Friday November 21, 2014

I don’t know how I got here. Do I have to leave?

No, you don’t have to leave. This is your home.

lThere are bits and pieces, she says, looking around. Some things are familiar, but some things I don’t recognize. Like that. She points toward her orchids.

* *

“I’m going to make your coffee now,” I say. I walk into the kitchen and hear her saying something. I go back to the living room and she is crying. “What’s wrong, Mom?”

“I can’t believe you said that,” she says. “Making me a coffee. It just really hit me there for a minute.”

I bring her coffee.

“Oh, my cup!” she says. “How long did it take you to learn how to make this?”

“It didn’t take long. You taught me. Until yesterday it was Adam who usually made your coffee.”

“He’s a nice man. Did somebody make it underneath?”

“In the kitchen?”

“Did somebody make it under the table?”

* * *

 

“Am I an angry person?”

“No. Why?”

“I hate angry people,” she says slowly. “I was beaten by angry people.”

“You didn’t deserve that. It wasn’t your fault.”

* * *

 

“Do I work?”

“You work around the house. You have a medicine wheel garden in the backyard that you work in.”

* * *

 

She is exhausted and in pain after the short trip to the commode and back into the bed. “I don’t know how much time I have left. I don’t want to spend it this way. I either want to be doin’ . . . “ She doesn’t finish.

* * *

“If I had those wide-soled roller skates, do you think I can go through the house?” How to render that tone, like a curious and humble little girl who’s a little afraid to ask the question.

“I don’t think so. You can’t support your weight right now.” I was immediately sorry I had added those last two words.

“How can I make that better?” she says.

“I don’t think you can, Mom.”

“Why haven’t I seen a doctor?”

“The doctors know what’s happening, Mom.”

* * *

“Can we put the trapeze here?” she asks, pointing at the ceiling above her.

“What do you want to do with a trapeze?”

“So I can put my foot and . . . advertise – advertise,” she says, interrupting herself, already knowing it’s the wrong word. From there things descend to incoherence.

* * *

How can I do my housework?

I’m taking care of that. I’m doing it for you. This is not, strictly speaking, at all true.

But that’s not right.

Well, you’re sick, Mom.

Still. Everything is cattywampus, she says, with the usual sadness of these sentences.

* * *

“Can I do anything?”

“No, you can just relax.”

“That is so boring.” In a small voice she asks, “Can I not work on that little bench that Silke gave me for working outside?”

“I don’t think so,” I say. I’m afraid she’s going to cry. “It’s winter now, and the garden is starting to hibernate.”

* * *

“Can I have a dog?”

“If you want. What kind of dog?”

“Small one. I mean nobody’s sleeping with me, right?” She says this like she needs confirmation. “I’d like to sleep with somebody.”

“I can sleep on the couch there again.”

“Yeah but you don’t lick my ankles.”

* * *

“Have we heard, if Renate died?” “Is this Saturday?” “Is anyone coming this morning?” “What do we have to do today?” “So where’s the . . . microwave?”

* * *

“Somebody said you better get living or get busy dying. There’s an innate star of strength inside. That’s what I need to find. My star. And a dog.” She is silent for a while, then adds, “And he better not die before me.”

* * *

When a dying person can’t remember anything, you have to decide whether to tell them over and over again that no, there is nothing that can be done, so that over and over they would hear the terrible reality as if for the first time. What is the point in causing her pain to give her the truth when she will soon forget the truth and go through the pain again later?

* * *

Vonnie (not Bonnie) the CNA visited earlier and applied Mom’s marijuana salve to her bedsore, propped up her pillows, and generally tended to her while I took a shower. Laurel and Carrie had planned to come, but ran into a babysitting problem, Laurel said, in a text. She added, Carrie is having a really hard time about your mom she does not think she can come and help her it is too hard on her. We will try to come on Monday to see her. I was disappointed not to have their presence here, and not to be able to take a break to run errands or do work, but I could understand. Not long after, Linda Berry called to tell me that I should expect calls from a number of retired nurses and caregivers, some of whom knew my mother, and all of whom wanted to help.

I brought Mom some cantaloupe, honeydew, and watermelon that I’d cut into small pieces. She ate two pieces of watermelon with relish. The first thing she’s eaten in maybe 15, 18 hours, and hardly anything before that. I’m reminded of Bonnie saying, two days ago, “There will be a time when she doesn’t want to eat anymore. And that’s all right.”

* * *

Mom says something about not wanting to be stuck in her bed. “I should be outside with a football and the kids,” she says.

* * *

11:17a.m. I sit back down on the green couch and return to my laptop, writing in my journal, trying to do some work.

She stirs. “It’s not going to take long anymore,” she says, in that small, slow, tremulous voice. A few tears cloud her voice.

“What? Why do you think that?”

“That’s what she told me,” Mom says. Vonnie, the CNA again. I meant to have a talk with her but she left before I was done showering. “And that it’s not going to take long anymore. She doesn’t want me to be alone here without recognizing anything, you know, when it starts.”

“You won’t be alone, Mom. I can tell you that.”

* * *

“I felt like I haven’t spent enough time with you guys.”

I think this is probably more about guilt than regret, so I say, “Sure you have, Mom.”

“Yeah?”

“You spent as much time as you could with us when we were kids, and we’ve spent a lot of time together the last few years. Remember all that time we spent together on the Camino?”

She nods.

A few minutes later she groans. “Do you have pain?” She nods. “Right side,” she says.
I click her pain bolus. A few minutes later, she groans again. It hasn’t been eight minutes so we can’t get any more medication out of the pump. She turns to her side and as I lean down to put my head against hers, and my hand around the back of her head, and my hand around hers, she begins to cry.

“I don’t want to leave,” she says, mournfully. The sound of her voice shreds me.

“I know. No one else wants you to leave, either.”

* * *

Once more, I observe that the same brain that fails to recognize people, that can’t remember how to stop her own pain, is somehow all too aware of its own deterioration and of the reality of death.

* * *

Willa Kay and Jayne bring their signature blend of positivity and joke with Mom.

“I haven’t seen so many outlaws in a long time,” Mom says.

Apropos of this, I tell my aunts how Mom sometimes channels the irascible, profane Grandma Powell. Jayne says, “When your mom came here we taught her how to swear, Cameron. We just thought it was so funny with her German accent. And she’d get all the words in the wrong places. We just loved that. Of course now she’s really good at it.”

Willa Kay has brought a nutrition product called Ensure. She tells Mom about it, and suggests that she add vodka. Willa Kay brought ginger tea last week, but Mom, her high-falutin palate even more finicky now, pronounced it as tasting “like soap”.

“How’s your backside, Inge?” Willa Kay asks.

Mom speaks slowly, as usual. “That’s a very personal question.”

Willa Kay guffaws.

* * *

I miss most of their interaction because I’m on business calls — and the world’s the poorer for it — but they seem to be having a good visit. Berle arrives too. During one of my calls, my nephew Kaleb calls me and wants to FaceTime with Mom and me. I had suggested that Candy arrange for FaceTime calls between Kaleb and Mom quite some time ago. But when I ask Mom if she wants to talk on FaceTime, she knows she’s just too tired. “I don’t know what to say,” she says. She adds, “We’ve just lost too much time. I used to say I wanted to talk to him, FaceTime, but nobody ever had time. And now we’ve run out of time.”

She is asleep. I am on FaceTime with Brianna and Kaleb, in the bedroom, and I ask them if they want to see Oma. They do, so I walk into the living room with the phone’s camera pointed toward Mom. She opens her eyes and asks what I’m doing. Busted. I tell her I’m on the phone with Brianna and Kaleb. I unplug my ear buds and tell the kids to say hi to their Oma, which they do. Their Oma gestures for the phone and pulls it toward her. She sees her grandchildren and she begins to cry, and tries to talk through her tears. “Oma loves you so much.” I find myself concerned about the kids seeing their grandmother sobbing unreservedly. Brianna looks sad.

* * *

I’m on Skype with my core team at Physician Cognition when I hear Mom, loud enough to penetrate the door I’ve closed to let her sleep. I pull out my ear buds, excuse myself, and dash into the living room. Mom is heaving with sadness, great big sobs. “Are you hurting?” I say. “Do you have pain?” I have already reached across her and pressed the painkiller bolus when I see her shake her head. “What’s wrong then, Mom? Why are you crying?”

“Because I have to die,” she says, each word wrapped inside a sob.

What could I do but hold her? I had at last reached the absolute nadir of my helplessness.  “I don’t know how to do this,” she says.

I offer some variety of the faux-profundity I sometimes catch myself in.

“It’s not so much the journey,” she says, after a while. “It’s that . . . I have to do it alone.” This last sentence wasn’t intelligible the first time, maybe twice, because of her crying.

“You won’t be alone, Mom.” I don’t know what I’m talking about. I don’t have a strong belief in what happens, but I know I want to cobble together for my mother a story to hang onto. “That’s what all the near-death experiences have in common. We are greeted by guides who are pure love. They’re made of light and love. Oma will probably be waiting for you too. And your big brothers.”

She weeps.

* * *

It had never before occurred to me that people with terminal cancer and people on death row had so much in common. A big part of the justification for capital punishment is that people are generally really afraid of dying, so if there’s a death penalty, at least some people will avoid it out of pure terror at having an execution date. Similarly, my mother is conscious enough to know that she faces imminent death. I can’t even begin to imagine the emotional distress she must be in. It truly is a wonder that she isn’t crying or shaking or vomiting nearly during nearly all her waking hours. When you are not ready to die, when you very badly do not want to die, there can be no greater terror than knowing you are going to die very soon.

This psychological hell is the second cruelty of cancer. The first is the long and diverse suffering people endure through the disease and its treatments. Cancer’s victims are worse off than people on death row.

* * *

I’ve had various theories for my seeming detachment (i.e., less sad, less desperate to connect). New medication, like thyroid pills. Increasing acceptance. Compassion fatigue. And, most recently, I’m less depressed overall because once again I have a clear purpose, an obvious Camino. I am more engaged in Physician Cognition, which I think helps, but mostly, I am single-mindedly here, on a conspicuous path, with my mother. The path is the saddest of paths, but it has the virtue that I know, for the first time in a while, exactly what I’m supposed to be doing.

* * *

“Sneak up here,” she said earlier in the day. It took me a while to understand what she was saying. She patted the bed next to her. I wedged myself between her and the railing, put my arm around her, and felt her head on my shoulder. Other than metaphorically, my mother had never leaned on me before.

Saturday November 22, 2014

I am sleeping in my bedroom when I awaken, and then hear why. Mom is in pain, and she’s crying. I run out and deliver a shot of painkiller and speak soothingly. “Wish I could just flip a switch and get it over with,” she says, through tears. After a while she asks for some tea. I make it and bring it back to her. She gazes at me and then begins to cry. “Everywhere I look all I see is death,” she says. She looks around her. “Death all over.”

* * *

“Tell me about yourself,” she says to me. “Something that’s good.”

“Well, I remember that on my seventh birthday, you gave me a choice between having a birthday party with all my friends or having a fine dinner with you at the Brickskeller, in Huntsville. Do you remember that?” She does. “You were surprised that I chose dinner with you instead of a party. And I don’t remember this, but you’ve said I talked about black holes and white dwarf stars and red giants and galaxies.”

“I remember the white stars,” she says. “You were explaining it all to me like a little professor. I said, ‘Who is this little person? Where did he come from?’” She pauses and rests for a moment. “That was the first time I saw, to my astonishment, how smart you were.” She looks like she’s going to cry. “I knew that you were going to be a different sort of kid.”

* * *

I remind her of trips to Germany and Switzerland, including with Aunt Jayne and my cousin Mike, who would die, ten years later, at 23, of lupus. I remind her of how excited she was to attend my law school graduation.

“I could not have been prouder, happier, anything,” she says, brightening at the memory.

* * *

I look up from my laptop at the sound of her crying pitifully. She has spilled her piping hot tea on her chest. I help her to dry it off but it still smarts for a while. Knowing her belief in her marijuana salve, I offer to apply it to her skin, and I do.

She speaks more slowly this time, almost asleep. “I have,” she says, “an advice. For Damon.” My half-brother, husband of Jannilyn, father of Braxton.

“What is your advice, Mom?”

“To be a good father.”

A few minutes later, she says, “Have we always lived here?”

Somehow wisdom coexists with cofoundment.

* * *

Then the agitated concerns. “Where is Gunter’s watch? We have to get to it, fast. Before anyone else gets to it.”

“Would you like to smoke some weed?” I say.

“Oh, yes,” she says.

“Best idea I’ve had all night.” I hold the glass pipe for her, remind her that she must close her mouth over it and breathe in. “Another hit?” She nods. “Because you deserve it.”

* * *

She gets an infernal itch. She squirms around in her bed and moans from the pain her movement causes. “It’s like when you fall and then you’re healing,” she says, in a fascinating example of still-intact associations.

“You mean like a scab? The way a scab itches?”

“Yeah.”

* * *

I keep administering medicine. Four pumps in a row, the most ever. I hold her hand as she falls asleep and then I sleep on the couch, waking up to her groans every so often, reaching out for the bolus, and clicking the button. The mantle clock ticks down the seconds. The air pump hums.

* * *

This is the third day when she has not only eaten virtually nothing, but drinks very little too. I’ve read that a person can survive for two weeks or so without food, but only a few days without water. I had imagined that she would stop eating first, and then would drink broths and tea for a while.

* * *

“What’s that dog doing?” she asks.

“What dog?”

“The one that hopefully isn’t peeing on the table,” she says, looking behind me.

I turn to see Rudolph the Red-Nosed Reindeer, which Mieshelle had bought for Mom and I’d stood up on the table.

* * *

“Do you like to read?” she asks me. Only hours before I had credited her with my love of reading and writing, which, I’d said, “is all I do now.”

“Yes,” I say.

“That’s good,” she says.

* * *

“I need to be able to ask you something,” she says, “without fear of recipration.”

“Fear of what?”

“Recipration.”

“What does that mean?”

“Fear of reprisal.”

Or she was mixing reciprocity with retaliation.

“Yes, you can ask me anything.”

“Why,” she says, “do houses always have three or four bedrooms?”

* * *

“God what an altering moment in my life.”

* * *

I am sautéing a halved croissant and some apple slices when I hear her speaking from the living room. She says something about “the great person doing things in the kitchen” for her. She shows gratitude again shortly after, when I bring her tea that is not piping hot and explain, “It’s not as hot as you like it, but it’s also not dangerous, or painful.”

She smiles sweetly and says, “You’re so right.”

* * *

“What’s that thing, hanging down?”

I reach for the airplane neck pillow. “This?” She nods. “This is for airplane travel.” I put it on and lean back on the couch. “See?”

“Did I travel with that?”

“You sure did.”

Her face breaks into sadness. “Where did I go?”

“You went all over the world, Mom. All over Europe, Brazil, around America . . .”

“How did we afford all that?” she says, back to one of the central themes of her life.

“Well, you saved up money. You went on a few trips with Don L——” – an ex-husband – “and I bought a few tickets, and the rest you saved up for.”

“I would never go on a trip with Don L—–,” she says.

“Well, you did then.”

She shakes her head. “Not even then.”

* * *

Maybe it was the long sleep last night, but Mom hasn’t slept much today. It’s a little after 4p.m. and she’s sleeping for the first time since 11ish. Peggie stopped by, bringing Mom some mashed potatoes and gravy from KFC (a guilty favorite in recent months) and me some drunken noodles. Mom ate a tiny bit, just as she’d eaten only a bite or two of her sautéed croissant and apple slices. We had to press the pain pump a few times. Mom was crying with pain, and that made Peggie cry. A lot of Mom’s speech is non sequiturs.

I get up in the bed and hold her for a while and my brain continues to refuse to wrap itself around the idea that in as little as a few days I won’t be able to stroke her hair or kiss her head or see her smile.

* * *

6:40p.m. I hear her cry out and then begin sobbing. I leap up from the couch. “What’s wrong, Mom? Do you have pain?”

“Nightmare,” is all I could make out.

“You had a nightmare?”

She nods.

“Well it’s over now.”

“Are you sure?” In that voice like a three-year-old girl.

“I’m sure. It’s finished now.”

But only seconds later she is again in distress. “Why does my tummy hurt so much?”

“We need to get you some more medication,” I say, moving around the bed to the bolus.

“I thought it was over.”

“No, your pain isn’t over. But we can stop it with this medicine.”

I sit with her and caress her head and hand until she seems to be asleep. She opens her eyes and looks at me, reaches out her hand and begins to stroke my cheek.

“You’re the best man I’ve ever known,” she says.

“Who raised me?” I say.

* * *

She’s taken in a terribly small number of calories lately. Is she eating more than 200 calories a day? How long can this go on? “I look like a starvation person,” she said to me this morning. “If you put me side by side with a starvation person, I would look worse.” And indeed she looks like nothing so much as the concentration camp survivors who were photographed by Allied troops. That is cancer: the concentration camp of the human body.

Sunday November 23, 2014

Bonnie arrives at 8 or 9 a.m., Silke tells me by phone she will be here at 1p.m., and Peggie texts me to say Berle has agreed to watch Mom while I watch the Broncos-Dolphins game with Peggie, Pat, and their daughter, Sydney. I call up my friend Jeanne as I’m driving to Starbucks.

Jeanne was a groomsman at my wedding. Well, that was my original idea. In the end she read a poem. Point is, she’s the most solid and long-standing platonic friend I have. Her father died five years ago.  She hadn’t known Mom’s condition and was unhappily surprised and empathetic when I told her. She said she knew it was hard, but my job was to “ferry her over to the other side.”

After her first reaction to her father’s dying, she said, she just got down to business. “If you understand that’s your role, it’s easier.” She said she wished she’d done more than look at photo albums with him. “We should have driven him to the ocean and wheeled him down to the water one last time.”

“I wrote his eulogy before he died,” she told me. “It was my grieving and my therapy. It was a good piece of work, if I do say so myself. It ended up being a powerful tribute that was meaningful for other people who were mourning him.”

“I want to read your blog but I’m afraid I’ll just start crying,” she said. “It’s been five years. I still sometimes have a good cry. Like when I’m at a stoplight, you know the click click of the blinker or windshield wiper. I’ll just break down.”

“It’s a very strange journey,” she said. “It’s the sort of thing where whatever you feel is normal. Grief is different from other motions. It’s this weird, out of body thing, and other physical manifestations. It still fucks me up five years later. I’m so sorry, Cameron. I had hoped your mom would have a lot more time.”

“You’re going to go up and down differently from the way you do other ups and downs,” she said.

She asked if my mother has expressed her wishes about a funeral and the like. Yes, I said. She wants to be cremated, no funeral, and then have her ashes spread over the Black Canyon. I will probably also take them to Braunwald [Switzerland] and maybe on another long walk.

* * *

At Starbucks I work for a few hours, then I head out to the Baker ranch. Good food and sympathetic conversation, and Peggie is super happy that the Broncos come from behind to win.

* * *

Son, she called.

Yes?

The other one.

I look at her to see if she’s joking.

Do I have another one? she says, probably reading my face.

No. Adam was here though, I say, so that she won’t think she’s completely crazy.

* * *

How do we travel?

We’ve traveled with planes and trains and automobiles. Sometimes by foot. We walked about 500 miles across Spain.

She brightens. That is uncool, she says, meaning, I think, cool. How did we do that?

Well, you did it. It was your idea, you made it happen. We were in three different countries, with Carrie —

That’s right.

— and Julio and Marie Anne.

* * *

Hmhh? I say, once again.

For the second time in the last week, she simply closes her eyes (annoyed?) and doesn’t answer.

* * *

How did all that marijuana start? she says. I didn’t just go out in the middle of the street and say, Hey, I’m a middle-aged flower girl.

I remind her. I had suggested that she try medical marijuana in the summer of 2013, to help her deal with nausea and pain. I made her an appointment with a doctor in Ridgway who is sufficiently alternative that he calls other doctors “real doctors”, and he gave her the necessary prescription to get a medical marijuana card.  So she began with joints and bongs, neither of which she liked any more than she enjoyed marijuana. By August, the second chemotherapy had failed and I was meeting a good old boy in a parking lot in Norwood to buy $550 worth of highly concentrated cannabis oil. The most well-known proponent of the oil is a Canadian, now living in Amsterdam, named Rick Simpson. He calls the dark-green substance Phoenix Tears, and he says without qualification that it “cures cancer”. There are some studies indicating marijuana oil can be effective against cancer, but it’s just irresponsible to imply anything will work for every person and every cancer.

Mom began taking the oil in rice-grain-sized portions twice a day. It knocked her out for hours the first time she tried it. Within days her planters fasciitis went away. She slept better, had less pain, and stopped taking her thyroid medication without incident. She quickly increased her dose as much as she could, and took it three times a day, hoping it would kill the cancer just like Rick Simpson said it would do. And for two months, her CA-125 scores, a test for ovarian cancer, went down. Not even 18 sessions of two types of chemotherapy had been able to reverse its steady climb. Now the numbers were cut in half!

* * *

One more question now.

Yes.

We’ve been living together here in . . . France?

We’re in Colorado.

Shit I screwed it up.

* * *

One day we’ll sit down and discuss this whole thing.

Discuss what, Mom?

The story.

What story, Mom?

How you and I ended up together.

Do you remember?

Breathes in. Not really. It’s giving me some different . . . Stares off into space.

You gave birth to me in Rangely, and you were living with Grandma Powell, and my grandpa.

They didn’t smoke pot?

No. Neither did you.

* * *

I ask her if she wants to go to sleep or to look at the photos from her pilgrimage on the Camino de Santiago.

Would I like to be excited by that? she says.

I repeat the question and she affirms it. Yes, you would like to be excited, I say. The Camino was one of your favorite things to do.

I want to go to sleep, she says, nodding slightly.

But then she says something that makes no sense at all. Not just a non sequitur (that otherwise makes sense), not just a concept that is trivial or makes only little sense. No, now she isn’t making sense at the grammar and syntax level. I believe this is new as of today.

* * *

I want a last hurrah before I die. I want to be happy just for one second, feel what the feeling feels like. Near tears at the end of the sentence.

You’ve been happy before. I say this hopefully.

She takes a moment to respond. Not in material matters.

You know that doesn’t make people happy.

I know.

You’ve been happy before, right?

More than anyone I know, she says, including me.

* * *

She has said twice that she was really tired, but she keeps coming out of her doze to ask questions. I see her hand moving repetitively. Is this the “restlessness”?

Monday November 24, 2014

“I can’t get over that you’re my son,” she says. “I mean you seem familiar . . . But I’ve missed so much,” she says, with sadness. “Where have I been?”

“You haven’t missed anything, Mom. You were there my whole life.”

“What are you, sixteen?”

“I’m forty-seven.”

She is astonished. “Forty-seven?” She turns her head away from me and mutters to herself, “I’m worse off than I thought.” She is lost in thought for a while. “I need some time. Can I have some coffee? It’s like whiskey to me. For this shock.”

* * *

“How did I meet you?” she asks.

“Well, you gave birth to me.”

“But surely you must have had a house somewhere. You must have wondered where I was.”  She is earnest.

* * *

How did I get here?

Where, Mom?

Here, she said, gesturing around her.

It’s your house.

It’s so frustrating, to be denied things that I need to have and to know.

I know it is. Do you want to try some more water?

* * *

“Where are my parents?” she says.  Another opportunity to make a person, now also child-like, feel anew the pain of losing her parents?  No.  I won’t say they’re dead and of course I won’t say they’re alive.

“They’re in heaven,” I say.

* * *

 

We have been looking at an album of old photos. The first few pages are given over to pictures of me, my cousin, Fiona, my step-father Tommy, and the close German relatives. After I sit back down on the couch, probably to record here something she’d said, she looks at the photo album again. “That doll looks so weird.”

I come around the bed to look at what she’s pointing at. It’s a picture of me, age two.

“That’s me,” I say.  “I’m looking down.”

“I’m looking down too.”

“No, I mean in the picture, I’m looking down. That’s why you just see hair instead of all of my face.”

“That’s grotesque,” she mutters.

* * *

I ask the Certified Nurse’s Assistant, Vonnie, if she had talked to my mother about how much time she had left or if my mother had made it up.

“She asked me,” Vonnie says. “I told her I didn’t know, I couldn’t know. But I wouldn’t try to tell her. We can never tell. Some people hold on for weeks. My mother lived a week and a half with only a few sips of water. Your mother’s confusion is getting worse.” Vonnie also says my mother told her, “They’re telling me my mom and dad are dead, but I can’t accept that.”

* * *

8:50p.m. I have spent the day fielding offers of help and expressions of solidarity and empathy. These people are a big part of what’s helping me to keep my wits about me. Writing helps. There’s even research that says people who write down difficult events afterward recover significantly faster. But my current hypothesis is that I’m also being buoyed by the laser-sharp focus of a crystal-clear purpose: my job is to ferry my mother to the other side.  

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