick rooms. Lisa sat with her last night and I got more rest, but little sleep.
"Will you get rid of the dog, somehow?"
Pippa, Chris and Amy's dog, was barking. I closed the door. I turned off the air conditioners and opened some windows to let the cool breeze in. Blue sky. Lisa is out for a run. Khatima, the social worker, is stopping by 10:20 or so, depending on traffic. On the phone Khatima referred me to funeral directors. She gives me numbers for a couple of places that have worked with MJHS. I call one of them and speak with a funeral director named Chris. His price for direct cremation comes to a total of $855. I say yes to Chris and then call the other guy and say no to him.
"See me in the other world," she says. 10:00 AM
"OK," I reply.
She probably said that to comfort me. She told her therapist, and other people, that she's worried about me. When I break down in tears, which happens unexpectedly, it worries her. Maybe she's afraid I won't be able to take care of myself when she's gone.
"Don't worry about me," I tell her, "because you made me strong."
She asks for water and drinks it through a straw. I have to urinate, of course, and Lisa is still out and I'm still waiting for Khatima. We need to have at least two people here at a time. If Lori gets out of bed without help she could fall and it'll be terrible. Elisa, the hospice nurse, comes twice a week, Monday and Friday, to check on us, coach us, advise and encourage us. We love her.
That afternoon Oriane brought a salad, but I didn't see her. I did see Patricia and Judy when they brought food. I told Lori my idea of putting her ashes with the family plot, and I could join her there one day. She approves the location.
Things she said that afternoon:
"What you have is the ability to communicate is worse."
"Are you awake yet?"
"I haven't rested the mass... of the males (?)"
"That's enough wine."
"Why am I so long dying?"
"I don't smoke cigarettes anymore. I don't smoke cigarettes anymore."
I have a big dream that night. I dream a meeting is called at the building where Love One Another used to be, and I get Scott to go with me. Love One Another was a kind of alternative worship community formed by former members of that Christian youth group I was in when I was in high school. When we arrive, I see that the Love One Another sign had been taken down and was propped up on one end and discarded. The building had been abandoned. Broken windows. Looks dangerous. People are already gathering inside and a business meeting being called to order to vote on selling the building, or something. Legalese is read - I catch the word "signatory" - by someone I don't know. A security officer who once had me followed at an airport is walking around. No prayers or spiritual songs, just last rites for an empty building.
She's breathing very shallow and made a sound when I put the pillow under her feet. The hospital bed isn't long enough for her.
She lingers, although I woke up a few hours ago, thinking I might be lying beside her corpse, but she was breathing, very shallow, and she made sounds and moved slightly, especially when I touched her. I prayed for her, sang to her (Jimi Hendrix' Angel), spoke to her. "Love Lori Love Lori Love Lori." Eventually, as the sky was lit by the child sunrise, I did some Qi Gong, fixed cereal bowl, and made coffee. I tried to do some reiki on her, but she seemed to brush me off. Hard to tell when even gentle touch and soft voice are unwelcome. Last night I read to her some of what I'd written and she seemed to approve. Maybe she was just approving hearing my voice.
What to make of this sacred space?
Not for crowds or noise or contention, or riotous confusion and vulgarity, but a gathering place for conversation, contemplation, enjoyment of music, art, and literary readings and performance - without disturbing the neighbors. At times a salon, a gallery, a refuge, and I don't know what, because we will improvise within the above constraints - no crowds, no chaos, respect for neighbors. Years ago a worker of some sort who was going through all the units in the building told her that hers "wins the Gandhi Award" for its austerity. The space must always be worthy of the Gandhi award.
I don't know what to name it, if anything, although I considered "Hozho." Problems with appropriating and misusing a term from another culture. Maybe "Lori Ellison's Studio." I would like to begin with a gathering, or gatherings, of the sisters and brothers of mercy.
Maybe Rich would be open to an Audio Artists Loripalooza evening?
All these thoughts arise as I think about that big dream about the abandoned building:
Lori and I got together ten years ago after I ran into her at Zebulon, where Scott and I went to see Ken Butler play, and maybe consider it as a possible venue for the Audio Artists. Lori suggested we play at Sideshow, and she introduced me to Rich Timperio, who was also there to see Ken. She gave me her phone number and I called her the next day and we talked for a few hours. This is when she told me about the Christian Life youth group and her encounter with the Tao. I told her a similar thing happened to me when I was seventeen and had been involved with a group in a building they named One Way House. During a retreat before my first semester of senior year I, like Lori, wandered from the group, into the wild, and watched the sunrise, and listened to the animals, and felt, for a moment, infinitely free. Lori felt we had this connection. On the one hand, we felt our experiences set us apart from groups we had thought we belonged to. On the other, we wanted to belong to communities that were open to such things, and to such people as us.
"Dying is a natural part of life, but many people do not have experience caring for someone during the dying process and find themselves navigating through an unfamiliar territory"
"It is common for people to begin to withdraw from friends, family and the world around them as a normal part of the dying process."
"Near the end of life, it is natural for a person to no longer be interested in food or to be unable to eat or drink."
"Incontinence is the loss of control of the bladder and bowels that can sometimes occur as the muscles in the lower body begin to relax."
"Breathing may slow down, or there may be rapid, shallow breaths followed by periods of no breathing."
"As the body becomes weaker, so does the temperature control mechanism in the brain."
"At times, people nearing the end of their life may have confusion about the time, their surroundings, and the identity of those around them."
"Listen carefully; there may be meaningful messages being shared in symbolic language."
"At times, the person you are caring for may appear restless or unable to be still, and may pick at bedclothes or perform repetitive movements."
"Dying loved ones may exhibit sudden unexplained surges of energy, which are usually short-lived."
"Many people have questions about saying goodbye and wonder whether it is appropriate to do so."
6:00 AM At her bedside. I try to pick up her oracular murmurs, but they are elusive.
She did say, "I love Louis." (her brother-in-law)
"I want to fly."
"I wrote a story...26... about being underground."
"How many did they make?"
Something about absinthe. "Absinthe?" I ask. "No, not absinthe."
"I didn't do it..."
Am I intruding on her dream work? Even when her eyes are open, looking at me as she is sitting on the portable toilet, and saying, "Tell Lars...tell Lars..."
I can't help but move closer to catch a possible request for water, or help to get up to pee, or poetic gems from her opiated mind, because it is impossible to know if she is talking in her sleep, or telling me something I need to know, that she wants me to know.
When I heard that the Power of Attorney is only good while she is alive, and that it won't be approved until next week, I thought of her being like this all weekend and through Monday and that terrible contradiction is there in front of us like a snare. The contradiction between wanting it to be over, and wanting her to stay as long as possible.
I wish her bed was big enough for me to lie next to her, although I don't know if she'd want that. And its exhausting being here, trying to help, to make her comfortable, to listen for communication. She said I should get some sun. I said, "You are my sunshine."
The sun is up now.
The laptop is out of commission because a cup of water I had put on the bed fell over. That was a blessing, but expensive, if it doesn't recover. I am able to read and write and not get involved in trivia, or arguments about current issues, such as the arrest and apparent suicide of Sandra Bland. Or put too much about Lori on Facebook. Last night Chris looked at the laptop and suggested leaving the clamshell open to dry out, because the starting mechanism seems to be out, so the battery isn't being charged, or something. I have it open and in front of a fan.
I post on Facebook:
I extinguished my laptop two nights ago with a cup of water. I am now writing on a borrowed one that is more Fred Flintstone than George Jetson. It is very slow. I can't respond to your messages or look at the 97 notifications now. She is not well, she doesn't want visitors, she isn't eating, I have nothing to say that is not sad, and it will only get worse until it is over. Thank you for your concern.
Liv is back in Bushwhick, back from Norway, and offers to do anything -- "really, anything" -- to help. I'd like her to watch Lori when Lisa and I need breaks at the same time. Or when one of us is out. She's been doing this lately -- helping Susan, and so on.
"What?" I ask.
"I love you," I reply.
"I love you."
We kiss and I sit down again and watch and wonder - - Now? Not yet? False alarm?
Lisa gave her morphine this morning. Not sure if she wanted it, despite pain in her stomach.
After yesterday's swarm of ideas about a Lori Ellison Studio project, my inspiration was smothered by anxiety over the Power of Attorney, and so on. I called Cross County to see what I needed to bring when I bring the POA to the bank, and I learned that the POA is only good while "the principle" is alive, and that it will take "a few days" to be approved by the legal department. I thought this policy might be specific to Cross County, but when I went to the Citibank at Union Square to deposit my father-in-law's check to Lars Swan and asked the man at info about it, he confirmed that the POA is only for when the principle is alive and that I'd need a surrogate's letter - - whatever it's called -- afterwards.
I took the L to Graham and went to Cross County. I had the Power of Attorney and our marriage certificate in a folder and had to wait an unbearable and unknown length of time for the one person there to help a yuppie couple open a joint account. The husband annoyed me for no good reason while I sat and suffered for what may well have been an hour, until I was able to tell the manager why I was there and she made copies of my documents and said to call Monday or Tuesday.
At Citi I had tried Lori's ATM card three times, with three different combinations of the same numbers, and was shut out after the fourth try. At Cross County I asked if the bank would tell me Lori's PIN, but she said they cannot issue a new PIN. It wasn't clear if its OK to use her card if I remember the number. I tried again at an HSBC on Bedford, but it wouldn't let me because of my previous failure. While waiting for the yuppies to open their account I think I figure out what the PIN is.
I walked home from Cross County and the weather was nice enough I didn't break into a sweat, although my feet were sore. I still need to see a podiatrist and my primary care physician.
We drain Lori's lung. This time Lisa did it and I assisted. They put a port in her right lung in the hospital. Every couple of days, when the lung has a lot of fluid in it, we open a package from the PleurX kit. The package has a pair of latex gloves, three antibacterial wipes, a plastic bottle, tube, and other parts to plug into the port and drain the yellow fluid into the bottle, which is then emptied into a toilet and discarded with the rest of what was in the package. I watched this procedure a few times in the hospital, and we watched an instructional DVD. I only did it once, with Lisa overseeing and helping. She is obviously better at this medical stuff than I am, but I think I need to learn what I can, and we follow the illustrated instructions each time. Elisa, the nurse, helped us once, and amazed us with the ease and speed she did the procedure.
I ate the rest of the chicken Judy and Patty brought the day before and some peanut butter chocolate ice cream Chris and Amy had, and a very refreshing Brooklyn IPA.
I don't know if Lori is drifting off into the Big Sleep now or if her drifting in and out can continue until Monday or Tuesday when I can use the POA to make some transactions. The guy I talked to at Citi was helpful and sympathetic and suggested that Cross County won't know my wife is dead unless I tell them and I could still do the transactions I want to do. When I first got the POA I thought I was clear and didn't have to do anything with the bank yet. It would've been tough to get away from the hospital, then, to go to the bank, but, if I had -- and the POA was approved -- I'd be finished with it now.
We take turns sleeping next to her and last night was Lisa's turn. I went to kiss Lori good night, and thinking I should say a short prayer, and considering the words to address Ultimate Reality -- Heavenly Father? Holy Mother? -- I put my hand on her head and say, "Bless you..." "Don't do that!" she snaps. "OK."
"I'm going to be the hero of the showing."
"I'm fine with the one."
"The blank is coming, is scary."
"You've forgotten...You forgot..."
"You make something of your own."
Another night watch expecting her to stop breathing, unable to make out what her murmurs are saying. She started to get up a few times to pee, and I get up to help her. Two or three times before she successfully pees, and Lisa was up and helped and gave her some morphine because "there was some discomfort." Lisa judges this by Lori's furrowed brow.
I had dinner with my loft mates and told them my life story, and then Lisa and I switched places and she hung out with Chris and Amy and I got in bed and slept OK, but don't remember when I woke up.
Angel From Montgomery. Bonnie Raitt's version of John Prine's song is on my mind. Lori was born in Montgomery, Alabama, etc. I posted it on Facebook yesterday to make everybody cry. Sure enough, David tells me it was one of his late wife's favorites and was played at her memorial.
Saturday morning I get some free legal advice from our friend Stacy, who is a lawyer who has worked with estates. We talk on the phone about things like whether the POA has a gift rider, and the possibility of using this rider to transfer funds (to make a gift to myself) to manage expenses, such as rent and bills. She says I should say that the bulk of our assets are in her accounts. Stacy suggests I call the bank and talk to a manager. When I call, I discover that the POA has already been approved and I can come in before the bank closes at 2. I am told that I cannot transfer her funds to my account, but I can withdraw limited amounts of cash for daily expenses, and I can pay bills with her checks, signing my name and the term "Attorney in fact." I'll have to study this interesting term.
Stacy advises me to pay as many bills as I can with Lori's checks, and to make overpayments. I look at the bank statement for my checking account. I need to stop all automatic payments for August. I won't have complete access to the funds until I inherit it all.
This is so horrible, to be chasing after her money during this holy time. The Abomination of Desolation is placed in the Temple, but not by me, and it is a sign of the end.
The End is what is taking place in the other room, if it hasn't happened already.
No, it hasn't. I heard her cough and went in. Lisa was adjusting the oxygen tube and I put my hand on Lori's and kissed her on the forehead and on the mouth. Lori wiped her mouth with the back of her hand. I must've had some coffee on my mustache.
After the End, the new world, whatever that will be. After a conversation with somebody about about a dispute one of our neighbors is having with the landlord over their lease, I become suddenly unsure and anxious about our status in the building. Whatever I do with Lori Ellison Studio might be short-lived, or not as long-lived as I hoped it to be, and I need to keep that in mind. All Things Must Pass. At least Lori was never homeless, as she always feared, and will never suffer eviction. I can more easily adapt and I should have an emergency plan of some sort. We are still waiting for the renewal of our lease, and new rent, which will increase about ten dollars. The shadowy consortium that owns the building would obviously like to get rid of us, stereotypes that they are.
These last moments with her don't feel precious, even though they are, and I wonder how much her emotional detachment from me is part of "the dying process," and how much the depressive state she was already in. She has given up the pharmacological fight against that by refusing to take the Bupropion and Lamictal for several days now, and awaits death, but it takes so long, and is hard. Would she end it immediately, if she could?
After dinner and conviviality at Chris and Amy's with Stacy, Jimmy, and Frank, I trade places with Lisa so she can be with those dinner companions. It was an abrupt scene change when I walked in Lori's room, hard to see, hard to think about. Lori lying on the hospital bed, nearly a corpse, and waiting to become one. Waiting for her cremation.
I wake up at 4:30AM Wednesday and take two Extra Strength Pain Relievers and attempt to return to sleep, but I'm in bed until six and have cereal and coffee in my work space near the window, which we call Cafe Stockholm. Jimmy left last night for Richmond, and will return Friday. Lisa, I heard, is leaving Friday. I guess Jimmy told me. It is good to have three people here, including me. I can handle the meds, etc, that Lisa is doing now, but I need to leave the room now and then, and the building now and then. I can handle being the lone primary caregiver, but I need help.
Among those already helping, I need to know their actual availability and what they can do. These are the primary brothers and sisters of mercy. Some of these might be those who have already helped and others those who have offered help.
Lists of characters;
1) current helpers
2) potential helpers
Degrees of help.
"Days or weeks," Dr. Tsai said. He was really Chinese, wearing a beige suit of strangely heavy material, considering the heat, and a black baseball cap. He had round frame spectacles and one of those long, black, wispy beards that come from below the jawline. He took her vitals and said things about medication and the process of dying that I don't recall, but were not really new to us. He agreed with her being here, which was a main issue. He said to call if she has a seizure or bleeding --? -- or its too much for us.
Katharine had come earlier, to sit and help 10-2:30, and offered to help coordinate and schedule people who want to come and sit with Lori. She is arranging four hour shifts.
Meanwhile, Lisa will be here through the weekend and then back to Houston. Their father called yesterday while Scott was visiting and aggressively voiced his judgment that Lori be put in the hospital because he thought it was too much for us. It might become too much for me after Lisa leaves, especially if interest in helping falls off. I told Lisa about my argument with her father, and we had a good talk. There was pressure for her to get back to her job in Texas, because she expected to be subpoenaed to appear in Court Monday as a witness in a case involving a co-worker accused of inappropriate contact with a child in the Pediatrics ER where Lisa works. Her father was worried about her being overwhelmed, but she laughed this off. She wanted to stay to the End.
It was good to have Scott over. He'd been out of town, and I hadn't seen him for weeks, so I brought him up to date on the past three weeks. He started a drawing of me while I argued with Lori's dad on the phone. Scott wanted to make sure I took Katharine up on her offer to take over scheduling.
I had to remake my calendar. The first one was off by a day. I started making the new one while thinking about Dr. Tsai's "days or weeks." Not that I can calculate anything, but this suggests August.
She became active enough to want to stand up, but she was much weaker than the day before. She still tried it a few times. Hard on my back, but not hurting it. We stand and embrace and she seems to be looking out the window at the bridge. She doesn't look at my face. Hers is turned to my right. What is going on in her mind?
Liv came over this afternoon. Lori had been sleeping all day and I didn't want to wake her, so I didn't touch her. Liv came in and went to the bed and kissed Lori on the forehead and the sleeping beauty raised her chin and puckered her lips for a kiss, but looked puzzled when she opened her eyes and saw Liv, as if she'd been expecting to see my face. I quickly moved in and kissed her on the mouth, and Lisa and Liv and I were petting her and cooing. It broke my heart when she went for that kiss and I wish I had already been there for it, and I wish she'd seen my face and not Liv's.
I fell asleep on the bed next to hers and slept for a couple of hours, or an hour, and then got up and ate part of a tart that was in Marion's Fresh Direct delivery. I got a call from a friend and talked to her while I ate and drank coffee. At first I didn't know who she was, because she called me "Chip," meaning she was a relatively old friend, but I finally recognized her voice. Her father recently died of cancer. I'd talked to her brother-in-law about it and their experiences with hospice were similar to ours. He told me that the day before he died, his father-in-law got up and became very active for a short time. This is something I've been hearing about, and wondering if it would happen with Lori. Elisa, the hospice nurse, said it sometimes happens. I wanted to ask my friend, who, like Lori, has bipolar disorder, her opinions on bipolar depression and normal terminal cancer moods and the efficacy of psych meds at this stage, but all that is irrelevant now, and she didn't know any more than my therapist.
While we were talking, Liv called to Lisa and I hurried in. The catheter or bandage was leaking and soaked and Lori's shirt and bedclothes were wet. We had intended to drain her when Liv arrived anyway, so the three of us did that. Much easier with three people.
Liv left, and Frank is scheduled to come at 7.
7/30 3:25AM Dream: Walking along a road or highway w/ Tom (like when we'd go hitchhiking) and we run to catch a bus. He's way ahead of me, but the bus waits for me, but when I get on I wonder if this is a bus I really want to be on. It seems like a nightmare bus in a dark comedy with sick children and I see the word "Quarantine" on a glass container and no place to sit. I don't see Tom at first and I worry he might've decided not to get on, but soon -- near the front I hear him say he's got some great hamburgers.
6:12AM Awake for over three hours. I went on Facebook and argued with someone about police shootings and Black Lives Matter. Very frustrating and infuriating, and if I hadn't met him in person, and known him to be a gentle scholar, I would ignore him, maybe. All this distracts me from my immediate anguish, but the implicit racism behind his confusion distresses me.
Frank and I were talking about our mothers' deaths. We were sitting on either side of Lori's bed and she seemed to be asleep. Frank said that after the feeding tube was removed, his mother became very agitated and then unconscious. The hospice people encouraged him to talk to her anyway, saying she could still hear him.
My mother also became very agitated before she died. I was at work and my family called and said she'd taken a downturn. They put her on the phone and she was very upset and confused. Lori and I flew down the next day and went to my sister's house where both Mom and Dad were getting hospice care on twin hospital beds. Mom was unconscious and I was alone with her for a few minutes. I did not know if she could hear or understand me and I felt like an agnostic trying to pray to God when I said to her, "I love you, and I know you love me." A tear ran down her cheek. Was it a tear of weeping, or just an overflow of moisture that looked like weeping?
Lori and I drove back to Palm Beach Gardens, to my parents' old house, and slept there. I dreamed we were getting ready for a house sale, with items on tables. We weren't ready to open the door yet, but people were at the door already. Mom was standing in front of me. Her hair was dark and she looked like she did forty years earlier, and she was smiling at me. I woke up and got the call that she had died.
I told this story to Frank and then Lori opened her eyes wide, smiled at us, and said, "Hi!" I kissed her and she kissed me with open lips. Lisa and Frank and I petted her and kissed her and I wanted to be alone with her, to talk to her while she was conscious. She'd been mostly sleeping and non-responsive all day.
Getting Lisa and Frank to leave was not easy, but they left us alone (supper was ready and Lisa was concerned I eat it while it was warm). I talked to Lori, expanding on the theme of "I love Lori and Lori loves me," and soon she was trying to get up. She struggled with much effort to sit up and put her arms around my neck and I helped her stand so we could hug and slow dance while I sang Little Wing and other things (Hey Good Lookin') and kissed her. When she was finally too weak to be on her feet, I sat her down. I picked her up and put her back in place, head on pillows. She later made a weak attempt to get up again, but eventually went to sleep, snoring softly. I kept talking to her and singing or humming (Tomorrow Never Knows, Wade in the Water, etc.). I was thinking that if she left now, it would be good, but I knew it could still be "days or weeks."
I even told her, as I talked to her that night, "'Days or weeks,' I don't know. I want to be with you when you go, but I have no control over that. It might happen while I take a bathroom break." I actually told her this. I tried to be as truthful as I could be about what I know and how I feel and the main truth is love, that there is love, that our love is proof of love love love.
I just checked. She and her sister are sleeping like babies. Like they probably looked when they were little girls sleeping in their beds.
7/31 2:40AM Dream I'm making a bed for myself out of boards, putting a smaller white smooth board on top of others.
Woke up again around 3:30 and took aspirin, checked in on her and Lisa. Later, I hear her making sounds and go in. Lisa is looking at her. Temp of 102. Yesterday, last night, it was 1.09? 1.12? - so Lisa gave her a Tylenol suppository. She's had two more since then, that I know about. She was moving, jerking her arms, rattling breath from secretions in mouth - there is a pill for that Lisa gave her. I think our Wednesday night slow dance was the surge of energy I've been waiting for, that I read about in the booklet, but Greg seems to think something more dramatic and energetic is in store for us today or tomorrow. He was really distraught, face wet, after first seeing Lori yesterday. It was his shift. He'd spent eight months with his mother, and hospice with a cousin, and it was an exhausting terrible experience.
Last night I searched for photos of her on CDs and found a few good ones, including two of her at the Marcy Station, waiting for a Manhattan- bound train. I posted one and noticed, for the first time, that the train was arriving -- a blur on the left, still in motion. I was on C and A's computer and this ghost train spooked me enough to go check on her again, but she's still waiting.
I think that is where we are -- the blurry approach of the ghost train. Yes, this is where we are, but minutes or hours? Or still days or weeks? I 'm thinking hours or days. But I don't know, do I?
The existential and the universal. Finding Love Itself in one's love for another, and mutual love -- the wisdom of love, as well as the love of wisdom, or love/wisdom and wisdom/love. The manifestation -- or revelation -- of universal love in the love of another -- not selfish, not a love you can lose or possess. The words, or similar ones, came to me earlier, because I am a philosophy student.
8:39AM Perfect morning. I turned off the AC and opened a window for fresh cool breeze and I'm at that open window now. In the future, I'll begin studio time here -- Cafe Stockholm. Maybe I'll work in the mornings, whether its 3AM or 9AM, and go for a stroll, a flaneur drift, in the afternoon. Maybe even my circadian rhythms will change.
Gilbert arrived an hour late last night, but with lots of Vietnamese food. Elizabeth showed up, with a dislocated knee, and we socialized in the kitchen. Gilbert seemed OK with hanging out duty while I fell asleep during Lori watch until Lisa came in.
Making second pot of coffee to have with banana bread. Don't remember who brought that.
AUGUST 1, 6:45AM
Blue moon left me standing alone.
Lori died around 2:30AM. It was 2:35 when I looked at the clock. We were with her. I'd been lying by her side on our bed, she on the hospital bed, and Lisa was sleeping on the other side of the bed, and Jimmy was sitting beside Lori's bed, and Liv somewhere in the room. I might've been asleep when Jimmy called out to Lisa and we were instantly up, the four of us, and around her, touching her. What had happened? Her eyes wide open? But she was still breathing shallow gasps far apart, just like the booklet says. Lisa held her wrist and hand, taking her pulse and my lips were on her forehead and hand on her heart and she was still, and Lisa touched me and nodded. Jimmy's face was made unrecognizable by grief.
We sat with her and, after the oxygen was turned off, I lit a candle in front of the little wooden Guadalupe figure from Guatemala that we called "the Sweetheart of the Rodeo" and read the Farewell passage from Ovid's Orpheus and Eurydice.
I called MJHS and, after a while, Chris the funeral guy. He arrived after 4, and his assistant, maybe almost 5, and we filled out and signed papers.
Liv and Lisa had washed her and put her in the purple tie dye dress. She had a smile. The guys came in and lifted her with the sheet she was on, and wrapped her in it, and put a grey shroud over her and wheeled her to the elevator, and into the pre-dawn, under the moon, and drove off.
Will it hit me all at once, after Lisa and Jimmy are gone? Or will it creep over me slowly, or stages of attack? Like a blitzkrieg.
Contacting individuals before I post on Facebook with the picture of her in a garden in 2005 and a picture of her unfinished painting on her work table.
I was with her all afternoon, whispering things that came to mind, kissing and petting her. The slow dance two nights ago was her last burst of energy and activity, just as Elisa had advised, signaling she would soon be gone.
Wisdom love, love wisdom, love, love, love
8/2 6:49AM Hospice people, and other people, say the dying, although they appear to sleep, can hear what you say, and understand. I understood that this is the state during which Tibetans would read the Bardo Thodol to someone who is dying. I wasn't comfortable, let us say, reading that, or anything, to her, so I sang and whispered what came to mind, and I asked questions, and confessed my questions and uncertainties and certainties, but mostly my love and my new understanding of wisdom as love and love as wisdom -- wisdom love, love wisdom.
If you see a white light, I said,
you'll know what to do.
If you see the Holy Mother,
you'll know what to do.
And, if you see Jesus,
you'll know what to do,
and know they're projections of God in you?
And I sang Wade In The Water, with many additions from parts of songs and scriptures on the theme, and back to the chorus, over and over, all day and night and
Love Lori, Lori Love
You said you didn't know how to pray, but you made a prayer out of paper that said,
LOVE LORI LOVE LORI LOVE LORI LOVE LORI LOVE LORI LOVE LORI LOVE
and God heard your prayer and I heard your prayer and I loved Lori.
A community garden in the Lower East Side, in the early days of our love, Spring 2005.
Unfinished work, July 2015.
Lawrence Swan 2015